# Back to Colitis-Farmife



## Farmwife (Feb 23, 2013)

*Back to Colitis- Little Farm Girl*

In my desperate attempt to journal the path to my daughter’s diagnosis, 
I found myself making way to many new threads. 
Please believe me that this annoys me to no end. 

On Thursday we got a letter for her special insurance with a different dx on it. 
It said Eosinophilic Gasstroent. :ywow:
I was SHOCKED AND CONFUSSED AND CALLED THE GI!!! :ymad: 
The GI said that until he sees damage (visual) on her scopes he is calling it Colitis, AGAIN!:yfaint: 
He does feel she “coming into” IBD but doesn’t want to dx her with something wrong and at a young age. 
The GI reassured us that it will be treated the SAME WAY and with the SAME DRUGS as IBD which is why he and the staff were using the term IBD already. The next couple scopes will tell the whole story, he hopes.

First, I’m OK with this, kind of.

Second, I might be trying to buy time before the inevitable.:ybiggrin:

He ended the call with saying it’s Colitis for sure and Eosinophilic Disease.


My hubby and I have a lot of feelings on this but right now we just have to get Grace feeling better. 

So thanks everyone for hanging in there with us. I wish I could say this ride is almost done but......................:ack:


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## my little penguin (Feb 23, 2013)

Just shaking my head at your Gi
Sheesh 
What about the biopsies ?
And the inflammation on the biopsies found in her stomach and TI
I am so sorry - the treatment for eosinophilic colitis ( EC) is NOT the same as crohn's.
Head wall


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## my little penguin (Feb 23, 2013)

Oh btw we had three separate gi's and two pathologist
From two different hospitals declare DS had crohn's based on microscopic damage alone.
Add to the fact your Gi has not done any imaging ( mre, ct , or pill cam)
Even with only microscopic damage our Gi was very upset with the imaging sept when he was first dx since they were going to make us wait two months to have an mre.
After he talked to them - DS had imaging in a week.


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## Farmwife (Feb 23, 2013)

My first though after hearing from the GI was...mlp is going to flip.


BUT, let me state fanatically (sp?) that I understood what the GI was saying and agree.

I however do believe we need and MRE or pill camera and she WILL be getting these before 6MP touches my girls' lips! I promise you that!!!!!!!!!


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## Jmrogers4 (Feb 23, 2013)

Think you have an answer but it's not an answer.  Is that what it is?  I feel like it's going in circles, but as long as she if feeling better.


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## Farmwife (Feb 23, 2013)

I feel like I've been chasing my tail since I gave birth to her.

He feels she's "coming into" IBD but calls it Colitis for know.

Jacqui dear why do you have...David Testing Support Group at the bottom of your Sig?
I'm out of the loop, so I have to pry to get answers!


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## Farmwife (Feb 23, 2013)

Never mind I looked. Cool. David do have to be fancy dancy Monitor to join your group?????


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## Jmrogers4 (Feb 23, 2013)

Does it give you an option to subscribe here http://www.crohnsforum.com/showthread.php?t=47891


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## Farmwife (Feb 23, 2013)

Yes, I just joined. I really don't know what I joined but as long as he doesn't ask me to sacrifice chickens and drink their blood, I'm ok with it.


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## DanceMom (Feb 23, 2013)

We are basically in the same boat and our GI said something almost identical.  Like you, I totally understand not wanting to call it IBD if they aren't 100% sure that's what it is.  I was also told, "We will treat it as if it is IBD and our goal is to get her healthy again."  Call it what you want, our kids deserve to feel good.


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## Farmwife (Feb 24, 2013)

It's good to know we're not alone DanceMom.

Eos disease (EGE or EC) is soooooo similar in many ways to IBD that I want to make sure which one this is. If she has both than fine but I want to make sure!!!! My few spare minutes have been trying to research the path reports of microscopic inflammation and damage in both diseases to see if it all fits.
No matter what I just want her to start to heal. The GI, I feel is trying to do this.


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## Farmwife (Feb 24, 2013)

I have a question.

Grace for the last couple days has been having lose stools. Today she been to the lou about three times (which for her is a lot) with the lose stools with lots of gas. 

Is it possible that her intestines have less inflammation in the track, there by letting the stool go through faster?

The good news is her tummy pains are much better.:soledance: So all we have to do is get the stool, joint pain, paleness, and slight tiredness under control and she'll be perfect.:wink:

Off for a couple days. Another busy week awaits. I'll try to check in a night. But if my sentences are more incoherent than normal please remember I should be sleeping.:ybiggrin:


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## Jmrogers4 (Feb 24, 2013)

Makes sense to me, less inflammation, liquid in liquid out, wouldn't hurt to keep track of it though.


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## my little penguin (Feb 24, 2013)

Just track it and let Gi know


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## QueenGothel (Feb 25, 2013)

I know it is frustrating you to not know what your treating, until you get more imagining and or biopsies unfortunately this puts you in limbo.  I know your happy to be going somewhere and her case being as complex as it is, fact is it is the GIs fault that he didn't take more biopsies during the scope in my opinion.  Hard to be thorough with the treatment if he wasn't thorough with the study/scope to get a dx. Sorry you are so frustrated.  :ywow:


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## Tesscorm (Feb 25, 2013)

It seems it alls works at a snail's pace (at least, from a parent's perspective!) :ymad:

But it does seem you're seeing some improvement..., hopefully, you'll begin to see more and more! :ghug:


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## Tink572 (Feb 26, 2013)

:ack:


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## Farmwife (Feb 28, 2013)

Just a sad update. :confused2:

Grace the last two or three days is back to sleeping a lot.
Not drinking much. Joint pains flaring again. Abdominal/belly pains.
A strange bruise on her lower leg that is staying the same and not fading away.
Constipation has come back. She did go today with black specks in the stool.
To top this off I think her n-g tube is starting to bother her sinus cavities. 
When the nurse put the tube in and checked her tube it was filled with blood.
 It did clear but the nurse said keep an eye on it because some can't have the tube for long periods of time. GREAT!:yfaint:

My hubby and I are just in disbelief this is happening. 

My poor hubby keeps saying I thought EEN was suppose to help, I thought Pred was suppose to help, I thought...........
Of course I have no good answers for him. I think the hardest part was seeing her get well and then seeing her fade again. It brakes a mother's heart. 

:hug:I know it will get better. It's just the roller coaster I thought was going to slow down once we started treatment.

YES, I have a call into the GI. Waiting to hear something tomorrow morning. 

:thumright:On a good note. I ordered a Buzzy Bee (well Grace's is the Lady bug). I hope it arrives before Easter.


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## my little penguin (Feb 28, 2013)

Hugs
So btdt on pred and EEN helping.
It does help but sometimes its not enough or needs more time.
At least for DS it was.


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## Farmwife (Feb 28, 2013)

MLP- what in Sam Hill does btdt.:ywow:
Ya know texing is killing the English language.:ybiggrin:


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## Tesscorm (Feb 28, 2013)

Aww, I'm so sorry 

I hope the GI has some answers for you...  I have no idea what to suggest???  I suppose even with EEN and Pred, recovery isn't a straight upward trip...  I hope it's just a blip but I would think after all this time on EEN you'd be seeing consistent improvement! 

What do you mean her tube was filled with blood?  That doesn't make sense to me.  If she was 'extracting' from the tube, the fluid that usually comes out is stomach fluid...  that would imply that the blood was in her stomach.  If the nurse had just put in the tube, the hole at the end of the tube is so small, I can't imagine much blood could have gotten in there just from being inserted through her sinuses...  I think it is more likely when she extracted, she extracted stomach fluid which included blood.  MLP - help me out here... do you agree??

I know nothing about Eosinophilic Disease or Eosinophilic Colitis so I'm not sure how they would affect the symptoms you're describing.

One other thing, the nurse...  is she trained in IBD?  If not, remember she has only overall nursing training without a specialty in IBD - I know our home nurse knows only the very basics about crohns.   She checks that Stephen's feeling well, doesn't look pale, was inserting the tube correctly, etc. but when I've asked her specific questions about his TI, or narrowing or impact of remicade on inflammation, etc., she just doesn't know...

I hope her feeling badly is just a fluke!!! :ghug:


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## Farmwife (Feb 28, 2013)

Thanks Tess. The nurse thought the blood in her stomach drained from her sinuses when she put the tube in. No she's not an IBD nurse. She did check 3 times her stomach content before she left to make sure their was no blood in it. I've also checked today. BUT the night before the nurse came over Grace had abdominal pains. So I wondered about it. She's on a PPI of over a week. I was hoping it would be working but the pains she's having today came from her belly button area.


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## my little penguin (Feb 28, 2013)

Btdt
Been there done that
I am on my phone so ... 

