9 Mo. Old Daughter--desperate For Help

[mom2stelly]

Our ped is suspecting celiac's disease as a possibility for DD. How would this present in a 9 mo. 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 mos., and has been on prevacid solutabs since that time. I have been exclusively breastfeeding DD (I cut dairy out of my diet), and we started solids when she was 7 mos. 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 pm to 2-ish am. This is even with us holding her. It's definitely worst 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 ped looked at it and listened to a tape of her nighttime crying. 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. 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

[ptkds]

That sounds like my youngest dd! But I didn't breastfeed her and she was on hypoallergenic formula by about 2-3 months old. She would just cry, she had bloody stools, she spit up all the time, etc. In the first 1-2 weeks, I did give her Breastmilk that I pumped. She seemed more uncomfortable after having my BM than the formula ( I don't make enouch BM for my babies, so I had to supplement).

At 14 months, my dd had a second endoscope done. All her celiac tests were negative (but she was VERY gluten-light since the rest of us were already gluten-free), but the dr found stomach ulcers. So he said she most likely had celiac and she was just too young for a positive test.

You can try a gluten-free diet on her. If you want to continue nursing, you must cut out all gluten from your diet (dairy may help, too). Be careful of cross-contamination and trace amounts of gluten. Check all your lotions, shampoos, toothpaste, etc as well. If you prefer, you can try a hypoallerginic formula such as Allimentum. My dd wouldn't drink the enfamil kind of formula, but she loved the Allimentum (made by Similac).

Ask for the full Celiac panel and the gene tests. Someone else can give you the specific tests but I don't remember what they are all called.

Good luck and keep us posted!!

[vanillazeis]

Our ped is suspecting celiac's disease as a possibility for DD. How would this present in a 9 mo. 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 mos., and has been on prevacid solutabs since that time. I have been exclusively breastfeeding DD (I cut dairy out of my diet), and we started solids when she was 7 mos. 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 pm to 2-ish am. This is even with us holding her. It's definitely worst 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 ped looked at it and listened to a tape of her nighttime crying. 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. 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

I am probably the biggest breastfeeding enthusiast in the world, so my opinion is probably a bit biased I breastfed my first kiddo until she was 20 months, no problems. I have just recently put my almost one year old (1-12-07) on formula, and it was the worst mistake of my life, although i didnt have an alternative. I think if you are already seeing problems while your breastfeeding try an elimination diet, and figure it out, if you are still comfortable with breastfeeding. My little boy was only reacting to green beans through my breastmilk, but when i put him on soy formula (we skipped milk-based) his nose ran like a faucet for the first hour after i gave him the first bottle, he broke out in hives, exzema, vomiting... everything that could possibly go wrong. We have switched to hypoallergenic formula, and although it's better, he still has a red bumpy rash around his mouth, exzema on his face and his bottom. I cant keep him from scratching when i change his diaper, even last night i changed his diaper while he was asleep and he was still scratching in his sleep! It's alot more traumatic on me than it should be, i already didnt want to supplement, and now i have to watch him suffer. It really sucks... anyway enough about that.

I'm surious why they have diagnosed your daughter as lactose intolerant and not milk protein allergic? My sisters baby had the same symptoms that you describe and her daughter was diagnosed as allergic, not intolerant. Have you introduced gluten? Has she had enough of it to do damage? My daughter is diagnosed with celiac, and my first clue should have been her distended abdomen, she also had a seizure at nine months after eating some cheerios. My daughter had refluz, but was a very happy baby. She would throw up and then smile... never fussy. She was however tiny at one, not malnourished, but she went from being a very fat baby 9'6oz at birth, to a pretty petite one year old.

My daughters GI specialist told me that with my little boy we should wait until he turns one, then start him on gluten, and that we will test him at 18 months. He said he must get gluten everyday, and that it is still unlikely that he would be diagnosed from that test, as testing is VERY inaccurate anyway, but especially in little ones. We've actually decided to wait until he's two and a half, then trial for 6 months and test at 3. That decision is only because we're expecting baby number three, and we want to trial both babies at the same time, because our home is gluten-free.

