# Little Farm Girl and a New Journey



## Farmwife

A new journey is what this truly feels like. I'll start at the beginning.

_*Edit: She has NOT been officially dx yet!*_
6 months old her pains started to hit. They started as abdomen pains. Soon to follow was belly and knee pain. Grace from birth to about 11 months old had to be "help" to have a bowel movement. Her toe nails curled under (malnutrition). As she grew her pains became worse. She developed asthma and sinus problems. Acid reflex reared it's ugly head. He growth was slow. Her weight was study ( always a good eater). Around 2 1/2 yrs. old she should no more sighs, we thought great the nightmare it done. However it came back around her third birthday with a scary vengeance. Now her symptoms were worse and she started losing weight fast. Our GP how has seen Grace since birth has always taking a wait and see approach finally took blood and stool  samples over a couple weeks and found she had HIGH LDH, elevated liver enzymes and other thing. He also found she had c. diff. He was hoping that was the culprit all along. It was not. She declined more. She was taken off every kind of food and drink worth living. In this time I found this forum heart: you guys) She was sent to a GI downstate. He is the one to mentioned IBD, which we already thought.:wink: However her blood results were normal enough and he also wants to wait. He put her on Miralax and another med. Constipation is also more of a deal than diarrhea. She's had an impaction. A mother knowns her baby. We searched for answers and we meant a wonderful family that told us about there girl that has _*Mastocytic Entercolitis*_. I remember reading their story and info on this new IBD. The next day I had this info in my nurse's hands. I said this is it!!!! She said they would read it and they did. I think it shocked them that I could be right. I got a call on Friday and she said they believe I COULD BE RIGHT. She and the doc seem excited (in a sad way) that this could be it. She said on Tuesday we're to get in and we'll talk more. So their is the long short of it. I KNOW I forgot things but that will be brought up in time. 

Grace is doing better today but she's having potty accidents again. BTW Bladder spasms can be from Mastocytic Entercolitis (ME) also known as MIBD or MC. Her acid reflex has started up and tomorrow will be day #3 of no poo.
I'll post more about this new IBD in my next post.

Again this can change! We might be pointed in another direction next week?:biggrin::heart:


*UPDATE AS OF 11-5-12*
Blood and mucus in stool.
Joint pain causing limpness of the left leg and pain that has to be treated with meds.:thumbdown:
Started EN, but to sick to contuniue it, right now because of bad stomach pains.
*Update as of 11-10-12*
ER visit because of blood in stool
Stomach got worse. She's on zantak now.
Losing weight at first but now steady. Still on two shakes of EN a day.


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## Sascot

I am honoured to be the first to reply on your new thread.  Just wanted to wish you luck on your new journey!! :rosette1:


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## dannysmom

Hi - thanks for the update. I am very curious on the tests your doctor did to dx ME. Did they do the special stain to mearue the mast cells on her biopies? Please let us know what treatment Grace is given and I hope she improves!!


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## Farmwife

No Dannysmom.:yfrown: She still NOT officially diagnosed. Her GP is going off her presentation of symptoms over the years. That's why I'm cautiously optimistic about the future. This could always change. On Tuesday we will be talking about where to go from here. You do need to stain the biopsy but first we have to find a GI that will understand and do this. Our GI may or may not even know about ME. I hope he does and will get her in for a scope right away. 
I have read of two people that got dx with out the biopsy proof. As you know it's all about timing. If you have the wrong timing, you know not flaring, it MIGHT not show up.
We want to make SURE are GP does all that he can to get a proper dx.:thumleft: So whether it's ME or anything else we want to know. So please stayed tune to the TV show of my life! Grace is in the staring roll and next season might change her dx 5 times.:ylol:


It just feel good to be heading in one direction even though it might change!

Grace is having a rough time again. Lots of pain :frown:No poo for three days and potty accidents (including my bed).


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## Suzysu

Although it is sad that she has anything wrong with her, I am glad that it looks like you guys are nearer to getting some answers and some treatent for poor little Grace - big hugs xxxx


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## my little penguin

Question what was the special fecal test she has to do?
DS has crohn's but now also has ibs-c and ME fits so well given all his other issues.
Thanks


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## my little penguin

http://www.nature.com/ajg/journal/v104/n3s/full/ajg2009492_19a.html


Me paper at number 1200


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## my little penguin

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/
Another paper


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## farmerswifey

Thanks for the update, many hugs sent your way xoxo from across the Pond!


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## my little penguin

http://www.ncbi.nlm.nih.gov/m/pubmed/10671776/

So mast cells reacting in the gut can be the precursors to Ibd since they cause the cellular changes and once you have Ibd ( crohn/ UC)
Then you need the stronger drugs to stop these changes.
With ME you start with the mast cell stabilizers in a sense to stop the progression to crohn/ UC in some people.

Hope that Makes sense.

So for DS staining would be a mute point since mast cells would automatically show up.

I hope you can stop the progression early since from the papers I read today the drugs start with in order:
H1/h2 blockers
Mast cell stabilizers / singulair
Pred
Immunosuppressants
Biologics

Wishing you the best on tuesday


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## Farmwife

my little penguin said:


> http://www.ncbi.nlm.nih.gov/m/pubmed/10671776/
> 
> So mast cells reacting in the gut can be the precursors to Ibd since they cause the cellular changes and once you have Ibd ( crohns/ UC)
> Then you need the stronger drugs to stop these changes.
> With ME you start with the mast cell stabilizers in a sense to stop the progression to crohn/ UC in some people.
> 
> Hope that Makes sense.
> 
> So for DS staining would be a mute point since mast cells would automatically show up.
> 
> I hope you can stop the progression early since from the papers I read today the drugs start with in order:
> H1/h2 blockers
> Mast cell stabilizers / singulair
> Pred
> Immunosuppressants
> Biologics
> 
> Wishing you the best on tuesday


As our dear DustyKat would say, Spot on mlp.:thumleft:
A lot of times ulcer meds are used. Which might explain the mystery of why her zantec worked all those months ago. We notice her stomach pain and acid reflex is starting up again. She's also be on claritin during spring time and YES she seem to improve a bit but not healed by any means.
Also paralysis of parts of the GI track have been reported with ME. Their by causing constipation instead of D. BTW, Grace is going on day four of NO BM!:thumbdown: Two nights ago was horrible for her abdominal pain. Last night no problems.:thumleft: 

Today is our Labor Day here. A National Holiday. Off to go hiking and or to the sand dunes to climb a big pile of sand in blazing heat with a little girl who at the top of this sand mountain will say I have to go poo.:sign0085: I so don't want to do this.:yfaint:


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## Tesscorm

Farmwife said:


> at the top of this sand mountain will say I have to go poo.:sign0085: I so don't want to do this.:yfaint:


:lol:  Sounds like a fun day!! Hope all have a great time!!!


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## Farmwife

Tesscorm said:


> :lol:  Sounds like a fun day!! Hope all have a great time!!!




Out of total curiosity Tesscorm what do you do for fun outside activity?:shifty:


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## Tesscorm

Being a City Girl, we dodge bullets! :lol:

Now that the kids are older, I find we do much, much less!!    When they were younger, there was always that motivation to do something fun with them, to keep them entertained, (hiking, beaches, parks) etc.  It's something I really, really miss!!!  It's too easy now to be 'lazy' or let 'errands' sidetrack your days.

But, I did join a hiking club in the spring and will again in the fall (didn't want to commit to the weekly schedule over the summer).  Otherwise, as we live just 'outside' of Toronto (20-30 minutes), we often go into the city and 'explore' different neighbourhoods, go north to friends' cottages, not really an 'activity' but we socialize alot with friends, family (where the biggest activity is eating! :yfaint...

I'm also finding that there's been a bit of a 'change' in our lives over the past year or so and I'm looking for a new 'equilibrium'  (thank god Crohnsinct isn't closer or it seems we'd be barhopping!! :lol.  The kids' have always kept us really busy with their sports (ie Emily would have 5 weekend tournaments every spring/summer) and Stephen would have the same over the winter plus all their games and practices but, now their sports have lessened and now they drive to practices, etc. so I'm finding hubby and I have more time to do things for ourselves...  like the hiking club 

:lol: Okay, I think I got totally sidetracked from your question but... sort of an answer :wink:


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## Farmwife

Thanks I was just wondering!

What is everyone else doing on Labor Day??? 
Crohnsinct will you be putting together an amazing "clean" BBQ????


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## crohnsinct

YES!  We had ours yesterday (had to factor in recovery day)...every single item except the alcohol (a girl has her limits!) was 100% clean!  And every course was 100% balanced...complex carb + protein.  Our friends are now totally hooked on grass fed beef...Getting ready to post the recipe for dessert!  

Missed my college girl terribly...first big event she wasn't there for.  I even texted and told her we would pick her up and bring her back in the a.m. and she said no  thanks too much work to do.  

And I will have you know barhopping IS exercise...especially in the city when you have to walk blocks to the next bar...too dangerous at night to ride the subway.


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## Tesscorm

Thanks for bringing this up, Farmwife!!  Prompted me to look up the registrations!!  Am registering for a recreational photography course and the Hiking club!


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## Sascot

Hope your hike goes well and Grace doesn't decide to go poo right in the middle!  Hope she has another pain free night.
You guys are putting me to shame again (along with my cooking) with all this hiking business.  With my sore joints I cannot walk very far, so I have decided to try swimming again.  Went today and did quite enjoy it, although I do tend to come out of the changing room purple from the heat which kinda defeats the purpose of a nice cool swim.


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## Farmwife

No go for the hike. 
Grace an hour before we were to leave started sitting on the potty.
5 hours later she still off and on the potty. No poo but lots of bad pain.
I don't know how you guys take this? How long should I give this????
She did nap for an hour.
Hubby and son went out to town for lunch. That's good. My son needed some daddy time. The hubby picked up a suppository for Grace. Still waiting for him to get home.
I hope this happens soon so I can get the sample for the stool test. After she poo-poo I'm giving her Miralax.

my little penguin, we're still doing the stool test because the doc wanted to check for SIBO.  That can be a secondary cause of something else like IBD. That way the Doc has something to show the GI. He was hoping for more proof of GI track problem, since her blood test doesn't interest (the GI) him.

My hubby just called and he'll be home soon. Next time I'd rather go hiking. Smack me next time I complain!


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## Tesscorm

Farmwife, I may have mentioned this before and, really, I think you're so much 'up the ladder' in treatments, I'm not sure that this will be of any value :redface but...

when Stephen went through a time (think he was about 7, 8, 9???), we would periodically get constipated.  Glycerin suppositories worked AMAZINGLY for him!!!  He certainly didn't have the issues Grace is having but thought it would be worth mentioning. :ghug:


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## jmckinley

Glad you are a step closer to an answer! I hope you get your sample today and Grace gets some relief. I will read up on ME. Quite interested.

No Labor Day here. The kids had to go to school thanks to interference from the state. They made the school start and end dates different and forced counties to make up the days during the school year. So whole family is home, but Ryan is at school.


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## Farmwife

:dance::dance::dance: The Poo dancers are back!




Tesscorm said:


> Glycerin suppositories worked AMAZINGLY for him!!!  :


Guess what my hubby picked up? Glycerin supp.:dance:
Yes they worked GREAT!!! 
BUT................................:shifty:
They worked a little to good. Holding the collection cup under her, the poo SHOT out as if it was a bullet and completely knock the bowl and all the poo in the water. NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!:rof:

However she still went a little, so I got enough off of that.
It will be mailed tomorrow!:dance:


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## Mehita

Oh, goodness! And I thought I was the only one who things like this happened to. We've definitely had our share of shooting poo around here, but now I know to LAUGH next time instead of cry because it happens to others too!


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## crohnsinct

O.K. seriously Farmwife?!  If you are going to be in the club you have to have the necessary tools!  Do you not have a hat?  The plastic thing that sits as an insert in the toilet and does the collecting for you.  They are standard issue...along with a flashlight, slotted spoon, log book etc.

So glad she went and hope that she feels better now!


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## Sascot

:rof::rof:  I am just about to go to bed and now have a lovely image of shooting poo to take with me.
So glad she managed to go :dance: and you managed to collect enough to send away.  Hope she has a good day after all that


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## Farmwife

crohnsinct said:


> Do you not have a hat?  The plastic thing that sits as an insert in the toilet and does the collecting for you.  They are standard issue...along with a flashlight, slotted spoon, log book etc.
> 
> QUOTE]
> 
> Flashlight check!:kiss:
> Slotted spoon check!:kiss:
> Log book check!:kiss:
> Book next to the potty check!:kiss:
> Mom's hand to hold check!:kiss:
> Potty "hat" NOOOOOOOOOOOOOOOOOOOOOOO:voodoo:
> My kids put the darnedest thing on there heads.:shifty:
> Did you know that a girls potty seat can fit on a child's head.......:redface:
> or did you know that a women's med. size sock can indeed fit over a boys head.:blush:
> Yes I know those "hats" can be thrown away but.................
> Letting my kids see something places in the potty brings me to fear of what they believe should go in the potty.:rof::rof::rof:


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## my little penguin

saran wrap over the toilet will work in a pinch or
 paper dixie bowls ( don't ask how I know:redface


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## Jmrogers4

Glad you are one step closer to finding a dx.  No hiking here yesterday, still too smokey from all the fires.  I cleaned and reorganized the pantry, fridge, tupperware cabinet and medicine cabinet -been putting it off way to long!!!  It was the only free time I'm likely to have for a while between football practice everynight and a game every saturday through October, then skiing season hits and it is up the mountain every weekend (although truth be told there are weekends my knee just hurts too bad :wink: that I must stay home all by myself and I certainly can't do any cleaning/organizing, you know because of the knee pain - I did have ACL replacement surgery several years ago) :lol:


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## Farmwife

Jmrogers4 said:


> (although truth be told there are weekends my knee just hurts too bad :wink: that I must stay home all by myself and I certainly can't do any cleaning/organizing, you know because of the knee pain  :lol:


Jmrogers4

Well now thats not your fault. Poor thing to stay home by yourself. No extra clean up. No big meals to make or clean up. Poor thing you suffer so!:hug::rof: Let me now when this happens I will tell my hubby a friend has taken ill and I MUST go help her.:rof:


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## Jmrogers4

Farmwife - You're on! We can tell him that you can't leave me to waste away from not eating (although I could certainly not eat for several weekends and be in no danger of wasting away) and we don't have to tell him there are several restaurants in the area that deliver.  After all I do live in the wilds of Idaho.:ybiggrin:


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## jmckinley

Yay for poo for Grace! What was that  little thing again....  See if that works...


Oh Mehita, you are definitely not the only one! I can't count the number of times I have cleaned the bathroom and wondered how in the world spots got where they are! "Are you even sitting on the toilet or just standing in the vicinity?"


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## QueenGothel

I have been back tracking your threads and I just found this awesome updated one. Trying to catch up. Before I left I was reading as much as I could and didnt realize you had started a new thread while I was at camp.  Oh well now I am all up to date.  With all the old ones and this one.  Duh.  

The hat is a necessity.  I steal a stack of them when Rowan goes in to the big H.  I have none at the moment.  Hoping I never need them again of course.


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## Farmwife

Yes Myreinhard this is my NEW thread but:shifty:................the old one is having a hard time dying off.:ybiggrin:


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## Farmwife

Just an update:
Grace did do some damage when she went poo last time.:frown: We decided to have an official meeting with the Doc and head nurse tomorrow. I like the fact that we can just walk in and talk to them briefly but I always feel bad for taking time away from other people. 
Now given her injury she need to be examined.:thumbdown:

She's on twice a day Miralax now. She did go poo again to day but it still was horrible even though it was liquid stool. We ended up giving a suppository to her. Helped with in a minute. Still she struggled.  Her appetite seems to be declining again.
:thumright:She's still been very happy, so I guess what more can I ask for.:thumleft:


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## crohnsinct

Farmwife said:


> so I guess what more can I ask for.:thumleft:


Scopes post haste! 

So glad Gracie is happy.  She is a real trooper and tough kiddo...just like her dad!


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## my little penguin

So glad you can get into the docs. Hope the miralax keeps things soft.
Glad she is still happy.
We will have DS on miralax till the end of time just too risky with his rectal prolapse .


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## QueenGothel

Did she tear? Was there blood?  Poor Grace.


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## Farmwife

No blood thank GOD. Well yet.:shifty:
To the extent of the damage I'm not sure yet.
I hope the doc will be able to tell.
She went poo again last night, two rounds of miralax to make that happen.:ywow: 
She still was in much pain even though it was liquid. 
Had to give the suppository to help her out.
 Never again will I go 5 hours of her in pain on the potty again. :voodoo:
However this time the area looked better. Still not right but better

Well I best get off this computer and get my school together. 
I decided to start two weeks later because of my surgery.
 No sense in starting for a week, than taking a week off.
 I still have to get all my supplies.
 Now my blessing is I can get all the back to school stuff on sale!:dance:


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## Tesscorm

I hope today is a better day for her! :Karl:


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## QueenGothel

They did tell me with the prolapse to no let them sit for to long on the toilet.  Also to have something under her feet and a potty seat.  Don't know if she sits on a regular toilet or not but we went and bought on of those rings that fits on the toilet.


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## Sascot

Hope she has a better day.  Did the doc and nurse have a look at the lump?  Might have to try the glycerine suppository on Amy in the next couple of days, glad to hear it works.


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## Farmwife

Thanks Mary. 
The doc said if we don't see daily improvement, which we have, that imagining has to be done. 
He said that the prolapse wasn't that big. 
Sure looked big from my end.:blush:
 Any way it has gone way down and I hoping it will be gone for good.
 The doc said she needs to have liquids to soft stool from now on.
 Grace will have 3 servings of Miralax a day.

Lots more to say but I'm off for now. Sorry to leave you hanging!:kiss:


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## crohnsinct

Oh yeah cliff hangers...just another one of your ploys to get more hits as well all keep checking to see if anything new...I am onto you Farmwife!  

Liquid and soft thoughts flowing your way...when are you gong to new GI?


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## Farmwife

Fine here's a fast summary to make our friend crohnsinct HAPPY!

Second opinion-Yes:dance:
ME-Yes possible:dance:
Prolapse-Wait and see
Blood Test-Back by Monday
Diet- SCD Diet- What is that and why don't I like it already?:shifty:
Stool Test-Back by next Friday:tongue:
Test-MRE :dance:and others?
Scope-No not yet. That's a GI call


Grace put on a half  pound.:dance:
Happy crohnsinct:rof:


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## crohnsinct

Don't you remember?  I am a grumpy old lady...I am never happy..at least according to forum lore. 

Honestly, I will be happy when Gracie has a diagnosis and is on her way. 

SCD..yes, that is how we came to clean diet.  It looked too hard for me (and our GI and nutritionists opinion was just plain clean was good enough for O)..actually I just couldn't get past the marrow soup thing BUT I have read lots and lots of wonderful things about it and I think it is great that your doc is looking at nutrition to support Gracie's healing so score one for doc. :cheers:

Doc in support of a new GI...score 2 for doc.  :cheers::cheers:  

1/2 a pound...woohoo! Score lots for Gracie!  :medal1:

Waiting for test results is what I do best...look up patience in the dictionaryand you see my picture.  I just love waiting :whistleinnocently:


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## Farmwife

No it's a second opinion crohnsinct!
 Plus Mott Child. has an MRE scan.
We just want to go to the guy that has the most experience with ME.
We'll travel a whole lot further if we had to.

Oh, is toxic mega colon common with IBD?
The doc is wondering about that now. Have no idea why.


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## kimmidwife

I have been away for a couple of days. We went to Disney for labor day. We had bought a special ticket back inApril and had to use the rest of it. It was fun but we all got sick . I M starting to feel a little better. I am so glad you are starting to get some answers. I have been thinking of you all. My little one also has major issues going poo on and off soI know how rough it is when they sit there straining. It is just rough! I am glad she finally went and hopefully those answers will finally come!


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## crohnsinct

Oh so wait...you just go to Mott and see ME guy and get a diagnosis and treatment plan and then go back to the other guy who was willing to wait until Gracie wasted away to nothing writhing in pain on the floor to manage her going foward? Believe it or not, I might be down with that because with the dx and plan he will be forced to actually do something...I think....

Remind me to give O's doc a big hug next time I see him.


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## Catherine

My two cents worth.

Your daughter doctor is now board that there is something wrong with Grace which is great.

I think he may now looking in everything that could cause her symptoms (eg mega colon) and has started trying to rule things out. Maybe also a bit of him thinking out loud.


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## Suzysu

Sending healing thoughts Grace's way - when is your surgery booked for? soon? good luck! xxxx


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## QueenGothel

Rowan was tested for TMC a few times.  They can determine by X-rays. It is a constipation issue.  I can be pretty scary.  I would think she would be much sicker if she had it though.  Fevers are usually always present.  They put Rowan on antibiotics to get things moving to avoid TMC. Hope all goes well.  When are you supposed to get the second opinion?


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## Tesscorm

Haven't been saying much...  just quickly jumping in and out   But, am thinking of Princess Grace and watching for your 'cliff hangers' and updates! :Karl:


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## kimmidwife

Just wanted to say thinking of you guys today and wondering how Grace is doing?


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## Jmrogers4

crohnsinct said:


> SCD..yes, that is how we came to clean diet.  It looked too hard for me (and our GI and nutritionists opinion was just plain clean was good enough for O)


What is clean diet we have been trying SCD/Paleo but it is extremely hard to stick with


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## crohnsinct

Clean diet is pretty much going unprocessed...eating foods how they were found in nature or extremely close to it.  Makes it hard when it comes to cheese because it doesn't come out of the cow as cheese but come on!  I am Italian.  Cheese is a necessity of life for us...so I go to the cheese shop and get the most unprocessed I could find and we cut down...a lot!  All Whole wheat breads etc.  We have discovered lots of new grains, seeds, flours etc..having so much fun.  I posted in the diet and nutrition section about it.  We have had great results for every family member and their various issues...I have even been asked by my friends if I am using a new product on my face cause my wrinkles are fading and my skin tone and complexion looks great.


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## Naturelover

Glad to hear things are moving forward. Been dealing with a lot myself lately. Not feeling that great, but getting all sorts of different findings from different test and not done testing yet.

Hope the prolapse settles back down. MC can be caused by constipation and can make constipation worse. Visious cycle. Daughter has the MC and takes mega meds for mega constipation. She will be getting a motility study done at Johns Hopkins. Don't know which one yet nor do we know the date. The doc will call us in a week or so. Long story there.

Mega hugs and prayers coming your way, NL


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## Suzysu

Hows things today? xx


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## DustyKat

Bloody norah! I am on holidays and quickly losing touch cause there are so many threads to get through. I think to myself I will start at the bottom (how appropriate is that!) and work my way up but all the while this 'new' thread is fast getting 'old'! :eek2: 

Seriously though, it is so good to hear that you may get getting some solid answers and relief for your little princess. :hug:

I know that timing can be critical with ME but please tell those F&%*ing doctors to stop fiddle fart arsing around and just do a bloody upper and lower scope! It's about bloody time they went in and had decent look, bless her. Hell, if they said everything looked normal would you be any worse off than you are now and at least it would give you some peace of mind either way. Doctor rant over. :ybiggrin: 

Thinking of you, always. :heart:
Dusty. xxx


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## crohnsinct

YAY! YAY! YAY!  Dusty has joined the scope party...now maybe farmwife will listen...see farmwife...Dusty agrees with me.  I am not just being an impatient old bag...o.k. well yeah maybe I am in general but Dusty has just justified me...sad when I am relying on an old maid living in sin with no friends to justify me huh?


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## crohnsinct

Who is norah and why is she so bloody?  Fiddle fart arsing!  I like that one almost as much as that other saying...what was it again.....


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## DustyKat

> Dusty has just justified me...sad when I am relying on an old maid living in sin with no friends to justify me huh?


Well hush my puppies and prune my magnolia's! Too bloody sad if you ask me! :ylol: 

Bloody Norah? She was some chick back in the 17th century that was a servant to some wealthy guy and she had a habit of killing other servants, one with a stick of celery no less! Jesus, they must have grown some pretty mean celery back then. I reckon you lot should be more inventive and discard the rolling pin and head to the veg instead.

Dusty.


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## upsetmom

Farmwife i agree with everyone Grace needs to be scoped 
just keep nagging till they do it ..... i had the same problem with my daughter it took 8 months of practically begging the doctor for her to be scoped and i'm glad i did because her whole bowel was inflammed .. just keep pushing them


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## my little penguin

I tenth that .
Only one visit was needed for my other son to get a scope as a rule out.
 In fact even before dx only one visit then scope  for DS.


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## Farmwife

crohnsinct said:


> YAY! YAY! YAY!  Dusty has joined the scope party...now maybe farmwife will listen...see farmwife...Dusty agrees with me.
> 
> QUOTE]
> 
> 
> :ywow:Oh dearest :heartusty:heart: since I know you feel that way I'll jump right on it! If only had had another friend as wise as you that would show such care and tenderness toward my ONLY little girl. THANK YOU! To bad their's not more like you.:ybiggrin: (crohnsinct :ytongue
> 
> 
> Susyzu my surgery is on this Tuesday. I keep telling my hubby I want to cancel but he says I need to be well for the tough days ahead. Him and his logic.:ybiggrin:
> 
> Update on Grace:
> Horrible night last night. Bad knee pain. Pale as a ghost.
> Her prolapse seems to be improving. She's having liquid stool now for two days. At least she's not backed up. She still has to push way more than should. I'll see if I should back off the miralax when I call the GP's office. I'm hoping the first part of her labs will be back. I'm interested what her LDH is at. It should have come down by know. :shifty:Her WBC I'm praying is not falling any further.:shifty:
> 
> To everyone's request of having her scope. I've never once said they couldn't. They didn't want to. I'm I to blame for not being pushy enough? Probably. But I'm the one to hold her as she cries and ask why she's in pain. I'm the one that makes sure all her meds and v-mins are given at the right time. I'm the one she has a death grip on as she's in pain on the potty. I'm the one rubbing her belly or joints as I try for hours to get her to sleep. I guess what I'm trying to type is I resent the fact the the MEDICAL PROFESSIONALS can't do there jobs. So now I have to take more of my time to do it. There my crabfest (new word) is over.
> Y'all are better the therapist. I don't have to pay ya!:ybiggrin:


----------



## my little penguin

Hugs
Fwiw the pain / prolapse did not go away until pred was introduced even with liquid stools for a month.
Hope she feels better soon.
Btdt with the crying tummy toilet joint pain.
Unfortunately that was when I would call and rant to the Gi nurse


----------



## Farmwife

Thanks mlp. My doc said she's at that in between age of a prolapse fixing it's self. I guess 4 yrs of age is the cut off age. Then after that the chances lesson to have it fix it's self.
I think it is improving. Thank God.


----------



## my little penguin

http://emedicine.medscape.com/article/931455-overview

Above link is a good place to start.
 Age of 4 is correct for self fixing provided the underlying cause is fixed that is the key.


----------



## crohnsinct

First off LMAO..Thank God Dusty saved the day. :worthy:

Second...I hear ya sista on the surgery dilema...hard decision to make and I have decided to have it and regretted and then hold off and regretted.  Goes with being a mom...can never make the right decision.  What is the recovery time?  Hubby is right (but don't let him know or word will get out and the balance of power for the sisterhood will go off) , you have to be 100% and strong for what is about to come...and since it doesn't seem like additional testing is coming next week if you could recover in time I say go for it.  Do you have a good network you can rely on there? If not say the word and we will all decend upon country Michigan and show them who is boss!:tank:

As for the scopes...um yeah...when did you graduate med school?  Where did you do your residency?  How much do you get paid to make these decisions?  You crabfest all you want it is totally warranted and deserved!  Throw in a few stabbies...he always makes me feel better :voodoo::voodoo::voodoo:


So it was rectal prolapse?  Yes about 4 was when my oldest had it...fixed itself. 