As far as blood I would think the same thing stomach fluid mixed with blood .
Unless there was blood from her nose on the outside of the tube


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## Farmwife (Feb 28, 2013)

No, the tube had been out for 5 days. So this was a new tube. She did have a cold but was over it when the tube was put in.


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## Tesscorm (Feb 28, 2013)

Does make sense that the blood could have gotten into her stomach during the insertion, I think.  Nosebleeds do cause a lot of blood...  I would have thought, though, if the tube caused her sinuses to bleed, some of it would have come out her nose BUT if the bleeding was further back/down, perhaps it just drained downwards and not outwards.  My friend's daughter used the tube (left it in) for a few weeks, it irritated her nose and caused it to bleed but it bled outwards... but, again, could depend on where the irritation happens in her sinuses.  I would keep an eye on it but if you're checking her stomach contents regularly, you would see it...  

What colour was the last tube you removed?  You've mentioned before that the tube was turning black and I wondered if it was blood???


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## Jmrogers4 (Feb 28, 2013)

Sorry she is feeling poor again.  No answers for you just lots of support and prayers


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## Sascot (Mar 1, 2013)

So sorry to hear this!!  Sending lots of hugs and hopes they manage to find something that will really help Grace soon!


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## Momto2girls (Mar 1, 2013)

I'm so sorry. Gosh this sounds so hard and scary. I sure hope they find what works for her and soon!!


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## dannysmom (Mar 1, 2013)

Thanks for the update ... I do hope things improve for Grace!!!


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## polly13 (Mar 1, 2013)

Oh farm wife am so sorry to read your update, it's like one step forward and 2 steps back all the time with our kids.  Hope she is feeling better today


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## izzi'smom (Mar 1, 2013)

SEnding love and wishing Grace is feeling better quickly!


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## Jmrogers4 (Mar 1, 2013)

Not to hijack the thread but that is a fabulous picture of Izzi!


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## Momto2girls (Mar 1, 2013)

Yes, DARLING photo -- are you the photog? I love photography!!


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## Farmwife (Mar 1, 2013)

GI upped her pred to 20 for two more weeks.
We have an appointment with her GP on Tuesday. We will be talking about LDN and other ideas. 
This is nuts. I'm still upset about my talk with the GI.
 I need to calm down first before typing.

:rosette1:Yes Angie. Your both beautiful. Just know my girl looks nothing like me. That's a good thing!:ybiggrin:


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## izzi'smom (Mar 1, 2013)

Ahhh, FW, I'm sorry. Love to hate pred. Wishing Grace well, the sweet girl. :heart:
TY all. I didn't take the pics...I hire them done as it is the only opportunity for me to get in the photos as a single mom lol.


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## my little penguin (Mar 1, 2013)

Hugs...
Hope the pred starts to work


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## CarolinAlaska (Mar 1, 2013)

I'm sorry Grace is doing poorly.  The poor dear.  I hope you get some time to snuggle and love on her and just do nothing this weekend but pamper yourselves.


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## Crohn's Mom (Mar 2, 2013)

Hang in there FW , it WILL get better ! :hug:


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## Farmwife (Mar 2, 2013)

Thanks everyone.

Grace had her higher dose and within one hour she was jumping off the bed and chasing her brother. My poor son doesn't know what to think. One days he has to be quiet because she's sick and the next day she chasing him and yelling I want my wand back (which he was using as a play hammer).

We went to the mall and she made it through half way before daddy had to pick her up.

So, I'm glad it's working that quick but my prayer is it will put her into remission.

MLP have you heard of the six food elimination diet. That's one of the things the GI said she will be doing. I'll go on KFA and check it out also.


So everyone have a good week-end. I hope my Sunday will be queit. I'll check in soon.:hug:


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## my little penguin (Mar 2, 2013)

:ybatty:
Six food elimination diet is standard and really top eight free
No
1.) milk
2.) eggs
3.) wheat
4.) soy ( check on oil and lecithin )
5.) peanuts and tree nuts ( really two but they combine as one)
6.) shellfish and fish ( again two but see above)

Enjoy LIfe foods will be an easy go to for you they are top eight free 
http://www.enjoylifefoods.com/mobile/

They are pricey though but bring four a box of cereal bars or bagels should las a while 

Pm me if you want any of the go to foods we used for DS 
We were free of many things over the years .

Are you avoiding her igE positives as well?


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## Niks (Mar 2, 2013)

Sounds like you've had a rough few days....  Glad Grace is feeling a little better with the higher Pred, hope she continues this way!

Definitely hoping for a lovely peaceful Sunday xx

:ghug:


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## CarolinAlaska (Mar 2, 2013)

Sounds challenging to do the elimination diet, but I'm sure you're willing to do anything to get your daughter's health back.  I'm glad the pred is kicking in.  I'm hoping and praying for remission for her too.  Have a sweet, spring Sunday!


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## AZMOM (Mar 3, 2013)

MLP & FW - We are going to go the elimination route with EoE boy however, GI suggested we do a food allergy patch test to try and narrow things down.  Has Grace's GI mentioned that?  

Now........my son is TOTALLY different in that he isn't as ill as Grace.  Just wondering if you were presented that option.  

J.


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## my little penguin (Mar 3, 2013)

Typically since Grace was on EEN and pred after 6-8 weeks Gi would scope and determine the number of EOs.


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## Jmrogers4 (Mar 4, 2013)

FW - Thinking of you and Grace, hope she is having a good day.


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## Farmwife (Mar 4, 2013)

Update:

Tomorrow is the day for the GP visit. 
Lots to talk about.

Grace has slept though both nights. YA!:dance:
Her appetite has returned and she drank 4 juice boxes in her own. YA!!!!
:dance:

BUT.....:voodoo:
Her knee pains were so bad last night at church, she sat and asked to be picked up.
I wonder if she does has some type of arthritis or something else going on? 
I haven't read where this is normal for EGID ( eos disease).
_*:eek2:Wouldn't pred have helped the knee and joint pains by now?*_


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## Niks (Mar 4, 2013)

Good luck tomorrow!!

x


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## Tesscorm (Mar 4, 2013)

Hope all goes well and you get answers to all your questions!  :ghug:


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## Momto2girls (Mar 4, 2013)

Yes good luck tomorrow!!


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## my little penguin (Mar 4, 2013)

Good luck in the am
Have you called the Rheumo at all to update on the continued joint pain??


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## CarolinAlaska (Mar 4, 2013)

Yea for drinking the juice boxes... every little bit of progress is always encouraging.  I hope the GI doesn't throw you another change in diagnosis!


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## izzi'smom (Mar 5, 2013)

Sending you wishes for as good visit  today!!


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## Sascot (Mar 5, 2013)

Hope the GP visit goes well!  Not sure about the joints, I would have thought the pred would help.  Maybe it's being "used up" sorting the tummy issues?


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## Farmwife (Mar 5, 2013)

Meant with new GP for Grace.
She think a transfer needs to happen.
 She said she will call the GI at Devos and
 explain why and get the transfer moving along. 
I'm terrified now. :eek2:
:ybatty:Now is not the time to have a lack of in care for Grace.
 I asked her not to do anything until after the the appointment on the 20th. 
I don't know what's right to do. 
I hate:voodoo: that feeling when you think you made a mistake, ya know.


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## my little penguin (Mar 5, 2013)

Get the ball moving start trust me now is the time
Do not wait .....


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## AZMOM (Mar 5, 2013)

I don't know what the rationale for waiting would be since she's not improving! I think since you trust the GP, follow her advice. 

J.


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## Farmwife (Mar 5, 2013)

Ya, I'm talking to the hubby now about it.


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## Farmwife (Mar 5, 2013)

We're transferring tomorrow. The GP said she would call herself and do it.

I just wish I knew how long it will take? She's on EEN and Pred and still had tummy pains and knee pains today. I still hope the pred will kick in. Does this all makes sense with microscopic damage??


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## jmckinley (Mar 5, 2013)

So sorry Grace is still having so much trouble. I agree, make the move now. No sense waiting...it's been such a long road already.


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## my little penguin (Mar 5, 2013)

Hugs
Hope they get her in soon
With Ibd nothing ever makes sense ..    
At least in my world


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## CarolinAlaska (Mar 5, 2013)

You can't see everything that happens with biopsy results, and those are probably based on the pathologists experience and expert opinion.  No, much doesn't make sense with IBD, but the 20th is a long time to wait when one's daughter is suffering so...

What is Devos?


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## Sascot (Mar 6, 2013)

Hope the transfer goes through quickly!! Sorry we've never used Pred, so can't give any advice with that. Sending lots of healing thoughts!


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## upsetmom (Mar 6, 2013)

Hope they get her in soon.

It's strange how the pred isn't helping much....every time my daughters been on it its worked within a week.


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## Catherine (Mar 6, 2013)

Same here pred works very quick.


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## Farmwife (Mar 6, 2013)

CarolinAlaska said:


> What is Devos?


