Baby Diagnosed With Failure To Thrive

[nicspoon32]

Hi Everyone,

I'm a new member and have spent some time today searching this site. I don't think my son has Celiac Disease because he doesn't have all of the symptoms I'm finding here, but since many of you have probably been through the testing phase I'm hoping someone can help me figure this out! Here's my story in a nutshell...

My son is 6 months old, and weighs only 12 lbs. (he was 7lbs 7oz at birth) I nurse him constantly (8-10 times a day). I offer bottles after nursing, weigh him before and after feedings to see how many ounces he's taken, and supplement with formula. Yet he's not growing. The doctor does regular weight checks, and diagnosed him with 'failure to thrive' at about 2 months old. He contracted MRSA in the hospital at birth, and was on some pretty nasty antibiotics to kick it. The doctor originally attributed his slow weight gain to the staph or treatment, but that was 4 months ago.

Two months ago she sent him for a panel of blood tests, which showed neutropenia (low white blood cell count), which has since corrected itself, and could have been caused by the staph/treatment. We're also seeing Infectious Disease for this.

His stools are all over the board - he used to have diarrhea, often mucusy. Then it turned to thick, very sour smelling stools (I'd call them 'airy'). Now he's usually constipated and can go a week without a BM. He spits sometimes, but then again I'm always coming at him with a bottle!

The doctor is concerned, but leaving it up to me. I don't want to put him through a million painful tests if he's just a "small baby", but I don't want to cause problems for him down the road by not treating something that could be treated.

Oh, and for me - I have a history of Crohn's disease, lactose intolerance, and possibly Celiac (but mild, and I don't want the test because I already can't eat anything! so I just deal) I have a 2 year old daughter who nursed and grew fine - 50th percentile.

Any ideas for things to research would be much appreciated! Thanks for reading this

Nicole

[dandelionmom]

I don't think my son has Celiac Disease because he doesn't have all of the symptoms I'm finding here

You don't have to have all the symptoms to have celiac disease. In fact, I know a little girl who had no symptoms other than FTT who has celiac disease. The symptoms you describe for your son could very well be celiac. Unfortunately testing is notoriously unreliable for small children because the rate of false negatives is high.

Oh, and for me - I have a history of Crohn's disease, lactose intolerance, and possibly Celiac (but mild, and I don't want the test because I already can't eat anything! so I just deal)

You may find that a gluten-free diet will allow you to eventually eat dairy. I was lactose intolerant for 4 years and can now eat as much dairy as I want. Celiac tends to be genetic, so if you have a positive test, that may help you find out what is going on with your son.

I hope you find answers for him soon and he starts to feel better.

[ang1e0251]

Oh, and for me - I have a history of Crohn's disease, lactose intolerance, and possibly Celiac (but mild, and I don't want the test because I already can't eat anything! so I just deal)

It's sounds like you already have a problem facing the possibility of having celiac disease yourself, won't it be difficult for you if your baby has it?

Your facing very severe risks if you are celiac and still eating gluten. Your children need you, please look to your own health. Have you been diagnosed or have a history of celiac disease in your family? I think your child could very well have celiac disease but are you prepared for the possibility of that?

I don't mean to be harsh but it sounds like your precious child is fighting for his life and you want to fight for him. Fight for him with your whole self whether that self is a Celiac, Crohn's, lactose intolerant or purple people eater!

[sugarsue]

Hello. I am sorry you are going through this with your son. I know you are worried sick. I would highly recommend getting the blood test celiac panel for you and your son and then go gluten free yourself while you breastfeed your son to see if there is an improvement. Do you feed him any formula yet?

My thoughts are with you.

[Mother of Jibril]

If your child does have celiac disease, you also need to stop eating gluten if you're going to keep breastfeeding. The proteins can pass through your breastmilk.

Even if you have your child tested and it comes back negative, don't be afraid to give the gluten-free diet a try! It won't hurt anything and it might just help both of you.

[Jestgar]

If your child does have celiac disease, you also need to stop eating gluten if you're going to keep breastfeeding. The proteins can pass through your breastmilk.

worth repeating

[Aleshia]

hi, my son was never diagnosed as failure to thrive because he started out big and grew alot at first but at about 4 months he lost 2 lb and stopped growing for awhile. he only gained 2 lb from 4 mo. to 17 mo. then I stopped feeding him gluten and he started gaining a lb a month. he had NO SYMPTOMS at all other than just not growing but because I was looking into the whole gluten intolerance thing for myself and my other son I decided to try it. please at least look into it! it could help your son a great deal and maybe yourself also!

[Darn210]

With the test being unreliable in a child so small, you should definetly be tested. If you end up positive, it will give a better picture of what is going on with your son. Is there something else beside milk that you are not eating? (Referring to your comment that you can't eat anything) If Celiac is at the bottom of all your health issues, you may find that giving up gluten will return many other options.

