Little Farm Girl - Update

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crohnsinct said:
Be strong Farmwife and stress that you need this doc to be that person and that you need answers asap. Do you want me to call ahead for you?
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NO I don't want you to call ahead!!!!! I want him to like us!!!!!:rof:

I put little farm girl to bed with a slight fever, her left foot hurting and she just looks off. We'll see what the days bring.

I know this change is for the best.
It's just hard for us farmer to do the change.
Except for Grace's medical needs our doc has been great to us.
I just think Grace is above what he can do.

Good night to all.
We have things planned this week-end.
Naturally we made all the plans when Grace was feeling well.
They include hiking and such.
If you see me write a thread called-
"Why I HATE undiagnosed Crohn's"
you'll know the plans did not go well.
And then y'all can debate who's happier, City kids or Country kids.
Crohnsinct I'm still waiting :shifty:for the pictures of the barn.
PLEASE don't tie your O to the barn doors.:ywow:
You might get arrested!:rof:

Farmwife
 
Hiking?! Seriously?! Remember what happened last time? I am pretty sure those bears are still in the woods!

I hope you guys have a great weekend!

Just as soon as I can get O out of the water those pictures are a comin!
 
YAY for the walk-in Dr!! - not YAY for Grace being poorly again - fingers crossed for the new pead being good and on Gracies case - big hugs xxxx
 
Hi all,
Well we went to the new Pead. GP today.
First off so you get the whole picture, my kids didn't get to bed till almost midnight. Being farm kids they were up naturally at 6 AM.
So can you guess how they were at the docs office.
TERRIBLE! I was embarrassed, my hubby was mad and
I wanted to ask where their mother was. :redface:
So my hubby played referee as I tried my best to talk to the new doctor.
I was happy that the doctor was putting her symptoms together as a whole.
As ware the other doc thought the problems were not related.
However this doc is also under the belief that if the blood test come back normal she's OK for now.:ymad:
He took more interest in her knee pain than the other doc. He said that since her joint are health looking and
her pain only stays for minutes, he's not too concerned YET.
He did acknowledge the fact that their's only so much we can do until something more happens in the future.
He felt the GI is doing a good job. He didn't feel a scope would be called for because her blood levels are in the normal range. :ymad:
He said if things change he'll get every thing we need to help her.
He did think that doing more blood work would be good.
He notice she's never had her iron checked. He though since her liver enzyme was off that should be checked again. Also her CBC being lowered but not in danger yet should be kept up on.
She's to stay on Miralax and everything else.
One thing I liked was he said followup appointments. I said WHAT.
He said she needs to be checked up on.
Her old doc NEVER asked for follow up appointment!!!!
I had to call and beg for one.
So every two months or so he wants her in the future.
So the long short of it, I wanted more action taken but least I feel he might be the better doc to go with for Grace.
My BIG thing is way does it have to get worse for my girl
before they can step in.
So their you go... he thinks her symptoms as a whole could point to "something" but we have to wait.


Grace is back to being a little healthier and she grew 1 inch. First time in 8 mo.
Farmwife
:soledance:
 
So frustrating that you still don't have an answer or even a definite plan of action but... at least this doctor wants to be involved as things progress! Hopefully, at the first sign of change, he will be prepared to act. I don't remember if you already do this but, try to keep a diary of her symptoms to follow-up with at your next appointment.

Did he suggest anything to do about her knee? Or any idea about why it hurts?

And, yes, it does seem so wrong that you have to wait until she gets worse before they do anything else... Has anyone ever suggested an ultrasound or MRE? I'm pretty sure they don't give the 'detail' that a scope gives nor will you have a biopsy but Stephen's ultrasounds did show thickening even before he was diagnosed... If thickening was found, perhaps that would be more reason for a scope????

And, just where was THAT MOTHER? Probably off cow tipping somewhere! But, don't you just love when your kids are at their 'best' in public!?! :D
 
He said her joints need to be monitored BUT until the pain last for hours or a day, he feels she still in no danger.
No he never really said because
by this time ......
my children were pretending to be logs on the floor.:shifty:
I would have been happy with a MRI BUT.......
again her blood work doesn't show a need.
I wanted to push for one but.....
my girl was a butterflied and my son was a big bad dinosaur who eat butterflies.:ywow:
STOP SMILING! WE HAD TO PAY FOR THIS VISIT!!!
 
www.MessenTools.com-emoticones-lol-risa-252.gif
I'm not smiling! I'm laughing! Oh my, I can just picture it now.

Oh man I hate the...NFO (no further orders) press on!...so much easier to say when you are on the big leather chair side of the desk!

He surely does sound like he is taking a more holistic approach thank goodness and YAY for the follow up appointment!
I know the waiting is crap but in the interim I would be tracking all her symptoms and when you next go back, assuming nothing untoward happens in the interim!, and if the bloods remain normal demand then that it isn't good enough, it isn't normal and you want some further testing done and start with imaging as Tess has suggested.

Dusty. xxx
 
LMAO!!!! Your picture of Grace goes just so very well with your post! LOVE IT! (The picture also goes very well with your 'award acceptance speech'!! :rof:
 
LMAO! Did Grace leave her tiara at home? Pretty sure dinosaurs can't eat princesses.