Devos is the hospital her GI is at.:hug:


Now I'm not saying the pred isn't working at all. I think it is helping but last time it seemed to "ware off". It's to early to say if the higher dose will do the same thing. All I know is her leg pain is staying and she had abdominal pains yesterday. Still she's a bit better. I guess the week-end will tell. 
Grace's GP gave me some supplement for her to help her body. Their totally allergy free. Well except one has shellfish but that's not a trigger for Grace so far.

Now for the BIG news........

:dance:Grace grew a half an inch, :dance:
:dance:She had another good night. She is still drinking her juice boxes.:dance:


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## Catherine (Mar 6, 2013)

Get what you saying but don't want to have keep upping the pred.  I think the gp wants the 2nd opinion before a decision has to be made on the pred.

Great news about the inch.


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## my little penguin (Mar 6, 2013)

Be careful with supplements - she should NOT be on any
Supplements unless her Gi has approved period.
Only pred eo28 splash and water 
You have no way of knowing if shellfish is a trigger unless you have scoped while on it for a food trial .
Not mention the fact you current Gi wanted her formula only and then top 6 free which includes shellfish.

Not to be tough but the waters are already muddied enough until you switch to a new Gi you need to follow the current gi's recommendations about food this includes all drugs and supplements .

As far as microscopic - your Gi only took 6 samples so you have no way of know.
She has had no imaging done .
DS had over 18 samples taken. His was microscopic and still had issues while on pred .
Remicade was the only thing that eventually helped .

I know you are doing your best 
Good luck


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## Momto2girls (Mar 6, 2013)

So you are getting a new GI? I hope that helps!! Poor thing! Did you ever have the MRE? I hope the GI will do that b/c I keep hearing everyone here say it is the only way to know what's going on in the small intestines, and that may very well be where all of the problems are? I agree with not taking the supplement. Gracie has a severe tree nut allergy & egg allergy, and has never tested pos. to shellfish but our allergist still insists she doesn't eat shellfish. 

I do not think microscopic necessarily means it isn't bad, I thought it just meant that she's small so they need a microscope to see the damage. I think microscopic in an adult is different than in a child.

So awesome about an whole inch!! Amazing!! Thinking of you guys -- hang in there, mama!


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## Farmwife (Mar 6, 2013)

Yes, as far as I know it will be a new GI. She (GP) also will get her into the EGID program or at least they will review her case and see if it is EGID's.


Is a side effect of pred leg pains????? Have any of your children had this? The GI never said it could be.

Off for the day. It's beautiful and sunny here. It almost makes me think spring is coming. I can't wait.


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## Sascot (Mar 6, 2013)

That's great that Grace is doing a bit better and managing her juice boxes.  I seem to remember reading a post a while ago with someone getting leg pains from pred.


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## Farmwife (Mar 7, 2013)

Dare I say it....................

I think she's turned the corner.

She seems better, she's hungry, her pains have subsided a bit, she's sleeping all night long.

:dance:One thing I keep forgetting to add is she isn't having pee-pee accidents.
If you remember she would have accidents all over and each time she pee-peed it was a shock to her. I told many docs about this but they just blew me off. Now she has complete control and even has gotten up at night to go. YA!!!! See we know our kids.:dance:

Off for a few days. I should be hearing from the GP today about the transfer.


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## Tink572 (Mar 7, 2013)

Woohoo!!  So happy for Grace!!


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## Momto2girls (Mar 7, 2013)

Wow have we talked about how Gracie has potty accidents too? Hers are from bladder spasms caused by the pressure of her constipated colon. She has had two this week. And yes she still needs pull ups at night. Anyway soooo glad you are seeing improvement. Hooray!!


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## dannysmom (Mar 7, 2013)

So happy to hear she was feeling a bit better. I hope it continues and good luck with the transfer. I understand how this can be so overwelming with different opinions, etc. Hugs!


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## Tesscorm (Mar 7, 2013)

Glad to hear she's doing better! :banana:  I hope it just keeps getting better and better!!!


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## happy (Mar 7, 2013)

Farmwife,
When I was very symptomatic, I developed some mild urinary incontinence--I even did the intake visit with the specialist's nurse to see what could be done about it--this was during the seven months that I waited to see the GI. Once I went in to remission--it stopped. I think that the inflammation can cause extra pressure on the bladder which caused the incontinence.

I would track this symptom, because it may be a marker for her as to how severe the inflammation is.


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## Farmwife (Mar 7, 2013)

Thanks happy. I always knew it but those docs wouldn't listen. I'll start keeping track when it happens (which I hope it won't).

:angry-banghead: First road block. Stupid insurance.:voodoo:

I'm calling Devos tomorrow and asking to get an appointment next week. It's a long shot since her apt. is the 20th but I'll try. I do think the GI at Devos will be OK over seeing the transfer. I mean she's not normal and Cincinnati specializes in this. Even if they say wait and see at least we know they all agree.:hug:


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## kimmidwife (Mar 7, 2013)

Ugh insurances! They just don't get it. These jerks sitting in their offices making these life decisions which they probably know very little about. It is not right!


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## CarolinAlaska (Mar 7, 2013)

So glad to read that Grace is starting to get better!


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## Farmwife (Mar 8, 2013)

:dance::dance:Grace can EAT!!!!!!!:dance::dance:

:dance::dance:Well only 10% which = about 150 cals, but hey...I'll take it.:dance:

Now she can't have:
dairy, :voodoo:wheat, :voodoo:eggs, :voodoo:nut, shell fish,:voodoo: corn, :voodoo:soy or :voodoo: beef.

I will be starting with BANANAS! YA! I so happy about bananas. :dance:


Ok, now I'm really off for awhile. I just had to share the news.:hug:


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## happy (Mar 8, 2013)

Yay!! Go slow--I mean slower than you think that slow should be. Good luck!


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## Jmrogers4 (Mar 8, 2013)

MMMMM Banana! They will be the best tasting bananas ever.  And totally appropriate on the dancing banana.  I think I'll have to add a few myself
:dance::dance::dance:


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## Mylittlesunshine (Mar 8, 2013)

That's greAt news farmwife 
How is grace doing?
Hugs from me and Lucy x


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## my little penguin (Mar 8, 2013)

Not to pop bubbles but why is your Gi not scoping to determine if she "cleared"' EOS on the formula only + pred???
Especially since she is still having symptoms .
How is he going to determine what her EOS triggers are if you don't know how bad she was ( number of EOS ) before starting food?
You won't even know if she can clear on top eight free since she may just need pred longer etc.....

I know you are happy about the food but without a second scope she could just have to go back to all formula again when she might not need to because there was no scope now .

I just don't want your family or her to have to through any extra stuff kwim.

Good luck with the bananas .

Banana chips if you have a dehydrator.


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## Farmwife (Mar 9, 2013)

Grace is doing a lot better. 
The joints are still a bother but do seem better.
She just hit the 40lb mark. 
She's even kind of chunchy but chunky at her at is just soooo cute. 
The GP wants her weight on the high side just in case she hits a rough patch she has a little to lose.
 Sounds good to me. We also know this is some pred weight.
 As she steps down we'll see if she loses.

:dance:She ate the banana (small and very ripe) and I swear that girl said yumm with EVER little bite. So cute.:hug:

:yoshijumpjoy:So as you all can tell I am one HAPPY FARMWIFE!:dance: Today we're going to go look for Grace's first bike. Spring is coming and all I want to do is think SPRING!:dance:
 Also, next month is my son's b-day. He'll be 6 and wants a DS. I'll be scoping out the price and those also.
:shifty-t:So If you hear a story about a women passing out:yfaint: in a store in front of the DS players well.................

Grace has gotten the "moon face". She has such a round face any way, she looks like the world's cutest chipmunk.:rof:

Oh, to MLP and all your qeustions..... Have a good week-end.


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## AZMOM (Mar 9, 2013)

So glad she feels better. Like MLP though, Im surprised tere wasn't a second scope for the eosiniophilic disease. No other way to measure eosinophils...... Trust me, I've asked!

Hope things continue to go well. 

J.


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## Farmwife (Mar 9, 2013)

The GI feels scoping isn't necessary right now. He wants to start her on 6mp but we're not until we get a second opinion. He (GI) says their still a chance the eos are from IBD. However, he admits that given her symptoms since birth, that it matches EGID. Sadly I agree. However, I want more answers before we start meds. I'm only adding foods that I know are "safe". So bananas are pretty much it. All other foods, I have no idea.
I think it would be wise to get more answers from the GI and a second opinion.


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## izzi'smom (Mar 9, 2013)

Just catching up...boy, have you girls been through it!! (((HUGS)))
Hoping the insurance hurdle is easily overcome. 
FWIW, we didn't have any pain associated with Pred, but it lost effectiveness over time (it only worked for less than a year for us). 
Sending love...