:hang:


----------



## Farmwife

GREAT NEWS!ika:
Grace's labs came back normal "enough".
I didn't question the "enough" and at this point I'm happy with that.

The stool test should be back by Friday of next week.

BAD NEWS,:confused2:
Grace is starting to act as if she's getting back up even though she's on two big doses of Miralax.

Still her labs are better. ika:
:emot-waycool:My bubble might be able to be put back together by Sunday


----------



## Sascot

Wow, turn my back for a second and you're onto page 3 of this thread!! 
Sorry Grace is still not feeling great but yay for almost normal blood tests!
Good luck for your surgery - yes I too agree it is best for you to get it over with and up to full strength so you can deal with everything.  Holding fingers and thumbs that the prolapse continues to get better.


----------



## Suzysu

Im with your hubby - you need to have the surgery asap so you get back to 100% health so you can be there for Grace. Glad her bloodwork was normal 'enough' but not glad she is still in pain. I hope the weekend goes ok. xxxx


----------



## DustyKat

Why didn't you use the...:crab:...when you had your crabfest! :ylol2:

Good to hear that your little princesses bloods are okayish and I hope that bloody prolapse goes back to where it belongs! :voodoo: 

What's the problem??? You are a Mother, nurse, teacher, sex goddess, domestic goddess, taxi driver, hairdresser, chef, bank teller and no doubt some sporting coach so why shouldn't you be a doctor! 

Good luck with your surgery hun...sending loads and loads and loads of love, luck and healing thoughts your way...:goodluck: and :getwell: 

Dusty. :Karl:


----------



## Farmwife

Just a quick update before the craziness of my day begins.
Grace is having a good two days. Which is a blessing.:thumleft:
 I didn't want to head into my surgery having a sick kid. 
She did have slight back pain off and on yesterday but nothing that held her back. :thumbdown:
Her Miralax is still working at two half cap fulls a day. Her prolapse is completely back up and only causes SLIGHT problems during BM's. Hey I'll take it.:thumright:
Hopefully on Thursday or Friday I'll hear about the stool test. :shifty-t:


I'm off to clean my house top to bottom. My mom:sign0085: will be helping around here for a day or two. She is the kind of woman to look through my cabinets or under my couch to see if I'm living up to her standers. I figure if she starts to complain after my surgery I'll pop some more pills.:ylol: Still I'm thankful for her help and my twin is going to help out to.
After recovery time, my family and I will be "eating clean diet" I know that's shocking but I think that will work best for all of us. crohnsinct says we can do this. So will give it our farm hill best.:thumright: 
I mean if a city girl can do it, we should have no problem at it, RIGHT?

So good-bye for a few days and I hope every one does well.:rosette2:


----------



## DustyKat

Thanks for the update hun.  

It is so fab too read that your little princess is doing well at present! May it keep on keeping on!  What a relief for you...:hug: 

Sending loads of love and luck for your surgery. You will be in my thoughts hun and you will be sorely missed whilst you are away! Good luck and I hope you have a speedy and uneventful recovery. :goodluck: 

Dusty. xxx


----------



## kimmidwife

Good luck with your surgery! Sending my prayers your way. Hoping all goes smooth and you have. A fast recovery! Glad Grace is feeling better too.


----------



## Tesscorm

Good luck Farmwife!!!!  Hope all goes well and you're home and 'good as new' in no time!!!

Am glad Grace is feeling better!!! 


But, reading your post, what struck me was "OMG, there are two of you!?!?!?"  :lol:


We'll miss you!  Hurry back! :ghug:


----------



## crohnsinct

So glad Grace is having an easier time.  I hope it gets better and better. 

Good luck with the surgery and recovery!!!!  We will be praying for you. 

Eating clean? ...see I am really your idol and you want to be just like me!


----------



## Suzysu

:goodluck::getwell:
I hope it all goes ok! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Sascot

Just wanted to wish you well for your surgery.  Hope you have a speedy recovery :goodluck:


----------



## my little penguin

:well:  and lots of luck on your medical adventure .
Hope your mom is "ok" and you don't need too many pain pills.:lol2:


----------



## Farmwife

All went well for my surgery.
I'm up and moving (slowly) today.
Grace has had some great days also.
Her loss of bladder happened a few time and yes I notice the two doses of miralaxare not working as well. I'll up her to three.:voodoo: Hopefully by Friday :wink:I'll hear something from the doc about the fancy stool test.

Oh yes my mom come over and total cleaned out my entry way. :dance:I love that woman!!!:heart:


----------



## upsetmom

Glad surgery went well :getwell:


----------



## Suzysu

YAY!! glad that nasty old gallbladder is long gone and glad it all went ok! I hope you are able to take it easy and don't have to take too many drugs  
Glad Grace is ok and hope the TID miralax does the job.
Send you get well thoughts xxxxxxxx


----------



## crohnsinct

YAY YOU'RE BACK AND DOING WELL!!!!!! SO GLAD!  
:mademyday:


----------



## Tesscorm

Happy all went well for you and Grace is doing better!  Woohoo!!  :banana:  

Hope you get some rest for a few days!! :ghug:


----------



## Sascot

Glad it went well!!  Wishing you a very speedy recovery :ybiggrin: Hope the extra Miralax does the trick for Grace.


----------



## my little penguin

Huge glad your done. Get better soon
Hope the extra does the trick.


----------



## Clash

Glad you are surgery went well, hope recovery is quick and painless! So glad to hear Grace has had some great days and the miralax increase helps her out!


----------



## jmckinley

Glad your surgery went well and Grace is doing better! 

Glad you got your entry cleaned. Maybe your Mom could come to my house...


----------



## Suzysu

............ and my house!!!!!!!! xx


----------



## crohnsinct

Does she cook too?


----------



## Tesscorm

crohnsinct said:


> Does she cook too?


Did this question come to mind before or after your carrot fiasco? :lol:


----------



## Clash

Ummmm...I missed the carrot fiasco, which thread am I behind on?


----------



## Tesscorm

Much ado...


----------



## Clash

Ahh I must check it out crohnsinct, carrots and fiasco...three words that are guaranteed to entertain


----------



## Farmwife

Yes y'all can have my mom.

I'll set the first bid at 1000,00.

My mom is a take it as is package.:soledance:

Meaning if she looks at your hubby and tries to give explicit detail on how to make more babies you can't return her.

Or if she goes through your medicine cabinet and tells everyone your a drug dealer you have to keep her.:blush:

Maybe she'll start to clean your house and find your under-ware door and then tell everyone you might have some "Poo-poo or Balder issues". But it's OK she'll tell every one because she bleached your under-ware for you. Remember you have to keep her.:ywow:


----------



## Farmwife

I'm still recovering. Now my belly button hurts like the dickens. Knowing how things go I'll be the one with a hernia. GREAT!

Grace is well but she might be heading for another impaction.:ywow: Poor girl.
I'm off to bed. Still trying to put myself back together. It might take years.


----------



## my little penguin

Hugs phone ate my post


----------



## crohnsinct

IT'S FRIDAY!!!!!  Yipee!  Almost 9:00 a.m.  Do you have your phone ready to call the doc to get results from the fancy pants stool test?  I am going out for a while but will be checking when I get back (obsession and all) so make sure you call...

Sorry about the belly button.  Hope it settled down overnight.


----------



## Tesscorm

Too funny about your mom!  :lol:  I already have one like that!   I can't begin to tell you how many of our conversations start with her saying "now don't get mad, I'm only giving you my opinion..." :yfaint:

I hope you're feeling better soon! :ghug:  And, hopefully, Grace continues to feel well and NO impaction is brewing!!!!


Crohnsinct - quick drive to Magnolia's??


----------



## QueenGothel

Miralax miralax miralax.


----------



## Farmwife

Thanks every one. Myreinhard she's on three doses of Miralax a day.
She just went poo and I'm breathing easier. Now that crohnsinct is off for awhile I'll tell you all :shifty-t:that I'm waiting for them to call me. That's what they told me to do. So here I wait and wait. This is what I hate about IBD. For 4-5 days she's been good. I so don't want to deal with this. I just want it to disappear and our life's to go on. Of course keep in mind I medicated and upset that I'm not healing as fast as I use to. 
I hate getting old. (HUSH crohnsinct):yfrown:


----------



## crohnsinct

Haha my running date got pushed off and I saw that!!!!!!!  

What is that they say about payback????????

So they gave you the ole don't call us we'll call you schpeel?  O.K. BUT if they don't call, can you call at the end of the day so you aren't tortured wondering over the weekend?

I'm sorry it is taking you a little longer to recover...honestly...I am not enjoying the peaec and quite and lack of taunting while you heal...honestly I'm not.......


----------



## Suzysu

WOW I miss so much being in the wrong time zone!!
I'm glad Grace has pooed
I hope your belly button gets better soon!
..........................................................oh and CALL THE DR!!!!!!!!!!!!!!!!!!!!!!!!!!!! (then tell us the results) xxxx


----------



## Tesscorm

Farmwife, I wish I knew how to attach this picture but...  a little something as a tribute for your belly button! 

http://cutebellybuttonringsblog.posterous.com/cute-moo-moo-cow-belly-ring


----------



## Farmwife

WOW, what can I say????
:ywow:
I'm sure my hubby would have a melt down if he saw anything that resembled a cow in bed.

I'm sure that my dad would rush over and ask why in sam hill do I need to decorate that area?

I'm sure my twin would say what's the point of that if your fat and can't see the belly button?

All good points to ponder?:ytongue:


----------



## Tesscorm

:rof:  :rof:  :rof:  But, it sounds like your poor belly button needs a little pampering with a little treat!  And it's so cute... 

My daughter wears no jewellery, refuses even to get her ears pierced because "it'll hurt" but she did get a belly button ring! :yfaint:  Tried to explain it would probably hurt there more than her ears but...  according to her, "it didn't hurt AT ALL, mom!"  Yeah, sure... :lol:


----------



## Farmwife

No stool test back yet!
I called and the nurse said she hadn't received it yet. 
The nurse said their all awaiting the results. They will call when it's in.


----------



## Tesscorm

OMG!! I hate the WAITING!!! :ymad:  Not sure if there's a time difference between where you and I are, so am still hoping you'll hear something today!

Hope both you and Grace are well tonight! :hug:


----------



## Sascot

Hate the waiting too!  Hope she calls soon.
Hope your poor belly button stops hurting too - bet you're doing too much (the joys of being a mom) and not resting enough?


----------



## Farmwife

Me do too much?????
Now if y'all don't mind I have to go take my homemade bread out of the oven. Then stick my homemade sticky buns back in for an half hour. In this time I need to do a load of laundry and bed time routine with the kids. Last but not least try to talk hubby into helping me clean up the flour BOMB that went off in the kitchen.


----------



## DustyKat

Good grief! I need a bloody GPS to navigate this thread! :eek2: 

So good to hear the surgery went well hun and you survived! ika:

Fab to hear that Grace dropped the kids off at the pool!  

Sucks that you are still waiting for results! :voodoo: 

Dusty. :heart:


----------



## crohnsinct

DustyKat said:


> Good grief! I need a bloody GPS to navigate this thread! :eek2:
> 
> Dusty. :heart:


This is farmwife's thread...what did you expect?  

FARMWIFE: STICKY BUNS ARE MOST DEFINITELY NOT CLEAN! :eek2: Or are they your farewell meal?:bigwave: And I hope that was a whole wheat flour bomb that went off in your kitchen


----------



## Farmwife

crohnsinct said:


> FARMWIFE: STICKY BUNS ARE MOST DEFINITELY NOT CLEAN! :eek2:



They were absolutely "clean" crohnsinct!

I put those yummy to my tummy sticky buns on my very "clean" plate and devoured every last piece of sugary goodness until my plate was "clean".:rof:

That's what we farmers call "clean eating"~:kiss:


----------



## Farmwife

Update on Grace.

6 to 7 good days. Blessing.
Last night severe pain in left leg. Limping and falling.
Today low grade fevers with slight tummy pain.
Tonight runny nose. Also pain in her "female area".
I did up her to 3 doses of MiraLax.

Well thank the Lord above her good days lasted for the length of my recovery.

Stool test should be in on Monday or Tuesday.

We need answers.

Good night y'all.:hug:


----------



## Catherine

Thinking of you all.


----------



## Lewiss mum

Good your story is so like mine , you try andbtry to Eli ate things but not much helps we had Lewis on no wheat no diary no gluten no msg, nothing worked and u like me went armed with info for the docs, we were very lucky to have a fantastic paediatrician who has been here and fought our corner and shouted and ranted at the hops , in England u have to fight for treatment because the nNHS is so stretch dnad waiting list are ridiculos it took nearly twelve months for lew.ya colonsopy and upper gi , but got the diagnosis and now it's n to stage 2 whatever that may be , keep fighting for the answers need and don't be discouraged , a mothers instinct is better than any doctors test believe me I no . The posts about collecting poop has made me smile and laugh sitting in the bathroom at 3 in the morning singing nursery rhymes to help Lewis relax yep I bet we've all been there lol. Xxxx


----------



## Sascot

Sorry to hear Grace is feeling bad again, although that was great she felt ok for your surgery!  Hope they phone asap about the stool test so you can get some answers and treatment!


----------



## Tesscorm

Sorry Grace wasn't well!!  Hope she's feeling better by now...  and that you get those results today!!! :ghug:


----------



## QueenGothel

You do need answers... Ugh this waiting sux.  Anywho female area.  Like yeast? Or UTI?  I she peeing?  When Rowan got a UTI it burned to pee pretty bad and she just wouldn't leave it alone. Hope she is feeling better.


----------



## crohnsinct

Farmwife you are off the hook as I am leaving and won't be home till 9:30 tonight.  I certainly hope I log on when I get home and find some results.....maybe I should bring my laptop to swim practice for good measure...


----------



## Tesscorm

Crohnsinct - I hope you are able to spend lots of time with your daughter!


----------



## Farmwife

crohnsinct don't bother. I just remembered the doc is out of the office on Mondays.:stinks: 
In his defense he goes to nursing homes to see patients.

So Tuesday will be the day. I hope.:shifty:


----------



## Tesscorm

:ymad:  Sorry you have to wait one MORE day!  Ugghh!!!  How did it go this morning with your little boy?


----------



## Sascot

AAAH, how frustrating!  Guess what, I managed to borrow my daughter's laptop so I could check if you had heard anything while sitting spending quality time with my son in his room.  He's on his computer and I am on the laptop:ylol2:,  sign of the times!


----------



## crohnsinct

Oh good!  I am home all day tomorrow as my running date got cancelled due to the severe thunderstorms...I can post hourly looking for results starting at 9!


----------



## LilyRose

Just to say 'Thinking of you'.
LilyRose


----------



## QueenGothel

Waiting... (fingers) tap tap tap


----------



## crohnsinct

9:15!


----------



## Clash

Haha Hubby just called and asked what I was up to, I said waiting on stool test results,  Huh, C didn't have a stool test? Oh is this isn't for C!! Well alrighty then!!:ylol:

Hope you get the results soon!!


----------



## Farmwife

Down with the flu.
So far thank God the kids don't have it.

My hubby will be in from work soon to wait for phone call.

Remember the results are coming from a lab in the med-west. 
It's the labs timing not ours. The nurse said even the receptionist knows it's coming.

I'm going back to bed. Y'all sure are sweet and impatient.


----------



## Lewiss mum

U need some tlc lady, lots of chocs and daytime tv that always makes me feel better , get well soon hope u get the results u need from the lab ,x:getwell:


----------



## crohnsinct

Oooh the mid west.  Well then that explains it


----------



## Sascot

Hope you are feeling better soon!!  Doesn't that flu virus know us mom's aren't allowed to get sick?
Well, I'm off to bed, so will check in tomorrow


----------



## izzi'smom

Finally getting caught up on threads...whew!! Feel better soon, mama. Hurry up, wonderful news from test results! Thinking of you <3


----------



## crohnsinct

What the H?  Are they transporting the results on horseback?


----------



## Tesscorm

:rof: :rof:


----------



## Farmwife

WAIT:shifty-t:, WAIT:shifty-t:, WAIT:shifty-t:!

Just called and a different nurse said it can take up to 4 weeks to get the test results back.:thumbdown: GREAT!:thumbdown:

I said her joint pains are worsening. She said we'll do the blood test for her joints. I have no idea what it's called.
However she has to be having it and get to the lab before it's stops. The order will be sent and it will be up to us when we go. Of course the lab is closed at night. The good news is the lab is 4 miles from the farm! So now we wait yet again.:yfaint:

crohnsinct will be proud. I went shopping for my semi-clean eating diet.
It's a bit of a challenge to do this with a family of sugar and process food eater but I think to start off with this will be good. :rosette2:


Grace is happy but tired and pale most of the day.
Also something news.:yfrown: Diarrhea with out being on MiraLax.:sign0085:
When I was ill for three days. Two of those days my hubby never gave her MiraLax. Now she has very loose stool and back pain. 
Should I be giving her the MiraLax again or wait till she misses a day.
Yes, I'll be calling the GI today to ask. I just want to see who  can answer me the fastest.:thumleft:

:rosette2:


----------



## my little penguin

Typically we have cut the dose in half. If it continues then cut again since the last thing you want with prolapse is hard stool.

Let us know what the Gi says


----------



## Farmwife

:thumleft:Good job mlp. You win!:thumleft:


:rosette2::rosette2::rosette2::rosette2::rosette2::rosette2::rosette2:


----------



## Tesscorm

but I sent you hugs first!


----------



## crohnsinct

4 Weeks?!  The committee didn't know that upon approving this test!  I am pretty sure I speak for the whole committee but we were duped!  Now we have to wait another 3 weeks before they even approach the topic of scopes?  Are you getting the MRE or M something else in the meanwhile? 

I call it a tie because although MLP had the technical answer hugs are the answer for everything in my book so you are both winners!  And yes, our experience with prolapse is they want to keep things nice and soft for a good long while.  

Clean diet: YAY!  You can do it!  I know you can.  If my family can you certainly can.  I may have told you this but Friday night while I was stalking the forum during swim practice my youngest and I were at Dunkin Donuts.  I got a tea and decided to treat her to a donut (got one for O also).  She took one bite and told me it was totally disgusting.  It is amazing how when you detox off that junk and reawaken your taste buds you don't enjoy that crap anymore...although that doesn't explain our enjoyment of fried dough on Saturday....oh yah the fried dough didn't have chemicals, preservatives etc.  Nice clean fried dough with poisonous powdered sugar and deep fried in oil not fit for human consumption.  Yeeuumm!  

Also at infusion Monday O weighed in at a little over 80 pounds and has grown 1 3/4"...good food in gets results.  And everyone there was remarking at how incredible she looked...even has some junk in her trunk (like mother like daughter)


----------



## Tesscorm

:lol:

I agree re the 4 week wait!!!:ymad:  Farmwife, why wouldn't they tell you that before! :ybatty:  You (us too ) have waited so long for some definitive answer for Grace!  Ugghh!  (No advice re the miralax )

Re the clean eating!!!  Yay Farmwife - good luck!!!  I don't have huge sugar eaters at home but Stephen, in particular, is a processed food boy!   I'm still struggling to convince him that Sub sandwiches (bread, meat, cheese and sauce only 'cuz he won't eat veggies!) are not a 'healthy' choice - possibly 'healthier' than a Big Mac but still not 'healthy' :lol:  Oh well...  little steps... 

O - amazing!!!  Good for her and good on mom for all that clean eating example you're setting!  You have inspired me and I am _trying_...  Waiting and waiting for our Whole Foods to open...  but, won't be for a while yet!   (_Junk in her trunk_...  according to my daughter, this is now a good thing!  :lol


----------



## crohnsinct

Tess: totally small steps...Will he move that sub to wheat bread...then after that see if he will slip one small piece of lettuce...and so on.  Are they purchased out?  If so, maybe just make it at home...you would be surprised at how much of a difference just that makes.  Lunchmeat...ugh...that was the hardest for us to give up.  Now sandwiches are chicken, turkey, tuna, meat loaf...I just had whole wheat bread with a hazelnut chocolate spread (my little cheat similar to Nutella but all organic and only 7 grams of sugar as compared to 21 in Nutella) a  sprinkle of granola (all clean of course...sweeened with honey) and sliced apples...yeeuumm.  

And yes I bribe my kids.  If they don't eat lunch from school caf and bring their lunch I let them keep the money they would have spent...hey money talks!  

Yes we can all thank J Lo for making the junk in our trunk desireable!


----------



## QueenGothel

Farmwife said:


> Diarrhea with out being on MiraLax.:sign0085:
> When I was ill for three days. Two of those days my hubby never gave her MiraLax. Now she has very loose stool and back pain.
> Should I be giving her the MiraLax again or wait till she misses a day.
> Yes, I'll be calling the GI today to ask. I just want to see who  can answer me the fastest.:thumleft:
> 
> :rosette2:


Don't skip maybe titrate it down. Rowan used to get the runs and a couple of times it was bc of a hard stool being backed up and the soft D passing around it.  I definatly would not skip a dose.  It is a no no with prolapse.  :stinks:


----------



## Suzysu

4 Weeks!!!!!!!!!!!!!!
I hope you get some answers sooner than that.
oh no for the joint pain and the diarrhoea - I hope she has some good days soon.
YAY and good luck for the clean eating - we saw Freddy's GI again today and are about to start a clean-eating regime - I find it all so daunting and am not sure we can do it - but I think it will be good for all of us. - we can compare notes on how our families are getting on!!
I hope Grace starts to get a few good days soon! xx


----------



## crohnsinct

Suzy...slow and steady wins the race!  Just start with all new purchases going foward being clean...or start with one category ie: whole grain pasta instead of white or cut out a certain processed snack ie: store bought granola bars and make them yourself.  You can do it!  

Funny but for some reason this a.m. I was remembering your story of Freddy dropping his food on the floor for the dog and thinking that was such a hoot.


----------



## Suzysu

I will no doubt have many more amusing tales to tell on my journey of culinary delights!!!!


----------



## Farmwife

YUP!!!! The runs was because of a little piece of hard stool. SHOOT!!!

She was able to pass with out hurting her self. Thank God.:heart:

Didn't get around to calling the GI today. To busy making up for taking a vacation (flu).

I sent the sample out on the 3rd of September soooooooooooooooo it should be back by Oct. 1st. That would be a full 4 weeks. Hopefully it doesn't take that long.:ywow:


----------



## Farmwife

I'm not seeing any hugs:hug: on my post. David or Dusty or ANYBODY know why!!!

:stinks:

Unless y'all are lying to me and not relay hitting the hug button.:voodoo:


:tongue:


----------



## Farmwife

Well how fast things change.

I JUST got a call from the head nurse. Of course when you see them call after hours that freaks me out. They got the stool sample back and the doc want her in at the soonest available apt. Which is Tuesday at 4. She is also on the cancellation list. So maybe a sooner apt. will come up.

I asked what they saw and she said not as much as they we're hoping for.
I'm just hoping we didn't waist a lot of money or it's way more serious than what's being said.
More was said but I'm off to church tonight. I'll write more later. SORRY!


----------



## David

Farmwife said:


> I'm not seeing any hugs:hug: on my post. David or Dusty or ANYBODY know why!!!


Ugh, there was a bug in the software!  All this time people didn't realize they were being hugged.  They couldn't see it?

I'm so angry I didn't catch that early on.  I'm sorry everyone 

It's fixed now though!


----------



## crohnsinct

LMAO!  You just had to drag poor David into the pits with the likes of us didn't you?  

And cute the way you drop another cliffhanger bomb and run all in a ploy to get more views on your thread so you look like little miss popular.  I am onto you farmwife! 

You better post when you get home from church or else....and hey maybe your city Italian friend made a litlte friendly call to the lab...just sayin....


----------



## Farmwife

Crohnsinct :tongue:

The nurse did say something popped up for Candace (yeast) sorry I don't know how to spell this. We've gone through this yeast thing before and no treatment we did stopped her other symptoms. The nurse just said we need to come in and talk to the doc. That was it. My feeling and again this was just my feeling is that the nurse was concerned. I don't know why but that's how I felt. She said she's sending me the results right away.


:kiss: to everyone. Good night.:ghug:


----------



## crohnsinct

Bed?!  You farmers go to bed early!  Did you give the nurse my email and fax as well so I could poor over the results while you sleep? I have a whole bag of miniature Kit Kats to keep me company.  I know...not clean but it has been one helluva day.   Better add MLP and Dusty to the fax email list as they know far more than me.  We will fill you in on what they all mean in the a.m.. 

Try not to worry.  You are moving towards a dx and then will be able to help that little princess for once and for all.  :ghug:


----------



## Tesscorm

Uggh hang in there Farmwife...    just a few more days! :ymad:  I don't know why they would need to call you after hours, to add to the concern, and THEN tell you 'oh, we can't see for for another 6 days!'  There was a rush to tell you that!?!? :ybatty:

Get some rest tonight....  you're still recovering too!! :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: (just in case you're needing some hugs! )


----------



## crohnsinct

^^lmao!


----------



## crohnsinct

And has anyone else ever seen the unhug button.  I don't know about you but it would be very hard for me to "unhug" a post...seems like cruel and unusual punishment.


----------



## Tesscorm

^^^ lmao!!  ^^^  Poor Farmwife was feeling so unhugged!  :lol:  Shhh, don't even let her know she can be 'unhugged'!


----------



## David

Heheh, the unhug is there in case someone hits Hug in case of the other buttons.  If we didn't have it, SOMEONE would ask for it


----------



## izzi'smom

I have been trying to "unhug" ya'all for WEEKS...seems you can only unhug people when you yourself hugged them to begin with-hypocrisy I say!! 
Just sending my love your way, farmwife-6 days for an appt!! CRAZY!! I am so fortunate :heart: while our gi tends to forget about things like phone calls (grr ) we can always get in quickly. wishing you a quick 6 days (and 3 weeks-argh!)


----------



## Suzysu

:hug::hug::hug::hug::ghug:
See them now?
Glad grace passed the stool without hurting xxxx


----------



## Jmrogers4

Haven't been on for a while but as I'm sitting here waiting for the hubby to come home so we can go get a new battery for the car as this is the 2nd time this week it wouldn't start work will have to wait.
I thought I would check up on how cute little Grace is doing and see if you had any news.  Sounds like you are still waiting and searching, hope you find out some more from doctor.


----------



## Farmwife

crohnsinct said:


> Bed?!  You farmers go to bed early! QUOTE]
> 
> We have to go to bed early because we get up so early to tell,....wait maybe being a city girl you don't know this but.............:shifty-t::shifty-t::shifty-t:
> 
> :thumrighton't you know that the farmers go yell at the sun to come up????:thumleft:
> 
> I thought you city folks know it all.:yfrown:
> 
> 
> 
> 
> :rosette1:


----------



## Suzysu

My link must be playing up - for some reason I had been unable to see all the posts about the results etc - GRRRRRRRRRRRRRRRRRRR
how scary that they called you out of hours and they want to see you 'as soon as possible' (ie next tuesday!!). Have they sent you the results yet? what do they say????? Can you phone them back and tell them that I can't possibly wait till next tuesday for more news!!!!
big hugs - how is Grace doing today?


----------



## Farmwife

They do snail mail (through the mail) here. I might get it tomorrow or Sat.
I don't even know how I would be able to read a stool test.:yfrown: I know nothing about the levels in the GI track.:shifty-t:

As far as moving it up, I'm ok with Tuesday.
Maybe because I'm overwhelmed with school for Grace and corn harvest is in full swing and I'm on day two of clean eating diet, which means a lot of different kind of cooking. I think it a lot of fun to try to figure out how to make this all happen food wise.:thumleft:

Have to run. Be back on tonight.

Thanks for your concern SuzySu. I always like hearing from you.:rosette2:


----------



## Sascot

Well at least they phoned!  Gotta love nurses that give you half a story and then leave you to stew.  Hope you get some answers when you do go!  Wishing I was going to bed early but too busy catching up on here .


