FPIES mother from Poland

hello to everyone, sorry for language mistakes but I'm from Poland. I am asking for help because I am convinced that my son has the fpies syndrome and he doubts that I would find a specialist in this field in our country. My son is 8 months old and is currently exclusively breastfed (when he was 4 months old due to problems with lactation, he received modified milk and with time modified milk based on goat's milk without any side effects). from the sixth month we introduce solid foods. partially blw and partially eat gerber jars. after the fourth time of serving the egg, 2-3 hours after eating, the son began to vomit very much for 1.5 hours - every 10 -15 minutes, then he fell asleep. when he woke up it seemed that everything was ok with him, there was no diarrhea or other aches - he was slightly weakened. I thought that this vomiting was a coincidence, so after 3 weeks I again gave the egg, but my son turned his head after 1 spoon and did not eat more, and after 2 hours started vomiting. I thought it was some kind of egg intolerance. but when I gave my son a salmon for the fourth time and exactly after 3 hours he started to vomit in the same way, I came to the conclusion that something was happening. The pediatrician said she had egg allergies and the salmon was not fresh. But when I started looking on the internet, I came across the Fpies and I'm sure it's about my child.I have a few questions and I hope that there will be a person who will help me
1. I have not noticed any bad reaction from my son even though I am breastfeeding and I eat his triggers, does that mean I do not have to eliminate them from my diet?
rarely a son happens to split a small amount, now I started to associate it with triggers, can I check the products through breast milk? for example, eat a product for 1-2 days and if your son has a split, I can consider it to be his trigger
2. both eggs and salmon triggered the reaction after the fourth try, so far I gave my son new products once and waited a few days before I gave again. Is it enough for me to test products, for example 7 days, 3 days break and 2-3 days of next trying
3. There is also a large group of products that the son ate before I found the Fpies, can these products (tried more than four times but without a specific pattern) be considered safe.
4. if two triggers cause severe vomiting after 2-3 hours after eating without diarrhea or rash does not mean that the son triggers will always be that way, or I can expect something worse
5. Should I go to the hospital if my son vomits 2-3 hours after the meal, without additional symptoms, I try to drink it with a syringe but usually everything is vomited
6. Can it happen that a safe product will become a trigger over time
7. If my son is eating millet, corn and rice crisps, can I say that these grains are safe for him
8. if my child's vitamin d contains coconut oil and nothing bad happens after eating it, whether it means that coconut oil is safe for him.
9. if the jars of vegetables and fruits that my son eats are safe products, does that mean that the fruit and vegetables from these jars served raw are also safe?
10. if eggs and salmon are banned, if there are any products that I definitely should not try
I know it's a lot of questions, but I will be very grateful for any answers and suggestions, thank you
Original Post

Hi,

That is a lot of questions.  : )  Every case of FPIES seems really individualized, so I can only answer from my perspective.  My son is almost 3 years old, and he has chronic FPIES with some atypical patterns.

1. My son did not react to his triggers via breastmilk (with a few minor excpetions), but there are many kids that do.

2.  Your method of testing seems like a good plan for your situation.  

3.  Sure- safe for now.  : )

4. Depending on the food, my son has a variety of reactions.  It isn't always consistent. Vomit to shock, vomit with or without diaherra, just diaherra, abdominal pain with rash, adominal pain, stomach ripples, reflux, crankiness- we've seen it all.

5. Tough question.  Always better to be safe than sorry with regards to going to the hospital with a baby that young.  You need to watch out for shock symptoms.

6. If you take a break from a food (example 2 weeks), your child can react to it upon the reintroduction.  We've had that happen a lot.  He also has atypical patterns- we lose "safe" foods all the time for no apparent reason.  My son can tolerate a food for over a year and then have a problem.  However, I don't think that is common.

7. Safe for now.  : )

8. Not necessarily.

9. Not necessarily.  We have difficulty with all raw fruit.  My son can eat some Gerber fruit- the more processed the better in our case.  But, a lot of FPIES kids do fine with raw fruit.  I've never fed my son raw vegetables- we can barely get boiled ones to pass trial.

