Can Someone Please Help?!

[concerned-mom061]

Hello again! Lets see if I can get this out w/out just rambling. I got my little girl back over a month ago, as most of you know. Since then, we have been trying to get her off of her feeding tube and eating regular foods by mouth. Also, her pediatrician sent her to an immunologist that diagnosed her w/a serious immune system disorder that is going to require weekly infusions of immunogloblins and antibodies. He also ran tests on her and found that she has a serious allergy to milk, soy, wheat, eggs, and fish. I was told to keep her from all products containing those products. He and her pediatrician are sure that she has celiac.

After we started her on foods, she has started uncontrollable diarrhea...with an average of 16 to 17 stools a day, a distended stomach, her rash that she's had for months has gotten so bad we have to leave a diaper off of her, coughing and gagging, not wanting to eat, and has become really irritable. Also, she has a serious problem w/digesting food, so we don't really give her solid foods. She is on Pregestimil w/MCT oil as her main source of nutrition. She is 13 1/2 months old....she can't stay on formula forever.

I am so lost as to what I am supposed to feed her and where to find the food. I have searched every store in my area..and I can't find anything that she can have. I am sure that there is someone else out there that has a child that has gone through the same thing.

Please...I am about at my wits end with this whole mess, and I feel so bad for her. I don't want to see her go back down the same road of long hospital stays and having to use other forms of nutrition due to weight loss, malnutrition, and dehydration. Also, I have to find something to help her rash. We have tried everything..but nothing seems to work. She is miserable!!!

We have taken her off of everything but her formula, but she hasn't gotten any better. I don't know what to do...but I will do anything to help her!

Thanks to you all....and God Bless wach of you!!!

[AndreaB]

What kind of foods has she been trying to eat?

I use Baby Bottom Better that is sold by Absolutely Diapers out of Canada. You can order it online....it's around $11 dollars each but does a good job. I've used it on all my kids. My youngest is the one who needed it least, probably due to the fact that we are gluten free now.

I don't know if you buy or sell on ebay, but I'd be willing to put up one as a buy it now for you so you can try it. Shipping out of Canada is more expensive. I ordered a lot based on my first two children's usage and really don't think I'll need it all. I'm still on the first container (they are 2 oz) for my third child and he's 11 months.

PM me if you want to try it. I don't want to have you pay full price for something that may not work for her. I love the stuff though.

[Mamato2boys]

You can also make up your own diaper rash cream - I got the recipe from www.askdrsears.com

In your hand, mix up Boudreaux's Butt Paste, lanolin, and 2% hydrocortizone cream. The hydrocortizone can only be used twice a day for up to two weeks, but the rest of the mixture can be used with every diaper change. I would put a REALLY thick layer on my son's botton with every diaper change, and I'd also put cornstarch powder on to help absorb some of the moisture (I don't know if your DD is allergic to corn or not - don't use it if she is.) My son would get horrible diaper rash when he was drinking soy milk.

[concerned-mom061]

What kind of foods has she been trying to eat?

She has just been eating stage 1 and 2 gerber baby foods, mixed dried gerber fruits, gerber fruit puffs, baked potatoes,etc. Everything seems to make her sick. We cut out the fruit puffs, and then cut out everything else.

[celiacgirls]

Are you sure about the formula being ok? Is she still sick if that is all she has? I just did a google search on it and it appears that it has casein and soy in it. They say it is made hypoallergenic, but who knows if she is really sensitive, maybe it is still a problem.

[AndreaB]

She has just been eating stage 1 and 2 gerber baby foods, mixed dried gerber fruits, gerber fruit puffs, baked potatoes,etc. Everything seems to make her sick. We cut out the fruit puffs, and then cut out everything else.

I know that a lot of the fruits have citric acid added to them which is corn derived and also a hidden msg ingredient. Maybe that is what is bothering her. Also dried fruits are usually high in sulfites.

Try buying a can of fruit (if it doesn't have citric acid), packed in juice, not syrup and blending that....or buy fresh fruit and blend with a little water as needed. Sounds like you have recently started food so you still want to give a new food at least 5 days before trying another one. Would you be willing to start at the beginning again, maybe with gerber vegetables. I don't think I've seen a vegetable with citric acid added. Some fruits don't have it either. That would give you something solid to go off of. I've also read that they don't produce amylase (sp?) until they are 11-12 months old for helping digest potatoes and such. If she's had digestive/reflux problems I wonder if that would be delayed.