I dont really think im very helpful, i dont have any advice, but that is my experience, and how things turned out for us.

Where is the rash!? is it possibly DH? or could it be exzema, from food allergies?

[mom2stelly]

Thanks for the responses and info. My guess is that I need to do a total elimination diet and not just dairy elimination to get to the bottom of this. I did try mixing a little nutramigen in with a breastmilk bottle about a month ago when my pumping output was down, and that little rascal tasted the difference and refused her bottle. I haven't tried alimentum yet though.

vanillazeis, the dr. actually did diagnose her as milk protein intolerant. This was based strictly on the green mucousy poop with blood. As far as trying gluten, I have noticed that when I eat HealthNut bread, DD is extra fussy. We were very cautious with introducing solids. For the longest time, all she ate was carrots. I will say that the double EIs started after we began introducing solids. The only gluten I know of that she has directly ingested are a few cheerios and gerber multigrain apple vanilla cereal. The rash appeared just after she ate the cheerios and started on the cereal. I don't know how to attach a picture, but it was all over her trunk, under her arms, and on her neck. It looked like raised welts, which I am guessing were hives. The rash is just about gone, but she now has patches of eczema on her elbows and on her leg.

So it sounds like the endoscope is really the only way to diagnose? I fully expect this blood work to be inconclusive. Not to be negative, but I know the false negative rate is pretty high in infants.

Thanks again for the responses.

[vanillazeis]

Thanks for the responses and info. My guess is that I need to do a total elimination diet and not just dairy elimination to get to the bottom of this. I did try mixing a little nutramigen in with a breastmilk bottle about a month ago when my pumping output was down, and that little rascal tasted the difference and refused her bottle. I haven't tried alimentum yet though.

vanillazeis, the dr. actually did diagnose her as milk protein intolerant. This was based strictly on the green mucousy poop with blood. As far as trying gluten, I have noticed that when I eat HealthNut bread, DD is extra fussy. We were very cautious with introducing solids. For the longest time, all she ate was carrots. I will say that the double EIs started after we began introducing solids. The only gluten I know of that she has directly ingested are a few cheerios and gerber multigrain apple vanilla cereal. The rash appeared just after she ate the cheerios and started on the cereal. I don't know how to attach a picture, but it was all over her trunk, under her arms, and on her neck. It looked like raised welts, which I am guessing were hives. The rash is just about gone, but she now has patches of eczema on her elbows and on her leg.

So it sounds like the endoscope is really the only way to diagnose? I fully expect this blood work to be inconclusive. Not to be negative, but I know the false negative rate is pretty high in infants.

Thanks again for the responses.

From what you've told us I'd really start with an allergist rather than a GI dr. A hive like rash, or hives is a syptom of food allergy, not food intolerance. There is a pretty big difference. Allergies have the potential to be immediately life threatening, as in anaphylaxis. While celiac does have the potential to be life threatening, it's more of a long term exposure that could do serious damage. From the amount of gluten you say shes had i would be more willing to bet that it is a food allergy rather than celiac or even gluten intolerance. Wheat is one of the top 8 food allergens, as well as milk, soy, egg, fish, shellfish, peanuts and treenuts. I would start with investigating those things to see if they bother her. Corn i think just barely missed the top 8, so i would be careful of that one as well. See an allergist and make them do a RAST test on her... it's a blood test that tests for food allergies. It's way more accurate than skin testing, although just like the celiac panel, it is extremely inaccurate in kids. Our allergist is actually the one that diagnosed Bayleigh's celiac, he ran the celiac panel with the RAST testing, so get an allergist to run RAST testing on the top 8 + corn, and a celiac panel. Hives=allergy. You can give her benadryl to make them go away... theres a website Open Original Shared Link check that out, that should give you the correct dosage of benadryl for your childs weight and age. I HIGHLY recommend a pediatric allergist. If your dealing with a serious food allergy it could get alot worse very fast. You may need to carry epinepherine (epi-pens) for her just in case. Do ya'll have allergies in your family? It doesnt have to be food allergies, it can be seasonal or environmental... or maybe asthma?