I would have responded sooner but I was busy watching my little one play softball with an aluminum bat with lightning and thunder overhead. I was trying to figure out how I would explain not pulling her to the ER doc. They called the game for tornado warnings...how do you like that farmwife? City girl in the middle of a tornado warning! I was freaking out driving home dodging falling trees. One limb hit my windshield!

So ergh more waiting but at least we have someone who is tracking and willing to listen and willing to follow up. Score one for Framwife.

But yeah how bad do these kids have to get before they start looking for what it could be?
 
Farmwife

I am glad to hear the new doctor whats a iron panel. Does this should anything like farmgirl.

Pale child you don't really notice because the kid has always been pale. Stomach aches and occur every month or two then go away. Very skinny but has always been so. Hemoglobin low but nothing to worry about. Odd pain that go way as quick as come on. More tired that normal for said child.
 
Im glad this Dr seems a bit more on top of things but so frustrating that she has to get worse before they will do anything - Although I suppose you don't want her to go through loads of horrid tests and then they dont find anything because the inflammation is not extensive enough to see? Freddy still gets bad tummy pains that only last a few minutes but I feel that because he has had a normal scope they wont look further now - maybe I rushed into things and should have waited till he got worse. I hope your Dr is better at ordering bloodwork than ours - last bloods Freddy had were to test the iron levels - what was the one thing they forgot to test for.........
I hope Gracie continues to do ok - and I hope the butterfly didn't get eaten by the big bad dinosaur!!!!!!!! xxxx
 
Sounds very frustrating.

I strongly second keeping very detailed records of the signs and symptoms that concern you. In my experience, docs take you much more seriously when you walk in the door with that kind of information. Plus it gives them something concrete to use when they are thinking about all the possible explanations for those things.

And we all know that normal labs does not equal well. My kiddo's recent MRE showed inflammation but you would not think he is sick if you looked at his labs. A lab test is just one piece of the puzzle and looking at the overall patient is at least as important.

You mentioned that she has had a bit of a growth spurt. Have you or her doctor been tracking her growth? This is one measure that can be helpful in diagnosing GI problems early but it requires patience (I know you didn't want to hear that) and accurate measurements. Many, many CDers have growth delay or even failure. If she is growing on a normal curve then that is definitely contributing to the docs feeling like systemically she is doing fine.

If you want more info on growth, start a new post and I'll be happy to share. We have had some experience with that issue ourselves.

Patricia

Badger, 16, CD, Methotrexate, Omeprazole, other non-CD meds
 
Patricia56 said:
You mentioned that she has had a bit of a growth spurt. Have you or her doctor been tracking her growth?
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Grace was on the shorter side. The growth spurt help that. She's watched very carefully by us. To tell you the truth, mentally she's more prepared to start kindergarten than her 5 yr. old brother.:ybiggrin:
 
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Just a quick update on Grace.

She was still struggling with Miralax and fiber. I called the GI nurse and she does think she impacted but...... since she's happy and energetic:thumleft: the nurse wants more time to give it to work. She was having diarrhea 4-8 times a day. But now it's more pencil thin strips coming through. She's in NO pain when she goes. BLESSING. :thumleft:
But twice now she has complained of belly pain after eating.:thumbdown:
Is there anything extra I can do for her to help to loosen her up?
The nurse said she's to stay on 4 tsp. of Miralax. I forgot to ask about the fiber.

Should I still be giving her the fiber? Do any of your children have problems with being impacted?

The nurse said she's concerned about the LDH level at 252. I said 9 months ago it was at 595:eek:. We don't want it that high again. WELL, YA!!!!:ymad:

I hope all is well.

Farmwife
 
Oh no I am so sorry that Grace is having trouble again. I hope the miralax works soon. I don't really know about the fiber but I would assume you would continue with it. We are thinking of you guys xxxx
 
Wow, I go away on holiday and miss a whole bunch of stuff! Sorry to hear that Grace is not doing so good. It never ceases to amaze me that doctors seem to think a child cannot possibly be bad if their blood work seems ok.:frown:
My son's bloods have always been fine and yet here we are. I agree it would be a good idea to write absolutely everything down so that he has it in black and white and there's no chance of you forgetting anything. Hope the new doc works out to be "the one" that helps solve all Grace's problems.
 
She's tried prune juice a couple of times for a couple of weeks. NO GO!

She's still HAPPY! But................................
Her belly pain is increasing and her irritability is also.
Her belly looks "puffed" but not swollen. She's not sleeping. Just not tired.
Still has diarrhea. Starting to get painful for her, but not to bad yet. IF she's impacted, it's not coming out yet!:yfrown:

She has a flesh like bump around her ( my dear mother who is a picture of lady-hood refuses to call it the anus and calls it....) pooper shot.:ybiggrin:
What could that bump be?
She's complaining of itching with no rash anywhere! She's on allergy meds. I can't figure that one out.
So as you can tell I'm trying to stay positive and in denial all at the same time.:thumright:
:soledance: It's hard but If anyone can do it it's me.:soledance:

Have a great night!
 
Does she see a pediatric allergist?
- I would suggest adding that to the list.
they can give you more guidance on what is what plus given her age things tend to get worse in that area before getting better.

HUgs.
 
