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About Momof2xy&2xx

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  1. She is not currently gluten free - right now, the doc wants her *lactose* free, to rule lactose issues out. The doc mentioned the IGG test, but said it wasn't very good, so wants to do a genetic test instead, and then a scope.
  2. Hey again ladies! We saw the German peds GI today - here is our update: 1: The german GI dude is AWESOME. His English is great (we knew that though - another of our friends sees him), and he was laughing and joking with us. He spent more than an hour with us. 2: He agrees that obviously SOMETHING is going on. The specific things that are concerning: a: she isn't growing b: she has some lab values that are not normal - her liver enzymes, and alk phos is elevated, and there is fat in her stool. her total protei was low, creatinine was so low it wasn't even detectable, and her glucose was 75 about 45 minutes after burger king (um, yeah - he thought it was a fasting value at first). c: Her stools are abnormal (extremely smelly and large, roughly the consistency of a cowpie) 3: he did an abdominal ultrasound in the office today, and all of her organs look good, and there is no obvious infection present 4: he has a game plan (finally!). first, he is having us go lactose free this week , just in case this is a lactose intolerance issue (possible, but not necessarily probable, though it is an easy fix so we're trying that first). This means I have to wean *now* - I suppose it isn't weaning if you stop cold turkey, but.... after that, he is going to check her for a milk/soy protein allergy, as that can sometimes cause the kinds of issues she's had. he's also going to recheck some of her labs (including a fasting glucose) and order the genetic testing for celiac. since she is IGA deficient, the original test they ran isn't going to tell us anything (it came back negative, but was an IGA test apparently?). if all of that leads us nowhere, she will be having an endoscopy to try to figure out what is going on. we go again next friday, after the week's trial of lactose free. he said that once we get this figured out, she should grow normally and catch up an be normal size! YAY! SO, on to the questions: what does it mean that she is IGA deficient? Does the whole "she's IGA deficient so the IGA testing for celiac isn't going to tell us anything" make sense?
  3. Thank you so much for your responses! This weekend, Violet got some sort of a stomach 'thing' and has been vomiting (but strangely, only at night, and she is requesting food/playing normally, though she is tired today - i think it was from dehydration, as once we got her back to hydrated @ the doc today, she seems much better). While we were at the pedi, we talked w/ two docs - the one who saw her today (same team/different doc than her usual) AND her normal pedi. The doc who saw her today strongly suspects celiac at this point, but wants to rule out a few other things (cystic fibrosis, pancreatic insufficiency) so they are sending off *more* lab work and referring her to the gastroenterologist. This sucks. Poor baby - between the workup and whatever this bug is (it seems so odd for her to only be vomiting at night, but she vomits until she vomits bile and dry heaves - poor kiddo ) she's pretty miserable right now. I hope whatever this is is diagnosed quickly so we can treat it. Violet has done (baby food wise) what all of my older kids have done - when she is old enough to EAT it, she can have it. She never took baby food from a spoon, rather, she started off with soft banana, avocado, cheerios (wheat!) and the like, and progressed to other easy to eat finger foods and now eats (literally) everything we do. The only thing she will allow us to spoon feed her is the fortified oatmeal we give her in the mornings (this is where we dump in a lot of the fats/calories the pedi wants her to have extra because she isn't growing well). She has never really liked anything toooo carby (except cheerios) - she's the first of my kids to turn down bread, crackers, goldfish etc. We live in Germany, so all of the wonderful bakeries around make it easy for us to get fresh bread with dinner almost nightly - guess that will have to stop, huh? As to me - I have had gut issues, but nothing severe enough to go to the doc about - more just annoying than anything. However, the suspected cause of her IUGR was my extremely severe hyperemesis - I did not gain any weight(rather, I lost quite a bit) at all during my pregnancy, and was admitted several times for extreme dehydration. The running theory is that I was so malnourished that there just wasn't anything for either one of us to 'eat'. If this does pan out to be celiac, how exactly do we do this? I have *no* clue how to go about eliminating gluten. Is this something that our entire family would need to avoid? Is it, like nut allergies, where cross contamination causes an issue? What about if, say, a sibling was eating xyz food w/ gluten and vi doesn't eat it but is around it - woudl that cause issues? (I'm sorry -I know I sound stupid, but I really am totally clueless. I'd never even HEARD of this until her doc mentioned it as a possible cause for her growth failure).
  4. Hello! I have a complex situation, and I am starting to do some research, and stumbled upon this site. My daughter, was born 1/2010, full term, weighing in at 5 pounds, 0 oz/19.25" long - she was diagnosed with IUGR (Intrauterine growth restriction) and poor interval growth and I was induced at 37.5 weeks because of it. She did fine, other than being extremely small, and came home with me after a brief stint in the nicu to be sure she transitioned well because of her size. She grew well, and was up on the charts in the 25th percentile by 3 months. She had a significant hypotonia (floppy muscles) issue that was evaluated (it was evaluated at 2 months, and a big workup was started at 6 months) by a neurologist. She started meeting milestones at about 8 months, and is now walking (she started walking *on time*). Her testing all came back negative (good MRI, good EEG, no turners, praeder willi, normal thyroid, cbc, normal number of chromosomes, metabolic testing came back wierd for a long chain fatty acid metabolism disorder, but the repeat was normal), and we were released back to our normal pedi. At about 6 months, she stopped growing. She is now 14.5 months old. Since July last year (at her 6 month visit), she has gained about a pound and a half, and grown a bit over an inch in height. She has not grown at all since late January. Obviously, this isn't normal for the time frame between 6 months and 14 months, and she has fallen completely off the growth charts for height and weight - she now weighs 16 pounds and is 26 5/8" long - about the average size of a 6 month old. She has the proportions of a child her age, but is just super small/short. If you put her into a room with no size indicators, she'd look like a normal toddler (until you see her next to a child her own age, or furniture that would indicate size etc). She has been labeled "failure to thrive" since her 9 month pedi visit, when we were told to 'add fat to *everything* she eats' which we have done. Her doc is doing a workup to check for a myriad of things, celiac included. Yesterday, we got the results of her fecal fat back, and they were elevated. The doc sent some sort of a blood test for celiac (along with the other testing she ordered) off last Wednesday, and said we should get the results from it this week coming up. The doc said that the increased fecal fat could strongly indicate celiac. I can't figure out how the picture I'm getting from celiac fits at all with her though. She was a constipated baby, refluxy, but no symptoms and off meds for quite a while. She normally poops 1-2x per day now (sometimes three, but NORMALLY, she'll poop in the evening every night, and then have a few other random stools in the mornings, or a second night one a couple of times per week), and it is normally soft (appropriate for a baby who eats solids, but a good portion of her diet is still breastmilk), but NOT diarrhea/loose. She is a terrible sleeper (never more than 6h straight, usually wakes 2-3x per night to eat, and is *actually* hungry). She eats more than my 3 year old does (seriously). She never stops eating. I've never seen a kid do this before. Besides that, she's a normal (but very, very short) 14 month old. She is developmentally appropriate, responds when you talk, understands, etc- she's just super tiny. So, after my long diatribe, does this picture 'fit' in the celiac picture? Honestly, the doc did it more as a 'just in case because I don't know what else to think' sort of thing, from what I understand. Does the elevated fecal fat have other causes besides celiac? This is the direction she pointed us in after that test, and we are pending the blood test results now. Thanks guys - sorry for the long, rambly post.
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