[nicspoon32]

Thank you for your response. I understand your concern, but I want to clarify a few things so you don't think I'm an awful mother. Of course I am going to do what is best for myself and my son. I have dealt with the dangers of a digestive disease, including a very restricted diet, many different medications, hospitalizations and surgeries, for 15 years.

I have heard of Celiac disease, but today is the first I have read about it. As I read through this site today, I noticed that I have some of the symptoms... but they are the same "milder" symptoms I have with Crohn's. The comment that I don't want the test because I already can't eat anything was a joke, since my diet is already very limited (no vegetables, fruits, nuts or dairy) and made up mostly of bread, oats and pasta. I doubt I have Celiac, but it is possible... so if I have to also eliminate gluten from my diet then I will absolutely do so (especially to continue breastfeeding my son).

I will call my doctor on Monday and request the test for me and my son. Thanks again for your concern.

Oh, and for me - I have a history of Crohn's disease, lactose intolerance, and possibly Celiac (but mild, and I don't want the test because I already can't eat anything! so I just deal)

It's sounds like you already have a problem facing the possibility of having celiac disease yourself, won't it be difficult for you if your baby has it?

Your facing very severe risks if you are celiac and still eating gluten. Your children need you, please look to your own health. Have you been diagnosed or have a history of celiac disease in your family? I think your child could very well have celiac disease but are you prepared for the possibility of that?

I don't mean to be harsh but it sounds like your precious child is fighting for his life and you want to fight for him. Fight for him with your whole self whether that self is a Celiac, Crohn's, lactose intolerant or purple people eater!

[nicspoon32]

Thank you for your response! I have Crohn's disease, so I cannot eat vegetables, fruits, nuts (or dairy). In fact, most everything I CAN eat has gluten... so I'm a little nervous now! But I will go get the test next week. I don't have any reason to believe that I have it, but if my son does, I will give up gluten to continue nursing him. Thanks again!

With the test being unreliable in a child so small, you should definetly be tested. If you end up positive, it will give a better picture of what is going on with your son. Is there something else beside milk that you are not eating? (Referring to your comment that you can't eat anything) If Celiac is at the bottom of all your health issues, you may find that giving up gluten will return many other options.

[sandejosgirl]

evening again nicspoon! I'm the mom from the Crohn's & celiac in a babe post.

the only symptom's my 1 year old has is that she isn't growing no matter what I feed her; she stoped

growing at 7 months she only gets breastmilk and wholefoods: fed whole grains (containing gluten ), veggies, fruits, etc.

that's it! no other symptoms. the only reason our ped tested from Crohn's is cause we are trying to get a celiac's diagnosis for my husband and oldest daughter, so she knows we have a fam. history of bowel issues.

anyway, i don't know what the ped GI will say about it. i'm hoping the growth/Crohn's issues are controlled through a gluten-free diet.

Best wishes.

[Fiddle-Faddle]

Is there any possibility that either of you might have Celiac instead of Crohn's (rather than both, or just Crohn's)?? I ask because when I first joined this board, I lost count of the number of celiacs here who said that they had been initially diagnosed with Crohn's, and later found out that they didn't have Crohn's at all (though one had been initially misdiagnosed with Celiac, and DID have Crohn's).

It's actually easier to deal with celiac than with Crohn's. Healthier, too! And I have read in several places that Crohn's patients tend to do much better off gluten, but maybe that's because they were all misdiagnosed??? (Only half-kidding there...)

You might want to google "Crohns and Gluten" and see what comes up. Whichever you have, research like mad, as most of us have had the sad experienceof finding out firsthand that GI docs are often poorly informed about dietary issues.

As for failure to thrive, have you checked with a lactation consultant or with a La Leche League representative? They might be able to advise you on healthy (and gluten-free) ways to increase your own milk supply. I know I was given TERRIBLE advice by doctors and nurses, guaranteed to make me fail at producing milk (like, nurse every 2-3 hours, count how many minutes on each side, etc). But the La Leche League Lady and the hospital lactation consultant saved me, with TOTALLY different advice from what the doctor said.

Pediatricians know NOTHING about breastfeeding. And they seem to know NOTHING about the possibility that formula (depending on the protein source) can CAUSE a baby with dietary issues to fail to thrive.

Now, if you have a full-time job and other children and lots of stress, then maybe you might have no choice and must offer formula. For that, we are lucky to have that option.

But if this is your first baby, and you are home full-time, then the first thing the breastfeeding experts say is to nurse more often (like, every 30 minutes) to increase your milk supply. Yes, you will feel like a cow in a dairy farm--but that's how the breasts know to make more milk. The more you supplement, the less you make for the next feeding (I'm sorry, I'm sure you've already heard this ad nauseum, and it's a very stressful position to be in).