Could the bump be an abcess? or fistula forming? is it sore to touch? I would call the GI nurse again especially if it is sore to poop. Big hugs xxxx
 
Hi, poor Grace, hope she doesn't get too irritable for you!!! ;). I agree that the bump may be an abcess, definately worth letting the doctor know. Maybe if she sits on a heat pad it might help. Have you tried giving her tummy a massage to help her get her bowel moving? I try that with my daughter, just a really gentle massage so that I don't irritate anything. You need to massage clockwise, gently rub along the lower stomach then upwards to the ribs on the right, across to the ribs on the left then down to the left hip (do this a few times). Then if you put the heel of your hand just between the pubic bone and the belly button, keep the heel of your hand still but move your fingers from left to right like a fan shape. Also you could place your hand flat (sideways) under her belly button and rock gently from fingers to the heel of your hand.
I'm not sure that it does a great amount to help but every little helps and Amy finds it quite relaxing at night. She quite often asks me to massage her tummy before bed.
 
Sascot - thanks for the massage tips - I did do massage on all mine when they were babies but I had totally forgotten about it - It may help Freddy! - I will give it a go!! Did you go on holiday yet? was it good? did everything go ok? xx
 
Farmwife,

Sorry to hear Grace if having difficulties. We never want our children to be uncomfortable.

I'm curious. Did the GI doc do a full bowel clean out on Grace or just start her on Miralax?

My daughter's GI doc does a full clean out on all children regardless of age first using either Chocolate Exlax Laxitve Bar Squares (more palatable for children or those who can't swallow pills) or Dulcolax Laxitive Pills/Tabs along with a certain amount of Miralax and fluid. After the initial clean out, a regular regimen to initiate at least one to two soft stools daily is initiated using Miralax. If that fails, then it's on to more over the counter meds and/or prescription meds.

I've known this doc for 19 years now. I knew her when she was just a resident at the hospital and took care of my son as an infant in ICU. Later she got my daughter for just a short period. Now the doc is The Chief of the Pediatric GI clinic. She now has my daughter back. I was in so much pain from constipation the day of my daughter's visit that it hurt to even move so the GI doc told me to do the same clean out as my daughter. LOL! I did it. My PCP agreed and was glad I did the clean out.

My 14 year old daughter is still suffering from major constipation despite the clean out and so am I. She is currently taking 4 Senekot and 1 Anitiza in the morn and 3 Ducolax Laxitive pills and 1 Anitiza at night and is still have difficulty going. She dropped the Miralax because it makes her bum sore. Miralax does the same to me, however, I'm still taking it.

I also believe Grace is impacted. My stools are coming out the same as Grace's. Yesterday I felt so bad that I couldn't eat much and got gas and acid every time I drank anything. I had no appetite and was even a little bit nauseous. Last night I took 4 Senekot to see if anything would improve. My IBS is acting up. Lots of cramping. I have been able to have several stools today that were soft or semi-hard. They were large and round. So my guess is that the Miralax was allowing some of the stool to venture around/past some larger stool. No matter the consistancy of my BM's, I have to strain just to have one. No fun. Now my Sacrum hurts yet again.

Have you thought about asking if you could try a laxitive clean out with Grace? Espcially if her eating and drinking is being affected by the constipation. Just a thought...

My prayers are with you all, NL
 
Thanks Naturerlover,
It's nice to have you around.
No the GI never had her clean out. That makes sense that a GI would do that.
I'm going to switch Grace to something else.
I also think I'll take her off all dairy again.
Her test say she's not allergist to it and she shows no sign of pain or problems with it but......I never had her this bad off with her stool problems before.
When she was under 1, I had to "help" her go every day till she was 9 mo. old. Still the doc told me that was nothing to worry about.:angry-banghead:

The big news, drum roll please.....................
her impaction seems to be breaking up.
:pika::luigi::banana::grr1d::applause::emot-dance::yoshijumpjoy:
I hope and pray.:shifty:
 
:banana::banana: there's a couple extra for good luck :ysmile:
Suzysu - been on holiday, it was fabulous. A bit hot for me but otherwise perfect.
 
Oh, I hope things are improving!!! (Just trying to catch up now with everyone...) If that little bump doesn't disappear, I would call the GI asap - I, too, was thinking abscess or fistula :(

Thinking of you! :ghug:
 
Make sure to keep those stools nice and soft.

I've been having semi-firm stools all day and have lost three pounds today. My stomach is not as distended now. Still have more in there though. I don't understand how this could happen even though I was on the Miralax maintenance. Oh well. Saw my pcp today and she's thinking the same thing I am thinking. (It's nice to be on the same page with the doc.) I will start back on the Miralax tomorrow as well as colace stool softner and a fiber cookie to keep things bulked up. Hopefully that will do the trick.

My doc is also having the home nurse do some blood work for food allergies. I don't think she is checking enough foods so I'm going to make another apt with my nutritionist and see what other foods she wants to test for.

I think the similarities between Grace and I are a God thing. We seem to be able to help one another.

I switched from milk to soy milk recently. What are you using in place of milk for Grace?

How is Grace doing? Children are amazing. They can bounce back so quickly and tolerate so much. Having had one in the hospital for two months, I can honestly say that.

How is your son handling all this. It is difficult when one child is ill and requires a lot of care and attention.

Your family is in my prayers.
 
