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March 21, 2007 at 9:10 am #28033

Anonymous
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Well…we had our GI appt yesterday and Corinne has not gained any weight since our last visit with them, therefore, they are finally going to do an endoscopy to rule-out any other underlying abnormalities. They also got a real clear picture of Corinne’s discomfort while we were in the office…more then ever before!! Corinne was arching and crying in pain the whole time! They got to witness her refusal of feeding regardless of her evident presence of hunger. It was heartbreaking for me and I think they saw that and so they were a little more “in tune” to my concerns then my previous experiences! We got the endo scheduled for this Friday b/c I was persitent with them in wanting to get “answers” Hopefully we will, we’ll see what pans out!

They also did some further blood work yesterday. They’re testing her for celiac disease. I found this interesting as this is usually an inherited disease in which the body cannot digest gluten (which is contiained in most wheat products). The GI spec stated, however, that celiac is being seen more and more in kids that don’t have any family history of the disease…I found this very interesting. The good news is that if this is the underlying problem, then I think we will be able to easily manage it with the proper learning tools, etc about the disease! They are also going to do a sweat test on Corinne after the endo to rule-out cystic fibrosis. This I was VERY suprised about and also very scared as to why they wanted to do this. Because of Corinne’s failure to thrive, digestion issues, and frequent upper repiratory congestion, they want to be sure that this isn’t the underlying issue. On one hand I’m scared, on the other I’m glad they’re covering all the bases to find answers! I had the quad screen that looked for CF while pregnant with Corinne and it was negative, so I don’t think this will be an issue, but still a bit frightening!! I also think that we will be doing the ph probe test after the endo to see if her reflux epidsodes are a contributing factor to her coughing, choking, gagging, night waking…which will be interesting to see!!

We changed her from Lactulose to Miralax, which I’ve heard works better anyway and is less gas forming. We did, however, keep her on her current Prilosec and erythro doses until after the endo. If it comes back normal I will be sure to address the dosing, etc. Corinne is actually on the right dose (7mg 2x/day and she’s 7.9kg) but marci-kids recommends 3x/day administering so I’ll mention that to the GI team and see what their thoughts are!

So that’s where we stand for now…I’ll keep you posted. Thanksa gain for all your thoughts!!

p.s. my apologies..i just realized i posted this under the HELP topic.. I’m not too savvy when it comes to the computer….

March 21, 2007 at 9:37 am #28040

Anonymous
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Hi Brooke,
Thanks for the update. I’m glad the doctors were able to witness what it’s like for Corinne. It sounds like they’re being very thorough. Hopefully they’ll be able to give you some answers soon. Good luck with all of those tests! I understand how scary they can be. The not knowing is always the worst.

Again, good luck. I hope you get some answers soon. Keep us posted.

March 21, 2007 at 10:13 am #28051

Anonymous
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Brooke, My son had the sweat test for CF due to FTT at almost the exact same age Corrine is.

As tests go, it was a fairly easy test to do. They put heat packs on his forearms for a few minutes and then put little sweat collectors on his forearms and we wandered around the hospital for 15 minutes or so. They told me to bring extra layers to put on him so that he would be toasty warm and it would help him sweat. The only time that he was bothered by the process was the putting on and taking off of the arm bands – he didn’t want to hold his arms still long enough for that.

BTW, the sweat test came back negative. It turned out that his FTT was due to protein intolerance – and now I suspect, gluten intolerance also. Does Corrine’s Enfamil Gentlease have gluten in it?

March 21, 2007 at 12:02 pm #28060

Anonymous
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Brooke,

Good luck with the tests. Sounds like you have a good plan. Christine (kevieb) is an amazing resource on her for celiac- a few of her kids have it.

Our ped also saw Hailey fighting feeds at the office, and it was what convinced him to refer us to a GI.

Keep us posted.

March 21, 2007 at 12:51 pm #28078

Anonymous
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That’s great news, not that she has to go through all of these tests, but that the gi is taking you seriously now. I hope all the tests are not hard on her and that you find the answers you need to help her feel better very soon.

March 22, 2007 at 5:06 am #28142

Anonymous
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It sounds like your appt was really positive…thats how it should be. Goodluck with all the tests…hopefully they will help make things clearer for everyone and lead to the right tx to help Corinne enjoy eating and grow

March 22, 2007 at 6:39 am #28151

Anonymous
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Hi Brooke… I can’t begin to explain how similar this sounds to what Q and I just went through. After Q turned year and it became apparent that the reflux was a big issue all around, our doctor too ordered celiac’s testing, CF testing… which I too found it very scary that they even mentioned it being a possiblity, and an endoscopy and ph probe. The ph probe came back so severe that the doctor didn’t believe the numbers… and she was on meds during this… meds that they said I was “over medicating”… so due to her ph probe results, FTT and weight loss, they decided to admit her and we stayed in the hospital for a whole week! They did lots of testing and all the tests came back negative… except for the obvious. The doc said that she had severe GERD. The endoscopy showed damage to her esophagus… the doc was pushing for a fundo and jpeg… I told them to hold of on the jpeg and let’s just see if the high calorie formula works. He agreed… no fundo at that time… he felt that the damage wasn’t too severe… but her reflux is.