----------



## Catherine

"I don't even know how I would be able to read a stool test"

Just type out the whole report and we will call the big guns in to read report, and put together a list of questions, for the long awaited appointment on Tuesday.


----------



## QueenGothel

You have got to be The Bitch.  I would totally have the GIs balls in vice by now.  How annoying.  What do you have to do to get the doctor to do his job?  Grrr


----------



## Farmwife

I'm shocked!:awe:
You seemed soooooooo calm. You swear!!!:ywow:
 I expect that from some here (no names shall be given). Not you! :blush:
The poor GI has done nothing to deserve such brutal treatment.:runaway:
I mean I would be arrested and my hubby would never allow such contact with another man. rder:
I mean are you trying to cause problems in my marriage????


:rof::rof::rof::rof::rof:


----------



## crohnsinct

Wonder who you have in mind farmwife:whistleinnocently:

And you hit the nail on the head!!!  The GI doc has done nothing!!! And that is why he deserves such treatment!!  

Mary you can be in our city gang anyday!


----------



## Farmwife

Ya crohnsinct,  maybe you and someone from "down-under"

Mary
Don't go to the city-girl side.
Come back to the light.
It's safer over here.


Update for my journal I mean thread.

Grace is day one without Poo.
Still happy and no pains but dark circles under her eyes.
Weight dropping a bit but we are on day three of the "crohnsinct clean diet".

GI apt. on the 15th of October. 
Might be changing so hubby can go. BUT.... 
Only if they have something open with in the next week.
 I will go with out him. One of you might have to meet me on the outside of the big city and drive us in.

Good night y'all.:ghug:


----------



## crohnsinct

Yeah!  I vote Mary and her ball toting vice! 

How much weight are we talking about?  With all the fiber going in with the veggies and fruits and whole grains that should help with the poop...make sure she is getting enough water. 

Are you sure you are doing the diet right:tongue:


----------



## my little penguin

You can do it.
If I can drive over 5 hours by myself to get the kiddo there so can you.
Sometimes the Gi just needs a little nudge to get things moving.
No changing appts she needs to get a dx so she can get better .
We are here for you ( pushing all the way into the city).
Our Gi got the " nudge" he needed and thankfully the Rheumo is up to the challenge to keep my kiddo in the best shape possible  by doing the nudging.
One thing to watch when you cut wheat you cut fiber so make sure your clean diet has oatmeal daily tO help in the transition. The oatmeal bake can be made clean and it delishious.


----------



## Farmwife

Yes on the diet. I'm not 100% clean but a close 87.6% clean.
She's drinking a lot. My hubby thinks it's because she's a sugarhilic and her bodies adjusting. 2lbs is nothing big yet. If she get to 5lbs I'll add a shake back in.


----------



## crohnsinct

my little penguin said:


> One thing to watch when you cut wheat you cut fiber so make sure your clean diet has oatmeal daily tO help in the transition. The oatmeal bake can be made clean and it delishious.


Are you cutting wheat farmwife?  You don't have to in order to be clean but maybe for fodmap or some of the other diets you do.


----------



## crohnsinct

my little penguin said:


> One thing to watch when you cut wheat you cut fiber so make sure your clean diet has oatmeal daily tO help in the transition. The oatmeal bake can be made clean and it delishious.


Are you cutting wheat farmwife?  You don't have to in order to be clean but maybe for fodmap or some of the other diets you do.


----------



## Farmwife

Yes on wheat. For the most part I'm trying glutton free and yeast free. I still I'm using unbleached white flour for my bread but I'll be switching that soon.

She's on LOW fiber. I know the sounds strange but fiber backs her up. Mary had the same thing with Rowen I think?


----------



## Farmwife

Wait......... no on cutting all wheat.
 Sorry to many post at once. 
We're only eating real wheat product. 
I would love the oatmeal bake recipe MLP.


----------



## QueenGothel

We tried gluten free and I bound her up really bad.  If u don't do the processed food Ur good.  We did all soluble fibers. She still had wheat in the end it was easier to digest.  I didn't buy anything packed with wheat fiber but I know whole grains would loosen her up. Lots of fruits and veggies.... Tons of water, seriously she drinks a 50 ounces of essentia water daily.

In regards to the city thing, I am going camping now, but I live 20 minutes from Detroit.  I was born in the city. I swear when provoked. Actually, I can be a real bitch. lol  I can keep my composure usually so long as I get my sleep.  Me at the big H before the remicade and sleep deprived.  Watch out. Forgot the ball vice at home that time.  Those residents got lucky.  I like to visit the country a few times a year. So long as i have a bed and toilet of course.


----------



## Farmwife

New update: 

Grace did go poo before bed.:dance::dance::dance:
Lots of poo. :eek2:The most I've seen in ages.
Normal looking at first then pure liquid after.
Still I hope we're going in the right direction.
Maybe I can stay in my bubble a little longer and forget all this GI stuff. KIDDING, I THINK.:shifty:


----------



## my little penguin

Trust me do not go back to the bubble.
If your hunch is right damage is going on even if you can't see it.
It needs to be stopped the sooner the better.
I have come to the realization I can not go into the bubble ever again but reality is a good thing- even the docs noticed a difference in DS.


----------



## Catherine

You can staying in happy bubble so long as you move forward with testing and make sure out of  it when speaking to dr , gi or medical people in general.


----------



## crohnsinct

Good girl Gracie!  I never mentioned this and I dont know why not because if anyone can handle this you guys can but O does happen to have a large volume of poop since moving onto clean diet.  Oh and her younger sister who tends toward constipation....regular now and has lost a little weight and pouchy tummy gone.  

I don't know what to say about the liquid at the end though....


----------



## Sascot

That's great news - one less thing to worry about!  She will probably feel alot better with all that out of her tummy :ysmile:


----------



## DustyKat

Woohoo! WTG Grace!  

WTG for your girls too crohnsinct! Well done! 

What a special group we are celebrating all things poop! 

	
	
		
		
	


	





Dusty.


----------



## Farmwife

Update.

Grace is happy:thumleft: but no BM.:thumbdown:

Tomorrow will be our 12 year anniversary.:hippy:

We're having a visiting Evangelist visit our church so we'll be having a pot-luck.:banana:
Meaning I don't have to cook. Plus clean up, I will have 10 other women help me.:ghug:
Happy anniversary to me.:applause:


----------



## jmckinley

:banana::banana::banana:

Yay for Grace! I know she must be feeling loads better LOL

Happy Anniversary!!!


----------



## kimmidwife

Happy anniversary! We celebrated 19 years this Month. I am glad Grace is feeling a little better. Hopefully you can enjoy your anniversary.


----------



## Tesscorm

:emot-waycool:  Happy Anniversary!!!  :congratualtions:

Hope you have a wonderful day!!!! :rosette2:


----------



## DustyKat

Didn't you say your eldest was twelve and a half?!?! :yfaint: 

Seriously though, Happy Anniversary!!! I hope you have a fab day!!! 








You have reached a milestone I never will! :ylol2:

Dusty.


----------



## crohnsinct

Happy Anniversary!!! 

and I just know the church pot luck is going to be squeeky clean eh?


----------



## Suzysu

YAY for Gracie!! sorry I'm so slow on this thread for some reason there is a 24 hour delay between me getting the posts!!!! I hope she stays symptom free over the weekend and I hope you have an amazing anniversary!! xxxx


----------



## Sascot

Happy Anniversary!!  Hope Grace stays happy.


----------



## Farmwife

Update:
Grace went poo. It was normal. First time in months.
But the first part was BLACK and looked think like tar.
Something she ate I bet. I'll keep an eye on it.



Had the pot-luck today.
SOOOOOOOOOOOOO not a good day for the clean diet.
I'll get back on it tomorrow.
It will be interesting to see what Grace does. 
Will she have pains and problems being on over processed foods for a day? I guess only time will tell.

Our Anniversary is going good. I'm on here and my hubby is in the barn. Hopefully I'll see him before bed.


----------



## crohnsinct

Yay poop!  

OMGosh!  Don't even talk to me about dirty eating.  It Sucks (is that a forum approved word)!  Friday had meeting at T's school no time to eat.  Fainting so I had a big box store blueberry muffin and coffee...stomach ache and felt like crap.  Upset friend asks me to come with her to lunch..burger and fries out...felt worse... then Friday night threw up.  Saturday clean breakfast but dirty pizza out...felt yucky.  Today, clean breakfast but pastry and bagel at church then O's birthday dinner at Cheesecake Factory and I am home sick again.  I can't believe only 5 weeks of clean eating and I can't do dirty anymore.  I am NEVER eating out again!  Can't wait till tomorrow to nourish my body again. 

Get that girl (and you) back on track.


----------



## Farmwife

DustyKat said:


> Didn't you say your eldest was twelve and a half?!?! :yfaint:
> 
> .


DustyKat,

It took me most of the day to get that joke.:tongue:

I told ya since watching that Honey Boo Boo clip I got dumber.:rof:


----------



## jmckinley

Farmwife said:


> DustyKat,
> 
> It took me most of the day to get that joke.:tongue:
> 
> I told ya since watching that Honey Boo Boo clip I got dumber.:rof:


:rof::rof::rof::rof:


----------



## DustyKat

Get outta here Farmwife! I think you have been sniffing too much milk! :rof: 

Dusty. :ybiggrin:


----------



## crohnsinct

It's Tuesday!!!!!! :soledance: 

Time to come out of your bubble and go to the doc and start getting some answers. :shifty-t: 

Leave your sweet apple blossoms at home and channel your inner Mary, Dusty and Crohnsinct.  Write down all your questions and do not leave that office until every last one is answered.  Write down everything they say.  

Repeat after me "I want the scopes!".  

Good luck!  I will be praying it goes well and of course stalking the forum all day to see your detailed accounting of everything that what said and for the date of her scopes. :rosette2:


----------



## Lewiss mum

Sorry it's late happy anniversary
I have been married 7 years and u get less for murder in uk lol ok . He's a very good hubby and dad,x How are u and Gracie doing . Did u get any info from your gi doc,xxxx


----------



## Farmwife

Appointment at 4:00.:thumleft:

Yes mother :yfaint:crohnsinct I will heed your advice.


DustyKat:ymad:
Of all the things americans can sniff, milk it NOT one of them.:lol2:
:shifty-t:What in the world do y'all do "down under"???:shifty-t:


----------



## Tesscorm

Good luck at the apptmt!!!  I so hope you leave with ANSWERS  and not more questions!! :ymad:

:ghug:


----------



## Sascot

Thinking of you!! Hope the appointment goes well (as well as these things can).  Again this time difference sucks - don't you know Tuesday is nearly finished here!!  Now I'm going to have to wait till tomorrow


----------



## upsetmom

Hope everything went well.


----------



## kimmidwife

Anxiously awaiting to hear how the appt went!


----------



## Farmwife

Give me three weeks:shifty-t:

That was the words of the doctor. He said upon MUCH study he feels right now that Candida Syndrome is the possible big culprit. He said what stuck out to him is her "good bacteria was in check but the candida is high. Doctor said this should NOT be so because she's getting some of the best pro-biotic out there. Also we give her yogurt. The real stuff.
He said if we look at all the possible signs and dangers, Grace fits it to a tee. He think this still might possible be a secondary problem to ME, specially because of her declining IgA, but maybe not. He said, give the anti fungus/biotic three weeks to work. If she seems like a new kid then GREAT but if not we still have the GI apt. in October. I told him my fears about damage being done to her track but he said since she seems stable (no blood or in hospital) she's OK for now. But agrees this can't go on like this. He said he will be sending all the info to the GI and letting him know the seriousness of the situation. So if the GI wants us in sooner he'll call.:yfaint:

I know this sound horrible to all you wonderful parents but I pray it's just Candida, even through it might cause life long problems. It's been a long hall and it seems our direction is always changing.:thumbdown:
I want off this ride!!!!!!!!:ymad:

Update on Grace,


Knee pain today and tired and very grumpy.:thumbdown:
When she went poo-poo she said it's stuck and hurts momma.:thumbdown:

I'm tired. I'm going to go eat something very un"clean".:thumleft:

Oh any info you know on Candida Syndrome  would be great.:sign0085:


----------



## Tesscorm

OMG, 3 weeks seems so long to wait AGAIN!!!  So frustrating for you, always seems like there's _one more_ thing!  Sending lots of wishes that the anti fungal/biotic works and she really is a NEW kid by 3 weeks!!  :Karl:

(Sorry, no info re Candida)


----------



## Earnellzwifey

Poor Poor lil farm girl. I am sorry that pooing is causing her pain today. I am sending ((((HUGS)))) and best wishes your way that they have finally figured out a cause to all of her problems.

Eat something un-clean for me also. im stuck on a liquid diet right now. I have all kind of un-clean foods dancing through my head.:luigi:


----------



## my little penguin

Hugs-
The science side of me says proceed with caution.
Google scholar and the like only link it back in the 1980's to heroine addicts and aids  patient. Not a child thing.nothing recent......hmmmm flag in my book.
Regular google no webmd no emedicine only contriversial dx websites .
Then other websites that subscribe to selling you books on leaky gut syndrome.another flag.
Not saying she doesn't have canidia but not sure it answers everything.
Hope the drugs work and suspicions are not correct.
Hugs


----------



## Farmwife

mlp
Well my doc is holistic/mainstream.
 Meaning he always tries to give the natural way to heal thing but will quickly give prescription for meds if he thinks their warranted or asked for. 
He never pushes holistic drugs if you don't want them. 
However this is why most go to him. LIKE US.
Her candida was elevated HIGH on her fancy stool test.
So treatment would be called for anyways.:shifty-t:
I know it might be a stretch but I'm desperate for anything to work.


Earnellzwifey

I lift my fork in thanks to you and your kind message.:rosette2:
We're friends now. I'll be sending you a friend request as long a crohnsict doesn't feel threaten by me making new friends.
 She's super protective.:shifty-t: A control freak really.:sign0085:


----------



## Earnellzwifey

I am honored for the friend request.:worthy:

crohnsict I promise I wont try to take bff status. :whistleinnocently:


----------



## QueenGothel

I hope it is candida also.  It is really hard to get rid of it took my mom a year if those anti fungalbiotics.   If they make you wait one day past the 3 week marker and she is not this new kid. I am bringing my ball vice and meeting you at the hospital.  Understood?!? 

I hope she is feeling much better.   take care momma.


----------



## crohnsinct

And you wonder why I go and post things on the forum that I have already told you in private?!!!  Because you just can't be trusted...always looking outside the home for some lovin'...am I not enough for you?!  Hmpf!  

As for unclean...I still have plenty of swim stress so hubby brought home some Magnolia bakery for me....can't wait to dive in!  And yes typing slowly because of Merlot in my right hand.  

Candida...oh boy this is something I know all too well.  It is a b%$#h to get rid of.  You are lucky (I think) to have a doc that actually acknowledges it and seems to know something about it.  BUT I have heard it takes far more than the probiotic treatment to truly get rid of candida and like MLP said proceed with caution.  Candida has been linked to every symptom known to man and with the sugar in Americans diets just about every American will test high in Candida....you could be ignoring the true underlying cause of all her troubles.  

But since I am so patient (cough cough B.S.)  I will wait the 3 weeks if that is what you want to do but I am with Mary...not a day over 3 weeks..and if the little princess is not better she must have scopes...I beg you please get further tests so we know for once and for all whether or not there is damage being done and whether or not it is IBD?


----------



## Farmwife

LOL at you in general.

Yes my doc did make it CLEAR that Candida could be a SECONDARY cause. BUt............we were and are hoping this might be it. But...............I still want to ware a size 8 someday!


----------



## Earnellzwifey

> As for unclean...I still have plenty of swim stress so hubby brought home some Magnolia bakery for me....can't wait to dive in!  And yes typing slowly because of Merlot in my right hand.


Oh you tease! Well I guess I will just have to pretend my green jello is really a jello shot. :beerchug: and my grape juice is wine. 

Email me a piece of cake! I wont tell the nurse where I got it from. PROMISE :cookie:



> But...............I still want to ware a size 8 someday!


You can do it!!!!!! :ghug:


----------



## Sascot

Oh no, another 3 weeks!   I'm with the others - if nothing happens then, let me know and I will fly over there with my Scottish rolling pin!  Maybe I could just make them eat Haggis, that might be threat enough! :ylol2:
Hoping the next 3 weeks go quickly and with any luck Grace will be feeling better!


----------



## Suzysu

I am praying that she is a new child in 3 weeks xxxx


----------



## dannysmom

I hope the antifungal makes her feel better. LAst year I had thought Candida may have been contributing to Danny too (because it was found in his lungs after several months of antibiotic treatment). At my request, his GI gave him antifungal for ~8 days. At the time we did not think it made a difference ... but it may have started things moving in the right direction because he slowly started to improve AND started to lose some excess weight that he kept gaining in spite of all the D.

Glad you are still keeping your GI appointment!!


----------



## jmckinley

I hope the med works and she if feeling better soon! If not, scopes definitely! Your Princess needs to be feeling Grand! Look up a candida diet, might help the meds along. I am sure it eliminates sugar, but I don't remember what else.

Hugs!


----------



## DustyKat

Hmmm, Candida...well I surely hope that that is what it is and your beautiful Grace is soon feeling fab! :kiss: <That is for Grace and not you cause I don't like milk sniffers, we prefer to sniff gum leaves with the Koala's! :lol: 

If you use the search function you will find many threads about Candida and how many feel it has a played a role in their disease. 

Good luck hun and loads of love and well wishes to Grace! :Karl:

Dusty. xxx


----------



## Farmwife

Update on Grace:

Day 1 of antibiotic- She was dizzy for half the day and naughty:yfaint: the rest of the day. No stool

Day 2 Great most of the day untill:thumleft:.....passing stool at night became very painful and her prolapse started to show again. Gave her glycerin enema which help but not as much as before. Hoping the new meds are doing this.

Day three so far so good.:shifty-t:


I hope all is well with every one. 
The farm is busy and my 9 yr. old nephew is in the hospital and was just diagnosed with epilepsy. Poor kid. My twin hasn't stopped crying. He's fine now the swelling in his brain went down and the seizures have stopped for now. THANK GOD. I'll be helping them out when I can. The doc told me that Grace had little immunity and now thanks to the med she'll have close to NONE. So we can't go visit in the hospital. But Grace will color him a picture with a love note in it. Hug your kids and remember their's always someone that has it worse.


----------



## QueenGothel

I think it is too early for the antibiotics to be doing anything I would think.  I takes a couple days to get them in her. Just wanted to mention... Idk which antibiotic she is on but... Cipro will cause things to really get firm.  When Rowan was just on them she was having "normal" looking stools without a colon. It was crazy. So don't forget to miralax miralax miralax.


----------



## Farmwife

Thanks Mary.
She's on two tsp. a day of Diflucan for three weeks.


----------



## Tesscorm

Hope today continues to be good and the BM problem quickly resolves itself! 

I am so sorry to hear about your nephew! :hug:  What a difficult time for your twin and your family! I hope that his medical issues can also quickly be brought under control! :ghug: :ghug:


----------



## DustyKat

How are things going with Grace? 

Oh my goodness...:hug: I am so very sorry to hear about your nephew, bless him. I hope they are able to get things under control quickly and keep it there. How awful for you to see your twin going through this and it must be dredging up some difficult emotions for you too hun. :ghug: 

Thinking of you all, :heart:
Dusty. xxx


----------



## Farmwife

Update:


Thanks Dusty for asking.:kiss:

Grace is having bouts of dizziness and an unwell feeling.
 They last a few hours or so. 
Then she bounces off the wall. 
Last night the knee pain return.:voodoo:

HOWEVER.............in my ever optimistic view on life, her meds need more time to work!:shifty:

So don't anyone worry you might still be able to get rid of me yet.:dance:

:heart::heart::heart:


----------



## Farmwife

Dear Catherine are you supporting (HUG) the idea of me leaving or Grace's meds need more time to work?


----------



## Catherine

More because I did know what to say.  Have you made major diet changes  with the candida diet?

Poor kid can't catch a break.


----------



## Catherine

I sure candida is still a bowel issue, and you belong here.


----------



## Farmwife

Yes Catherine we're doing the "clean eating" diet.
We've cut sugar and wheat big time.
However her doc said he still wants her on some wheat(organic) and sugar(natural).
I saw the out line for Candida diet. I so hope we don't have to do that one.

I've lost 7lbs on this diet:dance: and Grace has put back on 3lbs :dance:she lost at the start of this diet. She also had a growth spurt.:dance:


See you might still be able to kick me off in a few weeks.


----------



## Catherine

I dont like the look of the candida diet myself but thinking of trying for my rosacea.  Once I get over the itchy skin which appears to have been caused by vitamin d.


----------



## DustyKat

> So don't anyone worry you might still be able to get rid of me yet.


Goddamn! You sure know how to burst someone's bubble! :ylol2:

Big :hug: and :kiss: to Grace! :heart: 

Dusty. xxx


----------



## Suzysu

Glad all is ok(ish) How is your sisters boy? hope he is ok too. xxxx


----------



## Farmwife

Hi all,:rosette1:

Update::heart:

Grace is sick with a cold I believe.:frown: I'll have to watch to see if it moves into her lungs. If it does that will be a different ball game. :ywow:Her BM's are still not right. But I hope that's because of the meds.:thumright:

On a side note- My nephew is at home and doing well. No seizers so far.:medal1:


----------



## momoftwinboys

Hope the cold goes away quick. Good news on your nephew. 
How is mom and son doing with the tutoring?


----------



## jmckinley

Wow! Sorry to hear about your nephew, but glad he is home and doing better! I know how hard it is to watch a sibling struggle with a sick child. And poor Grace! As if the tummy troubles aren't enough! It's that time of year...dealing with all the colds and allergies! And our kiddos have terrible immune systems. Hope she is feeling better soon.

Now if there was just some way to get those cows to milk themselves.......


----------



## izzi'smom

I am sorry to hear of your nephews diagnosis, but am glad to hear that he is home. Fingers crossed they find a med that works well for him!! 
Hoping against hope for candida...feel better, farm girl!Q!
and mama, no chance of you leaving. We need a rolling pin wielding wife around...what is there to do in life besides discuss poo???


----------



## Sascot

Glad to hear your nephew is back home.
Sorry to hear Grace is under the weather, hope the cold goes away quickly!!  You are not allowed to go anywhere missy - wouldn't be the same without Farmwife popping onto the posts!


----------



## kimmidwife

Sorry I have missed this thread until today. I have had some major stress going on in my life. Issues with one of my other children  Anyway I hope Grace is doing better. I want to ask how does the doctor explain the joint pain with the candidiasis? I have never heard of that being a symptom. Diflucan is a great medication. It is not an antibiotic but an antifungal drug.


----------



## DustyKat

Good to hear all is going well with your nephew.  

But how is Grace going hun? Is her cold settling? 

Thinking of you, :heart:
Dusty. xxx


----------



## Farmwife

Update-


Grace's cold is subsiding.
 Ironically her brother got sick yesterday with the dreaded cold and is sicker than she was. :yfaint:
I should have known he started to get really bad canker sores a few days ago.

:thumleft:Grace is having no symptoms to speak of:thumleft:, other than tummy pain after eating once in awhile.

I'm still holding out hope it's this Candida causing all this havoc. 
:shifty-t:It's just hard to get my head around the fact that for YEARS "yeast" could have done this.

I did notice one day during a party I let Grace have sweets (bad mama). That night Grace had pains most of the night. So maybe there is something to it.

Kimmidwife - The research I was given did say it can cause joint pain. Also my doc kept saying anti-fungal/antibiotic. I will have to ask again. Thanks


----------



## Sascot

That's great that Grace is doing well!  Hope your poor son gets better soon.  Andrew has been off school for 3 days with a bad cough/cold. The joys of heading into winter I think.


----------



## crohnsinct

Candida is a bear!  The Clean diet helps a lot.  Not exactly the Candida diet as you are still eating pastas,  rice and fruit but it is a much easier diet to stick with.  She gained 3 pounds?!  Woo Hoo!!  You lost 7?!!!  Double woohoo!!!

When are we going to  the GI?  Have you picked a scope day?  Obviously I am not quite buying the Candida being the "whole" reason for all her trouble.


----------



## Secretuser

Best of luck everyone!


----------



## jmckinley

So glad to hear that Grace is doing better!


----------



## dannysmom

I am sorry your son is sick now ... and sorry to hear he gets canker sores. Hope you all feel better soon.


----------



## Farmwife

Update:

Grace seems down a bit.
Painful hiccups.
Painful BM's. Specially when wiping. Even though I see nothing red or irritated.:sign0085:

I wish I could blame it on the virus or Candida but something tells me this is different.:yfaint:

Today is a new day and we'll see what it brings forth.:rosette2:

Love to all


----------



## my little penguin

Hugs... So sorry about the pain.
Fwiw DS started having more painful bm's and was having minor internal tissue when the ibd spread to his rectum . His biopsy slides confirmed this from his third scope in June.

I really hope I am wrong.
You can go back to your regularly scheduled bubble program.


----------



## Sascot

Sorry to hear Grace is having pain.  Hope it settles down quickly!


----------



## QueenGothel

Go to a beauty supply store and get squirt bottles like the ones they give you after you have a episiotomy. Squirt her bottom with warm water.  It really helped Rowan. Something with the warm water helps.  Like a sitz bath.

I hope her bum feels better, Rowans got some butt burn too.  It is rectal not on the outside either.  Poor kids


----------



## Lewiss mum

Aw so sorry gracie feeling down and having bum pain things were going so well,lewis gets pain inside when his poos getting a bit hard can u up her lactulose help it slide out abit . Hope she feeling a bit better hugs to u both.xx


----------



## Farmwife

Thanks Mary. I've been using clean warm wash cloths to help.
The bottle would be better Thanks. 

Lewis's mum Grace is on 3 doses of Miralax (lactose).
Still not enough now. 

Update:

Belly pains:thumbdown:
R. leg weakness:thumbdown:
NO BOWEL MOVEMENT.:thumbdown:

BUT...on a good note :thumleft:no painful hiccups.:thumleft:

The GI nurse said at the beginning that when she looks like a flare is starting get her labs done. My worry is should I wait till it gets worse (if it does):yrolleyes: or do it now? 9 months ago she was in constant pain. So far nothing to that level yet.


----------



## jmckinley

So sorry Grace is having a bad day. Gotta love this rollercoaster.....NOT! Hugs to you!


----------



## Farmwife

Update:

I fear another impaction might be brewing.:confused2:
Knee/leg/ankle pains are STILL continuing since 4:30pm.
As we speak she's sitting on a heating pad. Seems to help.

The good news is she had a good Sunday and a week from today is her GI visit:hug:.



Oh I tomorrow I'm not asking.......... I'm demanding :ymad:a referral to a rheumy from my GP!
I've been practicing my best crohnsinct impression to get my point across.:eek2::rof:


----------



## crohnsinct

Bahaha and then after you get the rheumy referral start practicing "SCOPES!!!!!" for your GI appointment.  Has hubby come around on the scope front yet?  This might require feminine warfare


----------



## my little penguin

Rheumo !!!!
Scope!!!!
You can do it !!!
It will all be ok .
Then at least you will know


----------



## Suzysu

YAY - GO FARMWIFE!!!! Rheumy!, Scopes!, get some answers!!!!
Sorry Grace is not doing well again. Hope that you all manage to survive till the appointment next week xxxx


----------



## Farmwife

crohnsinct said:


> Has hubby come around on the scope front yet?




I've mentioned it twice and twice he said NOTHING!:shifty:

I mean he saw her take the heating pad in tears and wrap it around her leg in pain.


Update: :medal1: Talked to the head nurse and said how long does Grace have to suffer???? She said she shouldn't have to at all!!!!
I asked for the rheumy appointment and she said she's on it NOW!
So we'll see because the doc has to sign off on it.:shifty:
Also she brought up the Candida diet. Told her my worries about Grace keeping weight on and she said keep doing the "clean eating diet" for now.