[skikat]

Get your dtrs stool tested from enterolab. They can test for gluten intolerance, as well as soy and casein. It is easy! and- you don't have to do a biopsy at such a young age. Also, go on ebay and order some Neocate formula (hypoallergenic) It is cheaper on ebay and it was a miracle for our son who is now 11 months old. He had all the same symptoms you are describing. I breast-fed for six months and then started the solids and milk-based formula. It wasn't until we changed his formula and went gluten-free that the crying, fussiness, (inconsolable!!), nose running, hives, excema, diareah,etc. ALL went away. He smiles now, plays, babbles, has great formed bowel movements and is a completely different baby. It really has been a miracle. He has also seen a pediatric allergist for all the "official" testing for IgE allergies (for which he has none). His problem all along was gluten intolerance which is an IgA antibody reaction (tested through enterolab). He had gene testing done on enterolab too, which showed him as having two celiac genes. We are so grateful for this forum for helping us and also enterolab. You should also consider that with the high doses of antibiotics that she received, she may have had candida overgrowth in the intestines. This is extremely painful and can also cause a severe "yeast" rash on her bottom. Often times when the immune system is compromised from damage by food proteins, it cannot fight off the "bad" yeast and it overgrows. You can find more info at enzymestuff.com. When our son had candida in the intestines, he would have high-pitched screams all through the night and arch his back in pain. It was a heart-wrenching time those first few months. You can also investigate or google great plains laboratory for more info on tests for yeast. Good luck and if you have any other questions let me know!

[Fiddle-Faddle]

Please research vaccines, as they can have some serious complications for at-risk babies. There are many vaccines your baby simply doesn't need right this minute, like Hepatitis B (unless you or she is an IV drug user). I understand the premise of vaccines, but the number of babies with horrible reactions has gone up exponentially with the increased number of vaccines. I don't think we are able to tolerate that many vaccines in such a short period of time. Also be aware that they don't vary the dosage of vaccine by the weight of the baby--your little peanut gets the same dosage as babies two and three times her size.

www.nvic.org is a good resource for vaccine information.

And I would try going gluten-free and continuing nursing (with you gluten-free, too) before resorting to Neocate. There are some babies who can't tolerate Neocate, either--and if yours is one of them, by the time you find out, your milk supply might be lower.

There's a thread from a couple of years ago you might be interested in:

Open Original Shared Link

It's awfully long, I know, but read through the whole thing--it really is very interesting and might have some similarities (minus the heart condition) with your baby.

[skikat]

I do agree with the previous post to try to continue breast-feeding if you can, as I am PRO breast-feeding if you can continue with a change in your diet. But, I had to stop breast-feeding due to going back to work and at the time. In addition, our son was having so many problems, now I know why. I've only since learned about celiac, etc. We went to milk-based formula after breast-feeding, although he still had some irritability and runny nose. It wasn't until we learned about Neocate from a Neo-natologist at the hospital I work at, that we found answers to our problems, in addition to a gluten-free diet. Neocate has worked wonders for us and you can maybe find a physician who has samples to see if your child can tolerate it. But, breast-milk is always best, especially for our little ones with compromised systems. I wish I had known then that the problem was gluten. I could have changed my diet and continued breast-feeding with pumping at work. Although, I am grateful for the 6 months that he did have, albeit it was difficult!!

[Guest Rosany]

Mom2stelly,

I am very new to this board as well but I just wanted to send big hugs your way and best wishes throughout this testing time for your family. Have a good weekend.