10. I would tread very carefully with all fish/shellfish.

Hope that helps!  

thank you very much Jass. Your answers helped me a lot. I must admit that when I diagnosed my son and read some medical articles, I thought it was not bad. Most articles talked about a maximum of 2 triggers, of which up to 3-4 years old child outgrow. but when I came here on the forum, or on blogs fpies parentes, it seems that the triggers list is endless, children do not grow out of it, and the list of safe products can suddenly change into fewer products. It frightens me. why medical articles and doctor's statements say one thing and the parents' stories completely different. I have spent a lot of time reading a lot of topics here and I do not know if the prognosis is good or should I get ready for the worst. I also wonder how the origin-country affects the type, number of triggers. Unfortunately, there is not much talk about it in Poland. when I described the situation to the pediatrician, she said that many children have allergies to eggs, and the salmon I gave my son was not fresh which caused vomiting. my mother thinks - and maybe she is right that we are now introducing solid food too early, according to her story when I was small, I only ate only vegetables and fruit for a year, and fish, meat and eggs only after one year of life. What are your experience with probiotics and collagen hydrolysate?
 

Hi,

I think most FPIES cases do fit the medical articles from what I heard from my doctors- they've never seen a case like ours.  This forum and other online chats attract more of the unique or difficult cases, because it isn't easy to manage and the medical community often does not have answers for us.  One medical website stated that only 5% of FPIES cases cross multiple food families (like my son's case).  So, no need to worry- your case could definitely be one of the more "normal" ones!  Eggs and fish tend to be common triggers . . .

Never blame yourself- I only fed my son fruits, veggies, and grains the first year, and he still had FPIES with a whole lot of vomiting.  It didn't matter what I introduced or when.  But, now that you know there is a problem with solid food, I would tread very carefully.  You can research the common allergy triggers and avoid them at least until he is older.

There are a lot on this forum with success stories with probiotics.  I asked our GI doctor about it for my son- We were told not to due to concern he would react to some of its binding ingredients.  

I do not know anything about collagen hydrolysate.

-Jess

My daughter is 5 now and has no symptoms. She was also about 7-8 months when we learned about fpies and got a diagnosis based on her symptoms. My daughter did not react to foods through my breastmilk but I eliminated her 4 trigger foods (bananas, pears, sweet potatoes and peaches) from my diet out of caution. This is what worked for me: I returned to exclusive breastfeeding until 1 year of age when I very slowly started to reintroduce solid foods beginning with watermelon and grapes and corn tortilla chips. She never had another reaction again and now tolerates all her previous triggers. 

At the time the fpies symptoms first developed at 7-8 months she was reacting with delayed vomiting each time a she ate a solid food even though she had tolerated a particular food in the past. I'm convinced she would have continued to react to any foods she ate in the same manner. That's why I chose to stop all solids for the next 4 months despite my doctor recommending introducing new foods every 2 weeks. 

Depsoite the delayed introduction to solids she gained weight appropriately and did not experience any difficulty learning to eat. Like I said, this is what worked for me. If your baby tolerates breastmilk fine you might try the same path. Best wishes.

thank you very much Jess and Fpiesgraduate. Your messages gave me a lot of hope. Jess, you're right, I blame myself for this situation. I wonder what I could have done in my pregnancy or early life so that the faps would not appear, though I read that even among twin pregnancies there are cases that one of the children has fpies and the other does not. On the other hand, my son has several medical issues, which are very unique, additionally we went through many other complicated situations, that sometimes I have the impression that this "difficult" case is usually us. unfortunately, my son, due to his issues, must take medication and it seems to me that they are partly guilty - these are drugs whose side effect is damage to the stomach and inhibition of the secretion of digestive enzymes. that's why I'm afraid that fpies rules, if any, may not apply to us. I am also very afraid that I will build a base of safe products and over time my child will suddenly react.
 