----------



## Sascot

Well that's not too bad.  Sounds like the nurse is fighting for you which is great!  Hope it gets sorted soon.


----------



## my little penguin

Hope they can get her in soon


----------



## Farmwife

No go!!! Not till January.
The doc brought up the GP we went to a few months ago (you know the one we were thinking of replacing him. but he doesn't know that) this GP was also a internist with pead. training in adult meds. I told her that we didn't feel like he got the point of what's going on. She said she'll call another pead. rheumy down state and see when they can get us in. So here I wait, yet again.

But the good news is the doc does thinks she needs to see one now!
 Also the nurse is worried about the brewing impaction.


----------



## Suzysu

JANUARY???? - i mean SERIOUSLY??!!
hope you can get her seen sooner xxxx


----------



## Catherine

Do you have an appointment in January?  Time to get on the cancellation list.


----------



## jmckinley

January is way too long to wait! I hope you get another appointment soon! I agree...cancellation list!


----------



## Sascot

Wow - January!!! I know just how you feel :frown:.  Hope the nurse manages to get someone who will see you asap!


----------



## QueenGothel

January??! Really??! where is my ball vice?  Where did I put that darn thing? You have got to get her in sooner. Down state yes down state sounds like the answer.  Sorry about the foreshadowing impaction.  I hope it clears with no pain.  Poor kiddo.


----------



## Tesscorm

Just sending lots of hugs, hugs, hugs!   I hope the impaction doesn't develop!!!  And, yes, to the cancellation list if you can't get an earlier apptmt!!  :hug:


----------



## crohnsinct

Oh no Mary! Lost your vice?  You did take the vice off the last victim didn't you?


----------



## QueenGothel

Must've left it on my DH.  Ha :rof:


----------



## QueenGothel

I think we need a smiley that kicks another smiley in the nuts.  Dustykat?


----------



## Farmwife

What happen to you people?!?!?!?!

Update:

I'm hoping the impaction broke up.:shifty:
Grace is sleeping more an more.
Loss of appetite.
Loss 2 lbs in two days.
Put back on shakes.
Pains continue after eating.
Was even spitting up water at the table.

Good news...... no leg pain.:medal1:


----------



## Tesscorm

:rof:


----------



## my little penguin

Hugs for you and Grace...
Does the Gi know about the rapid weight loss and trouble with water etc...,
When do you see him again ????
Not sure why they are making you wait for a visit ... Grrrr
When I learned to scream enough I have gotten an appt in   1-2 days....,
If they won't see you soon you can call the offices business manager that tends to get you in quick as does the ER.
Just concerned with the rapid weight loss  for her age she could go downhill very quickly .


----------



## Tesscorm

Our posts must have crossed!  My :rof: was meant for Mary's post...

Poor Grace...  It just continues to amaze me how long they are leaving Grace to suffer through all these symptoms while they slowly run one.....  test.....   at.....  a..... time....!  OMG, can they not just get on with it!  I can only imagine how frustrated you must be feeling!

MLP may be right...  maybe ER is the route to go!  Is your GI based in a hospital (can't remember if you've mentioned)?  If she continues going downhill, I would take her to that hospital's ER and tell them that she is Dr. GI's patient!  (After two months of tests and Stephen's ped saying she wanted to wait a bit longer to 'see', we took Stephen to ER and he was tentatively diagnosed within hours!)  I cannot believe they would send a little girl home who's in pain, losing weight, lethargic, can't eat and can't drink!

:ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug: :ghug:


----------



## Susan2

You want one like this?


----------



## Sascot

Love that smiley face :rof:, sure cheered me up!
Definately worth phoning and trying to speak to the GI!  Wish it would just get sorted so Grace can relax and enjoy being a kid!


----------



## Farmwife

MLP we go to the GI on Monday. 

When I called the nice GI nurse, she saw that Grace was going to be seen on Monday and can ask the doc myself. Well I did the best crohnsinct impression I could and said NO you don't understand I need to know if senokot is good for her, also she is going down hill what do we do?????????????? We talked about which ER to go to, the one up her or the one at their hospital. We think the kids and I will head down state Saturday (if she gets worse) and stay at my dad's. That way if she needs to go, we'll be right there, 20 min. away.


Update:
Sleeping almost 16 hours a day (not all at once)
Weight steady.:thumleft:
Pain after eating and pain on the backside of her bum and lower back.:thumbdown:
Poo the lightest I've ever seen it.:yfaint: (waiting for GP nurse to call back, possible liver problems because of Diflucan):sign0085:
Cough:yfrown:
Said she's hot, no fever.:shifty-t:

Sorry for all the updates it just keeps things recorded. :rosette2:


----------



## my little penguin

Take photos of the BM just in case for the Gi .
Good idea to go to your dad's
If the pain gets bad take her to the ER and call the on call Gi while Driving there.
They just really need to scope her period.
Enough is enough.
Did they even do an MRI yet???


----------



## Sascot

Good idea to go to your dad's! At least you know you are near the hospital. 
I agree it's colonoscopy time - you could try tears and the rolling pin - surely one would work!


----------



## Farmwife

Things came up and no go for my dad's house.:ymad:

Oh well, on to plan B.:confused2: 

Since brother got home she's happy and naughty.:yfaint:
Still waiting for the nurse to call back and 
tell me if the her pale poo is a warning of liver problems
 because of the Diflucan or just her over all poor health.:yrolleyes:

Still no good amount of poo. I don't want to use that Senokot all the time.:ybatty:
I think I'll wait till tomorrow to see what I have to do to "help" her poo.


----------



## kimmidwife

Farmwife,
If she gets any worse just take her to the ER. This is ridiculous the way they are jerking you guys around. Really, enough is enough! That poor baby!


----------



## upsetmom

Farmwife 
You need to make sure they do a colonoscopy.. if Grace has some sort of IBD
just think of all the damage that is being done while they keep playing games with you's .

We had trouble trying to convince my daughters doctor to do the scope for a long time. In the end we told him she can't keep going on like this if you can't do it we'll go somewhere else.

So make sure you ask for that scope even if they tell you they aren't too concerned at the moment. Your her mum you have to tell them what you want.
So speak up for poor little Grace.:hug:

Good luck and all the best


----------



## upsetmom

Also i just wanted to add i know how hard it is to even think about a scope BUT at least then you'll finally have some answers and you won't have to keep guessing whats wrong............ And believe me these kids are strong.


----------



## DustyKat

Oh my goodness Farmwife... :hug: 

I so hope things settle for her over the weekend but if not I wholeheartedly agree with getting her to the ER, any ER. 

Sending you and Grace loads and loads and loads of love, luck and healing thoughts...:hug::heart::hug::heart::hug: 

Dusty. xxx


----------



## Catherine

In some way sarah symptoms were very similiar to Grace 6 months prior to dx. She had a ultrasound which we told was clear.  We change gp had a number of bloods done but on the bases of clear ultrasound that new gp had not seen he mention a colonscopy but did not recommend it Sarah was dx with ibs.  Fast forward four months, hemoglobin levels dropped to 9.0 and weigh loss began and in a two month period she losted 12kg.

I wish I had pushed the colonscopy when it was first mentioned. I wish I had got a copy  the ultrasound.


----------



## Farmwife

:sign0085:OK, crohnsinct start driving,
:sign0085:Mary grab whatever you need to,


Update:
Grace just spent 6 hours last night in eye pains.
 Never have they last that long and her pupil dilated and
 didn't go back to normal for hours.
Her rash is showing back up and NO POO yesterday!!!:yfaint:
Will be talking to the nurse today again!!!

I will say that Grace woke up very happy and ready to go.
She ate two "clean" blueberry muffins and a smoothie.:thumleft:

I'll be off for a few days. I hope every one will have a good week-end.:rosette2:


----------



## Catherine

Wishing you the best for your time away.


----------



## DustyKat

Oh no, poor Grace...:hug: But what a little trooper she is, she fair makes your heart sing, bless her. :heart: 

Good luck with the appointment! :goodluck: 

Thinking of you and yours,  
Dusty. xxx


----------



## Tesscorm

Hope Grace has some relief from her symptoms over the weekend!! :ghug:  If not, I hope you are able to get some answers for her!!!  :ymad:

Will be thinking of you! :hug:


----------



## jmckinley

Wow! I can't believe there's actually a smiley like that!  :biggrin: Remind me not to run into you ladies in a dark alley!!


:frown: Oh No! Poor Grace! I agree with everyone else...ER! That's where we finally got results with Ryan when he was first dx'd. Just plant yourself and say I'm not leaving without some answers!



:hang:


----------



## crohnsinct

That Grace is one tough Farm cookie isn't she!  Her appointment is Monday right?  Three more days!  I am praying that she could hold out three more days with no energencies!!!


----------



## Suzysu

Good luck - thinking of you guys and keeping my fingers crossed xxxx


----------



## Sascot

Good luck, I hope they do something SOON!  Thinking of you


----------



## TangieC

Saying a prayer for you! I hope you get your answers soon  I had to get just plain nasty before anyone seemed to take me seriously. After visiting two different ERs for three days straight, I'd had it! On the third trip, the doctor came in and acted like I was a loon for being upset (I thought he was going to die for heaven's sake! He sure looked like death!). I got VERY angry (that doesn't happen often) and told him (more politely than I wanted to) that NO ONE was leaving the ER until I got some answers!!!  He was admitted that night (early Tuesday morning actually) and was finally transferred on Thursday morning to a larger hospital about an hour and a half away with pediatric GI specialists. By Sunday they had run every test known to man, xrays, scans, stool, and blood, then they did the scope Sunday morning (endoscopy/colonoscopy) and confirmed their suspicions of Crohn's. I honestly cannot believe they are STILL jerking you around like this!!! I am really praying for all of you...it's hard enough to have your kids suffer, but when they're little like that is worse. My little boy hasn't had all of the symptoms you've had to deal with (though looking back I wonder if some things weren't surfacing), so I'm praying you get to the bottom of this soon! If I could get you out here I would recommend our Dr. C! He's the best!  Thanks for keeping us posted!


----------



## Farmwife

I hate this!!!!!:ymad:
I don't care much on what she's suffering from.
I just want to find out what in SAM HILL this is!!!!

For the second year in a ROW, Grace can't go to the city's open firehouse.
Our fire-station goes ALL out for the children. Grace went when she was 1 1/2 and STILL remembers it. Last year she was too sick and this year the same thing. Grace spent most the night with asthma like cough. No way can I take her out in 35 degree rainy whether.:thumbdown:

Sorry just feeling sorry for her and maybe myself a little.
I told Grace we'll cook some cookies and cuddle up close and watch a DVD and I'll let her nap in my bed.

Have a good week-end y'all. 
Appointment is on Monday. Be back on Monday night or Tuesday. I hope.:shifty-t:


----------



## crohnsinct

One day down...two to go!  Hang in there Gracie!  Hang in there Farmwife!  Monday is coming.  Let this fuel you to get real good and demanding! 

Um...bad mommy here...I would leave Gracie home with daddy and bring Gunner to the firehouse...no way this mommy would miss the firemen!


----------



## Tesscorm

Oh Farmwife   I hate when I hear one of the kids has to miss something...  those were the times that upset me the most when Stephen was sick!  I hope you two have a very nice afternoon baking cookies and cuddling! :hug:  (And, OMG, I am soooooo hoping Monday brings you some answers!!!!!!!!!!!!!!!!!!!!!)

Crohnsinct - :rof:  bad mommy!!!!  Between the wine, poles and, now, firemen ...  If there's ever a Desperate Housewives of Connecticut, I'm nominating you!!!!  :lol:


----------



## TangieC

Honey, I am praying you get your answers soon! You need to know so you can get her the help she needs!  I hope she feels better soon and I hate she's missing out. But at least you gave her an alternative that is awesome! Nothing better than spending time with Mom


----------



## Suzysu

:ghug::ghug::ghug::ghug:
Thinking of you and sending good vibes your way - hope the weekend is not too bad and am keeping my fingers crossed that Mondays appointment goes well - ie they DO something xxxx


----------



## Sascot

So sorry to hear poor Grace had to miss out!  Hope she managed to enjoy the cookie making and dvd.  Hope Monday comes quickly


----------



## crohnsinct

Tesscorm: well who do ya think taught me to use the pole?


----------



## Farmwife

See what I mean. I have NO time to get on here but I started thinking about you guys using my thread in an undesirable ways.:ybatty: Fear brought me back and I was right.:ymad:

crohnsinct - who you kidding..... the only pole you know to use is for beating off bad guys in the city.:ylol:
Also crohnsinct that's not by boy's name. Now don't you start rumors about me.:lol2:


Good night y'all. My nephew was back in the hospital. Nephew was  having a seizers last more than an hour. While in the ER he had his first Grand Mal seizer. My twin was with him alone when he started shacking and eye's rolling back in his head and not breathing right. She called me crying and my mom and I rushed over. He's fine but they'll have to up his dose again. My family is starting to see what the next few months might be like. Long day.:yfaint:


Update:
Pains for Grace in knee, eye, belly, BM and after eating.
Once again spitting up water at meal time. Pain to eat.
Still holding her weight. YA!


----------



## crohnsinct

GUNNER!!!!  How could I get his name wrong?  I LOVE that name...very macho,,,good name for a fireman if you ask me...maybe that's why I got the name wrong...too busy daydreaming about firemen!

Sorry to hear about your nephew.  We will remember him and your sister in our prayers.


----------



## Tesscorm

Your poor family! :ghug:  It must have been horrible for your twin!  I'm so sorry you have so many worries now!  I will be thinking of you!!! :ghug:


----------



## DustyKat

I hope you and Grace have a special Mum and daughter day together...:hug: It surely is so hard when they miss out on things, just breaks your heart. 

Thinking about you and your appointment Monday! 

Dusty. xxx


----------



## upsetmom

Good luck with your appointment


----------



## Farmwife

Great news, Grace slept through the night!!! YA!!!:soledance:
Of course she did, she'll get all better right before her appointment!:angry-banghead:


----------



## Suzysu

YAY! that she had a good night's sleep!!
Hope your nephew gets better soon and hope that Monday goes well - will be thinking of you - I won't be able to check up on the forum until Thursday as sadly I have to go to Ireland for my poor Grandpa's funeral. Not knowing how it all goes on Monday will be difficult - I'm not sure how I will bear the suspense! - GOOD LUCK xxxxxxxxxxxxxxxx


----------



## my little penguin

Hugs...
Glad she was able to sleep .
Sending good vibes for you to be strong ( aka use the Ibd mommy backbone crohnsinct gave you) and tell the doc " we want answers and when should we be back for a scope"
More than one parent has had their child scoped with in a few days of talking to the Gi .

Our Gi did this for our older son given DS's Ibd history.
Thankfully he was clean but still needed done.


----------



## QueenGothel

Yay... I am so glad she is feeling better.  I wouldn't say that at the doctors appointment.  Don't lie but don't spill your guts.  Something are best not said point out all the reasons you need the scope.  Hugs to you both.  Let me know if I need to bring the vice. 

	
	
		
		
	


	





I hope they can control your nephews symptom... Poor kid.


----------



## Tesscorm

Write down all her symptoms and possible causes of them and what DOESN'T cause them (like a 'cheat sheet) so if they try to tell you something like IBS, you won't let them sidetrack you and immediately ask how IBS could cause joint pain, etc.  I also find it really help me to have my list of questions with space to write the answer. Again it keeps me from getting side tracked and forgetting a question. When the apptmt seems over, I look at my sheet and if there are blank spaces (ie unanswered questions), I do say I still hv some questions. I always kick myself when I hvnt done this bcz that's when I forget stuff!

Also, - use lots of 'but, what about' and 'yes, I see, but I wonder abt' etc. Its a non-confrontational way of pushing the point when they say 'no', they'll be forced to answer all your doubts abt their 'no's. 

Good luck!  Will be thinking of u tmrw!!!  I hope you get answers and they agree to a scope!!!  Hope she's having a good day today!


----------



## Tesscorm

One more thing...  If they tell you they don't believe its ME or Crohns or whatever, ask them what symptoms she's missing (ie why they its its not 'whatever'). It cud be something you've forgotten to mention or didn't 'connect'. When Stephen was at emerg, just as the dr was leaving, Stephen said really just in passing 'oh, yeah, I had some canker sores a few weeks ago...'. I don't even know why Stephen mentioned it as I didn't think they were connected at all. But the GI jumped on it and started asking a whole bunch of more questions.


----------



## momoftwinboys

Will be thinking of you and grace tomorrow. Docs owe u guys some answers and more tests if they do not have the answers. Grace has suffered enough without a comprehensive treatment plan. 
Hope your twins son is doing ok.


----------



## Sascot

Yay for Grace sleeping through the night - bet you didn't :lol:.  Hope your nephew gets his meds right so he feels better.
Good luck with the appointment!!


----------



## QueenGothel

Will be waiting for your response.  Be tough momma.  Be nice, but tough.  They do like informed parents.  Try not to go off on tangents talking about odd treatments they wouldn't do.  Don't mention the Internet either.  They hate google and webmd.  If you bring anything up about the Internet refer to pubmed or .orgs they will take these more seriously.


----------



## Clash

Good luck at the appointment, hope the GI puts you on a path of healing for your sweet little Farmgirl!!


----------



## Twiggy930

Good luck!


----------



## Lewiss mum

Good luck today mrs . Lewis had to wait 3 years for his scope , as every docter barr 1 said its not crohns, and we had one doc backing us , I went to my gastro doc and let out 3 years of sleepless nights , and pain that my ltttle boy had on him and boy did he listen lol 2 weeks later we were booked in for a scope ..... Just saying lol... Good luck today .xx


----------



## Farmwife

:dance:We're almost ready to head off.:dance:

Just a special thanks to you all for your encouragement, advice and laughter though these tough days. I deeply appreciated it.:kiss:
 Also I felt a need to tell y'all that because we're heading into the city and I might be killed.:voodoo:
Now where's my rolling pin????:rof:


----------



## crohnsinct

It's Monday!!!!!!  

Forget the big girl panties...you put on your b#@3ch girl panties!  Channel your forum friends go in there and don't let them push you around. Don't forget your log!   Love Tess and Mary's advice!  I know as you get closer the prospect of a dx is more scary and it will be so tempting to accept more wait and see or maybe this or maybe that but think about how much she has been suffering.  It is time for answer!.  

Good luck with the drive, the city, and the appointment. Let us know when the scopes are.


----------



## DustyKat

Just remember to keep scanning and looking over your shoulder!!! :shifty:

Good luck hun! You are in my thoughts! :goodluck: and above all else...be safe! :lol:

Have a safe trip! 

Dusty. xxx


----------



## kimmidwife

Good luck today! We are thinking of you guys!


----------



## Tesscorm

crohnsinct said:


> Forget the big girl panties...you put on your b#@3ch girl panties!


:lol:  Love your advice the best!


----------



## Farmwife

Quick update:


Meet with GI today.
He's concerned about ALL her symptoms.
Ordered a Barium Enema. Waiting for call back. Could be this week.
Put her on Zantac
Referred her to Rheumy, Hematologist and OPT Doc (eye's). 

Everything was going well when Grace needed to go to the restroom.
I came back to hear the GI say, no, no,no IBD would have blood in stool and she would be sicker.:ymad: Scooping would be the last thing needed. My hubby said GOOD.:ybatty: The GI did admit at my _*pushing*_ that she "could " be heading in that direction so the Barium Enema will help show if it is. I asked about her stomach and he said he feels the Diflucan can cause that and said get her off and if no change , give him a call and we'll set up the scope and he'll probably do the other one too.:yrolleyes: He also wants her to start Zantac. I said last time things got worse in her GI track. He said we'll have to wait and see and put her on Senocot once or more a week. He ordered more labs. We'll get that done tomorrow.
I got home and opened a letter stating our GP is retiring soon. So now I get to GP shop.:ymad:

Grace is doing OK. She lost 2 lbs but seems happier than the last few days.

So there ya go. Not everything I want be more than I thought.:hug:
I pushed and got everything but the scopes.:confused2:
I still hate the city but nicer with the Tom-Tom.:tongue:

Oh, we might be heading back to her allergist because after 1 1/2 yrs. of no problems her wheezing/asthma is flaring up, all at the same time.


----------



## crohnsinct

Ugh!  Sorry we are experimenting some more and that it is more wait and see. 

NO BLOOD IN STOOL = NO IBD???!!!  Since when?!  I could just hear the screams from over half this forum now.  And I am sorry...she would be sicker?!  Well she is pretty darn sick right now if you ask me!!!!!  How would he like it if his small child were in poor Gracie's condition?  

A new GP? Well I know you like the current one and I am sure he is lovely but here is one thing I could get behind.  

So how long are you to wait to give the "getting off Diflucan" to make a change..ie: when can you call and request scopes?  Was the Diflucan for the Candida?  So he didn't buy the Candida theory?  What did he say about those blood results from a while back? 

Yay for the specialist referrals. Celebrate those victories! Although it might mean more trips to the big bad city!


----------



## Sascot

I agree with Crohnsinct - What!!!!!   You can tell him my son has never had blood in his stool ever :ybatty::ybatty:
Sorry to hear they are not keen to scope, but at least you are getting more done.  The barium enema should show a good deal and at least they did say they would possibly scope!  Hope the tests go well and Grace copes ok with them all.  Try and have a relax this evening before it all starts


----------



## my little penguin

Hugs...
So frustrating .... We did hear the you need blood for crohn's but at least ours still did a scope since DS complied and started small amounts of blood.
Glad you got referrals. Hope they can fix some things.
Maybe your Rheumo will be like outs an push things so you don't have to.
2 lbs is a lot for a 3 year old.

One other thing to google since her asthma is acting up as well.
MCAS- mast cell activation syndrome .


Good luck on the extra doc visits you will be a pro at the city .
Also remind your your DH --you do the talking he just takes notes 
In case you miss anything.
My DH has spoken up more than once - I feel your pain.


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## Farmwife

Barium enema just scheduled for this Friday.
I just hope it helps. 
I still feel her problem area is in the small bowel.
But this still has to be done!:confused2:

I might have to go with out hubby.
Watch out big city here I come.:ymad:


----------



## imaboveitall

Hi Farmwife,
I'm back after a long hiatus and catching up on threads and saw this one...just read it all the way through.
First of all WHAT a cutie she is :rosette1:!

As others above have said, NO BLOOD =NO IBD= doc is a moron, plainly put. 
Violet and MANY MANY others have never had blood in stool, either frank or occult.
That said, I have two old (20+ years) ex-colleague physician pals (neither are GI men but one has an uncle who IS a GI and he says he agrees with him that: "I've never seen a case of Crohn's _without_ bloody diarrhea".
My point is that MANY experienced docs subscribe to this totally erroneous belief.

Small bowel disease can be asymptomatic and doesn't cause bloody feces.
Little Grace's symptoms sound more like colonic disease which yes, is often bloody but NOT ALWAYS.

Personally I am appalled that they aren't RUNNING to scope her.
The ignorance in the med profession kills me. Please insist on scopes, both TOP and BOTTOM. 

As MLP said, mast cell activation disorder OR systemic masto (not the same thing) can cause similar symptoms to Grace's. The pathologist must stain a certain way to look for mast cells in the specimen and ask for a tryptase level to be done when they draw bloods.

HUGS  :Karl:


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## QueenGothel

I love this smiley now.

So this barium enema is with an MRI? Cat scan?  Hoping he means MRE? I am disgusted with the fact that he requires blood to be present to do a scope.  Where did you go? Motts or DMC?  Whom did you see?  Sorry but I am dumbfounded completely.  I know almost all of them down here.


----------



## Farmwife

Mary-We went to Devos in Grand Rapids. 
Now to every one that's upset....he's only doing what he thinks is right. I don't believe that he would ever put Grace in danger. He's very knowledgeable and friendly. HOWEVER Grace is NOT typical and doctors don't always "think outside the box". Lets face it most GI doctors don't see 3 yr. olds for IBD. He's NOT against scoping her but he feels she doesn't have IBD. I pray he's RIGHT.:hug: Hopefully this test or more symptoms will change his mind. I just felt the need to defend him a little.


----------



## Farmwife

Mary the doc said an x-ray.


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## my little penguin

Got it you like your doc and trust him that is a good thing.
Your right most Gi 's don't treat 3 year olds with Ibd  our didn't treat many 6 years olds at the time either .
The problem we have here is everyone else has Ibd blinders on - that is what we. know inside and out since we live it everyday. 
If you were to go to another forum. Guarantee she would have a lot of flags for that disease as well since FTT , abdominal pain, joint pain are all very non specific .
I would recommend you get a referral to the big city hospitals diagnostic referral group they take cases like graces and help you determine the big picture not just the Gi picture which may help her more.


----------



## Farmwife

Trust me mlp I'm not against looking at other options. 
As much as I love everyone here, I want to find the cause more than anything.
I think that's where Mary's hospital, she took Rowen to would be the BIG hospital to go to. 

My hubby just got in and we have lots to talk about!

Thanks y'all.


----------



## Catherine

i know the GI is not scoping but is at least doing further testing.

All our advise is clouded by what we know now.  I did not push when the GP said no scope due the thinking we were dealing with IBS not IBD.

Any sign of worse symptoms get on the phone to GI.

Wishing you all the best.  Make sure you get copies to all testing results.


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## imaboveitall

The doc saying that with IBD there shall be blood is why I reacted by attacking him.
A pedi GI should know better for sure.

The reason scopes are paramount isn't to determine if this is IBD per se; the importance thereof is, you obtain tissue samples, thence histologic data which shall reveal disturbance(s) at the cellular level. What we call, " hard data".
IBD is only ONE of many disorders that can be ruled in or out definitively via histology.
That kiddo has something very wrong, whether it is immunologic, endocrinologic, metabolic or hematologic in etiology and a tissue specimen from the gut is a good place to start.


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## jmckinley

Yay for the answers that you did get! Yay for progress! But totally disagree about blood=IBD!! Just plan on telling them there's not a change and getting it done. You'll be much more comfortable knowing they took a look at her!

Back to the big city!

Sorry your GP is retiring. I know how it feels. I loved LOVED Ryan's Pediatrician. He retired when Ryan was 3. I was so sad to see him retire. I like the one now, but he is oh so hard to get in to see. 

All in all, I'd say it was a good GI visit!


----------



## Farmwife

imaboveitall said:


> The doc saying that with IBD there shall be blood is why I reacted by attacking him.
> 
> 
> 
> .



I didn't take offense imaboveitall .:hug:
crohnsinct has prepaid me to have a thick skin by being so mean to me almost daily.:confused2:

:rof:


----------



## imaboveitall

Suffering kids and docs who make dumb remarks are a combo that gets my back up. :ymad: I know you knew I meant no offense :smile:.


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## crohnsinct

Oh sure Julie returms after a long absence and it is all kisses and roses and I am the bad guy! Talk about your prodigal forum member!  I am calling the wedding off...AGAIN!  

I am also not attacking him...btw...but seriously Gracie is a complicated case (and not because of her crazy mother) and there has been so much wait and see and maybe this maybe that...I think things need to move in some direction and agree with Julie on the scopes being a good start.  

Hey Julie, I know you just got back and I don't want to scare you away but have you seen some of Izzi's threads and how horribly wrong we can turn things on this forum? Good thing you are back to bring back some dignity to the group:rof::rof:


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## Tesscorm

I have nothing to add to all the great info above!   But, I'm glad you will be meeting with the other specialists, especially the rheumatologist!  Please be a PITA mom and push for those appointments quickly!!!

And, no blood here either! :ymad:

And, yep, to bring the husband or no...???  Would like the support but could be more trouble than it's worth! :lol:  I usually go alone!   (I'm actually setting up a Skype account so I can bring all of YOU!!! :thumright


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## upsetmom

NO BLOOD NO IBD!
That reminds me when my daughter first got diarrhea the GP said it can't be IBD she has no mucus... well to this day she's never had mucus. 

I still think Grace needs to be scoped.