Thank you Naturelover for the kind words. :rosette2:
My son is a pride and joy to his family and his church. He's a wonderful, considerate, patient (gets that from his dad):thumleft:, hard working (also for dad):thumleft: and a handfull (gets that from me).:ylol:

As for Grace she's fine I guess.:yfrown: Her stomach pain is slowly starting to rear it's ugly head. She's had it four times with in an 10 minutes of eating. BUMMER. 9 months ago a doctor put her on ulcer meds and it seem to work for stomach pain. YA! But..... all her other symptoms got worse. Her GP took her off it. So it cleared it up for 9 months or so. Or was it because she went into a bit or reprieves of her symptoms. Her knee pain has come back after being gone for a couple weeks. BUMMER! I still have to call multiple doctors offices tomorrow. I've just been to busy with other things. Maybe that was just some denial and wishfully thinking that is causing me to procrastinate.:shifty-t:
I'm going to Much to ado thread. Their has to be something to debate or make fun of.:thumright:

Well my hubby just said the the Olympics are almost done in a few days. That means I'll have to start paying attention to him.:p

To cheer my self up I send out a bunch of friends notices to you all. Accept only if you want to acknowledged me as a friend. If you don't that's OK. crohnsinct will have to do then. That seams kind of mean but what ever!:ylol:
 
I am so sorry the pain is back! I bought Caitlyn this thing at sharper image in the mall called a Bean. It is kind of like a hot water bottle but is filled with a gel like substance you plug it in for fifteen minutes and then it stays warm for several hours. Caitlyn uses it when she is in pain and she says it helps. Maybe you should get Grace one. You can order it online.
 
kimmidwife do you have the address?
I'll look it up. Thanks. :thumleft:
Oh and thanks for accepting me as a friend! :rosette2:
See crohnsinct people like me!:p
 
we use a thermal something- microwave for a minute and DS sleeps with it- found it at the grocery /drug store.

De"nile" is a very long river and we were there many years.
Hope the docs find some answers for you soon.
 
Sorry Grace is still feeling pains :voodoo: Really hope you can get somewhere with the dr calls tomorrow!!! :ghug:
 
Farmwife, Sorry to hear Grace is having a set back. Hope it doesn't last long. Keep us posted.

There never seems to be an end to making phone calls for medical issues. I'm like you. Procrastinate and hope the symptoms will wander into never never land. Ha, ha, ha!

Will you make my calls tomorrow too? Tee hee!

Blessings,
NL
 
Sorry she is in pain again - I have one of the microwaveable wheat bags for my daughter who gets a lot of tummy pain and its fab!
Hope she feels better soon xxxx
 
Hey Farmwife! - just written an essay in the undiagnosed kids section!! better than earlier on this year but I am still confused about so many things! I think a lot of it is all a waiting game!!!!
How is Graces bottom? did the lump turn into anything?? I hope not.
I really really must go and clean the house now :( will be checking the forum again later no doubt!! xx
 
Hey Farmwife - havn't been on in a while and sorry to hear you still have no answers for Grace. I am little concerned about the bump on her bum, Lucy has these and they are as a result of a fissure forming so maybe if it doesnt go away you should take Grace back to the doc or ring your GI.

I cant believe you are still getting the wait and see approach from the docs - it must be so frustrating for you .

You and Grace are in my thoughts - hang in there girl we were in the undiagnosed club for 18 months so know how you feel.
 
Poor farmwife:yfrown: In denial on so many fronts...people are not necessarily accepting your friends requests because they like you they may just want to see pics of cute Gracie...remember how I bribed half of my friends?

How is Grace? What did the doc say?
 
Oh I don't know - I think my finger slipped onto the accept button ;)
Hope you get somewhere with the phone calls to the doctors! I am just doing the same thing myself this morning. :(
Well I did quite enjoy the Olympic closing ceremony - although some of the ideas! Who sits around a table and says "I know - we'll have Russell Brand singing on a bus, then the bus will turn into a giant octopus with a dj in the middle, and we'll have rollerskating nuns"?? :ywow:
 
Sascot, The real question is, what were they drinking and/or smoking? My daughter and I watched the Olympic Closing Ceremony. She thought it was strange. Ha, ha!
 
Sascot said:
Oh I don't know - I think my finger slipped onto the accept button ;)
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Sascot who are you kidding????:mad2: Your finger didn't slip.:yfrown: You couldn't wait to hit that button.:cool: The fact that someone wanted to befriend you:frown: was the high light of your day, maybe even your life.:ytongue:

crohnsinct I'm glad your back. Have a good time at VBS. At Church we had a desert social for all the bus kids and the Church kids. That's 50 kids totally sugared up. I'm glad I wasn't on that bus going home.:thumright:

:soledance:
 
:thumright:Naturelover I didn't watch the Olympics closing ceremonies. :shifty-t:
I figured I could watch me garbage can with the buzzing fruit flies and still find it more entertaining.:rosette1::ybiggrin::p
 
Well now you know what you missed by not watching that "awesome" closing ceremony! Think they were on something for sure :lol:
Farmwife you are totally right! It did absolutely, positively, completely make my night to get the friend request :ycool:.
 
Sascot said:
Farmwife you are totally right! It did absolutely, positively, completely make my night to get the friend request :ycool:.
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Oh that's sweet!!!:hug:



:ghug::ghug::ghug::ghug::ghug::ghug::ghug:
OK EVERYONE START BOMBARDING Sascot with friends request.
:hug::hug::hug::hug::hug::hug:

Farmwife
 
I couldn't find it in the thread, but when does Farmgirl go to her GI? I'm praying so hard that you get answers this time!!!! You need them! :)
 
Thanks TangieC, She goes in Oct. I'm thinking she'll be seen sooner. I increased her Miralax again and still no poo. I'm going to at least push fo a MRI.
Is their a difference between MRI and MRE?
Thank you for the prayers.
 