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## Niks (Mar 9, 2013)

Wow, sounds like you guys have had a bit of a time of it too!!  

Glad you are getting second opinions though and really glad about the bananas!  :dance:

Bless her I bet she was so excited.

Good luck!   xx  :hug:


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## CarolinAlaska (Mar 9, 2013)

So glad Miss Grace got to eat bananas!  My dd doesn't like bananas, but after 4.5 weeks of no food, bananas might be welcome...


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## Crohn's Mom (Mar 9, 2013)

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

(couldn't help myself :lol: )


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## jmckinley (Mar 10, 2013)

Yay for bananas...and feeling better..and sleeping thru the night!!!! Such great news!

:yoshijumpjoy::yoshijumpjoy:


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## Sascot (Mar 10, 2013)

Glad things are a bit better!  You know once you start with the DS it's a slippery slope to all things electronic :lol:.  Now the worst thing about going away these days is remembering all the different chargers! :ycool:


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## Farmwife (Mar 10, 2013)

:angry-banghead:Bad, bad, bad
:angry-banghead:Moving backward, not forward

 Very bad pains going poo
 Bad acid reflux during the pushing (flushing red)
Have to pull the bananas

:voodoo:Calling Doctor tomorrow.


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## Catherine (Mar 10, 2013)

Poor baby, hope she improves quickly.


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## CarolinAlaska (Mar 10, 2013)

I'm sorry that did not work out.  Stupid bananas!  She'll be getting her new ng tube tomorrow, won't she.  I hope that goes well.  <<<hugs>>>  

PS What does the doc say about her black and bloody NG tubes?


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## Maree. (Mar 11, 2013)

I've been reading the diet forums a lot and the most striking thing I notice is how individual trigger foods are.  Most people seem to list bananas as a food they find easy to eat, so seems like a logical one to try first to me too.

But there is an old thread I turned up with a search started by someone who has severe reactions to bananas and several other people mention they have problems with them too, so Grace isn't alone in reacting to them. Some people say they can eat them cooked but not raw due to starch levels in raw ones, (I'm not suggesting you try them again soon but be might keeping in mind for future) http://www.crohnsforum.com/showthread.php?t=2598

I hope Grace recovers quickly from her banana experience.


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## Farmwife (Mar 11, 2013)

Thanks Maree, very interesting.:hug:

The nutrientist at the hospital has said stop the bananas and is asking the GI if Grace should stop food intro for awhile. 

Here's my question of the day......
_*What causes acid reflux with a bowel movement?*_

During the very painful bowel movement, Grace got an attack of acid reflux (I assume that is what it was). She turned bright red and start gasping for air. I gave her a drink and calmed her (and myself) down. Through out the couple hours she had the attack 3-4 times. I finally gave her a suppository when we got home and she went poo. Then no more attacks. Also her stool still had undigested bananas. Crazy, I made sure the bananas were very ripe and she chewed them very well.
Oh and happy remember how I said Grace has had no accidents. We last night she pee-pee again in the bed. I hope she's not going to flare again.


:dance:The good news is Grace is having a good morning. Always look on the bright side!:kiss:


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## Clash (Mar 11, 2013)

What makes you think it was acid reflux and not a reaction due to the EGID or EOE or whatever the other dx is? What did she say to make you think acid reflux? I think bananas, which are high in potassium neutralize the acidity in the stomach which makes it more alkaline.

It seems it is even a natural treatment for acid reflux, queen gothel mentioned something about it. May want ask her.


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## Momto2girls (Mar 11, 2013)

I am so not informad on the EoE, but I know bananas are constipating. So for someone who is proned to constipation I would think it might not be a good food to start with? It'll really bind her up, which is what it sounds like was happening. Hugs!!


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## happy (Mar 11, 2013)

Hi Farmwife, I am thinking the same as Momto2girls, that what you are describing is Grace having difficult BM's due to being constipated. 

I do not have Grace's condition, but I do have the experience of trying to achieve healing with the Enteral Nutrition and also the return to eating. 

These are my thoughts based on my own experience. While on the formula, it is tempting to return to eating too soon. However, I learned that I needed to wait two to three weeks after beginning to feel better to make sure that I was in solid remission before attempting to eat. Otherwise, I had to go through the whole process again after eating for only one or two days. 

The bowel has been resting, so when solid food is introduced, constipation can be expected. Some discomfort and even pain as the bowel gets used to being stretched from semi-solid food rather than liquid, can also be expected. Using Miralax or something similar that has already been tested before adding food is essential during this time. 

It is not unusual to have partially digested food in the beginning of returning to eat. I found that thinking like a scientist while treating myself like a baby learning to eat was very helpful. First, I made sure that the formula had eliminated all of my symptoms for several weeks before eating. Then I tested the Miralax. Then I started with a tablespoon of plain white rice cooked for many hours in lots of water. I would have two or three tablespoons over the course of the day. If that went Ok, the next day I would have it more often. After four days, if it went Ok then I had another new food (poached chicken). If I developed any symptoms or pain  other than discomfort, I stopped testing the new food and kept eating the foods that tested safely. Several times I had to return to the formula excusively for a few days.

I also learned that the cause-effect timeline varied with the food that I was eating. Some foods I had issues within a few hours, others up two days and still others, not for four to five days.

For Grace, I think that making sure that she is truly in remission before starting to add food is important. And making sure that she has something to prevent constipation.

Not being able to eat is probably harder on the rest of you than Grace. If she is feeling better not eating, then patience while you wait for some of her other appointments might be best. She will tolerate having the formula because it doesn't hurt to eat then. :hug:


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## Farmwife (Mar 11, 2013)

Thanks happy. Grace has been on Miralax for a long time. Also she is on Senokot when she goes more than two day without a BM.
I know this sounds horrible but Grace not eating is well....kind of nice. She was so hard to feed before that's it's nice to hand her a juice box. Until the pred she wasn't even asking for food. The pred of course has given her the munchies. If she's able to step off pred this Friday, we'll see if the hungrier subsides.

The hard part for me is the roller coaster ride. One day I think great remission is almost here and then the next day Grace struggles but I do know remission will come.:hug:

As far as bananas and constipation, I took her off ALL bananas for two months about a year ago. No change in her bowel habit what so ever. Now that could have changed. So no more bananas for awhile.

The GI office called and it's up to us:ybatty:
Keep her on EN only and or add foods (-minus the top 8 + beef)
Well I will not do the elimination diet until the second opinion.
However, applesauce seems to be the next best thing....I think.
BUT I will not be doing applesauce for a few days.

Today Grace is doing wonderfully! The snow is melting and I am off to cook.

Thanks one and all.


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## happy (Mar 11, 2013)

Good luck with your decision.


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## my little penguin (Mar 11, 2013)

Good luck
Applesauce is also constipating - just an FYI
If she was truly flaring ( egid wise) from banana typically 
Kids wait a few weeks at baseline ( I think ??)
Before trailing the next food .
Your second opinion might be able to give you accurate guidance on this .

Is she weaning from pred on Friday ?


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## Farmwife (Mar 11, 2013)

:voodoo:Apple sauce is constipating?????? WOW

As far as the weaning off pred...I don't know?
I pray so. We'll see by friday if she stays better.


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## Momto2girls (Mar 11, 2013)

Can you start with rice? Since it worked for Happy? I know Gracie eats rice for just about every meal these days. Really.


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## Farmwife (Mar 11, 2013)

I'm not against rice. Make a big bowel and dish a little out through out the week.
See how she takes it. Thanks, good idea.


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## Momto2girls (Mar 11, 2013)

Now I don't know about waiting like MLP said. But, I'll be curious to hear. I am not kidding when I said lunch and dinner is pretty much rice (and she likes a little shredded cheese on it) every. single. day.


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## Tesscorm (Mar 11, 2013)

Gosh, I hate to complicate things for you FW! 

You said make a big bowl of rice and give it to her over a few days...  I don't remember the specifics but have read that there is an issue with reheated rice, maybe something with the starch???  Rice is one of Stephen's favourites but I don't give him leftover rice (unless it's only leftovers from a couple hours earlier).

There's a brand of instant rice (forget the name but it's a common one :ybatty) that comes in individual packages (and, before you start thinking all us city girls use instant rice, this is one of the few things I use that is INSTANT!  :ack.  It's more expensive than a bag of rice :ymad:, but I have found it to be one of the most convenient prepared foods EVER!  I don't use it for family meals but, if either of the kids comes home late, etc. and wants a 'meal', they microwave one package and add leftover chicken, etc. to it.  (or, in the case of my daughter, a can of sardines!   :lol

I don't know if there is any else in the ingredients that would be bad for Grace but, if you're going to try to introduce rice, just a bit at a time, using these might be easier.  They sell some that are flavoured (ie asian rice), but I've only ever bought the plain white or brown rice.