Oh well at least they're doing more tests


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## DustyKat

No blood = no IBD = my kids don't have Crohn's! Yeehaw! I am doing the happy dance! !!! And don't anyone dare burst my bubble! :yrolleyes:

Oh well hun, he may not have come at scopes just yet but at least he is starting to look ay? Any diagnosis is a process of elimination so this a start and you can now get the ball rolling. I hope it gives you the answers you need but if not it gives you the power to demand further investigation and it will continue that way until you do indeed get the answers you need for your baby. 

Thinking of you, :heart: 
Dusty. xxx


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## imaboveitall

Dignity...wait let me finish scratching my left butt cheek and I'll answer that...hmm is that a pimple...


----------



## TangieC

Thanks for keeping us posted  The no blood=no IBD makes me shake my head. My little boy didn't have issues with blood until AFTER he was diagnosed and on the mend. But I feel that Dr. C and his associates had considered it and wanted the scopes to prove it.  And isn't mucous more a sign of C-Diff than of the IBD anyway? I still feel pretty clueless about Crohn's and how it manifests, and trying to get my 4-year old to talk to me is hard to say the least! Praying for you Farmwife!!! Feel free to PM if you want to talk  Every time I sign onto the forum, I am more and more grateful for it!


----------



## Crohn's Mom

Hmmm...my daughter had approx. 5 foot of bowel removed last year and an ileostomy placed.  She also had many, many fistulas, and 2  VERY large abscesses ~ laid in bed for a year straight except for doctors visits and the occasional trip to the living room to watch a little tv with the family.  But hey. never ever did she have even a single drop of blood in her stool ! Hmmmm...Hmmmmm....Im with Dusty ~ time to celebrate ?!!?? LOL 

Seriously, I'm glad youre at least getting some tests done  And happy that she's feeling "ok" for the moment.  It's a shame this is such a long process and so complex, but youre doing a fabulous job ! :ghug::ghug:


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## Farmwife

Change in the air!!!

Talk to head nurse, who'll talk to doc.
She was NOT happy, not happy at all and said neither will doc be!!!

Change in the air!!!

She called and got us into the pead. eye doc here in town for tomorrow and then to the docs (GP) office to get blood drawl and "talk" to doc about next step.


Of course I could be blowing this all out of proportion and be let down yet again.:yrolleyes:


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## Tesscorm

It is a shame that all tests can't be done immediately and am frustrated for you that they couldn't just do the scope :facepalm: but, at least you are seeing some new specialists and will get new thoughts (especially from the rheumi).  Unfortunately, there is a 'process' to be followed and, as frustrating as it is, sometimes the best you can do is nudge it along. :ymad:

Just keep doing what you've been doing, stay on top of everything... ie, keep calling back and pressing for rheumi appt date, etc.  And, barium x-ray may show enough to warrant a scope??

In the meantime, hopefully, she stays feeling a bit better :ghug:


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## Lewiss mum

Hey farmwife I've just read through the posts and caugt up on gracies docs analysis I say go with your gut instinct whatever that may be lewis never had blood in his poo he just had the abscess.s it took us 3 years for them to do a scope lewis had just turned 3 when his probs started if your trust your doc then go with that we didn't and went to see 3 others and out of the 4 1 did say she wasn't happy so she pushed for a scope took 2 years but he had it and well the end is Met all you guys. and in septmeber he was diagnosed with crohns . Hope gracies o.k. Today .xx


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## Farmwife

crohnsinct said:


> Hey Julie, I know you just got back and I don't want to scare you away but have you seen some of Izzi's threads and how horribly wrong we can turn things on this forum? Good thing you are back to bring back some dignity to the group:rof::rof:



crohnsinct stop trying to pull people into our insanity!!!:redface:


Update:
Grace is happy but.......................................
Weakness on her left leg. Constantly falling but her leg is not in pain yet. Last time she had this for a day or two and then bad knee pains until I gave her three doses of meds to make it stop. WHAT COULD CAUSE THAT?
My doc still hasn't heard when the apt. for the rheumy is yet.

The GI said no miralax or Senocot till after the test on Friday.:shifty:
 Nervous about that given last time of her prolapse and bad pain.


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## imaboveitall

FW, Violet had unilateral leg weakness for a few months last spring.
No joint inflammation, no injury. Just the knee giving out. She was in phys therapy at the time for her POTS and the phys therapist couldn't see anything wrong, she saw a Big Dog rheumatologist during that time, he found no reason for it.
It did NOT HURT. Just couldn't support her weight.
It resolved on its own. It was very odd.

That cutie doll needs the rheumatology appt, I am so glad she is going.
Waiting is the effing WORST :voodoo::voodoo::voodoo:


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## kimmidwife

Hi Farmwife,
Been running around and just had a chance to catch up. ( also had to watch the debate last night so no time to go on the computer). Anyway I am glad they are doing something but am thinking is an X-ray even a barium one really going to show anything much? Are they doing a fluoroscopy maybe? ( it is a more intensive X-ray where they take live pictures as the bowel processes the barium). I still say keep the push on for them to scope her. Like the others said she needs the biopsies done so you can know microscopically what is going on.


----------



## my little penguin

Fwiw DS 's first official test was an upper Gi with small bowel follow through ( X-ray fluoscopy) it showed nothing except his system moves things slowly through the gut.
The radiologist was never able to visualize his TI. He even told us then and there that was good since it meant he didn't have some horrible like crohn's.
Wish I had seen that doc again to show him the biopsy report.

Good luck Friday


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## Suzysu

Well I am not sure weqather to be happy or sad for you - at least things are getting started and at least she is having the barium enema soon.
SOOOOOOOO glad she is finally being referred to the other guys as well.
Weather this makes any difference or not but Freddy has been on 5mls of Senokot twice daily for a long while so if the twice weekly senokot does not work then it is possible to increase it (it can make their poo bright orange so be warned!!).
I know it is so frustrating having to do one test at a time but at least you are on the right road. If the enema is normal the GI will probably be like 'oh well its normal - see nouthing wrong - just carry on as you are she is perfectly healthy' - do NOT accept this if you feel that there is something wrong (which I think given what she has been through I would be surprised if there wasn't) - if it's normal then ask him 'so what are you going to do now to find out what is wrong with my baby?'
Good luck for Friday - and especially good luck in the city (I do hope there are no nasty Crohn's inct types lurking around!!) 
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Suzysu

grrrrrrrrrr - my computer only showed me half the posts AFTER I had posted the above!! so now it makes no sense!!!! sorry if I seem like a crazy person!! and hope you get to see all the doc's SOON and hope that poor grace survives without the senna and miralax till Friday with no nasty prolapses etc. xxxxxxxxxxxxxxxxxxxxxxxx


----------



## Farmwife

Update:

Grace collapsed in the store with belly pains.
I got her to the car and she cried most of the ride home.
She said she needed to use the bathroom and went poo.
The BM still had undigested blueberries she had 5 hours earlier.
Right NOW she sits on a heating pad because 15 minutes ago she starts crying mama, mama my knee, my knee. Also right now her wheezing/asthma is acting up.

Tomorrow is pead. eye specialist in town. Then labs will be taking after that.
 So she will be a ball of fun tomorrow night.:yfaint:

I'm ready to throw in the towel and crawl under a rock. I just fell like no one is going to help her. Keep in mind I running on empty and for the next two days things will be just a crazy.


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## my little penguin

hugs hugs hugs.

 I could have written your post many times over the last two  to three years.
It does get better you will get there . You are doing your mommy best and getting her some tests.
WE did find the other specialist  tend to push the GI so hopefully that will happen in your case.
They may see XYZ which is common in GI problems ABC-- so they talk tot he doc.
 Pretty soon you have a clearer picture.

Do you have a pulmo handling her asthma ?
 An asthma action plan?
http://www.healthychildcare.org/pdf/MedAdmin/AR_AsthmaAction0-5.pdf


IF she is having symptoms ( needing albuterol for wheezing is a definite one) more than twice a week then typically she should be seen and possible add or change her maintenance meds ( sorry three asthmatics in the house = too many yeasr of exp and ER trips.)
Good luck this evening


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## Farmwife

mlp she had a bout of asthma when she was one that lasted 6 months. Never to be seen again till a few weeks ago. Basically when everything flared up so did it. We have a nebulizer but no meds for it because it's been so long. Our allergist handled it last time.
If it stay then back to him we go. Of course he said kids that young don't get full blown asthma. It's just called wheezing. :yfaint:My mom about hit the roof and said your bother was a severe asthmatic since BIRTH!:yfrown:


----------



## my little penguin

IF she is actively wheezing - get her to the ER.
SHe needs albuterol period.
They can call it what they want but needs albuterol. I have seen with Ds how fast they can get bad and given she is not on any meds to keep inflammation down in her lungs.
Do not wait things tend to get worse in the middle of the night since your cortisol goes down so wheezing increases.
This not something to fool around with.
They can give you meds at the er for your nebulizer.
IF Ds is wheezing for more than 20 minutes we have to go to the ER and that is with albuterol - since you have none you need to take her in.
HUgs


----------



## my little penguin

To be offically dx with asthma you need three episodes of wheezing/severe coughing within a year when they are too young for a lung function test.


----------



## TangieC

Praying for you! I hope maybe these things will push along the tests, etc. I still don't understand why everyone seems to be writing this off! I think we all need to come and pay you a visit! A bunch of angry parents with you will get the job done...or get us arrested!  Seriously I am praying for you to get the answers soon! We love you!


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## jmckinley

:ghug:  Hugs Farmwife! I really hope you get some answers for Grace soon! I would be ready to camp in the Dr office like Occupy GI!

If her asthma does not stop, get to an ER! Ryan's old Pediatrician used to tell me to look at his ribs. If the ribs really show (like the skin is going between the ribs when breathing) then she is having a really hard time and she needs a breathing treatment. Also watch the number of breaths per minute. It should be under 50-60. We have gone to Dr before to be sent straight to be admitted when Ryan was Grace's age.

I am so sorry. I know you are on your last nerve with this! Here for you!


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## Farmwife

Thanks everyone.:hug:


Update:
Grace asthma is getting worse; off this morning to get meds.:tongue:

I'll be off for a few days. Pray for Grace. The test is three hours and NO sedation tomorrow.


----------



## upsetmom

Good luck ....:ghug:


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## Suzysu

hugs hugs and more hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
you will get through this, and so will Grace, just take each day at a time - or maybe hour at a time.
My second child had 'asthma' since very young and all the Dr's kept telling me was 'he's not 5 he can't have asthma' they made me feel like I was mad, eventually I convinced them to put him on steroid inhalers (he would cough so much in the night that he would wake up with broken veins all over his face), because they were so blase about it in the summertime I stopped the steroid thinking he didn't need it - ended up rushing him to hospital bareley breathing - was awful - after that the Dr's did admit that he probably did have asthma and he is now on 3 different asthma meds.
Given that Grace has so much going on at the moment I think it would be best to get some ventolin from your GP - you don't want her to have any more difficulties.
more hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Suzysu

yet again my computer didn't show me the most recent posts till after I had posted the above! - sorry - hope Grace got the meds and wil be keeping my fingers crossed for her tomorrow xxxx


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## kimmidwife

I hope Grace is feeling a little better today.i was just doing some research for Tess on the thread about her son about fecal calprotectin testing. Maybe you could ask the doctor to order that test for Grace. It is a simple stool collection and if it comes back positive it is good evidence that she needs to be scoped. It may be a good first step.


----------



## Farmwife

Eye's look good! Ya!!!:dance: Perfect vision!

The pead. eye doc said that Grace might be having migraines. :ywow:
He said this is how is can start and she might get abdominal migraines later on!:voodoo:


Update: 

Grace is happy and no pains as of yet.:dance:
Leaving the WEE hours of the morning. Be back I hope :shifty:5 pm.


----------



## Jmrogers4

:dance::dance::dance::dance::dance:


----------



## imaboveitall

God love you guys :Karl:
I have been down the asthma path also. V was asthmatic from ages 2-4. Viral trigger, twice in six weeks in ER in status asthmaticus back to back nebulizer tx did nothing. She had to have solumedrol IM to bring her out of it. Pedi pulmonologist said ALWAYS keep prednisolone in the house and if 2 back to back nebulizer tx didn't bring her to baseline, USE it 3-5 days at 30mg/day. He did not hesitate to call it asthma.
My point being, hers was INFLAMMATORY in nature, not due to bronchospasm.
Grace's may also be.

God I hope you get answers, and soon.

With love,
Julie


----------



## Sascot

Glad Grace is feeling ok and eyes are looking good!  Thinking of you!


----------



## QueenGothel

I just wanted to say to Farmwife, and izzysmom...

GO TIGERS, sweep victory.  AWESOME!


----------



## Farmwife

Right on!!!!!


----------



## Farmwife

The hospital has given us a social worker. Is that normal????
She called and introduced herself and said the test came back good but...
The GI does wants Grace to do a mobility study. 
Only a few hospitals are set up for this. 2 in Ohio. 
Sorry girls she never brought up Chicago.

We meet with our GP on Thursday to discuss our next options.

What to do???? :confused2:
Go to another GI and see if he scope her? What if he doesn't???
Stay and wait 2-4 months for this study to be done???? 
Something is wrong with her track. 
What in the world is a mobility test/study???:yrolleyes:

Update on Grace:

Happy but........not hungry much, bathroom trips have double: still liquid to soft and pain in her bum tonight. Oh let's not forget her worsening cough. Still wheezing BUT no full out asthma attacks yet.


----------



## Farmwife

Myreinhard said:


> I just wanted to say to Farmwife, and izzysmom...
> 
> GO TIGERS, sweep victory.  AWESOME!



Oh Mary I had to tell you this.

My nephew was taking by medical transport to Mott's Hospital on Friday. His symptoms are worsening for the Epilepsy. 
Yes that sad but my pride come in when my 9 year old nephew LOOKS at the ER doc and says, 
WE'RE STATE FANS. :ymad:
The ER doc says, 
WELL I STILL TOOK AN OATH TO SAVE YOU!:rof::tongue::rof:


----------



## my little penguin

First try breathe.
See what the GP has to say.
 In the mean time-
 Call both of the two centers in  OHIO.
Tell them you want a records review and a second opinion.
That way - fresh set of eyes can look over everything.
They can schedule whatever set of tests they feel she needs including a scope/motlity testing and anything else might as well get the most out of your trip if you need to head that way anyways.

I know a few GI's at one of them so PM me if you want. We went through the process twice so worth it IMO.

As far as the social worker...hmmmm.... not too sure on that one.
DS has multiple specialists - no social worker but I do know some of the larger hospitals sometimes throw those in as part of the package  just like a nutritionist or psych eval.

hugs.


----------



## my little penguin

Is she on albuterol for the wheezing & pred?

Did you call your allergist? they could get her in for a "sick" visit which it sounds like she needs.
wheezing should not be happening even with albuterol.
 if so you need to head to the ER.
What does her GP say? can you call the oncall ped?


----------



## jmckinley

:rof::rof::rof:

Glad to know we aren't the only ones getting into to trouble with sports affiliations. Our GI is an Auburn and Mizzou fan. Bama played Mizzou the weekend after Ryan's first reaction. GI came in to see him with his Mizzou stuff on (Ryan was decked out in Bama gear)...GI says "you just wanted to come back next week so you could brag!"  :eek2:


----------



## QueenGothel

Food study is when they have her eat a certain food and see how long it takes for her stomach to digest it.  I believe, don't quote me on this.  And yes a social worker is the norm in Michigan.  I had one at both hospitals, once I became more demanding.

GO BLUE!






He is funny glad he is keeping his sense of humor.  I hope he is doing better.  He is in the right place.


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## Farmwife

Thanks:hug:

But when he first mentioned it on Friday he was talking about the rectum!
Today it sounds like he wants both ends done!
 MLP mentioned in another thread that this study could be painful.
How so mlp, or don't I want to know. BTW I love your idea about them reviewing her case.
:ghug:
Good night y'all!


----------



## Clash

I hope the wheezing is resolved soon! Sorry to hear about your nephew, Farmwife but how adorable about the fan statement.

Jmckinley, my hubby is originally from Alabama and both of his parents are Auburn alum. Hubby is a UGA alum but is all Aubie at heart, which means he is having a rough go of it this year!


----------



## upsetmom

We also have a social worker at the IBD clinic. She comes to talk to us at every visit.


----------



## Sascot

Sorry to hear that Grace is still having all the toilet issues and cough!  I would agree about asking for a second opinion, have to say I really think it would be best for a colonoscopy - I can't understand why they won't do one.  It's not like she hasn't been sick enough or in enough pain. 
The motility study is a good idea, but another 2 - 4 months wait is very frustrating.  No idea about the social worker.
Hope they manage to get your nephew doing better.


----------



## DustyKat

A motility study is when they look at how food and fluid move through the digestion tract and it generally means the upper GI tract, so can include the oesophagus, stomach, duodenum and into the small bowel. 

Social workers seem to be part and parcel of the hospital team here in Oz. Every time my kids have been in they pop by and see how things are going and if they can help with anything. 

Dusty. xxx


----------



## imaboveitall

Oh God, FW...this is absurd.
They need to scope her already and obtain tissue specimens and determine what is going on at the histological level. Why they refuse is beyond me. I cannot imagine.
She is symptomatic, failure to thrive and they are going to wait 2-4 MONTHS?

I am speechless. :voodoo::voodoo:


----------



## crohnsinct

Sorry I don't know much about the motility study but I have thought that maybe that is Grace's problem so sounds like a good thing to investigate me.  As for the pain...Bah!  Little farm princess is a tough girl.  That last test with no sedative...all the pain she has endured...she laughs in the face of pain!  

Now, as for the 2-4 month wait...I cry B.S.!  I would also want to know from the doc how a motility issue would be causing all the blood result issues and why he is so sure it is not IBD because to make this poor child wait another 8 weeks he must be pretty darn sure it isn't IBD.  

I love MLP's suggestion of just making the visit in OH a complete visit.  Call and get the test scheduled and  get in to the GI team there.  SEnd your whole file oh and your journal to for good reading!  

Good Luck...hoping and praying for an answer soon!


----------



## crohnsinct

Oh and all your sports talk is really entertaining.  Our puny little state doesn't have a major sports team...heck no real big college team either...well except UCONN Basketball. 

But heck I think we are the decorating/food capital of the world ala Martha Stewart so if you need to platter those special brownies real nicely I am your gal!


----------



## Tesscorm

Still sending hugs for you and Grace!!!  The 'waiting' is sooooo frustrating!  I'm so sorry that things just can't get done sooner!!!


----------



## Clash

Hope the motility testing results in some answers for your little Farmgirl. I have to say you have the patience of Job! Maybe, the GI really doesn't think IBD and this direction goes to what ever he is thinking. Did he mention he was specifically leaning toward? I hate that you are having to do all of this waiting, I know that you are just hoping to get to the bottom of things quickly so you can start getting Grace to feel better.

 I don't really have any experience with the testing you are speaking of, although can someone tell me the name of the test where as you are drinking the barium shake they have you on this table that shifts and moves different ways as they take xrays? I assumed this had something to do with testing for motility issues. It was the first test our GP ordered for C before sending him to GI. We were sent to GI only after anemia showed up.

Good luck with the upcoming tests, I hope they find answers for Grace.


----------



## kimmidwife

Sending hugs and agree a second opinion is what you guys need!


----------



## Johnnysmom

Farmwife,

We were never given a social worker but I think you should take advantage of whatever she can do for you!  She should be able to navigate all of these different Dr's for you.

If you find yourself in Ohio for testing for Farmgirl give me a call.  We are in Cincinnati and my guess is Cincinnati Children's is one of the hospitals that has that study.  PM me and let me know and I will give you my number.  

Hope you get some answers soon.  (((((Hugs)))))))) Tiffany


----------



## jmckinley

Ryan's first GI that we loved is at Cincinatti!


----------



## pcbgirl227

I have read thru most of the threads on your daughter but not all yet, so you may have done this already. I went thru the Mayo clinic in Jacksonville with one of my blockages and was told Mayo clinic in MN was awesome as well. Dr. Cangemi(sorry can I say his name??) was an excellent GI and actually who got me started on biologics. I was told by a patient Mom at that time, (they had just transferred to Jax from MN and daughter was 6), that the Mayo clinic in MN was remarkable and had an excellent Ped GI. Hope this helps!:rosette1:


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## Farmwife

:thumright:We had the BIG decision making appointment with our GP and...............

He does feel that the GI is being good in what he believes to be the possible problems and ruling them out. However the mobilities study he wishes to do will be of more benefit IF _*scopes *_:thumleft:are unable to answers that question properly.  Scope are a must I said!!! 
NO GO, TILL THEY SCOPE MY GIRL! Doc agreed!
He found a GI Doctor at the University of Florida called Sarah Glover and her specialty is IBD and Mass Cell activation which ME is a part of.
He will try to contact her today or tomorrow. She was at Chicago GI clinic for years so he's hoping maybe their would be someone closer to us that would specialize in it the ways she does. He is STILL going to contact our GI and "discuss" Grace in more length and see if perhaps he would do the scope and let the biopsies be sent else where to get the stains.:thumright:
He's just thinking of more that one option.
  Still no word from the rheumy dept. :frown:
Blood work came back and......
LDH back to normal for now!
WBC is still a problem along with a few other 
but hey their not that big when I'm in my nice bubble!:rosette1:


UPDATE::frown:
Belly pains.
Left leg giving out.
pains at night again
Pee-pee accidents at McDonald's play yard.

Black specks AGAIN in her stool. IS THAT BLOOD OR NOT!!!!!!!!! 
No iron pills no berries of that color. So what could it be????

:soledance:


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## Tesscorm

I looooove these bubbles!!  I'm bouncing along right with you!

I'm sorry still nothing more definitive but, at least, he is in your corner and trying to get some answers.

But, sorry I'm sure I missed something along the way, is the motility test definitely scheduled?  Will it be of any diagnostic value if you don't get the scope?  I hope you get the rheumi apptmt soon...  from what has been said on the forum, the rheumi can often be a big help in moving towards some sort of diagnosis.

:ghug:  (you know...  this little smiley kind of looks like a bunch of bubbles hugging :ybiggrin


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## Suzysu

Sounds like you have a great GP who is ready to fight your corner!! - Yay!!
I hope you get the scopes scheduled soon - and get some answers for poor little farm girl!
Totally love the new Avatar!! - what a cutie!!
sending hugs and good thought's your way! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Farmwife

No Tesscorm the test is NOT a for sure thing yet.
We're not against it but scopes are the way we what to go.

Our doc just feels that ME (Mastocytic Enterocolitis) would better explain her symptoms than anything else right now. Also he's hoping because of her age she would be a good test subject to follow through out her childhood. They are starting to think that ME is a strong precursor to UC and Crohn's. To study her might help put that puzzle together. Right now I don't care as long as we find out one way or another. Even if the scopes come back clear and no ME, then I would feel better about moving on to something else.


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## DustyKat

Oh no! Poor Grace...:hug:...I hate to see that she having hard times again.  

Since the GP is all for scopes I hope he can find a doc, speak to them directly and get the scopes organised...(((sigh))) I will keep my fingers crossed and my eyes closed tightly and repeat over and over again...I wish Grace could have a scope. :hug: 

Always thinking of you and your gorgeous girl, :heart:
Dusty. xxx


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## crohnsinct

Looks like Chicago is in your future like it or not!!!!!!!  Let us know when the scopes are scheduled and we will meet you there! 

I am starting to like this GP.  Good for you for sticking your ground.  

Scope! Scope! Scope! Scope!  (said in my finest chug chanting voice)


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## Sascot

Oooh bubbles, I like my bubble too :ybiggrin:.  No idea on the black specks in the stool - I would think it might be blood coming from higher up in her intestines, especially if she isn't eating anything that might cause it.
Sounds like your GP is getting the ball rolling which is great. 
I'll chant too - scope, scope, scope!!  Hope they get back to you soon.


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## my little penguin

One little secret we learned.
If your Rheumo is higher ranking at the hospital than your Gi things tend to move pretty quickly.
Just depends who you see and who is in charge of what.
Just saying if you haven't chosen a Rheumo yet- unless your Gi is the dept head then your out of luck.
Hope they can get to the bottom of it.
One thing that comes to mind if the gp believes it is ME( similar to mast cell disorder ) is there a reason why he is not starting her on the Zantac/Zyrtec/ cromolyn combo since they help ME and Ibs stomach pain???


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## my little penguin

Oh and singular would help her asthma and allergies as well so triple benefit.


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## Farmwife

mlp,
Doc told us to hold off right now on the meds.
He needs to find out what she can't have before scopes. 
Plus, how far away will the scopes be.
 Her wheezing is staying about the same. No big asthma attacks YET!
The Zantack I have and she was on that before and caused GI symptoms to get worse.
Matter of fact that's when the constipation started but stayed after she was off it.
So I think I'll push for a different kind.

I wish that rheumy would call again Grace is crying in tears sitting on a heating paid.:frown:
I took a video of it! I wish I had the e-mail to that dept. so I could send it and say look what your making child go through.:mad2
Good night y'all.:rosette2:


----------



## DustyKat

I know rest will be hard to come by but I hope you and little Grace are able to find some peace tonight. :hug: 

Dusty. xxx


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## kimmidwife

Yay scopes!!! :dance::dance::dance: I am so happy the GP is on your side and willing to listen. I have heard of Sarah Glover she is supposed to be really great. I am so happy you guys are hopefully finally going to get some answers. I am so sorry she is in pain again. Sending her hugs and you too!


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## Clash

It sounds like the GP is really in your corner! I hope you get some answers soon. Sorry to hear Grace is feeling bad. The new profile pic is adorable!


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## TangieC

You seem to be closer and closer to getting an answer! That is so exciting! It's so much easier to deal with something when you have a name for it. I'm still praying you get the scopes. I shudder to think what B would be dealing with if his GI had not ordered them a few days into his hospital stay. He said he just had to SEE what was going because he didn't want to rely on just blood work and stool samples. It made me feel better when all the nurses and other doctors (attendings/interns) at the hospital indicated they had complete confidence in Dr. C. Your GP sounds like he has his head on straight   And I agree...your new pic is so cute!


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## pcbgirl227

I am so sorry to hear Grace is not feeling well!! Give her lots of hugs from my way as well!!!:hug: And here's to wishing the scope gets done!!!! :goodluck:


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## Farmwife

Thanks all!:heart:

Just a quick hi.
My life has taken over the forum obsession. SORRY!
I hope you all are doing well and please know I think of you all ofter and PRAY your kiddos will be well.

Update:

Stable but.......not well.
Left leg is causing further problems and STILL no call back from the rheumy dept.

I pray I will receive word from the GP this week on what he's found out about ANYTHING!

I hope to check back in a few days.:heart: BYE:heart:

:soledance:


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## Sascot

What!  You have allowed life to take over from this forum  
Sitting here with my eyelids propped open after finally getting Amy to sleep (nearly midnight).
Hope you hear from the rheumy and GP this week!


----------



## Tesscorm

What could possibly be more important than this forum?   :lol:

Hope you hear from the rheumy or GP soon!  And that Grace is feeling well (leg and all!!!) :ghug:


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## DustyKat

Take care of you and your little angel Farmwife...:hug:...I hope you get some answers and soon! 

Dusty. xxx


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## Farmwife

Oh my crohnsinct stay safe in the storm.
I heard about it and thought of you.
If I see anyone on the national news screaming I need a laptop to get to my forum, 
I know it's you!

I'm going to look at your pic NOW!
Bye till later.


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## Farmwife

Tell O that Grace wears crullers like that.:tongue:
But never semi topless in a convertible.:tongue:

How did you think and do that. Were the balloons glue down?:yrolleyes:
What did you bribe you girls with to do that?:rof:


----------



## Farmwife

:ymad:How can this happen when she seems better???:ymad:

Someone tell me.