I agree with Suzysu...that picture is TOO cute! I will pray she gets in sooner. It stinks when no one listens. I love my boy's GI team and all the attendings, residents, interns, etc., at the hospital we were sent to. But initially, at our local hospital, I had to tell the ER doctor that I was refusing to leave until they told me what was going on. I don't know why they act like parents can't tell when there is an issue. You could LOOK at him and tell he was really sick. And the fact that I was in two different ERs on three consecutive nights should have been a big clue. He told me he wasn't there to make me angry, but to help. So I told him he needed to LISTEN or send someone who would. I told him there was no way he was just constipated. GRRRRR! Makes me angry thinking about it! And even angrier when I think about the first ER visit! Sorry, but the thought of others besides myself not being taken seriously BURNS me up! Isn't it better to err on the side of caution? Better safe than sorry? I'll be praying too, for you to have strength and wisdom in dealing with this. Okay, I'm done with my rant! For now anyway :)
 
Farmwife said:
Thanks TangieC, She goes in Oct. I'm thinking she'll be seen sooner. I increased her Miralax again and still no poo. I'm going to at least push fo a MRI.
Is their a difference between MRI and MRE?
Thank you for the prayers.
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Yes MRI and MRE are different ... (but in my son's case, his dr ordered an abdominal MRI and we got an MRE :)

As you know, MRI is just a techinique for imaging. There may be different MRI protocols for imaging the GI tract. MRIs can be done with IV contrast or without.

MRE involves drinking a contrast to fill your intestines prior to the imaging. It is relatively new compared to regular MRIs or CTs. Most places require at least a 4-hour fast prior to the test. (Our hospital did not require any fast for children, and it was extremely foolish as drinking 3 large containers of yucky contrast is hard with a fill stomach and it took about 7 hours for the contrast to fill his intestine being caught behind dinner ... it was an awful night for my son)
 
Farmwife
you want to ask Them for an MRE. As dannysmom said it is relatively new. our hospital did not call it an MRE but called it an MRI with drinking contrast. it is supposed to be a very accurate way to visualize the parts of the GI Tracy n
ot seen by colonoscopy.
 
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Thanks dannysmom and kimmidwife ,
I still have to get to the new GP to pick up test results.
Grace is up to 5 tsp. of Miralax and not better.
When she does go it's explosive.
Poor kid can hardly make it. Keep in mind 4 out of 5 it's a false alarm.
She tries and tries and nothing.
 
An MRE sounds like the way forward - I wish they had done it with Freddy - althought getting him to drink the contrast would probably have been impossible!!
 
suzysu
the way they got Caitlyn to drink it was they mixed it with look aid. they had several flavors she could choose from.
 
The difference with an MRI and MRE is the oral contrast that used. An Enterogram requires a much larger amount to be consumed, for Matt it was about 1500mls. It is a sugary mixture that is designed to line the small bowel rather than be absorbed by it.

Matt had one performed the day after his scope as the GI didn't want to push through the inflamed area. It was very accurate at visualising his small bowel and it accurately diagnosed him with a 100mm length of terminal area affected with 50mm of adjacent stranding. I know it was spot on as this was the exact amount that was affected when he had his surgery.

Dusty. xxx
 
Well how fast things change!!!!


I put off calling the GI because
lately I've been made to feel like
I'm making a mountain out of a mole hill!!!!!!

:thumright:SO THEY CALL ME!:thumleft:

I get a call from the GI nurse saying that the GI has reviewed the labs (2 wks later):ymad: and a list of her symptoms. I also informed her of some new symptoms and she said let me call you back. She calls back and said he wants her on a clean out NOW. Soft too liquid diet. Upped Miralax to 7 1/2 tsp. She has till Monday to clear out. If she can't , we'll have to do something more right away. Then she goes into the lab results. He feels something More needs to be look at and mentioned Hematologist. She said we'll fax your GP and see what he says.
I call the GP and the nurse said they got the fax and the doc said get in NOW for more blood work. OK and then I was told that he is going to refer us to a Hematologist.

So their you have it. Grace is more pale than ever, she's lost 3 lbs in 5 days and getting serve pain where NO woman wants pain. Her tommy hurts a lot.

But she still puts on her crown and calls me Queen Mommy!:queen:
 
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Oh Farmwife, my heart breaks for poor little Grace! At least they are actually doing something (and without you having to beg!) and reasonably quickly. Hope the liquid diet and extra Miralax work for her. Amy doesn't seem to be going any more with the 4 times extra Lactulose yet. My mom can't believe it - 1 tsp of it helps her!
That's good that they are going to refer Grace to a Haematologist as you have been worried about her blood results. Maybe you are one big step forward to getting some answers! So sorry to hear she is in pain, I hope it doesn't last too long :hug:
 
Oh my goodness Farmwife. :hug: BUT AT LAST THEY ARE FINALLY DOING SOMETHING! and about bloody time too!

I hope you a now on the path to solid answers and your little princess can find long and lasting relief.