 
Jess, when it comes to probiotic, we use and recommend: probiotainfant from seekinghealth. It is free from Dairy, Egg, Fish, Shellfish, Tree Nuts, Peanuts, Wheat, Soy, Gluten. Naturopath recommended it to me as I was still pregnant. The same person recommended both to me and for baby hydrolisate collagen - it is a collagen in a special form, which very well affects the intestines, seals them. I even read somewhere that it helps with allergies - I know that fpies are not allergies. but overall it works great with autoimmune diseases. I gave W from birth and then I do not know why I stopped, now I come back and test. Collagen is a powder and easily dissolved in any form of liquid I add to water or my milk.
 
Fpiesgraduate thank you for sharing your story. such a scenario was a godsend for me. I'm still worried about how it will be like W will be bigger - how to send W to kindergarten or even a class trip, where everyone will get standard food. not to mention some family celebrations, I can not imagine that everyone will eat and he would look at it - does it mean that I always have to have my food with me, or just avoid being separated from others? Coming back to my guilt, I blame myself at the beginning of the solids. I started when my son was 6 months old. He seemed to be ready. but he could not sit alone. He still can not. I know that most people do not recognize this as a determinant of readiness for solid foods, but every child is known to be different. Maybe that's how he lets me know to wait with solids food. On the other hand, we already have about 20 safe foods. as you wrote, I am also thinking about exclusive breastfeeding or I am also considering giving it only fruit and vegetables and ewetually the cereals that I have checked and slowly try new fruits, vegetables and cereals.
 
breast milk has about 72 calories per 100 grams - that's a lot more than most meals that babies get - unless they get avocados or bananas. So I'm not worried about putting on weight, additionally it is known that breast milk is the best, and in case of illness adjusts its properties to act like a medicine. so in the case of fpies it's a great solution. but I am worried about the level of iron, which decreases after 6 months of life and other vitamins and microelements. I wondered which solution would be best for my son. Fpiesgraduate, did you notice any negative long-term effects of your daughter's fpies, I read about joint pain and constipation
 
 
I also have some questions for you:
1. Jess told me to avoid fish and shellfish, I noticed that DHA, which is given regularly, but does not always contain puryfied cod liver oil, does it mean that I can give my son cod fish?
2. Jess, have you noticed that your triggers are less serious with your son's age. Does the reaction depend solely on or type of triggers?
3. I am also thinking in the future that in case of reaction my son should look for drugs that would stop it, eg antimetic suppositories, or rather give the body clean and give hydration. I read here on the forum, about an adult girl with fpies and she described this feeling when the reaction comes as something that tells the body to clean up, throw the trigger out of yourself.
4. Fpiesgraduate where did you know that your daughter is already responding well to triggers? how was their re-entry into the diet? did it under the supervision of a doctor? Jass, have you tried to bring triggers to your son's diet on your own?
5. I also wonder what would happen if in one meal the son ate 2 triggers. Was the reaction worse than the one after eating 1 trigger?

Hi Ewa, 

I am from Poland and I have a son with FPIES. I diagnosed his condition after he had a severe reaction to baby rice ( and later baby porridge). 

I am happy to share all my knowledge about FPIES. The great news is , he’s 5 now, happy and growing. He eats almost everything apart from boiled rice. 

Anyway, feel free to write to me, my email address is

izabela77@hotmail.com

Kind regards

Izabela 

Hi Ewa,

Try not overthink everything- one day at a time!  : )  Try to find a good medical professional to help work out the details- probably Izabela can help you out with finding a medical team.

I really like FPIESgraduate's answer.  Although I know it does not work with all families, we also relied heavily on breastmilk.  I actually just weened my son completely just shy of his 3rd birthday.  

We also did not follow the every 2 weeks doctor advice for food trials- it was too fast for us, and he ended up with chain reactions to foods like FPIESgraduate talked about.  We average about once a month for a new food, but I sometimes cook the same food a different way and my son "thinks" it is a different food.  : )  

Yes, my son's reactions are less severe with age, and now we get warning signs as a food starts to fail (so we can pull it before we get to the vomiting stage.)  I figure its kind of pointless to retest a trigger food until he stops having reactions in general.  We just lost 2 foods last month.   

For iron & Vitamin D, we currently use the vitamin- "Poly-vi-sol with Iron."  But, there is a variety of vitamin use in the FPIES community- others are probably just as good.  

-Jess

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Ewa
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