How can Grace be having semi-normal stool. YA!!!
 We were able to cut back almost all her Miralax. YA!!! 
I watch her carefully for any pain during BM's. 
I have the glycerin suppositories next to me IF I need to use them.

So tell me anyone why in sam hill does she have blood in her stool????:confused2:

Waiting for call back from GP and 
:ymad:STILL NO WORD ON THE RHEUMY APPOINTMENT!!:ymad:


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## my little penguin

Hugs...
DS had blood 8 months after his prolapse started even though it was better.
That was when we scheduled the scope and found out.
Hope you get answers soon


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## Tesscorm

Is it red or darker?  I'm sure you've been told this already but...  if it's dark, it's from higher up...  if it's bright red, from lower down.

Stephen's never had this so what I know is 'second hand' info...  if it's brighter, could be fissures or hemorroids (internal or external).  I have a friend who has such horribly bad internal and external hemorroids, she bleeds a large amount and says it is extremely painful but, as far as I remember, it never affected her stools (ie, not diarrhea).  She's going to have them surgically removed.  Has this ever been considered/checked with Grace?  I don't think it's the source of all her issues (ie joint pain) but it could be a related (but independent) issue that's sending confusing signals???

(maybe a dumb suggestion given all the tests Grace has gone through??? :redface


----------



## Suzysu

Oh no - could it be that her gut is just not used to harder motions and they are causing some bleeding as they pass through? I really think you need the scopes now - I hope the GI see's sense and orders them asap. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Farmwife

:hug: THANKS
The blood was in between. Yes I know crazy!:yrolleyes: Not dark but not light! I stared at it so much and debated that question only to make up my mind and say in between!

Talked to the head nurse and told her. She said keep her on some of the Miralax which I HAVE. 
The doc put the call into that specialist but no call back yet.
They did receive a letter from the rheumy dept. that said put her on some med that starts with N. Sorry I forgot. BUT my GP said no because it WILL make the GI track worse!!
 The doc will call the specialist again. 
He wants to get her input if possible before starting this med.
 He said since heat and Tylenol work for the most part, lets keep using that.
But he know that's not going to work for ever.


----------



## Suzysu

:ghug:
Sending you and Grace loads of hugs from the UK. They need to get her sorted asap poor thing. Why can't the Dr's just communicate better - life would be so much easier!!
:ghug:


----------



## Farmwife

Yes, think how great all would be IF they would talk.

I've made up my mind to demand MONEY from the docs if she does have IBD.:ymad:

Well why NOT, we pay them to figure it out.

I bet if we all demand money from the doctors if we figure it out first,:ghug:
 that we would have a cure for just about EVERYTHING!:ybatty:


----------



## Sascot

How frustrating, sounds just like our doctors - give calpol and warm baths :yfrown:.  Doesn't get to the bottom of the problem does it!
As for the blood - with all the trouble Grace has had going to the toilet, she might have a fissure inside that just hasn't healed yet even though she is going to the toilet easier.  Hope the Rheumy calls soon - I wonder if they ever think about the poor parents anxiously waiting at home for them to call


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## Tesscorm

Was the medication an 'nsaid'?  You've probably read it on here somewhere but do not give her nsaids (non-steroidal anti-inflammatory drugs) like advil and ibuprofen (there may be others), tylenol is okay (not sure where aspirin sits???).  Nsaids can cause GI problems!  :ghug:


----------



## QueenGothel

Aw poor Grace.:confused2:  I just knew it was a matter of time before the bleeding would start.  Really praying it is the prolapse causing it and not other inflammation.  Did they move up the appointments?  Scope needed ASAP. 

Hugs coming your way.  Hang in there.:hug:


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## polly13

Farmwife, I havn't been on in a while and when I came on today, I hoped things would be better with little farmgirl.  Hope you get the scopes soon hun.  Your GP sounds like he is a real advocate for little grace, really hope you get some answers soon,


----------



## Farmwife

Update:

No blood this time YA!!!!:thumleft:

But lots of pain and mucus.:yfaint:

Black specks in stool again.


:shifty-t:
Does your child's pain stay after a BM or does it go away for the most part?:   :sign0085:


----------



## Beatit

Farmwife said:


> Update:
> 
> No blood this time YA!!!!:thumleft:
> 
> But lots of pain and mucus.:yfaint:
> 
> Black specks in stool again.
> 
> 
> :shifty-t:
> Does your child's pain stay after a BM or does it go away for the most part?:   :sign0085:


Had blood when I was 19 alot then came the mucus to heal the lining of the intestines. I hope you start to heal fast and feel better. Best of luck!


----------



## Johnnysmom

Farmwife,

I don't know if you are still seeing Johnny's old G.I. at Helen DeVos or not but I wanted to tell you our experience.

Johnny had no blood either when we first saw him.  He wanted Johnny scoped immediately.  In fact they wanted to schedule it for the next Monday and he basically insisted we not wait.  He told us after our first appointment before his scope, that he thought Johnny had IBD or celiac disease.  He took his CRP and SED rate the same day as the colonoscopy so he had no elevated blood levels to go from either.  

I only tell you this because there was something in our case that made him urgently want Johnny scoped.  In the 7 months he treated Johnny he called me at home probably 6 times to personally talk to me about treatment or symptoms.  

There can be misunderstandings with the slight language barrior and I would occasionally misunderstand what he was trying to explain.  I would have to ask a question sometimes more than once before he would understand what I was getting at and give me the information I wanted but I do think he is a very good doctor.  

I say this only because I think he must believe there is something else going on with Grace.  I found the nurse that works with him (Paul) to have endless patience and an excellent ability to explain why or why not things were or weren't being done in a way I could understand.  I would call and ask to have the G.I. call you if there was something you felt wasn't covered in your appointment.  

I hope you find out what is going on soon.  I know they don't routinely do a Fecal cal test at Helen DeVos but could you request one? Would he agree to a scope if the results showed inflammation?  If you have to pay out of pocket for one they are about $500.  

 I don't want to make this harder for you, just wanted to share our experience hoping it helps.  

(((((Hugs))))))) Tiffany


----------



## Farmwife

Thanks Johnnysmom.


Sorry if you feel we were putting your old GI down. :rosette2:
He did a wonderful job with your son. 
Thank God that GI was able to help you and you still have that boy to hug!

As far as the language barrier. My hubby would look at me ever so ofter and that would be my cue to interpret! Also funny is the fact that we're older and my hubby walked out of the room whispering I could have been a GI by now!


We need biopsies to be done during the scopes to see if she has the new IBD. The GI said she doesn't have "classic signs" of IBD so she doesn't have it. I HOPE, PRAY AND WISH he's right.

But your right when I call tomorrow I need to let the nurse know what we want and state it as plain as day. It's only fair to the GI. That way IF we get a second opinion at least he knew where we stood.:thumleft:


----------



## DustyKat

Oh man Farmwife...:hug:...it breaks my heart to read that little Grace is still waiting and suffering, bless her little cotton socks. :heart: 

I hope more than anything that you soon have answers. 

:hang:  hun just as we are hanging in there with you. :ghug: 

Dusty. xxx


----------



## Suzysu

:ghug:


----------



## Johnnysmom

Farmwife,  . 

Please don't think that I thought you were beating up on our G.I.  I think any parent would and should question all treatment or lack of treatment decisions. You are both doing an amazing job at taking care of Grace. 

The G.I. can take the criticism and questioning.  I know he was annoyed with me a few times but he handled it well.  That is part of the job, I think they expect it.  

I cannot fathom why he would think he could definitively say Grace doesn't have IBD without a scope.  So I would ask him because he has made decisions I thought for sure were not right and once I questioned him he did give me an explanation that made sense.   

But I do have a soft spot for him.  I felt like he saved my boy.    

I just hope you find some answers quickly.   

(((((hugs)))))

((((((Hugs))))))))))


----------



## Farmwife

Update:

Grace passed stool after 3 days. :dance:
Blood the first part. I'm hoping that means it could be caused by the prolapse, RIGHT?
Joint pain worsening. She woke up with it and had to sit on a heating pad during breakfast.

I'm still pray that EN will solve all this!:ghug:

Tomorrow meeting with doc. 

Off to bed.
Good night y'all!:hug:


----------



## Tesscorm

Good luck tomorrow at the apptmt!!


----------



## my little penguin

hope the doc can come up with a good EN plan for Grace


----------



## jmckinley

Bless Grace's heart! I am so sorry that she you still don't have an answer for her issues. I hope that tomorrow brings some answers. We are all there with you! 

HUGS!!!!


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## Sascot

Sorry the joint pain is worse!  Not long to go until you see the doctor and hopefully get the EN going!   :hug:


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## DustyKat

Sending loads of love and luck for Grace and the appointment! :goodluck: 

Dusty. xxx


----------



## polly13

poor little grace, hope the appointment goes well today with the doc. 
PollyXX


----------



## Suzysu

good luck - hope all goes ok xxxx


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## Farmwife

Time to bring this thread back up.:kiss:

The insurance won't let us to to second opinions at once. However if the possible ( their's a reason I say possible) new GI at Mott's wants her to go then insurance will cover it. Onto the possible reason.... Mott's is out-of-network for our insurance. GREAT!:voodoo:
So the social worker is check our insurance to see what can be covered. If it's not covered we can't go.

2 questions for y'all

1- Since the black stool which she is still having, her poo is now ROCK hard! Is that because of the blood or something else?

2- Grace has said multiple times the last two days her leg feels tired but yet says she need to walk on it. 
Any ideas?

:dance:Still had a great day. 4 days a going!:dance:


----------



## kimmidwife

No real advice but just wanted to say I was thinking of you guys!


----------



## Catherine

No 2.  Is she having pin & needles?  They can hurt a lot but get better when walking on.


----------



## my little penguin

Hugs
I know for DS he said it felt better stretching them or moving them
Not the term he used but I translated.
Rheumo was not surprised by the way DS described. Things.


----------



## upsetmom

We have a similar situation with the leg except its my daughters ankle...
She says she feels like she needs to crack it but if she walks it feels better......No idea...:confused2:


----------



## Tesscorm

The leg issue could be Restless Leg Syndrome. Can be caused by low iron. I've had this, especially just bfr I upped my supplements. Does it happen just when she's trying to go to bed or when she's been sitting for a while?  Its a very annoying sensation, doesn't hurt but bothersome. There's an urge to move your leg and the urge just grows if you don't move it. The closest way to describe it is an itch that you try NOT to scratch - it just builds until you HAVE to scratch (but no pain involved). I don't know anything that really helped other than increasing my iron pills. I did try elevating my leg (can be one or both legs) with a pillow... I think it helped very 'slightly'. 

(Sorry, hvnt been on much  will update Stephens thread tmrw...  Havg problems with my dad )


----------



## Susan2

I used to have Restless Leg Syndrome and was advised to take magnesium, which got rid of it completely. I take one 300mg capsule a day. It contains a mixture of 4 different forms of magnesium.


----------



## Farmwife

Susan2 said:


> I used to have Restless Leg Syndrome and was advised to take magnesium, which got rid of it completely. I take one 300mg capsule a day. It contains a mixture of 4 different forms of magnesium.




I never know someone so young could have it. RLS runs in my family. I think I'm starting to get it. Grace is so young she can't relay tell me descriptive words about what her leg feels. She woke up with the feeling but now thats she's playing she's fine.

Grace can't take iron supplement. Makes her and me sick. I make sure she get food with lots of iron. He levels come back normal.YA! Low end of normal but still normal.

Susan2 I take mag, calcium and zinc v-mins for my muscle cramps and nerve twitches. Works great for me. I'll see what I can get for her in town.:hug:


Update:
Got second sample for test. One more to go! YA!!!
Other than the leg thing she's GREAT.
The GI nurse said since it seems like it was an upper GI bleed she might have a few more BM's with blood streaked in them. I'm to call on Monday and update them.


----------



## Tesscorm

Thanks Susan2 - I will try the magnesium.  I just find the RLS so annoying and, when it's at its worst, won't even allow me to fall asleep!! :ymad:

Farmwife - glad things are going well for Grace!!!  Yippeeee!!!


----------



## muppet

Farmwife, out of curiosity, which came first, the laxatives and fiber, or the hyosciamine?

I used to try fiber to get things moving (even though insoluble fiber and whole grain seem to exacerbate my inflammation) but eventually found that just hyosciamine by itself works better for me. My unprofessional, off-the-cuff self explanation for this is that it "unties" the knots and lets stuff flow.

So sorry to hear about your little one! We're still watching our 3 year old closely, so far so good. She would have a 30% chance of Crohn's based upon her sister's diagnosis but since they're only half sisters, we're optimistic.


----------



## Farmwife

Sorry Muppet I need to update my sig.

She tried the histamine when we first got it and gave her such a horrible pains I swore I would never use it. The zantak seem to make her belly pains better but made her lower pains worse so my GP took her of of zantak. Which till lately did worked great no more belly pains for 6 months or so. YA!!! But of course came back and now she's on it again. We'll see what happens. I'm thinking of asking for a back up plan about a different kind of ulcer med instead of stopping it completely. 

Now if to saw right you and your girl have crohn's, can you give me a quick back ground. That way I feel I know you better so when we have spirited debates.


----------



## muppet

The best background I could possibly give is in my sig up above.


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## Farmwife

Muppet
Thanks a bunch!:hug:

I'll look when I have time. Grace's limping again and being very emotional. :voodoo:Well at least we had 4 good days.:voodoo:


----------



## muppet

If anybody has license to be emotional, it's that little girl. 

Have you taken her to any regional research-affiliated hospitals? I found great results with Boston Children's after getting pretty exasperated with the doctors in Hartford. The difference in their knowledge and their ability to apply it practically is night and day.


----------



## Sascot

Sorry to hear she is limping again!  Sounds like the insurance is causing alot of hassle - hope you get it sorted soon.


----------



## Farmwife

Muppet she will be going to UofM (C. S. Mott's children's hospital) which is highly rated. We might be going to Cincinnati also but that will be up to our second opinion GI.
If she has this ME or MIBD I will need a GI that knows how to look for it. But know that she's bleeding it might be to late.

Sascot don't even get me going about insurance.:voodoo:
How's your girl? :kiss:
Oh, I figured what I sending you for Christmas but remember you can't through it away. Ha/Ha you have to keep it out of guilt!:rof:


----------



## Sascot

Mmmmm, interesting :eek2:!  Gotta love insurance - I took out private insurance for Amy but because she has had similar problems since she was 5 (even though never as bad) - they won't cover this at all as it's a "pre-existing condition".  I was not happy .  Well we live and learn - if anything new happens they will cover it :lol:.  Amy is doing quite well thanks - the TENS machine seems to be doing the trick at the moment :dance:


----------



## Farmwife

*A Miracle has happened my hubby told me to ask you guys something!*

Grace went poo and blood clots were in it!
How many have had this? What causes it?
Should I call the GI on call for the week-end or wait till Monday?
Why does this happen on the week-end???:ybatty:
BTW I'm not going to the ER to spend a 150 dollars to take blood and send us home!:ymad: Disappointed again!:confused2:


So basically I'm asking this about the ER to make him happy!:tongue:


----------



## muppet

Are they dark? Any blood on the toilet paper or in the water? For any new blood I'd page the on call doctor.


----------



## crohnsinct

O has had that but while being closely monitored by a doc and on meds. 

I would call the on call.  Even if it ends up being nothing make them take your call and have it logged.  Enough calls and maybe they will finally do something for that poor child.  

Did you happen to catch it and any poo with it?


----------



## Farmwife

Muppet
Was dark clot in dark stool but not as dark as it has been. 

I don't know if you read the other thread but Grace had a major FIRST bleed this time last week. Went to ER thinking finally something will happen and sent home upset because the GI on call said her labs are normal and she's happy so we can wait to get you in. Her regular GI will be back on Monday! I will be talking to him. I'm also seeking a second opinion.


----------



## muppet

Dark clots and dark stool can be a bad sign. I'd call the on call. Second opinion ASAP you need a doc you're confident in as soon as you can find one.


----------



## Farmwife

crohnsinct
No of course NOT. 
I had the stupid hat in there and I thought she was done:ybatty: took it out to get the sample to finish the test and of course...you guessed it.:ymad: She passed it!!! Then when I was looking at it she flushed it. Poor girl she now thinks if mom starts at her poo to long she gets prick with a needle.:rof::rof:


----------



## Farmwife

Grace is sleeping.:eek2: She went to bed with eye pains and if I wake her up she will be mad and mean and might hurt me! Farm kids and wives don't do well with being woke up!:rof:
Beside she was DRIPPING blood last week and I still got no where. :ymad:

BUT I will call in the morning.:kiss: Thanks a great idea about getting them to log everything!:hug:


----------



## muppet

Dark stool and dark clots can mean small bowel bleeding and possibly risk of obstruction. Please call even if you plan to refuse the ER. I wouldn't be inclined to go either but I'd defer to a good argument from the doc.


----------



## muppet

Has she had any stool tests? Checked for c.diff?


----------



## izzi'smom

I can't help with the clots, but Izz had frank blood in her stools forEVER. They just kept an eye on her bloodwork to be sure she wasn't anemic. We did very little else. She wasn't losing weight, either, though, although she was chronically fatigued. 
Feel better, Grace!!


----------



## Farmwife

muppet said:


> Has she had any stool tests? Checked for c.diff?



Yes muppet she had 2 bouts of c diff. Thank GOD that our GP was on the ball and tested her JUST IN CASE she had it. He was convinced IF it had taken hold she would have been in ICU.:ywow:

Out of curiosity why do you ask?

Stool test? YES a few (the one with c diff also had occult blood and white blood cell, but they said that's because of the c diff) but just like anything the other 2 she did them all when she was doing GREAT. So I always will wonder.:shifty:
We just finished the newest stool sample and will be turning them in today.


I still have to call the on-call GI but.........muppet you might have just given me a new angle. Thanks:medal1:


----------



## muppet

C. Diff can be pretty pernicious, she may still be infected. The treatments screw up intestinal flora pretty badly, too. She should be tested again.

I only asked about c diff because in most places it's standard to test for it when there's any intestinal bleeding (sometimes just if there's diarrhea at all.)


----------



## Farmwife

I'M GOING TO GO NUTS!!!!!! DO YOU HEAR WORLD.....NUTS!!!!

Called the GI that's on-call this week-end and of course go to ER if bleeding becomes worse.
Then the nuts part.......She (the head of the GI dept.) told me when Grace's GI is back it looks like he want to scope her. WHAT?????? :ywow:
I said, well I asked for scopes but it sounded like he wanted to head in a different direction then us. She said what I see in his notes that scopes might be done.

So now what do I do? :shifty:
Tell the social worker to hold on transferring her case or do it anyway?????

:heart:I'll talk to them on Monday and they will MAKE them say yes or no to scopes!:heart:

Thanks y'all you just give the best advice!

:heart:Grace is having a wonderful morning. Looks like it will be a great week-end for us. I HOPE.:shifty:


----------



## muppet

She hasn't already been scoped!?!?


----------



## Farmwife

NO!!!!!
Well why would that be done???:shifty:
She's happy, labs are OK (not perfect but OK), and of course she wasn't bleeding! You have to have blood in stool in order to have IBD.:blush:
 Didn't you know?:ywow:

We have had this problem since she was six months old. Stomach pains, abdominal pains, joint pains, canker sores, skin problems, poo problems, bladder problems, liver enzyme problems, maintaining weight, high LDH leaves, low WBC and I'm sure someone else can add to what I forgot she's had. Nope, no scope!!! Each time she see the GI she's happy. So of course she's not that sick. 
I know I'm on a IBD forum but if you have other idea's on what this could be.....SHARE!!!!
I'm going to go drink some coffee. 
Something about you muppet fires people up.


----------



## QueenGothel

Per redundancy protocol. SORRY! Ask for Childrens Special Health Care.  If the transfer is considered a elevated level of care if would/should be cover by Children's Special Health Care. If they update her dx to IBD she should be eligible now. They will go back and pay 3 months also. 

I would say the soonest scope is best.  But if you don't have confidence in her Devos GI I would get the scope at U of M.  I found it so important that I had confidence in the GI.

Rowan had blood clots and it was usually an indicator that things were going south fast.  Rowan was a bleeder though and once the blood starts we usually saw more blood that poo always. Sometimes i would never even see any poo. Once we started seeing blood clots we were admitted twice without going through the ER and got a direct admit.  Which of course is not possible on the weekend. 

If the clots get worse, I would go directly to U of M and not pass go.  But that is me. This would be cause to be admitted and then you know you can get all of your scopes done.  

If anyone needs an elevated level of care it is defiantly little Grace.  Just breaks my :heart:

If it is restless leg syndrome. Idk much about it though I have all night in my left knee. Luckily magnesium if deemed helpful, will also keep her stool loose.  How much calcium is she taking in?  It could cause constipation.  Cal/Mag supplementation should be 2:1 but with Grace I would do more mag.


----------



## QueenGothel

Blood clots is also a sign of healing.  But if your seeing large clots it is the poo tearing off the clot and if they are large this is you indicator that the bleed is the size of the clot.  At least this is how it was explained to me per GI.


----------



## Farmwife

Thanks again,

They (3-5) were about quarter size. Flushed by Grace before I could have a better look.


----------



## muppet

That qualifies as "large" for a 3 year old.


----------



## Suzysu

I don't know the answer to your questions but just wanted you to know I am thinking of you both xxxx


----------



## my little penguin

Hugs 
Hope you get answers soon
Having blood clots / bleeding when when have an Ibd dx and are on meds is very different from bleeding of unknown origin.
Good luck on monday


----------



## Jmrogers4

I would go for the soonest scope IMO, maybe you would finally get some answers but I don't really have an answer for you.  Thinking about you and Grace.  I'm off to get my own nuts - Pecan's for Pecan pie.


----------



## Suzysu

Oh My goodness - I go away for a few days and try to keep up with things on my phone - but look how much I miss!!

  I am utterly and totally amazed by the lack of care that your doctors show - If she were a dog I would have had her admitted and either scopes or full thickness biopsies taken weeks - no wait MONTHS ago!! 

  She really really needs the scopes - call the GI on Monday and don't stop pestering whoever you speak to until they agree to scopes and fast!

  I hope the rest of the weekend is ok for you - sending big hugs xxxx


----------



## muppet

I'd have gotten a new GI a while ago, if it were me. You really need to not be afraid to fire the doctor if he's not responsive. There are so many bad ones who are not worth your or your daughter's time.


----------



## Farmwife

Thanks muppet and everyone.:hug:

Grace had a normal BM tonight. :dance:It wasn't that much but hey...it was normal.:dance:

As far as the GI goes on Monday will have a heart to heart and let him know what we want and listen to what he wants.
 If they don't match up that's OK the transferors is underway any how.
 I DO NOT THINK HE IS A BAD GI! Jonnysmom- Tiffany's son went to him and saved his life.
 Like I said Grace doesn't "fit the mold" and he was willing to seek a second opinion from Cincinnati. 
But 6 months or even 3 is two long. 
UofM will be it IF the GI now sees different. 

I WILL not be playing  these games any more. 
They said she can't have it because of no blood and now she has blood. 
They will deal with me and I will not go down quietly!
muppet you might not get this but everyone on the forum is cheering and saying it's about time you get mean. 
Farm wives have always been hard headed.:ybatty:


----------



## jmckinley

WOO HOO!!! You go Farmwife! I hear you! Hard to get stirred up, but Man, get out of the way once you're on FIRE! "I pity the fool" (My shot at Mr. T) :headbang: who won't give you what you're after now!

:tank::tank::tank::tank::tank:


BRING IT ON!!


----------



## Sascot

You go girl!!  Will be thinking of you and sending warrior mom thoughts across! Yay for the normal bm :thumleft:


----------



## AZMOM

I agree with the scope demands. Also has she had a fecal calprotectin?

Hope things get moving!!!!!

J


----------



## Farmwife

AZMOM:hug:
Yes she had the stool test. Her numbers were in the 60's. Not that hi but...I read and I'm sure I could find it if you wish the the higher up the track the less reliable those numbers are.


Update:
Called twice to the GI (crohnsinct told me too).:voodoo:
Nurse called back to night and said the GI is on-call tonight and she sent the message and put it as a priority to call back. However she said he just came off a two week vacation so I might have to call again in the morning.
OK on the scopes. She said the GI has to let her or me know if he wants her down for an appointment or straight down for a scope.
Here's the thing. We were JUST went down for an appointment. I'm going to put up a fuss and so no that we just want her scoped. I know we'll see the GI before the scope. Why make us take time and money out of our day???

Grace is telling me now every day she's tired. But she is still happy most of the day. Her tummy has settled down.:dance: Looks pale, but hey were from Michigan.:rof: Only a little bit of poo and that was normal.


----------



## Sascot

Yay for scopes!! :dance:.  Finally!!!  Hope it gets scheduled quickly :hug:
I hear you with being pale - always think it must be hard for doctors in Scotland to tell if someone is pale because they're sick or if it's natural skin colour :ylol2:


----------



## DustyKat

Halle-bloody-lujah!!!  

I hope you get solid answers soon and scopes ASAP! :goodluck: 

Dusty. xxx


----------



## upsetmom

Finally a scope!!!......:yoshijumpjoy:


----------



## Tesscorm

I'm hoping and praying that the scopes will finally get you/Grace on the road to treatment!!!  She's had to wait way tooooooo long already!

:Karl:


----------



## my little penguin

Good luck on getting a quick scope and solid answers


----------



## Farmwife

:thumleft:Scopes for Dec. 27th.:thumbdown:

Already asked to be put on the cancellation list. 
She though the list now is further out than January.
 So Grace did get moved up because of the bleeding!

Asked for a new med to help her tummy which now is worse today.:yfrown:

Our GP's nurse is trying to find out what happen and who dropped the ball for the rheumy appointment. She was Not happy! The drug (forget the name) the rheumy sent (with out seeing her)would only cause more damage to her GI. 
Fine I get that but last night Grace crawled in bed and cried her heart out for 3 plus hours because of the pain.:thumbdown: Nothing I did helped. She needs something to help the joint pain. This poor kid. 
Well at least she's still happy!:yfaint:


----------



## crohnsinct

PRAISE GOD!!!  All I wanted for Christmas was scoped for Gracie...a little late but I will take it!


----------



## my little penguin

Woohoo for a scope date.
As far as joint pain- which joints?


----------



## muppet

That kid needs a new GI practice. Yours sounds terrifyingly incompetent with no sense of urgency.  But not before the scope of course.


----------



## upsetmom

I hope you finally get some answers...:hug:

good luck


----------



## upsetmom

Are they doing both scopes?


----------



## Farmwife

MLP is her left leg ( mostly knee) most of the time but......when her ankles hurts it's both of them. Also she gets weakness on the left leg. These pains and or weaknesses, now have to have meds to make it stop as where before we could try to wait it out. 
No obvious swelling. Not tender to the touch. Never have been.

Took her to our GP today. He wanted to make sure the spine isn't involved. As far as her spine could FEEL nothing abnormal. But he wants x-rays done soon. So waiting for the rheumy dept. to get back with me.


----------



## Farmwife

upsetmom said:


> Are they doing both scopes?




YES!!!!!!!!:thumleft:


----------



## QueenGothel

Susan2, farmwife, 
Just wanted to say thank you on the magnesium tip.  I started taking cal-mag-zinc and my leg cramps are gone two days later. 

:rosette2:


----------



## kimmidwife

So happy to hear they finally agreed to scopes! Yay!!!


----------



## Tesscorm

I'm so glad about the scopes!!!!  YAY :thumleft: YAY :thumright: YAY

But I hope you can find something to help alleviate some of the joint pain until you get some answers!  :ghug:


----------



## QueenGothel

Yay for scopes... BUT

Dec 27th seems very far away.  Could they show some priority?


----------



## Jmrogers4

Yah! for scopes, hope you get a cancellation and can get in earlier, but at least you finally have a date.


