FPIES and Modular Formulas

[Anonymous]

Hi there, I posted in another section but I think maybe I should post here?? Anyway…so after 2 months of mulitple failed formulas and continued GI symptoms, the GI thinks my babe may have FPIES (this is food protein induced enterocoltits syndrome) He is 3.5 months old. We are having an endoscopy and flex sigmoid next week to evaluate whats going on in there. He does not have the “classic” symptoms of the fpies, with the severe vomiting and shock, etc. What he does have is awful reflux, nasal congestion, spitting up mucus, very thick mucus in his stool which is very difficult to pass, and blood in his stools. his belly always seems to hurt. he does not do well on elemental formulas…

so my question is, does anyone have experience with fpies and modular formulas? GI says we may need to do a modular formula since he cant tolerate these elementals which is pretty rare

[Anonymous]

Hi Julie,

I am wondering if you have read my blog? I know that you may feel that what helped my children won’t help yours but MANY babies have been helped with probiotics and enzymes. And it is interesting to me how the ones that have found help with it have had all sorts of different symptoms. Many children that ate hardly anything started eating better with probiotics and enzymes and yet my child that ate all the time everything that was in sight was also helped. People that have constipation are helped but so are people with chronic diarrhea. I am not saying they will cure your child but I do feel that it would be worth a try for you!

I am not selling anything on my site, it is just a place for me to tell my story in detail. Happy Mom2012-10-05 17:35:30

[Anonymous]

Hi Martha, thanks. Yes I did read it and actually I just started him on probiotics! Im willing to try anything at this point. About how long do you feel it takes to start an effect? Also, will it help with food intolerances as well?? Thanks for your time

[Anonymous]

What kind of probiotics are using? Are you also using digestive enzymes? The probiotics can alleviate pain and some reflux but won’t really help with food intolerances. The enzymes are what help break down the food. In my opinion what “food intolerances” really means is that the digestive system is unable to properly break down the food.

As far as how long it will take to see results… a lot of people find that it starts helping with in days but for some it could be weeks or a month.

Did you read the other’s mom’s stories of finding help with probiotics and enzymes on my blog?

http://help4acidreflux.wordpress.com/lorraines-story/

http://help4acidreflux.wordpress.com/federicas-story/

Katie’s story…

first off i want to say THANK YOU for writing this blog. in the midst of what seems like the millionth night of i just can’t take this anymore (lack of sleep, crying baby up all night etc) while googling on my iphone holding my son who i couldnt put down b/c he was in so much pain i happened to see your response to someone on some question on a reflux forum. i noticed your answer and clicked on your link to your blog. i cannot tell you how thankful i am you wrote your entire story with all the details. our story is similiar minus the blood in the stools. i am not sure exactly where to start. i too on my own finally figured out i had to eliminate every single ounce of dairy and soy in my diet while breastfeeding to get my son to quit spitting up. until the age of 6 mo he slept in a moving swing b/c he would spit up or make choking noises gagging if i laid him down at all. finally at 6 mo is when i switched him to nutramigen b/c i just oculdnt take eating that way anymore and amazingly he seemed SO much better. wheni started introducing foods is when things got really bad again. rice cereal results in crying, gassiness, total lack of nighttime sleep unless being held. carrots made him throw up. squash made him throw up. i finally quit foods. then everytime i would try any purreed baby food i would give up after a few days and go back to just nutramigen and he would improve a ton. finally at 10 mo i thought he just has to be eating something (btw my son is 98% for weight and height so people find it really hard to believe hes had all these issues). i began with sweet potatoes and at first he seemed fine. it eventually got to where we spent an entire 8 weeks where i couldnt even put him in his crib. he would just cry. i had to hold him all night long sitting upright. i attributed it to teething and just continued on with foods. then finally i had a moment where i realized i think its the food. so i quit all food and just went to nutramigen and he returned to normal. i fInally threw a fit until his pediatrician put him on prevacid. he kept telling me “he was spoiled and just wanted mommy at night.” after prevacid he started falling asleep every time the car was moving and taking a decent nap every day for the first time ever and sleeping ok at night. in his crib but waking 1-3 times a night for a bottle. that contined until july 2012 and he was about 16 mo old. the only food during this time he seemed to handle well was pears – pureed and an organic cheerio from whole foods (the only finger food i could find with very few ingredients). any time i have added any other food in – he either is up screaming, crying, gassy, arching his back, refusing to lay down….etc… he often throws up after eating a new food.

the crazy thing is this. he has been blood tested and he does not show any signs of allergies. i have taken him in twice again a few days ago we went and i started crying b/c i am just so frustrated. he has been to a pediatric gastroenterologist. who said that i just need to wait it out until he outgrows this. i took him in a second time a few months after the first visit to tell him nothing had improved and to beg him for some advice.

GOOD NEWS: i started him on the digestive health mid july and he has been off of his prevacid since then!!! i have been giving him 1 pill twice a day. i have seen no negative changes since doing that and i am so happy about that. SO THANK YOU! thank you for sharing this. i told our allergist the other day about it and i was so excited, he looked at me blankly and said i dont really see how that would help. (didnt really surprise me at all his response). the only true help i have received in this crazy journey has been from other mom’s stories. and only one dr. ever agreed that soy could be part of the problem.

AND i have been taking it twice a day and it is helping a ton with my heartburn as well. i have also noticed i am able to eat things again that used to make me feel funny and sometimes get heartburn, onions, banannnas are two things!!!

[hellbennt]

martha: who is katie? thank her for me! also: how do moms know how much of the probiotic/enzyme to give to baby? I mean, they’re not adults, so how does a parent figure out the dose? thanks!

[Anonymous]

Well, Katie wrote this as a comment on my blog and I am not sre who she is. I think her last or middle name is Tines and I think she found a link to my blog on this site. I know that “Katiric” on this site has also found a lot of help with probiotics and enzymes but it is not the same person. I have searched for Katie Tines and have not found her on here so if she has posted on this site then that isn’t her user name. I have her email address and will send her an email and thank her for you. 🙂 I can also ask her if this is the site where she found me and if so has she posted here before and what her user name is so you can find her.

How to figure out dosage for babies…. I have a page on my blog about that but it only pertains to the brand we use because I don’t know what the dosage would be with other brands. http://help4acidreflux.wordpress.com/dosage/ I tell people it is best to call the company and ask them about dosage but on my blog I have written what Shan (owner of company and Chris (his assistant) have told me.

They say that the ingredients in the Digestive Health pills are all plant based and so therefore the body recognizes them as food. So the amount that someone (including a baby) takes isn’t really what matters but rather how much the person needs to feel better. It is recommended to start slow with everyone. The pills are powder in a capsule form so they are easy to open up an dump out a little. For a baby… 1/4 capsule day for a few days then increase to 1/4 in the morning and 1/4 in the evening. Every couple of days you can add in 1/4 pill until baby is comfortable. For some babies a pill a day or less will be all they need. But for some it might take several. It is important to space them out as much as possible throughout the day.

The reason for starting slow is because of the Herx Reaction which is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

What Is The Herxheimer Reaction?

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

Shiloh is almost a year and I give her 1-3 a day. I try to give her 2 but sometimes forget and if she eats a lot of meat or dairy I might give her an extra one.

For my boys ages 3 and 5 I give them 3 0r 4 a day. I find that I can go down to one a day but in few weeks they start gettin restless at night and soon they are crying, thrashing and coming to our bed. But when they take 3 or 4 they sleep peacefully all night in their own beds. When they drink a glass of milk or some other strong dairy, they always get an extra pill. If they don’t they don’t sleep well.

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