:hug:


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## QueenGothel (Mar 11, 2013)

Farmwife said:


> :voodoo:Apple sauce is constipating?????? WOW
> 
> As far as the weaning off pred...I don't know?
> I pray so. We'll see by friday if she stays better.


Applesauce has a lot of pectin in it.  Pectin can be used to combat both diarrhea and constipation without significant side effects, as long as you take it in the correct quantities.  For constipation a large amount of water must go in as well for Diarrhea very little water.  So it depends. We stay away from apples bc for some reason Rowan just doesn't digest them easily. It is on the recommended to thicken up output list when she had an ileostomy.  I would avoid it as well. . Rice is considered constipating as well unless you choose brown rice which I think tastes like dirt.


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## QueenGothel (Mar 11, 2013)

If I had to pick a fruit I would choose berries, bc they are high in antioxidants and are easily digested. strawberries and blueberries but they will change the poo color so be forewarned. Idk in regards to her reaction factor but berries never ever constipated Rowan and they are always digested completely.  For a j-poucher that is unheard of for a fruit!  Is she allergic to berries?


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## Farmwife (Mar 11, 2013)

UMMMMMM, I usually use organic jasmine rice. No microwave Tess.
 Soooooooo I'll have to make some around dinner time each night, eh. 
QueenGothel blueberries????? Ya, she loves them.:hug:


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## QueenGothel (Mar 11, 2013)

Good luck!  Rice always was very binding for Rowan.  Really was constipating.  IDK?!


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## dannysmom (Mar 11, 2013)

I agree with Happy's advice ... rice and just a few tablespoons at a time to avoid too much pain when introducing food and ato void the constipating effect of rice.  We tried starting an elimination diet for Danny with just rice (note: he was not on EN first) .... and we made a big mistake by letting him eat a bowl of rice for each meal. For a kid with constant diarrhea, he was backed up and had a lot more pain. He will not go near rice now.

Good luck!!


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## Sascot (Mar 11, 2013)

Wow, the diet advice sounds very complicated.  Telling you it's up to you to decide is a bit of a cop out!  Do they have a dietician/nutrionist that could give you some advice? The only things I remember about reintroducing food are plain rice, plain chicken or fish, custard/jelly


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## Farmwife (Mar 12, 2013)

JUICE!
Why not JUICE to start with. I'm talking about a half a cup or so a day.
That way it hopefully won't back her up and I can watch for an allergic response.
If she can go awhile with no symptoms, then I can add the food slowly.
I'm feeling rather smart this morning.
:voodoo:All bubble poppers stay away!
Just kidding...all bubble poppers welcome.:kiss:

:hug:


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## Maree. (Mar 12, 2013)

Purely personal opinion here but I'd be cautious about juice, remember it's concentrated fruit.  I remember when I introduced foods when my boys as littlies they got cooked fruit first and then only months later diluted juice (not sure if that's still theway it's done).

I think the rice suggestion sounds good as a first food.


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## happy (Mar 12, 2013)

Farmwife, on my program of reintroduction, juice was one of the later foods to introduce. I can'r remember if I have mentioned these books to you before: *Inflammatory Bowel Disease: The Essential Guide to Controlling Crohn's Disease, Colitis and Other IBDs* by Professor John Hunter and *Beat Crohn's! Getting to remission with Enteral Nutrition* by Margaret A. Oppenheimer. 

The second book (despite it's cartoon cover) has well-researched and detailed info about different types of EEN and ways to return to eating. The first one describes a treatment program of EEN used for IBD at Addenbrooke's Hospital in the U.K. The book describes the process of returning to eating using a full elimination diet (they also describe one for a partial elimination diet--don't use that one) that they have studied. Their theory is that EEN brings on remission by changing the flora of the bowel, so when one returns to eating, keeping the flora in the state that brought on remission is what helps. They have researched many foods that cause problems for people with IBD and came up with the diet to get a person back to eating in the fastest, most successful way.

This worked for me, however, it has been a very long process, and one that I have had to be fully committed to for over a year and a half. I still have not fully tested all foods as the process has been much slower for me than in the book. 

Unfortunately, raw fruits and vegetables are high in fiber and one of the later foods in the program, so I wouldn't start Grace with juice--as well, it is also usually very acidic and can cause reflux when first starting to eat again.

I know that it may seem that all we do is to tell you what not to do, but Grace needs a well thought out plan for a return to eating, so that she doesn't have to do it all over again. It si very discouraging when that happens--I know from experience.

You are looking for a well-balanced diet for her in the end, with foods that she is most likely to tolerate. She needs a grain, a protein, a fat, and a milk and a cooked fruit/vegetable to start. Watery Rice, chicken, olive or canola oil and probably a rice milk to start. Then well cooked carrots and/or pears. 

This info is from the IBD perspective. You also have to consider her other condition.

There is more info about this process in the My Story Forum http://www.crohnsforum.com/showthread.php?t=31028
:hug:


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## happy (Mar 12, 2013)

Oh, and here is a link to a website with some of this info on it: http://crohns.org.uk/crohns_disease/nutritional_therapy


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## Farmwife (Mar 12, 2013)

Thanks happy and Maree and everyone.


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## Henrietta78 (Mar 12, 2013)

Can you try broth? FYI, our GI said to stay away from berries etc. because of the small seeds that can irritate intestinal lining.  I have some handouts for a 4-stage IBD diet (different levels of appropriate foods based on level of flares) that we got at the hospital; if I could figure out how to attach them from a scanned document I would be happy to share...


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## my little penguin (Mar 12, 2013)

here isthe thing - if you trial food
you need to trial only a single ingredient thing at a time.
so if its rice then nothing but trice plain - not extra anything added to flavor or otherwise for at least three weeks.
This is not like typical re-intro to food that any other IBD kid has - She had EGE-
Food trials need to be simple- and since she just failed bananas- you need to wait until your GI says she is back at baseline to try again.

Simple food - means if you want chicken - then nothing but chicken boiled in water for chicken broth, boiled chicken, baked chicken etc....

if you are going just back to non top 8 foods - then that opens things up- but gets tricky figuring out fails fast.

( again not a doc just a mom- so please ask your gi for advice)


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## Farmwife (Mar 12, 2013)

MLP are you saying that for me or them. Because I know that!:tongue::hug:

OK, no foods.
Just had another brain storm,
I want her to step down pred,
So starting foods that might cause more pains and which might keep her on pred longer is not anything I wish to do.

My goal is no foods, just EEN.
Friday, Lord willing, start the step off pred.

Update
Grace's joints are so sore she no longer can walk up the stair. Sitting on a heating pad not.


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## Farmwife (Mar 12, 2013)

Henrietta78 said:


> I have some handouts for a 4-stage IBD diet (different levels of appropriate foods based on level of flares) that we got at the hospital; if I could figure out how to attach them from a scanned document I would be happy to share...


You know Henrietta78,:hug: that sound interesting. I'll look and see if we have a thread that we can put that into. I think it's neat to compare how docs do thing. Plus maybe it will help people with options.

I'll get back to you on that.


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## my little penguin (Mar 12, 2013)

:tongue: Others

trying to save you - I KNOW you KNOW EVERYTHING:rof:


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## Farmwife (Mar 12, 2013)

my little penguin said:


> :tongue: Others
> 
> trying to save you - I KNOW you KNOW EVERYTHING:rof:




Some times our smileys say it all.




:tongue:


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## Farmwife (Mar 12, 2013)

Oh, MLP since I know everything. I know you must have some research on IBD and EGID's together. Could you please let me know.


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## Niks (Mar 12, 2013)

Farmwife said:


> Update
> Grace's joints are so sore she no longer can walk up the stair. Sitting on a heating pad not.


Poor little thing :eek2:

Hope that eases off soon.

Good luck with her food trialling, it sounds so complicated!!  :frown:

((((hugs))))

:ghug:


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## Momto2girls (Mar 12, 2013)

Farmwife said:


> Oh, MLP since I know everything. I know you must have some research on IBD and EGID's together. Could you please let me know.


Uh oh -- MLP has left for the medical library and we won't see her again until 2028...

:eek2:


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## QueenGothel (Mar 13, 2013)

Is it a normal symptom for EGID to have the constipation?  I just worry about that for her always.  The nightmares of prolapse haunts me from my own experiences.  That was the only reason I was concerned about the rice bc I know her constipation was extreme constipation for so long.


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## Sascot (Mar 13, 2013)

Sorry to hear about Grace's joints!  At the risk of sounding more blonde than usual, has Grace been referred to a Rheumi?


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## Farmwife (Mar 15, 2013)

Sascot she does see a rheumy. He felt nothing in the way of damage. Thank GOD. She will be seen by him every 6 months.

A great 2 days for Grace NO PAINS! YA! It's like a switch was flipped and she's fine.

Now for the GREAT NEWS!