----------



## Sascot

Hoorah for finally getting an actual date for the scopes!! :thumleft:  Will hold all fingers and thumbs for you to get a cancellation sooner.
That nurse sounds great - hope she manages to chase up the rheumi asap.
Sorry to hear Grace was crying for so long last night, wish I had some magic idea to help with the pain!


----------



## jmckinley

Scopes, Yay!!!!! It's about freakin' time! So glad you've found a nurse who will listen!! Sorry Grace is having a bad time 

Has she ever taken zofran? It was a wonder for Ryan this summer.


----------



## DustyKat

Oh no, poor little Grace...:hug:...and it must surely be breaking your heart hun...:hug: 

Thank goodness for the scopes! I only wish they were sooner for her but at least the are going to be done!  

Thinking of you both, :heart: 
Dusty. xxx


----------



## Farmwife

:soledance:HAPPY THANKSGIVING ONE AND ALL!:soledance:
Today will be in the 60's. Normally we'd have snow and in the 20's.
I love global warming!:ybiggrin:

What is zofran?


Update:
Grace is more tired. Still happy!:thumright:
No poo still. Last one two days ago looked ribbon like. Possible impaction?:frown:
Blows my mind seeing that the miralax is back up to full doses.
Oh well, today will be a great day of family and fun and FOOD!!!!!!!:ysmile:


----------



## my little penguin

Zofran is for vomiting.
DS has a script to always have it on hand so we can avoid the ER due to dehydration.
As part of DS 's crohn's he has repeated vomiting.
His disease is present in his stomach and duodenum so if he is flaring he will vomit multiple times a day - once or twice a week without it.
Thankfully he is old enough to know when he needs zofran before the first vomit usually.

It did not stop the nausea for him though .
Sending poo vibes your way.
High fat items tends to help move things along - most crohn use don't need that
Also lots of water- have her carry a water bottle today since it will be busy so you can track her intake.
Happy thanksgiving .


----------



## Farmwife

I hope everyone in the USA had a great Thanksgiving.

Update:

No black Friday shopping for me.:blush:
Nothing to do with Grace, it has everything to do with the bone chilling wind outside.
Ciber Monday is the was to go for me!
Grace had a great day. She was tired and sat for most of it but still happy.
She had some canker sores pop up so she just had a shake and lots of cookies and pie.
Poor kid, how she suffers.
She did have a BM. YA!:soledance:


----------



## my little penguin

Glad she enjoyed her day.


----------



## kimmidwife

Glad she enjoyed her day. I am wondering if those are not canker sores but crohns related mouth ulcers? I know several people on here have mentioned that their kids get them. thank G-d that is not something we have dealt with but the doctor also had mentioned them as something to watch out for.


----------



## Farmwife

Thanks Kim but she doesn't get many of them but when she does, their painful and last forever. 
Her dad gets them horrible and
 I mean horrible ones. My son gets them also
Thank God I don't get them.


----------



## kimmidwife

Do you have magic mouthwash for her?it is the best.it is prescription so your doctor has to call it in.


----------



## Farmwife

kimmidwife
Would I just say magic mouthwash or is it called something else?


----------



## my little penguin

yep your ped would know and call in the script


----------



## Farmwife

I decided last night not to give her Miralax at night because the loose stools is worse.
She had semi-soft stool this morning:dance: with dark blood.:voodoo:
I won't do that again.
She had another major knee pains last night. That pimple like bumps are popping up again.
Down 4 lbs. She says she's tired and other then those things she still the picture of happiness.


YES, I' will be calling the GI tomorrow.:redface:


----------



## Jmrogers4

That is a lot of weight to loose for a little one.  Glad you are calling the GI in the morning, hopefully they will move the scopes up and you can get some answers.  Hope she feels well today


----------



## kimmidwife

how is she doing today? glad you are calling tomorrow


----------



## muppet

Have you been journaling her weight loss? How about her nutrition intake? The weight loss, fatigue, and bleeding would have me thinking of hospitalization and IV feeding.


----------



## AZMOM

Sometimes something as simple as a heating pad does wonders for joint and abdominal pain. Helps Claire with both......might be worth a shot. 

J.


----------



## kimmidwife

heating pass really work well. Caitlyn has a special one from sharper image that works really well.


----------



## Crohn's Mom

Im gonna tag Cat-a-tonic here... I think ? she (or sunshine?) bought some cute stuffed animal heating pads a long while back and said they worked really well ~ and of course they are cute and the kids would love them.
Maybe they can post the link here


----------



## Farmwife

AZMOM we've used a heating pad for awhile. It does work...most of the time or did.

muppet,yes I'm an avid note taker on everything. Grace is still running around and laughing.
My hubby and I are watching her like a hawk. I think the weight problem is happening because I think in her mind she thinks eating causes tummy pain. She wants the shakes most of the time. Bouncing between both is not working for her. The Zantak is working, so I think it MIGHT be mental. Of course she nows her body better.
I will be talking to the GI about all these things.


----------



## muppet

Definitely heating pads. For me they're best on lower to mid back or even to sit on. Just mind sshe doesn't get flushed shes a little kiddo.


----------



## Farmwife

Oh I,:shifty: or should I say Grace would love that!

Heating pads shaped like animals. What will they think of next.:dance:


----------



## Suzysu

4lb - that is a HELL of a lot for a 3year old - call that GI and don't let him go till they agree to do something - thinking of you guys xxxx


----------



## dannysmom

There are a few of those stuffed animal heating pads .... cute!
http://www.hotpakhuggies.com/home.html


----------



## kimmidwife

Those are really cute. I may have to get one for caitlyn!


----------



## Farmwife

Update:
Getting a bit scared. Grace woke up from a 12 hrs. of sleep and looked at me most of the morning and said she was tired. Just sat around an played by herself. Then put her down for long nap and she didn't want to wake up. Meaning I put on her winter coat, pair of tights and shoes and carried her out to the car. She still laid there and we went to the food store where she sat quietly in the CART. Didn't even want to walk. She perked up a bit when we watch Cinderella 2 but she was in bed by 8. Her tummy pain creped in after she ate. No poo. She still is not on deaths door step. Still no majors pain or anything today.

Here's the thing she had her labs tested 2 weeks ago. Her iron is at normal levels. She did have blood in her poo on Sunday morning but I've seen a whole lot more come out. 
Yes I did call the GI in the morning but NO call back. I will call again tomorrow in the morning, mid-morning, afternoon, mid-afternoon and the evening until I get someone.
I will also call my GP and fill him in. 
I don't know if labs will be worth it because she just had them?
I hate to have her poked for nothing.
Don't get me wrong I will if I have too.:hug:


----------



## muppet

The lethargy could be a medical emergency. You should get the on call GI on the phone and if that fails, if it were me I'd be on the way to the ER. So much weight loss, bleeding, and extreme lethargy would scare me silly.


----------



## Crohn's Mom

Poor baby Grace  
Just breaks my heart for you :hug:

Please be relentless in your contacting the GI office


----------



## Farmwife

She's still can do things. She can still smile and laugh and walk  but you can tell her spunk has gone but YES this is not right. I guess when your told over and over again this is normal until....(fill in the blanks) you start to believe it.
I will call in the AM, maybe BEFORE the clinic opens so I can get the on-call GI to phone.


----------



## Farmwife

muppet I sent you a freinds request. :eek2:I think you would be the first guy on my list. Don't worry us girls will be nice. Well........ DustyKat:voodoo: is on my list but she likes you already, so your safe.:rof:


----------



## my little penguin

please stay safe tonight-I agree with muppet on this.
you could call the on call gi tonight at least - it wouldnt hurt .


----------



## muppet

I really, really think you should get the on-call on the phone now, but it's your call as you're there and I'm not.

The thing you have to understand about chronically ill little kids is that they mask symptoms, sort of like pets (but they're obviously not pets.) Kids tend to normalize whatever it is that's happening to them because they lack a strong basis for comparison because of the limits of their experience. They'll keep on playing while their insides cramp into knots, as they get dizzy from blood loss, until they literally collapse. They may complain about symptoms but will take their cues from you. If you don't flip out, they won't flip out.

When I was a kid I was severely epileptic on top of my Crohn's and Asthma (thanks to meds). I continued to play on several occasions as I went totally blind in both eyes from epileptic auras obscuring my vision, while compensating for the severe vertigo I was feeling so well that nobody could even tell I was dizzy. I mentioned to my mom that I was "seeing spots" before I collapsed in a playground and woke up in an ambulance.

Not trying to panic you or scare you but if I were in your place I think I'd be a lot more worried and I've got 40 years of Crohn's under my belt between myself and my oldest daughter.

Not judging, but definitely worried.


----------



## Farmwife

muppet said:


> When I was a kid I was severely epileptic on top of my Crohn's and Asthma (thanks to meds). I continued to play on several occasions as I went totally blind in both eyes from epileptic auras obscuring my vision, while compensating for the severe vertigo I was feeling so well that nobody could even tell I was dizzy. I mentioned to my mom that I was "seeing spots" before I collapsed in a playground and woke up in an ambulance.
> 
> 
> 
> QUOTE]
> 
> Oh my:eek2:, How is that not suppose to freak me out??? No wonder Dusty likes you!:rof:
> 
> Called the GI office and am waiting for the call back.
> I guess I figured it serves them right for not calling during the day.:voodoo:


----------



## muppet

Thank you so much for not waiting to call. I already feel a little better. 

If he doesn't call back, call the service again. Don't let up on that guy. I can't believe he didn't get back to you already.

I just wanted it to hit home how severely little kids can mask symptoms. They're really, really good at it. Sorry, not trying to induce panic, just give perspective.


----------



## my little penguin

> When to Call Your Healthcare Provider
> Your healthcare provider needs to know if your child has any of the symptoms in this list.
> 
> temperature above 101 degrees F
> stomach pain or cramps that are worse than usual and do not go away
> more than the usual number bowel movements in a day
> a change in the consistency of your child's bowel movements
> blood in the bowel movement or a change in the amount of blood
> new rectal pain
> throwing up for more than 3-4 hours
> vomit that has bile in it (yellow/green color)
> bloated stomach
> *tiredness that doesn't go away*
> rashes, especially on the lower legs
> swelling or pain in the joints
> swollen or red eyes
> mouth sores and ulcers


Glad you called.:dance:


----------



## Jmrogers4

Glad called as well, I think everyone else has said it well the extreme tiredness scares us


----------



## Farmwife

He called.
He said there's not much he can do for tiredness. Make sure she rest.
He still feels we can weight a month for the scopes because cause her labs are fine, for the most part.

I know, don't type it!!!!! 

I'm going to bed and will be calling the GP in the morning.


----------



## my little penguin

:voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo:

:stinks:

:hug: to you


----------



## muppet

How long ago were labs? Did you tell him about sleeping 12 hours and being difficult to rouse from a nap or did you just say "tired"? He sounds way too cavalier for me. :-(

Good you called. Keep us updated.


----------



## crohnsinct

O.K. I will spare you my rant and just send loads of love and support your way. 

But also want to add what to what everyone else has already said...keep in mind our O only had diarhrea and blood for two weeks and swam in a three day meet over the weekend and bested her fly time (a hard event) and on Tuesday was in the ICU getting blood transfusion, on parenternal nutrition and fighting for her life.  Of course we know now that her inflammation was simmering away for years before and that this was a one time crisis because we had no idea she had IBD but it does show you how well kids adapt and how quickly things can turn.  

I sure hope this doc is right about waiting a month because if anything happens while you are waiting he will have the whole wrath of this forum coming to Michigan all toting our vices and rolling pins.


----------



## crohnsinct

Where are you on the other approval?  Was it Mott?  Remember we are not calling it a second opinion visit now...we are calling it an opinion visit period.  At this point I would put my energy into getting that pushed through A.S.A.P. and hopefully getting her seen sooner there.  Then you can cancel with the current GI.  You don't owe them anything.


----------



## kimmidwife

Okay, this GI doc seems way to cavalier for me. Did you make sure he understood that this was a change from her normal? Was this your regular GI or just someone on call covering for you doctor? For a child being this tired is not normal! I don't care what he says. Please continue to keep a close watch on her overnight and if anything changes do not hesitate to take her to the ER.:stinks:


----------



## Catherine

This is our led up to dx,  sarah was anemia, began to lose weight end of November had dropped from 7-8 swimming session a week to 4-6 December come around hemoglobin dropped to mid 90,  not swimming at all, sleeping 16 hours a day and pain all the time.

Sarah swum a 1.5 km ocean swim on the 15 December.

January come round a we couldnot stop the weight loss, lost 7 kg in under 4 weeks.

Sarah main symptoms were pain, sleeping all the time and anemia.

I would start weighting Grace daily.

Grace can't afford to loss weight like Sarah did.


----------



## Sascot

:voodoo::voodoo::voodoo::voodoo::voodoo:  There, a few more for you!  Sending lots of hugs your way!  No idea what else you can do - lots of cuddles and "patience"! :hug:


----------



## Farmwife

Update
Grace is good during the night. She's coloring at the table now. We'll see how the day goes.

So the scopes are a month away. Here's to waiting patiently.:voodoo:

I still will call the GP this morning and fill him in on my talk with the GI.:eek2:

To top this off we need to switch Grace and all of us to a new GP because ours is retiring the first of the year.:ybatty:


----------



## Sascot

If you like him, tell him he's not allowed to retire :ylol2:.
:ybatty: Am thinking this looks just like me just now.


----------



## muppet

I dunno what I'm gonna do when my GP retires. He's 70+ and he's the only GP in the state whose advice and expertise I have any faith in. Only doctor I know who will actually spend an hour diagnosing you instead of just writing out pills for symptoms.

Farmwife if I were you I'd try to expedite that appointment at the university hospital you were talking about. What's the hurdle there..?


----------



## Suzysu

Oh my goodness - call that GI every 5 mins until he calls you back - or just go to the hospital - sending calm thoughts your way xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Farmwife

Muppet the hold up is insurance, timing of the scope, and for some reason in the state of Michigan every GI has a waiting list.:ybatty:

Ok muppet on to you avatar.:eek2:

I love it. I saw a poster with Kermit holding his riffle over his shoulder as Ms. Piggy is nagging him to death and his thought was,......... Pork anyone.:rof:
My hubby favorite pic.


----------



## muppet

I know how the waiting list thing goes. Here in CT every developmental pediatrician for 200 miles has a year waiting list, while apparently in the midwest you can just go to one the next day. We had a heck of a time with Izzy.

My avatar suits my personality, especially when dealing with doctors and their intransigent staff. 

I'm so sorry to hear you've got annoying insurance. We're very lucky in that ours covers basically anywhere in the area we'd care to go. If we had to rely on the insurance my wife is offered we'd have to do everything at the hospital she works for. Such a pain.


----------



## QueenGothel

Aw poor Grace.  The worry alone has got to be tiring you also.  I still cannot believe it is taking this long.  If she were in the hospital she would be getting more attention.  Rowan bleed for a month before her scope.  Her hemo was 12 when in the ER for the first time and one month later she was an 8 for her scope.  Bleeding was only during bm's at the time and once a day. 

Where are you with the insurance deal?  Is someone working on it?  Did you talk to anyone about CSHC?  A social worker would be a good place to start.  Hugs to you.  I would say her GI is a jerk.


----------



## Crohn's Mom

Was just going through your thread again trying to "catch" up with all that poor Grace has gone through ~ 
Just curious tho, what ever happened with the Barium Enema study that the GI ordered when you first met him back in October ? What results were there ?

And also, what has become of the Candida problem? Has she had follow up stool tests to check on the status of this? Or antibody testing ? Has it completely gone ?

Sorry for all the questions ~ just brainstorming and trying to help you put the pieces together


----------



## Cat-a-Tonic

I haven't read through this whole thread, but I see that Crohn's Mom tagged me in this thread in regards to stuffed animal heating pads.  Yes, I have 3 of them and I love them.    The brand name is Cozy Hugs, and the animals look just like stuffed animals but are microwaveable.  You pop it in the microwave, it heats up and it stays nice and warm for up to an hour or so.  I like them because, unlike a traditional heating pad, there's no cords so they're great for car rides and things like that.  You can buy them on Amazon (when you search for Cozy Hugs on Amazon, make sure to read the description - sometimes regular stuffed animals come up in the search along with the microwaveable animals, so make sure the one you get is microwaveable).  I see you're in the midwest too - if you have a Menard's store near you, they also sometimes sell them there - that's where I got mine, and they're often on sale at this time of year (kind of random that they sell heat therapy stuffed animals at a hardware store, ha ha!).  They're really cute, too.  I have a cow, a lamb, and a cat.  I have given several as gifts to friends with chronic health conditions too and they also really like them.  Hope that helps and that your little girl feels better soon!


----------



## Jmrogers4

Glad she seems to be feeling better this morning, I'm still hoping and praying that the scopes get moved up sooner.  Hope Grace has a good day.


----------



## Farmwife

Crohn's Mom said:


> Was just going through your thread again trying to "catch" up with all that poor Grace has gone through ~
> Just curious tho, what ever happened with the Barium Enema study that the GI ordered when you first met him back in October ? What results were there ?
> 
> And also, what has become of the Candida problem? Has she had follow up stool tests to check on the status of this? Or antibody testing ? Has it completely gone ?
> 
> Sorry for all the questions ~ just brainstorming and trying to help you put the pieces together



The study came out clear as far as they could see. However, Grace didn't pass the barium like most people, but they still took the after pictures. The note said she was parietal full of stool but other than that it's clear. Our GP wasn't impressed with that at all. But we have always felt her problem is upper GI.
Candida I was told by the GI is nothing and until you brought it up I totally forgot about it.

Update: Grace is happy and a "little" more spunky.
Haven't called GP yet. I'm torn about when to switch her. Do it now so IF the new GP doesn't work at least the old GP is still around to call and get help. Theirs about three GP's in town that specialize in kids like Grace and their Internist at our hospital. I like that! We'll see.:hug:
I think a new blood test might be worth it.


----------



## muppet

I'd be pretty eager to hear what her GP has to say about her lethargy and difficulty rousing the other day...


----------



## Suzysu

What a rollercoaster - I just can't believe that the GI was so 'meh' keep a close eye on her and if she looks like she is going down hill call him again and don't take no for an answer if you know what I mean!
Have you talked to your GP about changing GP's - is there one that he would recommend? then maybe switch now and like you say the old GP is still on hand for a few weeks if things don't work out?
big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Farmwife

Suzysu
Yes, he did suggest a new GP. We went to him 6-8 months ago. We weren't to impressed because he also said she was so young and we might just have to WAIT and see what it turns into.:ybatty: Well it's turn into a whole lot more. I'm willing to meet with him again and be more forceful about what we want. If he side steps the issues then we'll move onto another.


----------



## crohnsinct

Ugh!  I say don't bother and just go with a different one right out of the gate.  Start calling the ones on your plan and interview them.  Ask how many of their current patients are dx'd with IBD...that may give you some idea of their repoire with specialists and their exposure to GI issues...of course this is all still assuming Grace has IBD. I know our pediatricians experience with IBD and relationship with the specialist has certainly come in handy.  

Oh and can I ask are you just looking at GP's or pediatricians as well.  I would encourage pediatrician.


----------



## Charleigh

So sorry for all that you are going through.  

My son started having joint pain at 2 and continued to fight joint pain and fatigue on and off.  No one would look into it or take it seriously until he started having the diarrhea, blood, weight loss, and elevated lab results (9 years later).  Until then, it was whatever they felt like chalking it up to at the time (growth spurt, mild ADD, etc).  I knew something was not right but I couldn't put my finger on it.  I would have never guessed Crohn's.  I see that what he has now was probably festering at a young age, but without such clear markers no one could really do anything.  It is a frustrating place to be ~ knowing that your child is struggling and not having a name for it.

I think the worst demons to fight are those that are unknown.  It leaves a lot to the imagination.


----------



## my little penguin

Second the pediatrician .
Some hospitals have diagnostic pediatrician a who specialize in kids who have a few things going on:
In Grace's case asthma, allergy and gi


----------



## Suzysu

yes I agree go with another GP straight away - the one you swa 6 months ago is not worth bothering with even if your old GP reccomended him!


----------



## Farmwife

Talk to my head nurse about Grace and her tiredness.
We're to bring her in any time we notice the server tiredness. 
They said they'll do the finger pricks anytime.
Try to incorporate more foods with iron. 
We do already but I'll try harder.
Grace since birth CAN NOT take iron supplement. She vomits like clock work. So do I. We get our iron from foods. She and I have been tested and we are never low.

So onto the new GP. 
I guess my hubby wants to try the one we went to last. We will tell him what we think and what we want. His reaction my hubby said we'll tell us what to do. We did like him last time even through he didn't get the seriousness, but at least he wanted to see her every two months for awhile. Now she has bleeding and more issues. We'll see if that has changed.

Update:
After a great day yesterday, Grace is tired again. More pale.
Tummy pains this morning but went a way after a while.
Her poo is soft to liquid again
Poo comes out now, even when she's trying to pee.
Well, at least she's not crying each time she goes, eh?


----------



## muppet

I'm not sure what the GP _seeing_ her be tired will do for him/her, but at least they're not totally brushing you off.


----------



## Farmwife

I don't know what you mean muppet but...:shifty:

Our GP is going to do the finger pick to test her HB.
Is that what you meant or do I need to go take a rest?

Never mind a rest sounds nice anyway.:medal1:


----------



## crohnsinct

So what happened with the finger poke?


----------



## Farmwife

I haven't gone yet. Ms. Pushy.:ytongue:
She's napping. AGAIN!:ywow:
Hubby's home so we'll all go together. 
:heart:AWWWWW! Family time!:heart:


----------



## crohnsinct

Yeah o.k...so what happened with the finger poke and don't you dare tell me she is still sleeping!


----------



## Farmwife

Ok now don't get mad crohnsinct. Ok, remember your husband's blood pressure and how you over eat when your mad. 
My hubby ran out of time and we had to come home. 
We will go tomorrow. OK

I do have some news. I will put it on a different thread. So future forum member can find it easier.


----------



## my little penguin

Number one rule of a chronically ill child is learning to travel, drive etc...
to the doctor 's alone without your DH.
Whatever is going on is going to take lots of visits which means it will become a necessity.
DS has over 5 specialist plus a pediatrician there is no waiting around for when DH has time. Otherwise DS would never get seen. So far this week he has seen 3 different docs .

You'll figure it out but getting to the docs when she is having symptoms is key and letting your DH work when he needs to also key.


----------



## muppet

What penguin said.


----------



## Farmwife

Yes MOM (my little penguin) and DAD(muppet):ywow:

BUT...DH actually got time off to spend with his family, which being a farmer he NEVER does.
The 5 car pile-up on the road was unforeseen and making it to the doc wasn't going to happen it time. 
My DH aging father who looks like his on a verge of a stoke needs help on the farm to start chores. 
Seeing we weren't going to make it across town and not wanting his dear dad to die why he was working, we came home.
 Remember my hubby loves my girl just as much as me.
 He would have never come if he knew what the hold up would be.
 I would have gone back to town if their was enough time. OK!!!!:thumright:


----------



## muppet

I'm still operating on the concern that your daughter has an emergency going on that isn't being addressed. Way too much weight loss, continued, apparently mysterious bleeding, and extreme lethargy make me wonder why she isn't in an ICU, to put it frankly.

Maybe I've got a totally incorrect picture of what's going on, but from here it sounds pretty nerve wracking and I'm worried that your doctor's apathy might be contagious. It's hard to stay worried when a lousy doctor is minimizing the seriousness of the situation and telling you everything's fine. I think a lot of us have been there and that's why we're concerned.


----------



## Farmwife

muppet, never take my "typing" as a lack of concern for my girl.

:heart::heart:I appreciate the knowledge, concern and the friendship I have gained from everyone here.
To the which I will never be able to pay back any of you the way you deserve to be payed back.:heart::heart:

I have also been through this awhile with her and perhaps I am laid back compare to some but I will get my answer whether a "farm wife rolling pin of defense" has to be used or not!

Thank you once again one and all.


----------



## muppet

Nonono not what I mean at all. Of course you're concerned. Its hard to not feel hysterical or like you should chill out or back off when the doc is downplaying everything, is what I mean. Sometimes its the doc that's nuts.


----------



## Charleigh

How much weight has Grace lost so far and in what amount of time?


----------



## kimmidwife

Hey Farmwife,
Just checking in. Sounds like you guys had a rough day. I had a question for you. I was speaking with a friend whose daughter is having very similar issues to Grace. She went through three GIs the third one is finally listening. Anyway she mentioned something which I wanted to ask if Grace has this issue. She said her daughter often does not feel when she has to poo and has accidents. I was wondering of this has ever been an issue?


----------



## Farmwife

Sorry muppet, I'm still trying to learn you personality. Your a shot from the hip kind of guy. Nothing wrong with that, just have to get use to it.

Charleigh, lost 4-5 lbs this time around. Took about 3-5 days. She's put 2lbs back on once I upped her shakes (Boost Kids). Grace is still a good size (weight) but our GP wants to keep her weight up for times like these.

Grace was tired but easily perked up. Good. 
Docs tomorrow for finger prick and maybe labs, but I'm not telling Grace. Poor kid.

Then my Grandpa is having problems at his new home so Grandma needs some help. I will try all I can to help them. That will be good for Grace and Grandpa. She's his little angle. Just when I thought I'd have a slow winter.

Off for the night.


----------



## Farmwife

No kimmidwife she can tell when she needs to poo (Thank God) but...her urine accidents are a complete surprise to her. They usual happen around the constipation times.
Why, what did your friend's child find out?


----------



## kimmidwife

They are testing her for Hirschprungs diseas(spelling?) I have not had a chance to look it up yet to see exactly what that is. But will probably tomorrow. Have to go to bed. Had a rough day. I will write about it tomorrow.


----------



## Farmwife

Yes kimmidwife that what they tested Grace for. and the PA who did the study said point blank, she doesn't have it. YA!


Update:
Grace had a great night.
Off this morning to GP's. Hopefully before the slush hits.
I can take snowy road, rainy road but icy slush scares me to death.
I hope to be back by the time it comes in.

Busy day, hope to be tonight or tomorrow.

Life once again is getting in between my forum obsessing.:sign0085:


----------



## crohnsinct

So is she up?  Is she dresses?  Are you in the car?  Are you saying we have to wait until tonight to find out finger poke results?  Well, glad you told us because the delay in info would definitely have me thinking she was admitted.  

Also, I can't get back on until tonight anyway as O's infusion is today and after that swimming.  I won't be home until after 9 so you are safe from the wrath of CIC for a while.  Cover me muppet. 

DRIVING?!  UGH!  I have a long drive to our doc and infusions and of course infusions never coincide with appointments.  Anyway, it is a fine drive but there is one part that is hair raising and it freaks me out everytime.  Swimming actually got me over my hesitation with a lot of driving situations, then youngest with learning disability had to go to far away private school and now O and docs.  It is amazing what we would do for our kids.  HATE ICE!!!!!! 

Have you left yet Farmwife?


----------



## Susan2

crohnsinct said:


> So is she up?  Is she dresses?  Are you in the car?  Are you saying we have to wait until tonight to find out finger poke results?  Well, glad you told us because the delay in info would definitely have me thinking she was admitted.
> 
> Also, I can't get back on until tonight anyway as O's infusion is today and after that swimming.  I won't be home until after 9 so you are safe from the wrath of CIC for a while.  Cover me muppet.
> 
> DRIVING?!  UGH!  I have a long drive to our doc and infusions and of course infusions never coincide with appointments.  Anyway, it is a fine drive but there is one part that is hair raising and it freaks me out everytime.  Swimming actually got me over my hesitation with a lot of driving situations, then youngest with learning disability had to go to far away private school and now O and docs.  It is amazing what we would do for our kids.  HATE ICE!!!!!!
> 
> Have you left yet Farmwife?


:rof:


----------



## Johnnysmom

Farmwife,

Not that you need another voice chiming in but.....