Onwards and Upwards!
Dusty. xxx
 
I hate that your poor little one is going through this! I hope that you are on your way to answers - quickly! Although a diagnosis of anything is always hard it helps just to know and have a plan. I'll be keeping you and Grace in my thoughts. Wish you all were closer so she and Ellie could play princess together
 
Wishing you all the luck and best wishes in the world - hope she feels better with the diet and increased meds. - big big hugs xxxxxxxx
 
FINALLY...so happy to hear the docs are taking notice and requesting tests. Time for Grace to start feeling better and get back to her princess pursuits 👸...here's to good 💩 (can not imagine where I would use that emoticon except here. 😜)
 
:rosette2:
Farmwife,

Just caught up on the thread. Please keep us up to date. When do you see the Hematologist? I'm so glad the docs are finally doing something. I will pray that the Lord will open up the docs eyes and the GI issues be revealed.

Praying for you and Gracie. NL
 
Sorry farmwife been busy in ancient Babylon and then wedding and oh yeah our house was broken into yesterday:ymad: Luckily the left my laptop alone so I a ready to reconnect with my Crohns buddies.

I am so glad that they are finally listening to you but oh so very sad that Gracie is not better. I hope and pray that you will be getting answers very soon.

Sending positive poop vibes your way.
 
Crohnsinct - how awful about the break-in!! I hope there was no damage and nothing of real value taken! We've had our cars and garage broken into - it's a terrible feeling of violation knowing some stranger has been in your 'space'. :ymad:

Farmwife - I have no advice for you :( But, am just so sorry Grace is having to deal with this and so sorry you have this worry! :ghug: Hoping that you see some improvement today! :heart:
 
@crohnsinct - Aha! Just call me Sherlock! :lol: When I was on Farmwife's other thread I thought...Huh, when did this break in happen?!?! :eek2:

Oh man crohnsinct how awful! It is good to hear that nothing was taken and the pew saved the day! :):):) Sucks about the doors though...booooooooo. :voodoo:

Then Sascot talking about South Africa!!! :eek2::eek2:

Don't know what it is like where you Farmwife but half the people I work with don't even lock their houses when they go to work!

Dusty. :)
 
Sascot it's stories like yours that remind me how easy we have it here.
No DustyKat, I lock my doors.:shifty: I was born and breed in the city. It's instilled in me.
Hubby thought I was crazy for locking my car door in our drive way. :ywow:
Now crime is going sky high here.
We make sure to have what we need to protect ourselves.:biggrin:
It won't matter though if were not home to do it.
I just hope they don't forget to take my bills with them. :ytongue:
 
DustyKat;487874 Don't know what it is like where you Farmwife but half the people I work with don't even lock their houses when they go to work! Dusty. :)[/QUOTE said:
Do I smell another knock against the city? Well maybe not because I am actually in the burbs now and funny but my whole life in the city not one break in...lots of glass in cars broken but not one thing taken from me. Move out to the burbs and have had a car stolen from my driveway and now this!
Click to expand...
 
Crohnsinct, Sorry to hear about your break in. Can't stand living in the city with all the hustle and bustle as well as the noise. Lovin the quite country... Farmer sold the land around me. Bummer. Houses going up but only about 8 of them. One is a small farm. The burbs also too noisy and busy for me. Had to lock everything or nail it down or it'd be stolen when I lived in the burbs. Lovin the quite country.....

Sascot, where's your thread about Africa?

Farmwife, What's the latest update on Gracie?

Blessings and prayers coming everyone's way, NL
 
Well I just laid Grace to bed early. She's just to ill to stay awake. I'm going to do my best to remember today. It's a strange blurry vision.
Sorry this is going to be long.

Got to Doctors office. Grace limp and tired in my arms.
We get rushed in the room. Nurse said we got her new results. "things climbing".
OK I start to ask what. The doc comes in and starts to tell the nurse about not having the rest of the test results for Grace. She said I'm by the fax every time it goes off. I'll bring it right away. Mean while my hubby and I are starting to slip into.....Oh, no mode.
He tells us that her LDH is STILL climbing after 34 days. I think it's near pushing the 500 mark. Her WBC is still falling but iron is normal. Buy this time I go into shut down mode. Keep in mind that he hasn't even touched Grace's belly yet to see if their's an impaction. He mentioned the immediate referral to the hematologist downstate and a few other thing about some of her other blood levels. A marker for inflammation was mentioned. Sorry I didn't catch what it was. I laid her on the table. She just laid there. :frown:The Doc pushed and prodded and said he can't feel anything unusual. I said well then do we know for sure it's an impaction? I asked for some kind of scan and he said yes I want her to have another ultra-sound done. This time on her GI track. Then he said the nurse is in talks to the children's hospital to get you in there. He said Grace is a special case for sure. He left. My hubby took the kids to the car. The nurse came over and said There making the calls and will call us right away. She said keep her on liquids until you hear further. Her GI track needs to rest. Then she said it's OK your all make it through it. ( Make it through what????? You haven't told us anything) I got in the car and my hubby said, what just happened. I still don't know. I got home and the message from the Doc was, Devos hospital's hematologist and GI department are conferring now. Be prepaid to leave this week.:ywow:
WOW, does that seem like IBD or something else? I'm more confused and scared to find out.
Amazing how fast things change.
Sorry guys but writing it out seems to put the day in perspective.