WE CAN START THE TAPPER OF PRED! YA! So happy. 

The only problem on the horizon is.......

Her BM's coming multiple times a day and are lose, seems to have a lot of gas while pushing and even seems explosive at times.

Do your children get this?


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## jmckinley (Mar 19, 2013)

Yay for coming down on the pred!!

Are you adding food back to her diet? Maybe her tummy is sensitive to the additions. We have a gas problem when he eats something like beef, too much sugar. That's usually followed by a few bad stools. But once he gets that food out of his system, it's all okay.


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## Farmwife (Mar 20, 2013)

Not a lot of time. Sorry.

Heading down state to see GI
Grace not drinking much any more.:confused2:
Lost weight and seems tired.:confused2:
At least the pains seem better.
Nurse said it was ulcers in the mouth but they've started to heal. YA!

I'll up-date soon. I hope!:yfaint:

HUGS:ghug:


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## Mylittlesunshine (Mar 20, 2013)

Hope it goes ok x hugs to u both


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## Tesscorm (Mar 20, 2013)

Good luck at the apptmt.  Hope you get some answers re the ulcers and some reasons why she's still having problems!

Did you ever find out why her ng tube was discoloured/black?

Waiting for your update! :ghug:


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## Niks (Mar 20, 2013)

Good luck with appointment, hope you get some answeres and solutions for your gorgeous girl xxx

:ghug:


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## Jmrogers4 (Mar 20, 2013)

Good Luck thinking of you


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## Farmwife (Mar 20, 2013)

Good Gi appointment.

I think we finally figured out what we wanted for her and what questions to ask.
I think the GI understands we're educated (some :yrolleyes:what) on this.
We seem to have hit it off better this time.

Here's the plan...THAT I'M HAPPY WITH!

Continue NG feeds and nutritional therapy
Continue steroid weaning
If nutritional therapy continues to help will consider G tube
If steroid weaning fails, :confused2:will consider anti-inflammatory meds and budesonide
Keep stool soft 
Intro to food (One every 3 weeks) start with purees aka organic baby food.

We talked in depth about EGIDS.  We're going to try one food at a time. Will discuss and change if multiple foods fails. 

As far as the second opinion in Cinnattia...NO,:ymad: the second insurance told me IF a hospital in MI can treat it (EGID) we have to stay in Michigan.

Is it IBD??????? Well when I asked about WHY did two treatments (EEN and PRED) seemed to fail and or take longer than normal to work ?
He went on about early on-set of crohn's and the possible severity of the disease. He still will not dx her with this until visual damage. Fine! I don't care any more. I real don't. My goal as a mom is to get her better and make sure that our decisions are the right ones. I feel this plan of action for now is the right one. BUT of course we ALL know how fast it can change.:yfaint:

As far as her weight loss...she's coming off pred. The GI said it might have caused the dip.
Her decline of drinking the shakes...virus? She looks like a cold is coming.:yfaint: 
Ulcer....magic mouth wash.:smile:

The good news is, I feel Grace is getting better. The knee pain has stopped for a few days and her belly pain seems a lot better. Hopefully the corner will be turned soon.:ghug:


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## Tesscorm (Mar 20, 2013)

Sounds like you have an informative meeting and were able to discuss lots of issues!  I hope the plan works and you see consistent improvement in Grace (even if there are a few bumps in the road !

:ghug:


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## Niks (Mar 20, 2013)

Definitely sounds like a good meeting!  Good luck, really hope that Grace starts to feel better very soon.

I agree, it doesn't really matter if you have a name for what is wrong, as long as she is improving xxx


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## Mylittlesunshine (Mar 20, 2013)

FW glad the GI meeting went well
Hugs you both x


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## Jmrogers4 (Mar 20, 2013)

Glad the Appt. went well and you have a plan.  I agree don't care what it's called as long as you can make your princess feel better


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## Farmwife (Mar 20, 2013)

Thanks all.

I did find this funny,

On the discharged papers her diagnoses has a big start next to it. I guess he remembered the mix up, eh!:lol2:


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## my little penguin (Mar 20, 2013)

Glad the visit went well
From an egid standpoint
Warning most commercial baby food are contaminated
Even organic
Strongly suggest you purée your own


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## my little penguin (Mar 20, 2013)

Cross contaminAted with milk egg etc....
Since this labeling is voluntary 
Meaning just because it says may contains milk doesn't mean wheat is not present As well


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## Farmwife (Mar 20, 2013)

Thanks mlp, that's good to know. I'm not against doing it myself. I was just trying to save myself the clean up.:yfaint:


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## QueenGothel (Mar 20, 2013)

Oh yes the secondary only covers if it is in-patient doctor to doctor transfer. I learned that when we wanted to transfer to Cinncinati that if we wanted the second opinion they would have to do a transfer for it to be covered out of state.  That stinks though, so does that mean they will let you go to Motts now? Our primary though in network doesn't cover much anyway, CSHC covers the majority of the bills. 

Over all sounded like a good appointment.  Sounds like you have a plan.


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## Farmwife (Mar 20, 2013)

QueenGothel
Ya, hubby and I are happier now. I think we and the GI just needed to get on the same page.
The GI didn't meet all my demands:cool2: but we didn't meet all his.:cool2:
 So their was a compromise on both sides.
:smile:


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## kimmidwife (Mar 20, 2013)

Glad appt went well and you have a plan, that is so important. Hope grace continues to feel better.


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## Farmwife (Mar 22, 2013)

Happy Update

Grace has had a good week and a half. No symptoms, no problem. It's been wonderful. She deserves to be pain free. She did have a bit of joint pain tonight but I'm choosing to ignore it if she can.

One thing I forgot to mention (I will be calling the rheumy) is he wrote and told the GI she does have hypermobility syndrome (double jointed). Now that in it's self is no biggie BUT it might attribute to her on-going joint pains. That makes a little more sense with her leg weakness. What I was thinking is weakness, was really..:yfaint:...being to bendy.:ylol:

I hope y'all have a good week-end. Spring break is upon us, so I will be avoiding town like the plague.:ybatty: Plan on cleaning upstairs. 
My poor son is tired:ymad: of me saying, you'll be moving upstairs soon into your new bedroom. Don't blame him...it's been 6 yrs.:lol2:


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## DustyKat (Mar 23, 2013)

Thanks for the update FW...:ghug: 

Lordy, lordy, lordy...I hope things stay settled for your Princess, she has been through enough already, bless her...:heart: 

Dusty. xxx


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## CarolinAlaska (Mar 25, 2013)

So glad to read the positive update.  My daughter has been hyperflexible most of her life too.


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## Farmwife (Apr 5, 2013)

Last day of pred and I feel like.................................
:yoshijumpjoy::mario2::banana::emot-dance::luigi:


Grace is doing GREAT. No pains, no tears, no sleepless night.
She hasn't even needed a nap for 2 weeks. :yfaintKind of miss that one)


Now we wait:cool2: and see what might happen.:yrolleyes:


:ghug: to everyone.


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## xmdmom (Apr 5, 2013)

Here's hoping she continues to feel great!


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## DustyKat (Apr 7, 2013)

I soooooooo hope all stay settled for your little princess FW, bless her. :heart: 

:goodluck:  Dusty. xxx


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## CarolinAlaska (Apr 8, 2013)

I'm overjoyed to read that FW!


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## polly13 (Apr 8, 2013)

Oh farm wife I am so happy to read your update


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## jmckinley (Apr 8, 2013)

Just read your update...Wowee! So excited that your little princess is doing so well! She is most deserving of some "feel good" time and so are you.


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## Jmrogers4 (Apr 8, 2013)

Playing catch up on posts. That is fantastic news.


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## Farmwife (Apr 8, 2013)

Thanks everyone. It's been a great few weeks. Day 3 off pred.
 She had blood in her poo again.:confused2: Just a little but noticeable. I know it sound horrible BUT I just am going to take a few more days and watch/pretend that all is right with the world. 
Sometime this week her GI wants to order the FC stool test. Also her GP wants labs done. We got Grace the Buzzy Bee (ladybug for her) for her labs. We'll see if it works.

Also we went to the eye specialist has said her eyes are GREAT. No inflammation  and he said come back in 9 months. YA!!!!

Sorry I haven't bee around much. The farm is starting to "spring" to life and the hustle and bustle of farm life has started.:ybatty: Now that Grace is better...we're on the GO all the time. I LOVE MY FARM LIFE! (So much better then city life. Hi crohnsinct, :cool2:I haven't forgotten you)



:ghug:

Hugs to all.


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## Farmwife (Apr 10, 2013)

Mylittlesunshine ben's rn vtfamily CarolinAlaska EthanClark malgrave and everyone else.

:ghug:
A few of us want to put together a support group for g-tubes, n-g tubes, mickey buttons and such. The problem is I need help with names for this group. HELP!