Johnny lost weight like that too.  He would lose 5 lbs then gain back 2 or 3 after feeling better and eating better.  But the over all trend was weight loss of 3 lbs from 9 year check up to 10 year check up.  Before that he was gaining 14 lbs per year.   It was subtle to see him go from 97 lbs to 95 lbs over a year but considering he was suppose to be gaining as a growing child, it was unacceptable.  What is her weight like from year to year?  Is she gaining at each check up?

Hope the roads are better!  I know those Michigan roads can be awful!

(((((Hugs)))))))))


----------



## Farmwife

Update:

No we haven't left.:redface:
 The nurse called and they want her for an appointment TODAY.:ywow:
Not just a fly by visit. They want a pow-wow (brain storm) some possible changes.:blush:
I'm totally nervous. I never get nervous. What could it be???:shifty:
 It did sound like they wanted labs no matter what.


----------



## muppet

It sounds like they may finally be taking this seriously and are ready to be proactive about whatever's going on with that poor girl. This can only be a good thing. Definitely get out there and let them do their thing!! :thumleft:


----------



## Jmrogers4

This sounds like good news!  Sounds like they want to get to the bottom of this too.  Maybe they will move up the scopes :thumleft:  I'll be waiting impatiently for an update all day :shifty-t:


----------



## Farmwife

It's our GP (family doc.) were seeing.


----------



## muppet

Still a good step. He can put some doctor-level pressure on the GI and light a fire under him, or maybe write you a pre-auth for your insurance to a better GI and get things moving.


----------



## Farmwife

Her HB is 11. Very good.

She slept from 7 last night till 7;30 this morning. Than nap from 10:45 till 2:30 Not good.

So, are you ready for the news my hubby has yet to hear?

Our wonderful family doc's head nurse, whom I love said (Doc was in other room with an emergancy).........Onto C.S Mott's children's Hospital!

They feel that Grace needs a team of docs to evaluate her. 
They feel she would best evaluated at a large university hospital like Mott's.
She said they would prefers us to cancel scopes with the other GI because GI's are very picky on how they do the test and would not want Grace to be set back by that. It's better to wait an extra month and have it done to our liking. (SCARED)
She said that it's true that Grace might be "slipping into something" but that does not mean to let it go till then. She said we might still leave without a clear answer BUT we should have a direction and a picture of what it might be. I'm happy with that!

Ok, more or are you tired of reading? I'll tell you later. I'm tired of typing and Grace is having belly pains.

Here's a hint. They want Grace admitted! 
But it doesn't mean it will happen so don't get excited till it does.


----------



## QueenGothel

Well being that she is so constipated I really would think being admitted would be better to do the prep, then you know you can get the tube inserted, being that you cannot guarantee she will clean out like everyone would for a scope.  If you get admitted you won't have to wait long for a scope at all. Rowan got her MRE 10 hours after being admitted to Motts.  The hospital is very nice and doesn't have that hospital smell at all. Also when admitted there is a team... Like 8 people, Attending, Fellow, residents, and medical students.  It all is pretty amazing I think.


----------



## jmckinley

Yay for moving on to Mott's! I think a team is exactly what you need. I know you don't necessarily want to be admitted, but it helps so much. I finally called and begged the GI to admit Ryan this summer. They did and in 5 days, we had a plan! It took until now to get it all going in the right direction, but being in-hospital, allows the team to brainstorm and come back to you as needed with ideas and for tests. Plus, you can rest a little knowing there are people a button away to help you!

I am so sorry that Grace (and thus you and DH) are going through all of this! Endless Hugs and Kisses!!!


----------



## crohnsinct

Um O.K. I'll start (haha thought you were in the clear..nope! hubby home early and taking swim duty). 

11?  Well o.k. but our doc looks for at least 12.  11 not worth freaking out over but I would watch it and if she isn't admitted anytime soon bring her back for another poke. 

Do NOT under any circumstance cancel scopes with current GI!!!!!!!!  You still do not have approval from insurance company (and if I recall correctly that approval request was cancelled) to go to Motts.  Do not cancel scopes until she is actually in the Motts building!  

Better to wait an extra month than have to rescope?  I would debate that but it is your call.  With the weight she is losing another month could be detrimental.  What about all that blood you were seeing?  What about the pain.  Wait another month?  Thanks but no thanks.  If she can't be seen by Motts until the end of January,  I would take scope with current GI (and I am not his biggest fan).  Things we Grace change drastically and although she may "seem" well now, I shutter to think what she will be like in a month...heck or even a week. 

Admit?  Yes!  But where?  Local hospital? Blech!  Aren't they the people who sent you home twice (or was it once) already?  Mott?  YES!  Do it!  Do it now!  Have you left yet?


----------



## crohnsinct

Oh yeah...sorry you are going through this endless hugs and kisses.  

Have you left yet?


----------



## dannysmom

I hope you get into Mott's soon. Being admitted sounds like a good plan so they can escalate the testing. Good luck!


----------



## Sascot

Wow, still not sure how I managed to miss quite so many posts - feel like I'm in a time warp or something! 
That's great they want to get Grace seen at a big hospital, and hopefully a good team of docs will get to the bottom of everything!!  Admitted - well, here's hoping :ysmile:.  Hope you don't have to cancel the scopes and then wait too long.


----------



## muppet

I agree with Crohn'sinct. Do NOT cancel the scopes. Have the scopes. The new GI can deal, and if she has to be re-scoped, so be it. What's a re-scope next to all the pain she's already been in? 

If you cancel and God forbid Mott falls through somehow, then you'll have been REALLY delayed...


----------



## Farmwife

Yes, scopes will be kept!

The foolishness of getting her admitted is already starting!


----------



## Jmrogers4

Yeah for Motts, hope it all gets worked out soon! Sending prayers, hugs, whatever you need.


----------



## Tink572

Yay for a wonderful nurse!  I am so glad Grace is finally going to get some treatment!  

Secret I learned when my son was in the hospital.....don't piss off the nurses!  Ok, I already knew that and I'm sure you do to!

Hope you get some answers and Grace gets some much needed relief.


----------



## QueenGothel

You will probably be on the 12th floor.  12 East has the best nurses. Love them and they have a union so no funny business they each usually only have a few patients each.  I hope you get to me Chris Dickinson, he was awesome, by far my favorite GI.


----------



## Catherine

Hopefully this new direction will be get thing moving forward for Grace.

Thinking of the whole family.


----------



## crohnsinct

Is 12 East the psych ward?  Just sayin....


----------



## kimmidwife

Finally had a chance to get back on here! So glad for good news! yay for the new hospital and GI docs. I am so glad she will be evaluated by a team. Have they given any timeline for when they're admitting her? The truth is once she is admitted it is usuall y easier to get the insurance to agree for her to continue treatment with those doctors when she leaves.


----------



## Farmwife

Isn't doubt horrible!:ymad:
For some reason last night I was freaking out about changing my mind and wondering if I'm making to much out of this. I mean for the most part she's very HAPPY. She's not in dire pains all the day, she's not SICK like most of yours! She has gone a day or two or maybe even three in almost perfect health(not lately). 

Then........

In the middle of the night her knees start to bother her, by morning time her ankles hurt to walk on, then at breakfast food not sitting well and she's cramping for awhile. But now it's all gone (for the time being).

Doubt is horrible!:ymad:

Sorry just reflecting a bit before my overly busy day gets started.:hug:


----------



## muppet

How are the admission plans progressing?


----------



## Farmwife

Calling the nurse this morning. My twin who takes my nephew their for what's now being called rare brain disease said that she was told also that you HAVE to go through the ER if you haven't been seen. My doc is going to try to let them KNOW about Grace. We'll see what happens. The reg, nurse that handles the scheduling is off till Tuesday. Hopefully when she's back maybe she'll know more tricks of the trade. Of course they can call her I know she wants answers for Grace as much as us. I tell ya, I wish he wasn't retiring. There the best.


----------



## muppet

...so they're saying that her admission will be Tuesday, at earliest?

If it were me I would not accept that, but you do what you have to do.

It's best not to go through the ER, _but_ if it seems like doing so will clear the log jam and get her in there, then, again, you do what you have to do.


----------



## kimmidwife

Actually Muppett we have had very good experiences when we went through the ER several times. It was the way we got Caitlyn scoped so quickly and diagnosed so quickly. Farmwife I sent you a PM last night don't know if you saw it yet.


----------



## muppet

I guess it will depend on the facility. Here in CT the ERs are slow, backlogged, and staffed by people of questionable competence. Still, if it means getting admitted 3 days earlier, I'd go there in a heartbeat.


----------



## kimmidwife

I guess it depends on the ER. I have found they tend to be better at children's hospitals.


----------



## Farmwife

We hope soon but even the nurse admitted she has no idea.
When I called Mott's she said they were booked out till January. No GOOD!
But she was so sweet when I explain and she took my doc's fax number and said she would get the ball rolling for the GI appointment. But of course she couldn't say when the appointment would be. My Twin is also going to make a call to a doctor their and see is he can help. A lot of people are helping Grace which I appreciate. :kiss:

Grace woke up on her own and is now laughing a Curious George Christmas Monkey. I fear now she will try to swing from our x-mas tree.:rof:


----------



## Farmwife

What I'm hearing is this ER is very good but my doc hopes if they hear about Grace before hand that might help.


----------



## muppet

Farmwife said:


> What I'm hearing is this ER is very good but my doc hopes if they hear about Grace before hand that might help.


All your doctor should have to do is call them and tell them you're coming. Does he not have admission privileges there?


----------



## AZMOM

Did they tell you whose service they are admitting you too or does the GP have privileges?

I would not under any circumstances cancel anything until you have a clear path. 

I know the nurse said admit her. Did y'all ever see the doc?

Prayers for Grace & your family- 

J.


----------



## AZMOM

Im behind. Sorry for the questions that were already answered!

J.


----------



## Farmwife

muppet said:


> All your doctor should have to do is call them and tell them you're coming. Does he not have admission privileges there?




Things are changing so darn fast in our medical system. 
Primary Doctors don't have the authority they use to. He hates that.  
Which is one of the reasons he's retiring.


----------



## muppet

Farmwife said:


> Things are changing so darn fast in our medical system.
> Primary Doctors don't have the authority they use to. He hates that.
> Which is one of the reasons he's retiring.


I wonder if that's some policy change local to your area, because this is news to me. 

Lucky for us, in the past, Sarah's doctors have clinics right in the children's hospital and we go from the clinic right up to an inpatient floor, but there have been other times where I've simply called the pediatrician on the way to the ER to say "We're on our way there, please call ahead of us."


----------



## Farmwife

AZMOM said:


> Did they tell you whose service they are admitting you too or does the GP have privileges?
> 
> I would not under any circumstances cancel anything until you have a clear path.
> 
> I know the nurse said admit her. Did y'all ever see the doc?
> 
> Prayers for Grace & your family-
> 
> J.


:hug:
Yes the doc saw her last week and I've talk to him or he's called me a couple times in the last two weeks. I've talk to him more then my hubby.:confused2:

Not canceling anything! I do believe the GI she still has wants what's best for her but......Grace needs head to toe evaluation. It might not be IBD but we do need to figure out what this is. Mott's is a University hospital and teaching hospital, they take the hard cases. Which is why the doc feels that this is the best place for now.


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## AZMOM

Like Muppet my only worry for you is if you head to an ER with no prior arrangements and she's not experiencing acute symptoms, she may not qualify for admission....even at children's teaching hospitals.  Just want to prevent that for you!

J.


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## Farmwife

That's my worry also.
I'm going to the doctor's right now. I'll talk to him some more about this!

Bye


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## QueenGothel

In my experience U of M does very well with transfers.  Unfortunately she is not a transfer since she is not currently admitted.  Also I think it is nearly impossible to get a direct admit at a new hospital without being transferred as an inpatient. I say let the doctor figure it out.  Hopefully he has some strings he can pull and get her admitted via ER.  We have had great support through U of M ER in the past.  Rowan has saw a few GIs in the ER. Of course we have never not been admitted. I hope they can get her case bumped up as planned via doctor to doctor referral.  Otherwise they wouldn't admit Grace I don't think.


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## Crohn's Mom

You have said before that you have a second Pediatric  GP - if an adult family GP can't for some reason (which is news to me too yikes) get her admitted, than surely your pediatric one can. 
I'm sure you've already called them - just thinking out loud here


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## Farmwife

OK saw doc and head nurse.
 They've already been in talks with Mott's, YA.
They (Mott's) think she's very interesting case and want her whole history.:eek2:
 The 5 page write up I did for the GI, I never gave to GP and of course when the laptop got fried I lost the whole thing. So today will be spent going over forum and the nurse said I'm to go back to when I was PREGNANT and start from there. WOW! She said bombard us with every little detail and make sure we send along her symptom journal as well. She said she's already putting together a file from there notes. Mott's wants it all! 
BUT.... I and they still have no idea about timing. 
Still we'll keep the scope date.
Their's an interesting angle that my GP is going at but if it works then so be it.:ghug:


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## muppet

This is good good good. Get writing!! Also, if Grace was ever in an ER or admitted anywhere else, try to list that so that your doc(s) can get those records, as well!!

About not knowing about the timing: :ymad::ymad::ymad: PUSH PUSH PUSH get that girl in there so that they can see what's up with her. All that fatigue is bad news.

Most of all Good Luck and keep on top of those people!!


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## Suzysu

My goodness, what a whirlwind - thinking of you and Grace today and hope she gets admitted asap - sending big hugs xxxx


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## QueenGothel

Glad they are diligently working to get her in.  I really hope they can do it with a quickness.  Glad they are working any angle they can.


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## my little penguin

Just saying if they are asking for all her history then it may be a while before she is seen.
You get the entire timeline together and give it to your doc.
( 1 day if your quick if not Monday)
Your doc reads it and makes their own doc notes to add making it official ( at least 1 day so Tuesday .
They get the info to the administrative side at Motts who will have a whole team reviewing it ( in a rush 1-2 days since they need to discuss opinions and how they would want her there action plan etc)
So if your very lucky next Friday.
CIC was right unless your gp has some tricks getting her admitted from the ER when her symptoms are not as obvious right now may cause an issue for you and the insurance . But since they are reviewing her records they could just open up a slot for her to be seen on day X.
I have seen it before when the doc wants the patient to be seen vs you trying to schedule an appt.

Either way I hope she can get seen quickly and you can finally have some answers.
Good luck Motts.


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## Farmwife

Thanks everyone,
I got her whole history recorded and in there hands already. 
:thumright:
Yes going to the ER won't happen unless it's an emergency.:frown: Even then I would probably go up here. I've had horrible battles with the insurance before. They decline me because of a pre-exciting condition-HEAD ACHES! That's right they said since I've had a head ache before they won't cover it. My doc still won't charge me because their still fighting it for me! 
Grace had a wonderful day except some joint pain. She's more alert. Woke up from nap be her self! YA!!!
See maybe I can get my bubble put back together by Sunday!

:ack:This smiley will be used when I have to tell crohnsinct something she disagrees with!:ytongue:


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## my little penguin

Sorry no bubble allowed.
Does any ped near you in your network have privledges at Motts?
That may be something to look into .
Also will your insurance change at all for the new year.
Per the new crazy health care laws they can not deny a child for a pre existing condition so at least that is in your favor for now.
Hugs but NO Bubble you still have a lot of work to do.


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## Farmwife

my little penguin said:


> Does any pead near you in your network have privileges at Motts?
> That may be something to look into .




I don't know!:ack:

When I start looking for a GP (because I haven't:ack I'll ask.

I'll start when my bubble is construed!:ack:

David since you have all time in the world. :ack:
Could a smiley in a bubble be added to the group. :biggrin:
I would like it to be named the mlp smiley! :ack:


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## my little penguin

You can run but you can't hide.
There is this thing called the "Internet"
You put in your Health plan website and pick specialty "peds" 
Miraculously --->>> wait for it
A few mere seconds and .......
Out pops a list of providers
A few more clicks. On the peds website and you have a list.:ack:

No mlp bubbles - I think FW bubble since you want to stay there.:ytongue:


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## Susan2

Like this?


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## Farmwife

Do it for me mlp, your a doll.:ack::ack:


:ytongue:When I have time AFTER, my bubble making revamp I'll be happy to do it.
I decided to place my bay window on the south side over looking the meadow. It's going to be an all day project.:biggrin: Bye-Bye


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## Farmwife

Susan2 said:


> Like this?



I love it but....can it be floating up and down?:ack:


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## Crohn's Mom

Oh Farmwife, 
If I were in your shoes (which I have been) I would be carrying a machete, instead of a rolling pin, and slicing any sign of a bubble ~ There's no time for bubbles 
The only bubbles you should be seeing should be coming from princess Grace's little magic wand, as she's blowing bubbles out side, while she patiently waits for you to type in a few words into your search engine :ghug:


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## Farmwife

Thank you Crohn's Mom, your right!
I'll do it right now!
Thanks your a doll and a real treasure to this forum.


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## Susan2

I'll play with it, but not just now. It is almost midday and I haven't yet taken the dog for a walk or gone down to the shop to pick up my Saturday newspapers.


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## Farmwife

Thanks and have a good time.


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## my little penguin

Type click call
Don't want to see you till you do.

Of course for crohn's mom you do it ...
Me I get all sorts of $@#%.
You are suppose to respect your elders.
Now go type


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## crohnsinct

I saw you used my smiley and good thing you did because that bubble making comment really had me going!  

Only bubbles allowed are in the champagns (yes had to bring it back to wine..didn't want to let you all down) that you pop when you get a dx!!!!  Or of course the bubbles in your convertible car bath!  

Have you left yet?


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## Sascot

Oh, I don't know - a bubble sounds good to me along with a hefty dose of denial :rof:.  Pity real life won't let us .
Make sure you do your homework or these gals will be mighty cross!


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## Farmwife

Grace had a great night no pain and I got to sleep in! YA
 Wow, I feel so lazy getting up at 6:00 am. 
I'm off to spend a wonderful week-end with the hubby and kids.
Christmas decoration, hot coco, restaurant, church and family fun are our plans this week-end.:hug:
Y'all have a good week-end and pray for Grace to have a good one too.
 I started her on a natural supplement for joint pain and it seems to making a little but of a deferents. YA!


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## QueenGothel

Ok smartalic,

CHILDREN'S SPECIAL HEALTH CARE???! Did you talk to anyone about this yet? Secondary insurance through the state we are fortunate to have it most states do not. This would stop all this network work around crap happening. At least ask someone at Devos about it.


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## QueenGothel

Are you avoiding this for a reason?  I mean it could be what gets Grace covered at Motts.  Please tell me you did.


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## Crohn's Mom

I think it's wonderful that you are going to have a fun filled weekend with your beautiful famiy ! I bet those don't come around too often these days :hug:

Enjoy floating in your bubble for a couple of days ~ pretend its a hot air balloon and when the weekend is over, it's time to break out that machete and burst that (safety) bubble and get some much needed answers ! :hug:

Oh and hey ~ share some pics with us of little Grace decorating that Christmas tree ! We would all love it ~ and YES I AM speaking for the rest ! :rof:


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## izzi'smom

Wow, has Grace been through the wringer. 

Here's hoping that Motts gets you in ASAP to get some answers. 

...and how did you find my bubble?? 

I am also anti-ER unless needed...it may mean a full workup for G that she doesn't need...to r/o things you already know she doesn't have. 

(((HUGS)))


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## AZMOM

Just checking in, Farmwife. Hoping for admission news!

J.


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## crohnsinct

You can run but you can't hide.  I saw your posts on other people's threads...I know you are out there...Are you avoiding Mary?  Not smart...she lives in your state...no airfare necessary.  I have your address..I can be bribed...


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## my little penguin

:rof::rof:

I am with CIC .
Hopefully the silence is due to all the forms you need to fill out.


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## Tesscorm

crohnsinct said:


> You can run but you can't hide.  I saw your posts on other people's threads...I know you are out there...


:rof:  Crohnsinct - I think you're scaring me a bit utahere:

:tongue:


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## jmckinley

Just checking in! I hope Grace had a good weekend and that you are getting some answers soon! We went the ER route with Ryan...positive thing - we got admitted and got answers, found a great GI doctor. Negative thing...I felt like Ryan had to go through some tests there that weren't necessary and then they repeated them upstairs.

Found out anything about that insurance yet? This should be a bubble-free zone for a little while  :nonono:


:hang:


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## Farmwife

crohnsinct said:


> You can run but you can't hide.  I saw your posts on other people's threads...I know you are out there...Are you avoiding Mary?  Not smart...she lives in your state...no airfare necessary.  I have your address..I can be bribed...


I KNOW YOUR FULL NAME AND ADDRESS AND WHAT YOU LOOK LIKE IN A CONVERTIBLE COVERED IN BUBBLES AND I"M WILLING TO GO TO THE HIGHEST BIDDER ALSO!:ybiggrin:


What a great week-end. We had a good time. My dear hubby took a second job so these family time is even more sought after.

Update:
Grace was constipated for 4 days. No real bad pains or EIM's during these times but she is very tired STILL.
She went poo yesterday. By evening I saw joint, belly pain creep back in.
Does anyone have a thought as to WHY? 

_*Why whens she backed up, she has little pain but when she's pooping daily the pain of her different EIM's are back?*_

I did nothing with medical stuff yesterday.:ack:
Today I will be on the ball again and seeing where things stand.
We decided which new GP to go with and hopefully with in the week we should be seeing him.
Labs need to be done but I have to see which GP (old or new) needs to do them.
_*Does anyone know if during the scopes they will run a panels on Grace*_. If that's the case I might wait but my GP said the tiredness can't carry on for to long without doing them.
So there you have it. 
 I' m off for the day! I have to get the wall paper for my bubble.:ack:


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## crohnsinct

Oh!  Is that your new M.O. Hit and run? 

Is the new GP a GP or a pediatrician? Pretty sure the committee voted pediatrician.  

I vote get the bloods done now.  I don't know if they do them at colonoscopy as O had hers impatient and they were constantly drawing blood.  You could call the GI's office but 12/27 is still three weeks away so I would draw now if they are saying she needs them.  

I see my smileys and you are using them correctly!!!  

Go get that appointment with new GP and go finish calling on that state insurance and call about the Mott's decision.  No time to spend decorating a bubble we all popped days ago!


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## Farmwife

crohnsinct
:thumright:This GP is an Internist Pediatric Doctor. The guy we went to last time.:ack: Yes I will state everything again and tell the new things that are happening also. We'll see what he says this time. There's only two of these guys in our town and they both work in the same office.

I will ask today for the labs like I said but if  we can get into the new GP this week I would like him to do it. That way I can see what he orders and how seriously he's taking this. See my thinking?


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## crohnsinct

Yes.  I see your thinking.  I just wanted to make sure you were getting it done now and not waiting until 12/27.  So at 9 you are calling for that appointment...and at appointment asking for their help getting the Motts decision pushed through...right? 

I thought you guys didn't like that doc?


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## AZMOM

Farmwife - Just a thought - you should be able to take copies of your labs anywhere for an opinion. Unless some symptom is "new" or the new doc wants to draw something different, Im not sure labs for labs' sake are going to get you anywhere. 

I hope you can work on the admission to the new GI team. Having a GP/pediatrician is great for the illnesses that come up, check ups, etc. But for GI issues, you need a pediatric GI as captain of the ship. With Claire and our multiple specialists, they work as a team and our pediatrician is part of that team but everyone talks to GI before making changes. Make sense?  Got get you a captain for the ship!!

This is officially a bubble free zone!  Lol

J.


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## Farmwife

Well we didn't hate the guy but we walked away felling like he didn't get it. But now I think it's because we didn't stand our ground. Lord willing I will do that now!!!!

AZMOM,
If he (Possible new GP) only orders that basic labs and not the full panels like she needs, than I would wonder if he really gets it. Does that make sense? We have a GI but are seeking a medical review from a different hospital. Yes a new GI would be involved.


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## my little penguin

Your gp doesn't have to get it nor should he.
This is the Gi domain.
His concern should be to get her seen period at Motts .
Does he have privledges there?
Gp do not have the exp which is why you see a Gi .
They just help coordinate with the Gi which is why it is critical they have admitting privledges at the hospital she is being seen at and then can share records easily.
No bubbles allowed - get moving and searching.


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## AZMOM

Farm wife - I understand what you are saying. I just wouldn't really put a lot of time into someone that can't captain the ship for Grace. 

J.


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## Farmwife

Thanks for reminding me mlp.

When I call up the new GP, can I just ask the secretary if he has admitting privileges at Mott's or even Devos? I take it, I could.

 My wonderful old GP doesn't BTW.


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## QueenGothel

Something's got to give!  Glad your seeing a pediatrician.  Even though Rowans situation is unlike any other kid my pediatrician sees, she has learned to get very informed about J-pouches and always asks me before sending labwork to make sure I don't want anything else ran.  Because she know I know more she doesn't have an ego. She works hard to make sure we get everything covered in our checkup that makes me nervous.  (She doesnt want me calling her back worried:confused2 I hope your new GP takes the time to do their homework and really understands you want to be complete in her dx. No rock unturned.  Before I even start talking about Rowan I pull them aside and fill them in on how I am a control freak and need to be informed and I require a plan B. I think some might have found this annoying but now that we know each other, they realize I am easier to deal with if I have all the cards laid out for me.

Can you make an appointment even though it is out of network to go to Motts?  If you can I would make an appointment anyway even if it is January and a on a cancelation list.


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## izzi'smom

Just a reminder that it's almost 9. 
I have said this before, and I know my relationship with my GI is different :blush: but I tell him what labs to order. I tell him why I want them, and because most of us here do our research and nothing is in left field (they are reasonable requests), they get done. I didn't like the kidney function labs (they were at the upper range of normal) and the Peds glomerular function rate requires a cystatin c level. The lab didn't even know how to draw it, but it got drawn lol! If I didn't have a doc that would take my (reasonable) requests for my childs healthcare into consideration, I would move on.

Loads of luck...hoping today is a good day on the farm. 

:ghug:


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## muppet

Which doctor was it that was working on the admission to Mott's? I thought that was a done deal in terms of making the decision to get her in there, and only footwork was left? What's changed since then? I'm confused?

If either of my daughters had half the trouble Grace is having I'd have been in the ER already. Not judging here, but I think you may be in need of an assertiveness upgrade if you're going to get Grace the help she needs. I'm really worried to hear about all her symptoms and the apparent lack of urgency amongst her doctors if admission to Mott's is somehow off the table since late last week..?


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## Johnnysmom

If you are considering admission to DeVos, the G.I. would be the quickest way in.  If he was willing to do the referral to Mott's I would say he should be willing to get her in quickly to DeVos.  Then if they found something but felt it was out of their expertise, they could transfer to Mott's.  Sounds like that would be quicker.


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## Farmwife

Thanks everyone!

My GP is doing this and on the phone a second ago with them she said, she's working on it NOW. 
We don't know  if she'll be admitted. OUR GP WANT"S HER TO BE ADMITTED. I'm sorry IF I confused anyone.
No matter what.... the scopes will take place. 

talk to some new GP's sectaries. I'm really excited to meet with them.



Just a side note.:ghug:
I'm sorry if I've put to much info out there to cause a ruckus. I know y'all care what happens  to Grace and I love you all for it. However, I feel like this thread is becoming a little to stressful (again that's my fault) for me.

I value each of your wonderful opinions and will continue to be on the forum, if that's OK, _*I'll still update but maybe not as much for awhile*_.
I defiantly want answers for my little lady and I know this will be a great place to fellowship and wish you all the best.

My love as always.:hug:


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## TangieC

Been MIA for a while, but I'm glad that you're going to get the scopes done!!! Finally  (Hope I didn't miss anything...I didn't have time to catch up on every post!) Still praying for you! Send me a PM if you need a vent!


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## Zinnia

Hi!  I am new to the forum.  I am a parent of a child diagnosed with Crohn's.  However, his case is a little unusual.  I believe he may have a Mast Cell Disorder, possibly myocysitc enterocolitis?  Please read the (long) story that I have posted about my son's situation.  Let me know what you think!  Thanks.


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