Are you sure about the formula being ok? Is she still sick if that is all she has? I just did a google search on it and it appears that it has casein and soy in it. They say it is made hypoallergenic, but who knows if she is really sensitive, maybe it is still a problem.

Good point.

[concerned-mom061]

I know that a lot of the fruits have citric acid added to them which is corn derived and also a hidden msg ingredient. Maybe that is what is bothering her. Also dried fruits are usually high in sulfites.

Try buying a can of fruit (if it doesn't have citric acid), packed in juice, not syrup and blending that....or buy fresh fruit and blend with a little water as needed. Sounds like you have recently started food so you still want to give a new food at least 5 days before trying another one. Would you be willing to start at the beginning again, maybe with gerber vegetables. I don't think I've seen a vegetable with citric acid added. Some fruits don't have it either. That would give you something solid to go off of. I've also read that they don't produce amylase (sp?) until they are 11-12 months old for helping digest potatoes and such. If she's had digestive/reflux problems I wonder if that would be delayed.

Good point.

I haven't been giving her any fruits besides the dried gerber ones. They may add to the problem...but she barely eats enough to matter. She's really picky about her foods. I have already been told to stick to the vegetables. We have taken it really slow w/her. We started trying to feed her at 8 months..but she ended up really sick and in the hospital until 12 months..and then we started again. As far as potatoes go..I figured that one out the hard way. She wouldn't digest it, and it would just sit on her stomach and make her cry..so we stopped feeding her that 2 weeks ago. The can of fruit doesn't work b/c she will not eat it. We've also tried fresh fruit. She's not a fruit person...which she gets from me.

Her formula is questionable b/c she has been on Neocate for most of her life, and she had the same result when we started foods. Also, she actually started gaining weight and doing well once we started the Pregestimil....the runny stools and rash have always been an issue.....they have just gotten worse. I'll look into that, though. She has always had problems absorbing things, and her nutrition level, protein, and iron have always been low.

Does anyone know if Pedialyte or any Gerber Juices are okay? Also....are there any finger foods that anyone knows of that I can buy for her that she can eat as a snack. I'm really afraid that we will never ger her to eat right if we don't start being consistent w/things. She already has enough problems eating...and some days I have to dance around and sing like some clown in a freak show to get her to take a bite...lol. I just want her to be able to live a normal life and eat normal foods and be healthy!!

You can also make up your own diaper rash cream - I got the recipe from www.askdrsears.com

In your hand, mix up , lanolin, and 2% hydrocortizone cream. The hydrocortizone can only be used twice a day for up to two weeks, but the rest of the mixture can be used with every diaper change. I would put a REALLY thick layer on my son's botton with every diaper change, and I'd also put cornstarch powder on to help absorb some of the moisture (I don't know if your DD is allergic to corn or not - don't use it if she is.) My son would get horrible diaper rash when he was drinking soy milk.

Believe it or not..hydrocortizone breaks her out. I couldn't believe it, but she still has the rash on her stomach....where it spread....to prove it. also Boudreaux's Butt Paste doesn't seem to work for her. Nothing seems to work.

[concerned-mom061]

Celiacgirls:

Wow....I looked up Pregestimil and you are right! That could very well be the problem. She is probably gaining weight due to the MCT oil....but the soy and casein are probably the culprits for the runny stools and rash. However, I know the foods are adding to the problem. Now, what do we do? There aren't very many more formulas out there that she can have. We had a real problem getting her to take the Neocate before...I know she won't do it now that she has tasted something else. She just does not like to eat it seem like. I am going to call her pediatrician tonight and talk to her about it....but I don't know how many more options we have. Thank you so much!

[AndreaB]

You may find that once her tummy feels better (without the soy/casein) that she will start to eat more. I believe those can cause the rash, not to mention them also causing the bloating and diarrhea/loose stools.

[FeedIndy]

What about Neutramigen or Allementum? I can't remember what those were made of, but we were going to try that thinking it might be her formula before her ped mentioned celiac. She can tolerate the soy just fine now that she is off gluten so we didn't have to go that route. I'm not sure what is in the hypoallergenic formulas, maybe someone here knows if they contain other allergens.

[concerned-mom061]

What about Neutramigen or Allementum? I can't remember what those were made of, but we were going to try that thinking it might be her formula before her ped mentioned celiac. She can tolerate the soy just fine now that she is off gluten so we didn't have to go that route. I'm not sure what is in the hypoallergenic formulas, maybe someone here knows if they contain other allergens.

Thanks for the advice....but we've tried Allimentum, and she won't take Neutramigen. That is some really nasty stuff!! She would literally starve first, so we had to use her feeding tube 24/7, and we are really trying to avoid that again!!