Hugs Hugs,

Rosa

[mom2stelly]

Thanks again, all. I am trying to make my way through the thread about the little girl posted above. Wow. That sounds truly awful. I figured out how to post a picture of the rash.

Well, maybe not-

[loraleena]

I am also biased since I am a lactation consultant. First off your doctor is wrong to say that your child is lactose intolerant. Your breastmilk is made up of mostly water and lactose. Lactose intolerance does not happen until later. What is really going on is that your child may be intolerant to another dairy protein, either casein or whey. Also, are you consuming gluten? I was not sure by your post. If you are, than your child could be getting gluten that way and getting sick. Is she eating any gluten products? If so, I would stop all gluten in your diet and hers. The tests may not show anything since she is only 9 months old. Please do not do formula. It really is bad for her gut. She needs all that good bacteria and immunity from you. Try no dairy (make sure the product is casein and whey free and no gluten.)

[Fiddle-Faddle]

Thanks again, all. I am trying to make my way through the thread about the little girl posted above. Wow. That sounds truly awful. I figured out how to post a picture of the rash.

Well, maybe not-

It works--just copy and paste into browser.

THat's quite a rash! What does the doctor call it?

[mom2stelly]

I am also biased since I am a lactation consultant. First off your doctor is wrong to say that your child is lactose intolerant. Your breastmilk is made up of mostly water and lactose. Lactose intolerance does not happen until later. What is really going on is that your child may be intolerant to another dairy protein, either casein or whey. Also, are you consuming gluten? I was not sure by your post. If you are, than your child could be getting gluten that way and getting sick. Is she eating any gluten products? If so, I would stop all gluten in your diet and hers. The tests may not show anything since she is only 9 months old. Please do not do formula. It really is bad for her gut. She needs all that good bacteria and immunity from you. Try no dairy (make sure the product is casein and whey free and no gluten.)

I'm sorry. I think I confused some people. The ped said she was milk protein intolerant, not lactose intolerant. Yes, I am sure I have been consuming gluten. When I first started eliminating dairy, I ate a lot of turkey on wheat sandwiches. She was still pretty fussy, which I attributed to her reflux. I would like to avoid formula, but I feel like I must be eating something that is hurting her. I have not yet tried a total elimination diet, but that's partly because it has been so hard for me to eat enough while breastfeeding. I really don't want to lose any more weight.

The dr. said the rash seemed to be atypical hives, but she was concerned enough to order a bunch of labs. We still don't have the results back. The only thing we got back is that her erythrocyte sedimentation rate was 44, and it should be between 0-10. The dr. says this just indicates nonspecific inflammation.

[todzwife]

wow that is some rash!

Is is only on her trunk? Could it be from detergent? I have a friend who's child is allergic to detergents and would get rashes.

Feel free t o ignore me

[mom2stelly]

It's not from detergent. We've been using the same stuff (Dreft) since she was born. We saw the pedi GI specialist yesterday. He says all signs point to milk protein allergy--not celiac's. He says she hasn't been exposed to enough gluten. He says either do TED or try alimentum. I bought a small container of alimentum, and it smells TERRIBLE. I don't see how she will drink this stuff.

[ptkds]

yep, Alimentum does smell horrible. But my dd really liked it. And after a while, you get used to the smell. One major plus is it won't stain clothes!! Also, the powder stuff contains corn and the ready-to-feed doesn't. My dd couldn't handle the powder, but the RTF was fine. Just be careful because Allimentum still contains milk protein, it is just broken down. But if the allergy is severe enough, she can still have a reaction. Then you have to go to Neocate or something. Goats milk isn't an option, either. My dd's allergist told me that goats milk is very similar to cows milk. And soy can also contain that milk proetin. We thought my dd had a milk protein allergy, but it turned out to be a gluten problem. Your dd may be getting more gluten than you or your GI think. We would always give her (and all our dd's) french fries when we went out to eat, and most of the time they have gluten. And lotions and soaps can also have gluten.