Anyways, I totally understand what you are going through and I kid you not, a couple months ago, i was there… It’s so weird… almost like a blast from the past. Hang in there. I do hope that you get some answers from the testing. Don’t forget to update us… I’m really curious to see what they come up with.

-Sarah

March 26, 2007 at 1:03 pm #28510

Anonymous
Inactive

Hi everyone,

Thanks for your feedback and for your concerns! We had the endo and the GI spec said that everything looked normal from what she could see. She did 3 biopsies and we should have the results by Tues or Wed. A part of me was relieved that there wasn’t anything serious found, but another side of me was frustrated b/c i want to know what the heck is causing all of this discomfort in Corinne!! Hopefully the biopsies will show something. The IgA test (test for Celiac disease) came back as a false negative, therefore, the biopsy will hopefully show if Corinne does indeed have a gluten intolerance. If this is the case, we would have the answer to all the problems she’s having….hopefully!!! I’ll keep you posted…thanks again for your caring hearts!!

March 26, 2007 at 1:29 pm #28518

Anonymous
Inactive

Brooke, how did you find out it’s a false negative (as opposed to a true negative?)

March 26, 2007 at 1:53 pm #28527

Anonymous
Inactive

That’s what the doctor said it showed. She said that the level was low, therefore, it couldn’t be ruled out that she has the gluten intolerance and that’s why the biopsy would hopefully give a more definitive result.

March 26, 2007 at 4:51 pm #28551

Anonymous
Inactive

did your doc mean that she is IgA deficient? one of my kids is IgA deficient and we had to do specialised testing to know whether or not he has celiac disease. he has the gene for it, but no disease at this time. there is no history of celiac disease in either kevin’s or my families—-and 3 of our girls have celiac disease. they have been gluten free for over a year, now. only one of my girls had what you would call “typical” symptoms—-but that is not how we discovered the celiac. it was suspected in one of my twins because of some rashes she had (it was suspected because of my research on the internet). we tested the rest of the family because we knew it was genetic, and discovered the two other kids had it.

gluten is contained in ALL wheat products—including spelt. it is also contained in barley and rye. most oat products are not safe for a celiac either—they are cross-contaminated, although you can, for a price, find guaranteed gluten free oats. my girls have no problem with these. if it turns out your daughter has celiac, let me know, i can direct you to some good products, cookbooks, and gluten free companies. gluten free is not difficult, but it can be inconvenient at times.

March 26, 2007 at 5:53 pm #28560

Anonymous
Inactive

Chrisitine,

She didn’t say “deficient,” she said “low.” I’ll have to get the scoop once I talk to her on Tues/Wed b/c now I’m confused! Thanks for your feedback and I will surely keep you posted b/c if she does have celiac I will need all the resources I can get! Thanks again!

March 26, 2007 at 8:05 pm #28583

Anonymous
Inactive

did your doc mention that celiac tests are not very accurate on really young children? do you know what tests he ran? kassie had a biopsy before we suspected celiac, but it did not show celiac, tianna’s test showed no damage, but it did show one area of increased intraepithelial lymphocytes, the ped gi did not biopsy molly. my girls were all diagnosed with the Ttg blood test. when the doc tested our whole family, he ran a total IgA serum and a Ttg IgA.

i really hope your daughter does not have celiac, but if you HAVE to have an autoimmune disease, celiac is the only one that can be controlled completely with diet.

March 27, 2007 at 2:06 am #28634

Anonymous
Inactive

I hope you find some answers. i know I felt the same way when we had Lucas’ ph probe and endo. I was so happy to learn that there was a REASON for all this we were going through.

That said, my son is gluten/wheat (and several other things)intolerant. He’s had the blood test for celiac which came back negative, yet really can’t tolerate foods with gluten and wheat in them. We have no known family history of food allergies or celiac. His allergy tests actually showed that his tendency toward food allergies was very low. Our allergist says to try reintroducing foods every 6 months. I hate doing it, but he is hopeful that Lucas will tolerate some of these foods by age 4 or 5. So we follow a diet that someone with celiac would be on, and we’re very strict about it. I treat it as if he had celiac or a full blown allergy because his reactions are so severe. His reactions, however, are very behaviorial and involve not being able to sleep and I assume severe gi upset. No rashes or raspy breathing or other obvious signs– just a lot of screaming and crying and writhing around for many many hours.

Again, I hope you find some answers and that your little one is feeling better soon!

March 27, 2007 at 2:07 am #28635

Anonymous
Inactive

Christine….did you mean that celiac blood tests are’t very accurate on young kids? Lucas was tested at around 18 months of age. Did you read that somewhere? I’ve asked our allergist, but he said he felt the results were reliable.
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