As far as her eating more foods once her stomach feels better....I sure hope so!! She is a texture baby, though, and she will not eat anything that doesn't feel right in her hands....and she won't take a bite of anything until she's touched it 1st. She really has a mind of her own....and she thinks she's the boss! I'd really like to find some little snack foods for her..like cheerios and such. She's completely bottle broken.....so now all I have to do is get her eating normal foods.

[ArtGirl]

Have you tried cooking fresh foods and running them through a blender (you'll have to add water) to make your own baby food? You can completely avoid questionable ingredients this way.

[concerned-mom061]

Have you tried cooking fresh foods and running them through a blender (you'll have to add water) to make your own baby food? You can completely avoid questionable ingredients this way.

The hospital did that for her when they took her from me as well as the foster parents. She was in care for exactly 30 days....and they tried everything to prove me wrong....but even they couldn't do it.

Also....is not growing in length as well as weight a side effect of Celiac? She has not grown a single inch since she was like 8 or 9 months. She lost 4 lbs...but she finally gained some of that back.

[Guest nini]

My daughter's diaper rashes were so horrible and bloody and raw that too often I had to let her go without a diaper and gently rinse off her bottom with room temp water (or lukewarm...) sometimes the only thing I could do for her was use vaseline petroleum jelly just to provide a barrier between her raw skin and her urine and bm's...

I wish I had some suggestions for you on getting her to eat more but it sounds like you are already trying everything. My daughter was such a picky eater (and this was pre dx) that trying to get her to eat was like pulling teeth. I even had one nurse at her pediatrician's office threaten to call DFCS on me if she didn't start gaining weight... we tried EVERYTHING. I made all her baby food from scratch, including teething biscuits. She wouldn't touch Cheerios (of course they have oats in them so now I know why)... The pediatric gi that her pediatrician sent us to kept trying to force Pediasure shakes on her (she was 3 at the time)... anyway. I totally sympathise with you and know just how frustrating it is and I hope you figure out what works for your daughter. With us fortunately it was as simple as just eliminating the gluten. Once we got that out of her system and she realized that her tummy didn't hurt anymore and that eating didn't make her ill anymore, she became a "little piggy" eating everything in sight. So you are having to deal with more than one allergen and intolerance, so you have a trickier challenge. I remain confident that once you figure out all of the things that are bothering her system and she starts to feel better, she will then be more excited about trying food.

I just remembered, with the diaper rashes, sometimes it was a candida/yeast issue as well and I had to mix monistat cream into the vaseline...

[concerned-mom061]

My daughter's diaper rashes were so horrible and bloody and raw that too often I had to let her go without a diaper and gently rinse off her bottom with room temp water (or lukewarm...) sometimes the only thing I could do for her was use vaseline petroleum jelly just to provide a barrier between her raw skin and her urine and bm's...

I just remembered, with the diaper rashes, sometimes it was a candida/yeast issue as well and I had to mix monistat cream into the vaseline...

Yes...we often let her run around w/her diaper off as well. She has pooped on just about everything.....but we have no choice. And, her bottom is so raw that even rinsing her w/water makes her scream. As far as the candida/yeast thing....she's been on Nystatin Cream, Nystatin mixed w/a steroid, and Nystatin Powder....it's not yeast.

They did a biopsy on her rash b/c no one in the whole Children's Hospital had ever seen anything like it, and it would not go away. It came back as Pigmented PurPuric Dermatosis...or so they thought.

Also, I've been searching on the web....and Nutramigen and Alimentem are the say thing as Pregestimil....so I do believe we are out of options! I don't know where else to look.

[CantEvenEatRice]

I just wanted to say that I am so sorry that you are having to go through so much. I am sure it must be torture to watch your daughter struggle. I would try to find doctors who are willing to work with you, but I know that is difficult. She could very well be reacting to something else. My son improved once we took him off gluten and milk, but then his diaper rash and eczema began to flare again. I think he is reacting to peas and green beans now. Food allergies and intolerances are so complex that I do not think that doctors truly understand them all. Best of luck! I hope you find your answers soon!

[concerned-mom061]

I just wanted to say that I am so sorry that you are having to go through so much. I am sure it must be torture to watch your daughter struggle. I would try to find doctors who are willing to work with you, but I know that is difficult. She could very well be reacting to something else. My son improved once we took him off gluten and milk, but then his diaper rash and eczema began to flare again. I think he is reacting to peas and green beans now. Food allergies and intolerances are so complex that I do not think that doctors truly understand them all. Best of luck! I hope you find your answers soon!