FYI DustyKat when I told the Doc about the air bubbles in her urine him knew what it could be.:thumright:

Ultra-sound tomorrow and downstate some time this week.
Oh man, I wish I would have cleaned my house better.:ybiggrin:
 
Wow, you've had quite a day! :Frown:

I'm really glad they're moving to get things done!!! All the necessary tests will be done soon!!! You and Grace have been waiting so long - it's about time! :mad:

The inflammation marker could have been CRP (C-reactive protein), ESR or Sed Rate... each indicates inflammation in the body but not necessarily IBD related. (There may be others markers, these are the two I know...).

Glad the ultrasound is tomorrow and I'm sure your doctor's requested the results immediately! Hopefully, he'll get it the same day!

:Karl:
 
Well duh! The committee could have told them months ago Grace was a special case! I am slightly perturbed they have made you wait until a point when she is so ill and weak that now they are scaring you but at least now you are getting the attention you need.

I have no idea what else they could be looking at but hope they find it soon and get her on the path to recovery!

Oh and as far as the house bahahaha when O was put in the hospital I had to make an emergency stop for underwear and pj's for her as I didn't have any clean. Oh and when the police came to check our house the other night I am sure they were convinced the thieves ransacked the place. The house can wait. Rest up so you can process what you are being told and be strong for Grace.

Keep us posted. Hang in there.
 
Oh I know exactly what you mean by everything being a blur. So sorry that cute lil farmgirl is feeling so poorly I am glad the doc has kicked everything in high gear. Hoping for good results on the ultra sound and safe travel for your family to the children's hospital! Most of all I am hoping that sweet little baby girl of yours is feeling better soon!
 
Sorry to hear Grace is still so sick.

Hopefully the Children's will give you the answers need. I would take a change clothes for everyone in case of a stay.

I also being thinking about your son, do want him with you at childrens or would be better with family or friends.

I don't know dr what looking for. But we had a similar comment after Sarah's colonscopy when gi said I believe that it is crohn and could start treatment now but I want to ruleout a couple of nasties first.

Good luck and keep us posted.
 
:ghug: So glad they are getting things moving in the right direction.
So sorry she had to get so sick before they would do anything.

Hope the Chidlren's hospital can figure it out quickly and get her the help she needs.
 
Thanks for the tips and comfort.
My son will come with me. I couldn't breath with out him.
The children's Hospital is set up for families.
They assume the children's siblings will be coming along.
It's a great place.
 
Take extra pillows and blankets. When I was in the hospital with Stephen, I was freezing at night (was just me, Stephen was fine... but I slept with my jacket on!). And, pillows were in short supply!
 
OMGosh me too! The kids get those darn night sweats and we freeze our butts off. Good advice Tesscorm.

And don't forget the laptop!!!!!!!
 
Good luck tomorrow. We are thinking of you guys and praying they find some answers and start to treat her so she can get feeling better fast! I am happy they are at last taking things seriously. I am glad you guys have a good children's hospital there. Keep us posted. I will keep checking in tomorrow for any updates you have a chance to post.
 
Get some rest tonight, Farmwife! Will be watching for your update!

Hope the Princess (Grace, in case you were wondering! ;)) is feeling alright tomorrow! :ghug:
 
Thinking of you and Grace. Sorry you had to wait so long for them to do anything, I really, really hope that this is the beginning of them diagnosing and treating her. I'm holding fingers and thumbs for you all. :hug::hug:
 
Everyone listen........................Can you hear that................................
It's me screaming in the middle of a hay Field to get my anger out.:ymad:


So the update-

The hematologist called my doc and said they think she needs a few more blood test over a period of time to see what her levels do. :ybatty:
They think it's more of a GI problem.:eek:

The GI doc thinks it's a hematologist problem and they should handle it.:eek:

My doc thinks this is crazy.:eek: He said we'll see what the ultra-sounds says.:yfaint: The doc put his personal cell number on the order and is HOPING to hear something by four.

What a wild roller coaster ride. I want OFF!
She's 4 1/4 pounds down and still NOT pooing normally.:thumbdown:
My worry and question to you all is........will an ultra-sound show anything?
 
How is Grace feeling today? Oh I just hate all the hurry up and wait involved when a little one isn't feeling well. I agree with crohnsinct camp out til you get answers. I'm so sorry, I know this process has to be taking a toll on all of you, I hope the docs can agree quickly as to what the next step should be.
 
Yes Sarah ultrasound showed something, but our gp at the time appears not to have read the whole report. Fired him:ybatty:

GI who read it 7 months later said it shows imflammation.:ybatty::ybatty:

Was the ultrasound of the stomach area?
 
Catherine- It's of the whole GI track. What ever that means.

The one BIG blessing is the doc seems to have finally got the message that something is wrong. Well of course it had to show up in the blood work.:ybatty:

Clash- Grace seems more active today. I think the liquid diet is helping. What does that tell ya.:yrolleyes:

crohnsinct- my tent is packed!!! GI doc's number is on speed dial.
EVERY LITTLE THING WILL BE REPORTED AT ONCE!!!!!!!!!!!!!!:cool2:
 
The ultrasound didn't show anything for Johnny, but I am not sure what they were looking for. I am sure if she had an obstruction or severe inflammation it would show. He had a CT scan, MRE and ultra sound. None of them showed much besides small bowel loops and mesenteric adentitis which at the time they said could be caused by a virus. I don't feel like any of those tests got us anywhere. It wasn't until he had the scopes that they gave us any information or treatment. I will say that Dr. Kunde's office had him scoped in a week once we were transferred to them. There were things in his blood work and stool tests that worried them. I would make sure someone is taking responsibility. If GI thinks Hemo and Hemo thinks GI no one may be on top of this. I would want my primary to push them. My primary told me she would have my son admitted to the ER and get scopes done then if she had to. And she said she has had to in the past to get a patient seen.