Here's my idea that took way to long to come up with:yfaint:. You can vote on one or come up with your own.

1 The Tube Support Group
2 Tubbies Support Group
3 The Tubbiest Support Group
4 Every Way but the Mouth Support Group (not real serious on this one, it's just funny:ylol
5 At Least it's Doesn't Go in the Other End Support Group ( just funny:lol2


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## CarolinAlaska (Apr 11, 2013)

Farmwife said:


> Mylittlesunshine ben's rn vtfamily CarolinAlaska EthanClark malgrave and everyone else.
> 
> :ghug:
> A few of us want to put together a support group for g-tubes, n-g tubes, mickey buttons and such. The problem is I need help with names for this group. HELP!
> ...


I like the first 3 options above...

How about:
Tubes, lubes and long-thin boobs?  (Just kidding!)
NGs, NJs, MICkeys, Minnies, G-tubes (and so forth) Support Group


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## Malgrave (Apr 11, 2013)

I like number 1 from Farmwife's list and number 2 from Carolin Alaska's list 
I gues these 2 would be most clear for someone who is not so familiar with tubes...


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## Farmwife (Apr 11, 2013)

Ok how about...
Tubes; NG's NJ's, G-Tubes (and so forth)

or

Tube Info Support Group

I was trying to keep it on the short side.


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## Mylittlesunshine (Apr 11, 2013)

All about tubies support group ( not sure) hmmm


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## Farmwife (Apr 11, 2013)

All about Tubes-I like that also:smile:

Ok

_*New Choices*_

1 Tubes; NJ, NG, G and Mickey Button Support Group

2 All about Tubes Support Group

3 Tubbies Support Group

Have to go, one of my kids said oh-oh in the other room! I'm scared!


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## Malgrave (Apr 11, 2013)

Number 1 would be my choice!


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## Tesscorm (Apr 11, 2013)

Just happened to notice... there already is an NG tube support group - maybe you want to 'merge'???

Just passing it along


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## Farmwife (Apr 11, 2013)

We'll I'll be! There is? Thanks Tess

Well maybe a support group for surgically place tubes like G and Mickey Support Group than.
I guess that was my first thought anyway. I'll look it up.

What does everyone else think?


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## Mylittlesunshine (Apr 11, 2013)

Yep tess is right 
There is NG tube support group 
In support section x


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## Farmwife (Apr 11, 2013)

ya, I just pm her but she hasn't been on in awhile.

So do we want a separate group? Or make one in the parents forum?


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## Mylittlesunshine (Apr 11, 2013)

I think it's good idea to have one in parents 
Forum, is that group just for NG tubes?
This is just my opinion . 
What's your thoughts ???


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## Mylittlesunshine (Apr 11, 2013)

I mean seperate group in parent forum


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## Farmwife (Apr 11, 2013)

Ok, YoungLava1405 has just pm me.

He says he says fine with a merger. 
So I guess for now that sounds good to me. IF there is a lot of interest in G-Tubes and Mickey Buttons we can always make another support group then.

All in favor say I..........................

I


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## Mylittlesunshine (Apr 11, 2013)

That sounds fine...... I


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## Mylittlesunshine (Apr 11, 2013)

I'm off now will speak tomorrow night


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## Farmwife (Apr 11, 2013)

We'll wait for your speach.:smile:
Have a good night!:ghug:


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## Crohn's Mom (Apr 13, 2013)

FW when you're talking of "merging" ~ are you going to need a thread from the parents section merged to the support group that already exists ?
Lemme know if you need me to do it.  
You may need to PM me as I haven't been on too much lately.


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## Farmwife (Apr 13, 2013)

Thanks Crohn's Mom I'll pm when I have time. 

 We had a freak ice/snow/rain/slush storm hit our area hard. 
The bad news is...it brought the farm to a stand still. The good news is......I had nothing to do.
 Now farm life is going to pick back up even more.:yrolleyes: Now we have a week to make up for.
 So it was nice to be on here little extra. Back to reality I guess!:ymad:

Update on Grace:
Asthma is real bad. 
She is on feedings (n-g tube) again as she has stooped drinking it by mouth.:confused2:
 I hoping this is a virus and it's not because of coming off pred.
 GI said he wants to wait two weeks.
 The Friday she has a surgeon's appointment (consultation for the g-tube placement). Then I was told one week later she'll be in for the surgery.
 Now that's she not drinking the stuff I feel totally better about doing this.
 The n-g tube is making her sinus bleed. Not good.
So if I can't stop by for a awhile, y'all understand.
 Hugs to everyone and
 I hope your kids stay healthy...well at least happy.....well at least our of the hospital.

:ghug:
Farmwife and little farm girl/Tinker Bell/ Cinderella/ Water Fairy/Grace:yfaint::ylol:


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## CarolinAlaska (Apr 13, 2013)

thanks for the update.  Sorry Grace is back on the tubes.  Do you have a plan for a Mickey so she won't have to keep doing the NG?  Hang in there.


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## my little penguin (Apr 14, 2013)

Does she see a pulmo for her asthma or just gp???
Under controlled asthma can be serious.
Did the doc give you an asthma action plan??
If not ask for one.
We have to call for all flares in case meds need to be adjusted or added .
Sorry to hear about the tube .


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## Farmwife (Apr 14, 2013)

MLP- Grace sees one of the BEST Allergist in the State.
Yes she has an action plan in place.
 We've just never needed to use. 
This is her first real serious flare.:confused2:
I will be calling on Monday to see about upping her meds.
She's on 4 different kinds of asthma meds now.
However, last night my boy came to me with a HIGH fever and a sore throat.
So at least now we know it's being triggered by a virus.
As I type this at 3:49 am, I'm having a hard time with breathing through my nose. GREAT!:yfaint:
We will be taking the kids to the walk in. 
I want to make sure she's not going into pneumonia. 
She has manage to sleep for 6 hours.
:yfaint:Oh.....and she hasn't pooped and was saying her butt hurts.:ybatty:


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## Sascot (Apr 14, 2013)

Been away so missed alot of posts!  Sorry to hear you're all coming down with the cold/cough.  Andrew had alot of trouble with wheezy coughs coming on whenever he got a virus - had a few trips to the out of hours doctor - why do things seem so much worse at night!
Hope things settle down and everyone feels better


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## Farmwife (Apr 14, 2013)

Thanks Sascot,
We've missed having you around. I hope all is going well?


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## Niks (Apr 14, 2013)

MLP - hope that Grace and you are feeling a little better soon, and you managed to get some sleep, sending (((hugs)))  :ghug:


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## my little penguin (Apr 14, 2013)

FW most allergist have on call services for weekend flares.
I would call them now - they will probably call in a med since night time tends to be worse .
Asthma typically does flare with illness and gets out of control if the right combo of meds are not in place. Everyone is different so sometimes it takes a few try's to find that combo .
Good luck


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## Farmwife (Apr 14, 2013)

Update:
MLP calls will be made for sure. THANKS:ghug:

Grace seems happier and has drank 3 juice boxes by mouth already. YA!
Thank God for her n-g tube this past week. She would have never made it with out one.
My son on the other hand is the picture of true misery.:yfaint: Poor kid. At least he eats no mater what.:lol2: Hopefully this virus will pass soon.
Have a good week y'all!


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## Jmrogers4 (Apr 14, 2013)

Sorry both kiddos are sick, hope they feel better soon


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## CarolinAlaska (Apr 15, 2013)

Did you go to walk-in clinic?  What happened with it?  My two youngest have colds - coughs and snotty nose with 8 yo.  I keep hoping Jae doesn't get it!


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## Mylittlesunshine (Apr 15, 2013)

Hi farmwife how are grace and your little boy
Today.


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## Farmwife (Apr 15, 2013)

Grace is better on the virus front.:ghug:
:yrolleyeson't ask about the rest.

Have a good few days y'all. I'll check in when I can. 

Spring has swung back in.:yfaint:


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## AZMOM (Apr 17, 2013)

FW - Is your surgeon's appt this week?  I'm losing track of everyone!

J.


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## Farmwife (Apr 17, 2013)

We meet with him this Friday. We've had a change of plans so the surgery is already scheduled for the 1st of May.:yfaint:

Her n-g tube is just causing to many problems. We had to pull it. 
The surgical nurse said they will get in then.
 So we will try to make her drink all by mouth until 1st.

I took her Fecal Cal stool test in today.
 I just have this bad feeling that the test will show nothing good.:ymad:

Grace's virus and asthma seem to be almost gone. 
:cool2:Intersting... pull the tube and the next day things settled down a bit.


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## Tesscorm (Apr 17, 2013)

I hope she manages to drink the shakes until then! :ghug:  and glad she's a bit better re the virus and asthma!