Actually...my daughter has 3 wonderful doctors...so I am very lucky. They all have tried everything they know. It is really hard to see her suffer and know that I can't help. We have cut gluten out of everything....and we are trying really hard to keep milk out as well. It's just so hard to find foods that are gluten, milk, and soy free.

Best of luck to you and your son.

[FeedIndy]

My DD loves Open Original Shared Link! They are teddy bear shaped puffs that are wheat free, dairy free, and soy free. Perhaps she would like those. She eats both original and apple cinnamon. I have found them at Wild Oats and Meijer.

I hope you find some answers soon!

[Guest Robbin]

First of all, I am so sorry your baby has these problems.

My youngest was nursed until 2 1/2 yrs old because he was allergic to all the formulas. He is also allergic still to most raw vegetables (we cook all his veggies since he can eat them cooked-it changes the chemical makeup of the veggies and fruits-his allergist told me) , he is also allergic to most fruit except for pineapple, citrus, and pears, and is allergic to soy, all nuts including peanuts, casein intolerant and gluten intolerant. He is now 13 and is hard to feed still.

Here are some ideas I hope work for you:

First, the rash--I used desitin-good remedy-put it on really thick after each change. It worked wonders for both my boys. Kept their bottoms healed up even after the most horrible D problems.

Try her on fortified rice milk-vanilla flavor-ask your doctor first of course. This is the only milk my son can tolerate.

Get some gluten free rice krispie type cereal and make her marshmellow treats to stimulate her appetite--sometimes just one bite would get mine eating and want a meal then.

Don't give her fruit or fruit juice-that makes the D worse. Try diluted o.j. if you want, but definitely not apple juice.

Maybe try what I did and see if she is like my son--give her squash, pumpkin, carrots, maybe peas, green beans (sometimes green beans can cause a problem if highly allergic) ground chicken and beef, rice (rice pasta and regular rice) , and maybe pears. If you give her a new food, wait for awhile to see if she tolerates it. Don't vary her diet too much until she heals better. I would alternate these foods and maybe make some rice and chicken mixed together-things like that, but keep it pretty simple. Talk to your doctor about some kind of supplement for more vitamins and then go slowly. I know how hard this must be for you. Keep us posted and take care.

[concerned-mom061]

My DD loves Open Original Shared Link! They are teddy bear shaped puffs that are wheat free, dairy free, and soy free. Perhaps she would like those. She eats both original and apple cinnamon. I have found them at Wild Oats and Meijer.

I hope you find some answers soon!

Well, I really appreciate you taking the time to tell me, but unfortunately she cannot have oats. She has not responded well to oats...so her doctor took them out of her diet. I was really excited, too....I thought I found something..lol. Thanks again, I'm sure there is something out there.

[concerned-mom061]

First of all, I am so sorry your baby has these problems.

My youngest was nursed until 2 1/2 yrs old because he was allergic to all the formulas. He is also allergic still to most raw vegetables (we cook all his veggies since he can eat them cooked-it changes the chemical makeup of the veggies and fruits-his allergist told me) , he is also allergic to most fruit except for pineapple, citrus, and pears, and is allergic to soy, all nuts including peanuts, casein intolerant and gluten intolerant. He is now 13 and is hard to feed still.

Here are some ideas I hope work for you:

First, the rash--I used desitin-good remedy-put it on really thick after each change. It worked wonders for both my boys. Kept their bottoms healed up even after the most horrible D problems.

Try her on fortified rice milk-vanilla flavor-ask your doctor first of course. This is the only milk my son can tolerate.

Get some gluten free rice krispie type cereal and make her marshmellow treats to stimulate her appetite--sometimes just one bite would get mine eating and want a meal then.

Don't give her fruit or fruit juice-that makes the D worse. Try diluted o.j. if you want, but definitely not apple juice.

Maybe try what I did and see if she is like my son--give her squash, pumpkin, carrots, maybe peas, green beans (sometimes green beans can cause a problem if highly allergic) ground chicken and beef, rice (rice pasta and regular rice) , and maybe pears. If you give her a new food, wait for awhile to see if she tolerates it. Don't vary her diet too much until she heals better. I would alternate these foods and maybe make some rice and chicken mixed together-things like that, but keep it pretty simple. Talk to your doctor about some kind of supplement for more vitamins and then go slowly. I know how hard this must be for you. Keep us posted and take care.

Robin..thanks for taking the time to write. Sounds like you had your fill of stress and worrying..huh?!