Keep pushing, your farm girl should not be suffering like this as long as there are tests left to run.

Good luck, let us know.
(((((HUGS)))))))
 
Stephen's ultrasounds showed thickening of the intestinal walls (inflammation), they also looked at surrounding organs (ie liver) for indications of problems, I 'believe' it will also show if there is a blockage...

OMG, I just can't imagine how frustrated you must be!!!

These are the questions I would want answered...

From the GI:

- Why does he think it's the hematology problem? He probably won't commit to a firm answer dealing with another specialty but then why did he refer Grace to a Hematologist to begin with? What hematology disorder does he think could be causing the GI issues?
- He obviously thinks the GI issues are only a 'symptom' of something else, not the 'source' of the problem, so what hematology disorder? And why/how does it cause Grace's GI symptoms?


From the Hematologist:

- Why does the Hematologist disagree with the GI's answers given above?
- Given what Grace is dealing with, even if he disagrees with the GI, why will he not follow up the GI's thoughts?
- To decide to NOT to follow up on the GI's thoughts, Hematologist must be pretty certain the GI is wrong; what is he basing this decision on (ie what tests are proving him right and the GI wrong)

And, back to the GI:

- Given the Hematologists answers above, why doesn't the GI follow up on what the Hematologist said? Again, GI must be must be pretty certain the Hematologist is wrong; what is he basing this decision on (ie what tests are proving him right and the Hematologist wrong)


It SHOULD be easy enough to get these answers but we all know it's not! :ymad: So, I would start with asking her doctor for these answers (perhaps, even asking if the questions make sense???); if you're not completely satisfied with what you hear, I would tell the doctor you're heading down to Devos anyway and I would sit in ER until I got the answers... Someone correct me but the ER would have Hematologists and GIs on staff/call, right? You may be in ER for hours and hours but, as long as that seems, it will be less than weeks and weeks!

Just my thoughts... :ghug:
 
So sorry you are having so much trouble...darn Drs and their egos. I hope you get to the bottom of this very soon! Need to lock the GI and Hematologist in a room and keep them there until they agree to find the problem together! Yall are the ones suffering while they juggle the issue!
 
Tesscorm- The hemo said that they feel the test results are because of her GI issues. They want to more MORE labs "off" before they see her. :eek:Good Q's to ask. Thanks.

NMMom- Bring some Tylenol when you come, we have plaster walls here.:lol2:
 
So sorry youre having so much stress and confusion ! :(

I will tell you tho, the very last doctor we were sent to in our quest for a diagnosis for Gab was a Hematologist; one of the other docs sent us there because he suspected Leukemia due to her blood tests. It's the Hematologist that sent us back to the GI doctor and said it's probably Crohn's ! We had her diagnosis within a couple of weeks after that !
Maybe it's a blessing in disguise that this is happening to you as well and lil Grace will finally get a diagnosis and proper treatment and begin feeling better ?
Big hugs
I know this feeling and frustration and anger all too well :(
xoxoxox
 
If she gets any worse I would take her to the children's ER. Caitlyn's ultrasound did not show anything. What about consulting the mayo clinic? You guys are not so far from there. I would call your insurance and ask them if it is a possibility to go there. They are great. Usually you go and stay for about a week in a local hotel and they run a million tests until they figure out the problem. We almost took Caitlyn there when she had so many issues with the medications. She ended up in the ER in Manhatten and saw a doctor there that w finally able to help somewhat but if we hadn't found him we would have gone to mayo clinic.
 
One thing I learned insist the two specialist " talk " to each other since you only have one kid with an issue. Tell they need to come up with a plan together because right now nothing is being done and she is still sick.
This work for us when Rheumo and Gi were playing a similar game.
Good luck
 
Oh my goodness - I haven't turned the computer on all day - and look what has happened. I am glad they are finally taking you and Grace seriously, poor, poor little thing having to get so ill before they will do anything. I am thinking of you and Grace as much as possible and sening good healing thoughts your way. Please keep us updated whenever you can. Bi big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
How frustrating for you! Why the doctors can't just talk to each other and sort something out, I don't know. :ymad: How can they want to wait again to see if the blood tests get worse - how bad will they let them get? Hope they see sense soon!!!
 
They did the wrong test.:angry-banghead: That's right,:angry-banghead: THE WRONG TEST!:angry-banghead:

I called the nurse to question about why in SAM HILL did they just do the ultra-sound of the liver and kidneys and not anything else.
The nurse replied, WHAT, I filled out the WHOLE GI TRACK.
She said I'll call you back and she did within minutes.
She said the Doc will be calling your GI by 5 tonight. He then will call you.
Our medical bill are mounting and now we have to pay for this also. :ywow:
I'm so mad and disappointed that I could sit and cry.:frown:
The blessing is that Grace seems to be rebounding a bit since doing EN full time.:heart:
 
Seriously?!!! That is unbelievable. And you have to trust these people to take care of your kids! Hope they sort it asap. Glad Grace is feeling a little better on the EN
 

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