The experts should also ask you about what things might be affecting your ability to produce milk, like undiagnosed low thyroid hormone production (they should run a thyroid blood test, T3, T4, and TSH), which is VERY common post-partum. And they should find out what meds, supplements, and foods you ARE eating, as that factors into milk production.

Also, if your baby spends a lot of time in a crib or stroller, you will apparently make less milk than if you WEAR the baby in a Snugli or shoulder sling all the time and sleep with him. Isn't that wild???? If you don't have it already, you might want to look up The Baby Book by William and Martha Sears, which quotes all kinds of studies that SUPPORT sleeping with baby, including the one about making more milk. Even my anti-breast-feeding pediatrician (whom we no longer see) told me about that one.

It can also be very difficult to make sure that you are getting enough liquid yourself, and enough calories. If you are trying to lose weight at this point--DON'T. You have enough to deal with already! Concentrate on eating healthy (or as healthy as possible with diet restrictions!)

Best of luck to everyone on this thread!

[Fiddle-Faddle]

I just wanted to add that any baby with bowel/digestive issues should NOT receive vaccines until those issues are resolved. You might want to do some research: www.nvic.org, www.putchildrenfirst.org.

[nicspoon32]

Thanks so much to everyone for taking time to answer my questions! What a great forum full of wonderful, caring people.

Fiddle-Faddle, you asked great questions. Here are my responses:

Is there any possibility that either of you might have Celiac instead of Crohn's (rather than both, or just Crohn's)??

As for failure to thrive, have you checked with a lactation consultant or with a La Leche League representative?

It is possible! I definitely have Crohn's, as I've experienced lots of large and small bowel damage and had resection surgery. Although, being on this site and reading about celiac makes me wonder. I'm going to request the test next week when I see my GI.

Thanks for all of your breastfeeding information. You sound like a consultant yourself! And everything you said is spot on. I actually requested to see one when my son was 3 months old and my ped said 'great idea!' (duh) That wonderful lady helped me SOOO much. For starters, she realized my son has a raised palette, so he can't latch on correctly. Probably one of the FIRST things my Ped should have realized?? Her advice was wonderful, and (by tracking intake, weighing him before and after feedings, and pumping/giving in a bottle) helped me realize my supply is fine. I've supplemented with formula (about 6oz/day) just in case... to no avail. Which now leads me to investigate the malabsorption issue on my own, as my ped doesn't seem to be helping much. (btw: my son nurses most of the night. I think it's fabulous! I doze off and he increases my milk while i sleep! haha)

I'm curious about the reason for not getting vaccinated... I looked through the sites you sent but didn't see anything that gave a specific reason. can you please provide a little more info?

THANKS A MILLION from me and my sweet little boy.

[shan]

My son had FTT in a major way, with celiac being ruled out about five times and him anyway being gluten free. He was put on reflux medication and started to thrive. He was also put on a restricted diet - gluten dairy soya and egg free - which was slowly reintroduced, but it was definately a silent reflux!! Now, before any of you say anything, it is not that i am saying dont look into the celiac business, just that it is possible that it can be reflux, which is a relatively easy thing to rectify... Also, i was told by all the drs that it was my feeding and milk that was the cause of his FTT, and it wasn't I would have done anything to keep feeding, so if you can and are willing to change your diet for him... well that is a big thing!!!

[Fiddle-Faddle]

Open Original Shared Link

Andrew Wakefield was actually researching Crohn's, when he stumbled on a disturbing bit of evidence: the majority of the autistic children he was studying (ALL of whom had intestinal problems) had the MMR vaccine in the lining of their intestines, where it should not have been. The non-autistic children he was studying (the "control" group) did not have this, though they too had intestinal problems.

He called for the MMR to be discontinued for further study, and suggested that children be given separate Measles, Mumps, and Rubella vaccines, but with 6 months between each vaccine. He never said that the MMR caused autism, nor that vaccines not be given at all, but that this link be studied.

The rest of the medical community has tried to discredit him.

My sister-in-law's sister-in-law (yes, I meant that) has a child who was totally normal until his MMR shot at 18 months. She has video footage of him the day before the shot and the day after.

The day before, you see a bright, happy, connected toddler, talking clearly, and laughing and joking with his parents. The day after, you see an obviously autistic child, screaming, spinning, flapping, and banging his head.

He is now 12, and still profoundly autistic.

[rinne]

[url="Open Original Shared Link

My sister-in-law's sister-in-law (yes, I meant that) has a child who was totally normal until his MMR shot at 18 months. She has video footage of him the day before the shot and the day after.

The day before, you see a bright, happy, connected toddler, talking clearly, and laughing and joking with his parents. The day after, you see an obviously autistic child, screaming, spinning, flapping, and banging his head.

He is now 12, and still profoundly autistic.

So sad.

It is important to pay attention when a child has a negative reaction to a vaccine. They may be fine but sometimes the next child reacts much more strongly. I worked with a family that had this happen.