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Old 08-10-2011, 07:30 PM   #21
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Re: sweet potato allergy?

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Hi Wendow! Yes, I'm pretty sure she has FPIES. I got her to an allergist and he diagnosed her with food protein-induced enteropathy...but I still think she has FPIES instead. But regardless the treatment is essentially the same. I wasn't too fond of him and he didn't seem all that worried or interested (didn't even want to see her again til she was 1 year old!). So for now the plan is to ebf and then introduce a veggie at about 5 1/2 months (beginning of September). We'll see how she does up until her 6 month well-baby appointment (middle of September) and then I'm going to see if I can get a referral to a GI doctor. If she has another reaction before then, then I'll make her an appointment sooner.

I can't remember what all I said in that initial post about my dd, but she has had the classic reactions to milk-based formulas and she has had blood and mucous in her stools the days/weeks after even small ingestions of formulas (the times she refused to drink but did get down 1/2 an oz or less). Today is day 11 after having 1/2 oz of milk-based formula (my attempt at retrialing a formula to convince myself that there really is something wrong) and she is still having very tiny/faint streaks of blood in her diapers. It's almost completely gone now. I am practically 100% sure she has FPIES.

And Wendow, I want to thank you SOOOOO much for pointing me in the right direction. I'm not sure I would have found out about FPIES if it wasn't for you. So thank you from the bottom of my heart!

There are some really great FPIES support groups on facebook that have been very helpful to me that I would highly recommend to any other mamas out there that need some support!
Interesting that you got that diagnosis. That is the same that have for my DD (now 15 months), but she's definately not FPIES because there is no vomiting. You are the only other I have found with that dx. My DD has a weirdo gut/skin reaction that nobody seems to see or understand. She does the whole bloody, mucousy stools thing, but also breaks out in a head to toe rash/burn when she drinks milk or soy. She now also has a contact allergy to dairy - instant hives - but tests negative for IgE allergies. Our ped allergist has been a great resource, but is the first to admit that he doesn't fully understand what is going on with her. His recommendation was to hold off on most foods until the 8-10 month mark after she had a horrible reaction to rice at 5 months. We've slowly introduced foods -- the only foods she is not getting at this point are dairy, soy, rice and peanuts. Doc *thinks* that her immune system just needed extra time to catch up. You're lucky that you can ebf ... not an option for us. I hope you have better luck with a ped GI!

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Old 08-10-2011, 07:44 PM   #22
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Re: sweet potato allergy?

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Interesting that you got that diagnosis. That is the same that have for my DD (now 15 months), but she's definately not FPIES because there is no vomiting. You are the only other I have found with that dx. My DD has a weirdo gut/skin reaction that nobody seems to see or understand. She does the whole bloody, mucousy stools thing, but also breaks out in a head to toe rash/burn when she drinks milk or soy. She now also has a contact allergy to dairy - instant hives - but tests negative for IgE allergies. Our ped allergist has been a great resource, but is the first to admit that he doesn't fully understand what is going on with her. His recommendation was to hold off on most foods until the 8-10 month mark after she had a horrible reaction to rice at 5 months. We've slowly introduced foods -- the only foods she is not getting at this point are dairy, soy, rice and peanuts. Doc *thinks* that her immune system just needed extra time to catch up. You're lucky that you can ebf ... not an option for us. I hope you have better luck with a ped GI!
You and I have chatted before I think about our LO's. My ds never got that diagnosis but symptom-wise, he was the same as your dd...well actually still is. He eats/drinks everything but dairy and soy. If he gets anything with dairy, he gets bloody/mucus poop and body rash. Soy reaction is same but much milder. He tolerated NO foods until 16mos and still drinks Neocate Jr at almost 3yo. He has baffled all his docs but honestly, from where he came (not tolerating anything including elemental formula), we are immensely thankful for where he is now!
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Old 08-11-2011, 12:02 AM   #23
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Re: sweet potato allergy?

That's too bad that your LOs are having mysterious body rashes as well! Poor babies! It still sounds like their symptoms are very similar to FPIES though.

The allergist diagnosed her with that because she only had vomiting reactions a few times (after having full bottles of formula) and all the other times she's had formula (less than 1 oz) her reactions have been limited to blood/mucous in her diapers. He also explained that enteropathy was more of an inbetween kind of diagnosis...it's not really full blown fpies...and it's not really proctocolitis. I get his train of thinking, but I'm still certain she has FPIES. Regardless though, it's considered a spectrum of disorders. The symptoms/reactions vary greatly from one child to the next. The moms on the facebook groups are proof of that. And some of their children may also have the same skin issues that your LOs are having, might be worth your while to join the groups and ask around.
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Old 08-11-2011, 12:02 AM   #24
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Re: sweet potato allergy?

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Old 08-14-2011, 11:10 PM   #25
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Re: sweet potato allergy?

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That's too bad that your LOs are having mysterious body rashes as well! Poor babies! It still sounds like their symptoms are very similar to FPIES though.

The allergist diagnosed her with that because she only had vomiting reactions a few times (after having full bottles of formula) and all the other times she's had formula (less than 1 oz) her reactions have been limited to blood/mucous in her diapers. He also explained that enteropathy was more of an inbetween kind of diagnosis...it's not really full blown fpies...and it's not really proctocolitis. I get his train of thinking, but I'm still certain she has FPIES. Regardless though, it's considered a spectrum of disorders. The symptoms/reactions vary greatly from one child to the next. The moms on the facebook groups are proof of that. And some of their children may also have the same skin issues that your LOs are having, might be worth your while to join the groups and ask around.
My ds1 definitely made me wonder about FPIES at times...he had a very FPIES type reaction when we tried him on goat's milk. He vomited almost exactly 2 hours later and continued to vomit for the next 2 hours until only bile was left. He was lethargic after. At the time, I had never heard of FPIES or else he would have gotten a trip to the ER. But that is the only food he ever had that reaction to. His symptoms/reactions always looked like eosinophilic gastroenteritis and eosinophilic colitis. He was even scoped upper and lower to look for this disease but they didn't find it. But he was scoped after he had been on elemental formula for 10 months so it's hard to know. Thankfully, he can eat most foods now and his reactions to dairy aren't quite as intense although they are still bad.

I'm not on FB but it is awesome that you have found support! I needed it so much when we were in the early stages of all this.
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