My godchild
I'm posting this entry that was actually written by my lifelong friend who is the mother of my godchild. They've been having a rough time. Disclaimer: Some of this may be TMI for those who have a low tolerance for diaper content talk (there's only a little of that, though -- but I'll go ahead and spoiler code it for the weak). Feel free to comment or shoot me an e-mail and I'll connect y'all if you have any WoWs (words of wisdom) about this ... she's not looking for medical advice but could use some shared experiences or commiseration.
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Our pediatrician is suspecting Celiac's Disease as a possibility for our daughter. How would this present in a 9 month old baby? I'll try to make a long story short. She has been pretty miserable since birth. She was diagnosed with reflux and a dairy intolerance (green mucousy poop with blood) at 2 months and has been on Prevacid solutabs since that time. I have been exclusively breastfeeding my daughter (I cut dairy out of my diet), and we started solids when she was 7 months. Since starting solids, I have seen no improvement in her symptoms. She is perpetually fussy. We can't put her down without her crying. Not every night, but a lot of nights, she will cry inconsolably from 9 p.m. to 2-ish a.m. This is even with us holding her. It's definitely worse at night. She is fussy but ok in the mornings and during the day. She has had a few things medically that have been weird. She had an unexplained very high white blood cell count, but this went away with two shots of a heavy duty antibiotic. Most recently, she got a horrible rash. When we brought her in, the pediatrician looked at it and listened to a tape of her nighttime crying and said she should not be crying like that at nine months. She is running a bunch of tests. We won't get most of the results back for a week. Some preliminary results are suggesting inflammation. She wants to send us to a new pediatric GI specialist. What kind of tests should we ask for? I read that the test for Celiac's is unreliable in infants. I should add that she is not malnourished. She looks pretty healthy, albeit tiny. She is in the 10th %ile for weight. [Note from Eliza: To me she looks like a delicious chunky monkey, but what do I know?] Also, would she be better off on hypoallergenic formula if I can get her to take it? We are really, really desperate, so any advice/info is very much appreciated.
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It's Eliza again. Feel free to pass this along to anyone you think might have some insight or at least be able to tell my friend she is not alone and it will get better. Thanks!
posted by eliza @ 8:47 AM
10 Comments:
Eliza,
This sounds like a problem one of my favorite blog gals, Julia, is having with her young daughter Caroline. Julia has documented many of Caroline's issues, which sound an awful lot like your goddaughter's problems. You might pass this link on to your friend...it might help her a bit.
http://uncommonmisconception.typepad.com/home/2007/12/operation-slow.html
Was forwarded your blog to see if I might be able to help :)
Has she been tested for yeast? It can be such a terrible problem and can present itself in numerous ways, including ways mentioned here.
My 3rd fought it for a lonnnng time but we finally reigned victorious! I thank God for leading us to people (other Moms) who helped us figure it out. It never even crossed the peds mind.
The things we learned through his experience have enhanced our entire family's health! Would love to talk with Mom if she's interested in learning.
theglycofamily at gmail dot com
I am an occasional reader and wanted to respond about your godchild. I have no real knowledge about celiac, but I do have a 2-year-old with a severe milk allergy and other food allergies. I am pretty sure that the prevacid solutabs have dairy in them, so your friend should check with her doctor/pharmacist. Also, she may want to look into a pediatric allergist. I am not sure how they know the difference between allergy and intolerance--maybe it is worth doing allergy tests as well? My heart goes out to your friend--it is horrible to see your baby in pain and not know how to fix it. But persevere and keep seeing specialists until you get answers. And she should trust her instincts. I don't know why it is, but they're usually right. Good luck!
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Oh if there was yeast just a month ago, I'd bet anything it was still in the gut. All yeasts start in the gut and once they are on the skin, it has definitely grown like kudzu on the inside. It takes a while to kill. The surface symptoms can often be tamed a little but you gotta go all the way to the root for the problem to go away for good. This takes many months of focused effort...continuing even if the symptoms SEEM better.
Poor babies...SO many deal with this problem because of the rampant use of abx in pregnancy, labor, birth, post-partum, for the sniffles, etc....
Here's to ALL babies being happy & health!
Long-time reader, first-time responder ... :)
An ex has Celiac disease. The blood test for Celiac is unreliable for all ages -- the best you can do w/r/t Celiac, as far as I understand it, is to eliminate gluten from the diet and see if there is any improvement.
I'm not familiar with Celiac disease in infants, but I know the Celiac disease center at Columbia Univ. is a great resource. It may be helpful for your friend.
http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm
Just wondering, when you took dairy out of your diet, what did you replace it with? Many people who are allergic or sensitive to dairy are also sensitive to soy. I had to take both dairy and soy out of my daughter's diet when she was a year old and replaced it with rice milk -- huge, huge improvement. She is also sensitive to wheat, but tested negative for Celiac's.
I did not eliminate soy from my diet, and honestly, I probably haven't done the greatest job of eliminating dairy. I don't eat straight dairy like milk, ice cream, cheese, butter, etc., but I haven't been a label reader. I am sure a lot of the foods I eat have dairy as an ingredient or whey or casein. E has projectile vomited after one experiment where we tried soy formula and after our babysitter accidentally topped a breastmilk bottle off with enfamil lipil.
I am the occasional reader who posted above.
Oh gosh. Projectile vomiting of the enfamil lipil combined with the other symptoms definitely sounds like it could be milk allergy, and if it is the reactions could continue to get worse. I would definitely pursue allergy tests because if you are still eating stuff with whey and casein in it, and he is taking the prevacid solutabs (with dairy) he is getting a decent amount of exposure. Also, I would think with allergies and with celiac you would want to avoid introducing (and actually even eating them yourself since you are breastfeeding) the other highly allergenic foods--peanuts, tree nuts, fish and shellfish. This is why I went to hypoallergenic formula when my son was diagnosed. It is not hard to keep the stuff out of his diet since he's never had it, but I had a hard time with the eliminations myself.
I just want to thank everyone for your comments.
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