I appreciate all the advice. Desitin helps keep her bottom from gettig raw, at least a little bit....but nothing has made her rash go away. She has had it since she was 8 months old...and it never goes away, it just gets worse at times. As far as the Rice milk....we tried that recently, and she got really sick. Also, she has severe GERD so we have to watch thin liquids and things w/a lot of acid. She will not do any meats....no matter what I do. I can usually get her to eat Sweet Potatoes and Squash....but that's about it. I've tried the rice krispies recently as well, along w/marshmellows. She doesn't like, either....due to her whole texture thing. And we can't give her solid foods like rice krispie treats b/c not only can she not digest properly, she doesn't seem to know how to eat things like that. She doesn't chew....and she'll hold the food in her mouth for hours and just gag on it until I get it out or she spits it out.

At one time she was diagnosed w/Infantile Annorexia b/c she wouldn't eat anything. She has had a feeding tube since she was 6 weeks old, so we know that has a lot to do w/it, but we know she CAN eat..she just won't. Also, the whole digesting thing.

Her diarrhea is what really baffles me. She's had it since she was 8 months as well. It will ease up a little, but then it get really bad at times. Everytime she eats or drinks anything she has an immediate bowel movement. It's so crazy!!!

Thank you again!!

[Fiddle-Faddle]

Gee, I was sure I had posted earlier on this thread, but it seems to have been erased.

Anyway, I'm very sorry to hear that you are still having such a tough time. I'm sorry if this is short, I'm really tired.

Dried fruits are high in fiber and sugar--both of which are hard on ANY tummy, let alone a baby with tummy issues. I don't think I gave my kids dried fruit until they were over 3 years old. It also sounds like you are giving her a lot of different foods, but I don't think it is safe to give her more than one new food in addition to whatever formula does not cause diarrhea. If she tolerateds one new food without diarrhea for a week, then you can introduce something new, and wait a week before introducing yet another food. I know you must be absolutely dsperate to find something that works, and that is why you are giving her so many different foods, but to my eyes, it's

Can you give her rice milk (but not Rice Dream, that has barley enzymes)? Maybe there's a way to add some nutrition to rice milk and make your own formula?

I know this sounds weird, but I gave my kids plain broiled salmon (flaked into little pieces) as their first food. It's VERY nutritious, easy to digest (MUCH easier than any other protein, except possibly tofu, but if your daughter has problems with soy, then tofu isn't an optioin), high in good fats, and they don't need teeth to eat it!

With the number of different foods that she is eating now, it's hard to say what's causing the diarrhea. What do your daughter's doctors suggest? My strongest feeling is that, with such severe D and no weight/height gain, you will have to just do formula and nothing else until you find one that doesn't give her diarrhea. Only then can you start adding in any other foods, and then, ONE AT A TIME WITH A T LEAST A WEEK BEFORE INTRODUCING SOMETHING NEW.

I couldn't give my second son anything but breastmilk til he was nearly a year old (he had some issues, too). He thrived, and was 20 pounds, even though he didn't get ANY solid food. Introducing foods at that time was not a problem, he was happy to eat like everyone else at the table. Hmmm-can you get ahold of some breastmilk for your daughter? Do you have any friends who are nursing who might be able to donate some milk?

As far as the cheerios/finger food idea, I really feel that commercially available toddler fingerfoods are empty calories, with little or no nutritive value. I'm sure I'm in theminority with this view, so take it with a whole salt shaker if you need to, but that's my point of view.

I hope you find answers very soon.

[FeedIndy]

Well, I didn't even think about the oats. We are lucky enough to not have that problem here. What about rice crackers from the Asian food section? The ingredients for most of those are very basic-rice flour, some type of oil (the ones I buy use sunflower), and salt.

[Fiddle-Faddle]

EDIT: Sorry, I just reread your original post, and see that you have taken her off everything but the formula. She CAN stay on formula until everything settles down--then one new food at a time.

[AndreaB]

Her rash, has she been on this formula since she was eight months old? Is there a liquid supplement that the doctor could prescribe so she doesn't have to have the formula and you can work on other high fat foods like avocado, coconut oil?

I'm at a loss too, just trying to help out.

My son is 11 months and isn't to the point of chewing much (he only has 2 teeth), so I'll be looking at things to feed him. We are also gluten, soy and dairy free. I've posted some recipes (should be on the first or second page in baking and cooking) with are gluten, dairy and mostly soy free. Maybe there is something there that would work. I think they are generally for children a little older though and most are condiment type stuff.

What textures does she prefer?