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## Sascot (Apr 18, 2013)

Wow, 1st of May seems a long time to try get her to drink all the EN, although now her virus is better hopefully she will feel up to it.
I do remember towards the end of the 8 weeks of EN, Andrew was also struggling with the NG tube causing pain/irritation and he was also quite sniffly, etc.  I think having a foreign body in the nose/throat can cause bacteria to build up and cause issues.
Hope your poor boy is also well over his virus too.


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## Farmwife (Apr 18, 2013)

Well tomorrow is the day.:yfaint:
I will be driving all the way down and back.:yrolleyes:
Why do you ask is that such a big deal????????????????
Well the last time I drove out of my home town was ( or at least 60 miles from it)...............let me think.........10yrs.
That's right. :cool2:Why can't I just stay on the farm and the Specialist come to me???????
Hopefully if anyone in Michigan is driving the interstate and sees a women driving a HUGE SUV trying to steer and hold her Rolling Pin of Defense, y'all stay out of my way.:lol2:

So I said all that to say tomorrow is Grace's surgeon's consultation about the g-tube placement.

Update::confused2:
Leg pains increasing. She now needs meds to help her with the knee pains again.
Pee-pee accidents again. 4 in three days.
Eye pain this evening. She asked for the eye drops that she hate to make it go away

By next Friday we SHOULD have the Fecal Cal. stool sample back. 
Maybe that will put things in perspective.

Have a good week-end. Sunday is my boy's (Gunner) birthday. He'll be 6. WOW!
 Time is slipping by so fast.:confused2: 
We're planning a fun filled week-end for him. He deserves it. 
He has to be put on the side lines so much because of Grace's care
 but he never complains he just pulls her hair and runs like mad.:yfaint:


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## Jmrogers4 (Apr 18, 2013)

Happy Birthday Gunner! Hope he has a fantastic 6th birthday, he is just a few days over being 1/2 James age, James turns 12 on Tuesday but we're celebrating Sunday.
Hope all goes well with the consult today and at least you are driving a big ol' SUV so everyone can see you coming


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## upsetmom (Apr 18, 2013)

:bdayparty:..Happy Birthday Gunner.

Have a safe trip.
Hope everything goes well with the consult.


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## DustyKat (Apr 19, 2013)

Good luck with the appointment! 
Saturday morning here, have you already had the consult?

And a Great Big Happy 6th Birthday to Gunner! 







I hope your day is fab and fun! 

Dusty. xxx


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## Farmwife (Apr 19, 2013)

Ya, appointment went well. Surgery for the 30th of this month. It's just enough time to change my mind a thousand times.:ghug:
It sound really easy and her recovery should be quick.


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## DustyKat (Apr 19, 2013)

Good to hear it well FW...easier said than done though ay? :ghug: 

In my thoughts and sending loads of love and healing thoughts your way. :heart: 

Dusty. xxx


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## CarolinAlaska (Apr 21, 2013)

Sorry Miss Gracey is having so many EIMs.  How's the drinking of the formula going?  Maybe the reflux that comes with having an NG tube in was setting off the asthma.  I'm glad that calmed down.  10 more days!


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## Farmwife (Apr 27, 2013)

Hi all! :ghug:
Grace's surgery date of the 30th is fast approaching. I'm as prepared as can be. 
I received a blessing that my good friend has taking off a few days at NO pay to come with Grace and I to the hospital.
 My poor hubby wants to be there but the farm now is just to busy. 
We both appreciate my friend coming with us.
 This will be the first time my hubby and son will be without us. :confused2:
I just hope the house will be intact when we come back.:yfaint:


We're still waiting for the fecal cal. to come back on Grace. The GI nurses can't believe it's taking so long to get back.:ymad:
Grace is doing good. Belly pains slightly increasing. Eyes bothering a bit. Leg pains creeping back in but just a bit. Poo becoming a problem, but not to painful.
But hey...way better then it was. (_can you see me in the bubble mlp_)

I hope all is well with everyone.:ghug:


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## DustyKat (Apr 27, 2013)

Thanks for the update FW...:ghug: 

I'm sorry to hear that Grace is still having problems, bless her heart...:heart: 

Good to hear you have someone going with you, that is fab!  

Good luck for the 30th and good luck with the test results! :goodluck: 

In my thoughts, :Karl: 

Dusty. xxx


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## Tesscorm (Apr 28, 2013)

Good luck with the surgery!  Glad someone is going with you!!  How long will she be in the hospital?  Is it only a couple of days??


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## Twiggy930 (Apr 28, 2013)

Good luck with the surgery!  Hope it is all smooth sailing after that.

:goodluck:


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## Mehita (Apr 28, 2013)

Good luck tomorrow!


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## Mylittlesunshine (Apr 28, 2013)

Good luck FW I'm sure it will go fine
Hugs to you and grace x x x


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## QueenGothel (Apr 28, 2013)

Sending my best your way!  Hugs!!!


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## Crohn's Mom (Apr 28, 2013)

Best of luck tomorrow !


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## Jmrogers4 (Apr 28, 2013)

Best of Luck to you, glad you have a support person going with you.  Will be thinking and praying it all is smooth sailing.


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## jmckinley (Apr 30, 2013)

Good luck with the surgery tomorrow!


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## Sascot (Apr 30, 2013)

Thinking of you!  Hope all goes well with the surgery :goodluck:


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## dannysmom (Apr 30, 2013)

Thinking of you and Grace! Hope everything goes well.


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## Johnnysmom (Apr 30, 2013)

Thinking of you and Grace today!!!

(((((hugs)))))

Say Hi to Paul and Dr.K for me if you see them.


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## Mehita (Apr 30, 2013)

I was driving through MI today and this crazy lady with a rolling pin... just kidding. 

I hope all is going well today!


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## my little penguin (Apr 30, 2013)

Good luck


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## Niks (May 1, 2013)

How did it go yesterday?  Hope all okay :ghug:  xx


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## Farmwife (May 2, 2013)

We're home.
She did great though it all.
I'm proud of my girl.

Thanks for the well wishes.:ghug:


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## Mylittlesunshine (May 2, 2013)

So glad to surgery went well 
How's the feeds going?


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## Johnnysmom (May 2, 2013)

Glad everything went well.  I am sure you are exhausted from the whole experience.  I am happy to hear Grace handled everything so well.  

Just wanted to let you know that I spoke to Johnny's GI about his high EOS numbers on his biopsy report from his scope.  He said that the scope was completely reviewed by Cincinnati Children's when we transferred care and that the person who specialized in EOS disease reviewed it and was not concerned with how high his EOS count was.


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## CarolinAlaska (May 3, 2013)

Hi FW.  Thanks for the update.  I hope Miss Grace is doing?  Is she glad she doesn't have to have a tube in her nose any more?  Jaedyn wants to know, did it hurt?


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## jmckinley (May 3, 2013)

Just sending hugs to Princess Grace and her wonderful Mommy!


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## Tesscorm (May 3, 2013)

So glad it all went well!!!  :sun:


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## Sascot (May 3, 2013)

Hope things are continuing to go well!


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## kimmidwife (May 3, 2013)

FW,
I am just catching up, so much going on I have not been around so much. How is Grace doing? Glad to hear the surgery went well. How are her symptoms? Have they improved any?
Wishing Gunner a belated Happy Birthday!


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## Farmwife (May 13, 2013)

Flare or not a flare.:yrolleyes: That is a very good question.

As you can guess Grace is struggling a bit.:confused2:
I would hate to jump the gun here.
I mean she had surgery 12 days ago.
But from the surgery stand point everything looks good.
 She did have a bleeding episode but we figured it was because she was a little to active.

This week LDN will be started.

So do we waited it out until the LDN kicks in *or* put her back on pred also *or* wait to see if the flare is just a short term thing because of her surgery?

Her syptoms....tired,slight pains, moody, back to being constipated.:yfaint:

Calls will be made tomorrow. :ymad:I just hate the fact I have to make the calls.


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## QueenGothel (May 14, 2013)

Glad the surgery went well.  Sorry she is not doing well at the moment.maybe she just needs some time to bounce back.  . I hope that is all it is.  Keep us posted.


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## Mehita (May 14, 2013)

How long before LDN is supposed to work? And might she be tired, moody and have slight pains because of the constipation? Maybe that's the root of it all?


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## my little penguin (May 14, 2013)

Your Gi agreed to LDN??
Hope she feels better soon


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## Johnnysmom (May 14, 2013)

How long does it take for LDN to start working?

I would think if it takes as long as 6mp (up to 3 months) that you would want the prednisone.  I think that the delay in 6mp working was the only reason Johnny was put on Prednisone.  He too had bleeding after the scope and the Dr called the script in that day.  I am wondering if the LDN wouldn't have a better chance of working if the Pred got things settled a bit?   It also seems that sometimes small things are enough to kick a flare into action.  I wouldn't rush into anything but if she didn't seem to be doing better soon I would consider it.


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