North Carolina anyone?

Hi to both of you! Yes, our son goes to Duke Children's Hospital for his FPIES care. EatmonFamily, I'd love to talk more. I've never met with another FPIES parent in person. It be great to possibly meet for coffee or something since we're both in Nash County. How old is your child with FPIES? What are his/her triggers? 

Hi everyone! That is great there are two families in Nash Co.! We are in Wake County, and see Dr. Mankad at Allergy Partners of Raleigh, but she was trained at Duke. She is great as well in case you ever need another Dr.

 

My LO is a couple months away from turning 3, and we are planning to retrial our big triggers then.

Hello!!

 

My 5 month old daughter was just diagnosed with FPIES the day before Thanksgiving. We are right outside the Charlotte area(We also have family in the Raleigh/Pittsboro area!) This is all very new, scary and overwhelming to us, I would love to get to know you all! 

Sorry Chantel I'm on my phone and just realized I misspelled your name. Don't worry between all the online help from other parents and dr Mankad you will be good! Who is your ped? We go to Cornerstone Pediatrics in Cary off High House Rd. dr Parmar there is great.

Hello! We live in Wilmington, NC and have a daughter diagnosed with FPIES at 9 months. She is now 12 months. We see an allergist here as well as a pediatric GI doctor. Her trigger was rice at 6 months, but she developed severe oral aversion from the traumatic event. She is currently breastfeeding and will take a bottle but refuses all pureed and solid food. I tried starting a probiotic this week based on her pediatricians suggestions and she has had vomiting (FPIES like, happening 2 hours after the bottle with the probiotic and vomits about every 15 min x 1 hr). Any suggestions for help? I can't find an allergist in town that has a lot of knowledge about FPIES and not sure how much help they are. Not sure if I should pack up and drive a few hours to see someone more trained with this rare disease. I don't know know where to start or what her other triggers might be because she refuses anything but breastmilk. Has anyone ever experienced oral aversion with this? Thanks in advance!

Hello I'm new to this fpies forum I'm 100% sure my daughter has fpies. I'm in rocky mount nc does anyone have any good recommendations on a gi doctor and fpies doctor?  She has severe allergies and her gi doctor here isn't doing anything to help us. I need some advice please she has mspi and her triggers are milk soy rice oats and corn. She was given rice cereal at a very early age bc of reflux and every time she's had it we end up at er. Last month she did sane thing with oatmeal when introduced.  She turned 7 months on the 19th. She also has issues with orange and yellow solids as well as tylenol or any corn additives.  Help.
Hi, Raleigh checking in here, too. My son is just over 6 months and after starting on solids about a month ago had severe vomiting and lethargy 3 hours after first trying rice cereal, then apples, and now after 3 successful attempts at bananas another episode
My pediatrician is finally sending us to a clinic for allergy testing Monday. I've suspected FPIES since the beginning since the symptoms lined up exactly, but our pediatrician and a second opinion didn't know anything about it and told us to keep trying a food each week (which may end up being all we can do anyway).
I'll update with results. I just hope whereever they refer us to knows about FPIES and doesn't run every expensive food allergy test possible. I'm thinking just a negative food allergy result to rice will verify it. Man, this is so heartbreaking and frustrating.
Hey Jason
Just want to wish you luck with the allergist. Were in Raleigh as well and have a wonderful, knowledgable allergist we work with. What allergy testing are they planning to do? There is not an allergy test for fpies so we opted to not do the skin testing as her dr agreed it would most likely be negative. Things will get better. It is terrifying in the beginning but it has become a new normal for us and it does get easier. Keep us updated!
I'm not sure what the plan is yet. When we first had the problem, the Dr was thinking is was a stomach virus but we weren't so sure since he snapped back to almost completely normal after about 5 hours which seemed quick for a virus plus he had just tried rice cereal around 3 hrs before it happened.
The second time we tried rice cereal again per doctor's advice even though we were scared to death. The baby was smart and wouldn't eat it, though, so we get less than a baby spoon down. Then we made the mistake of doing apples right after and again 3 hrs later he was so sick.
This time at the Dr (and the 2nd opinion) was thinking rice alergy. I had brought up FPIES each time since when you google rice cereal throwing up thats all you get, but since he's always had eczema and has shown some skin issues with mom eating gluten and using colloidal oatmeal products he seems allergy prone. The plan was to keep trying a food once a week and maybe do blood alergy testing. I'm not sure what that entails, but they said it uses quite a bit of blood and can only test for one allergy at a time. When I asked about what to try if we suspect FPIES they said they weren't sure and it would have to be done at Duke or UNC.
This time, since he failed bananas and probably apples, the doctor just said he's sending us to the clinic Monday. My plan is if they are still thinking that blood test for allergies that I'll agree to a rice test and if he doesn't test positive for an allergy then it must be FPIES  (unless theres something with the same symptoms that I don't know about).
Not to hijack this thread, but when we asked the pediatrician about FPIES today after his long talk on testing and us bringing it up several times in the last month his reply was "What?"
So, we're getting sent for normal allergy blood testing and some white blood cell testing looking for some kind of issue with intestines. Sigh...
At least when it comes back negative I can switch to someone who knows something about fpies.
Jason were in Rocky mount and now see dr mankad at allergy partners of raleigh.  She's awesome! ! We got a diagnosis right away but still thinking something else is going on.  What particular tests are you talking about I'd love to have our daughter tested. We avoid dairy soy and corn!   She turns 1 on July 19th and has no safes except neocate formula. How is your baby?  We are on a great fpies group on Facebook including a corn allergy group. Look me up joy s hines
Thanks, Joy. We've been through quite a bit since my last update. We were sent to Wake Med for blood and stool testing. They needed a lot of blood. First they tried his arms 4 times trying to find a vein, then the foot. Even then they weren't sure they got enough. A week and a half later we had a pediatrician appt and only then we learned they didn't get enough blood. What I remember we did get results for were that he didn't have Celiac disease, his digestive system was processing protein, and everything else was normal except for slightly elevated white blood cell count. What needed more blood was a general iGe allergy test. We again asked anout FPIES but the doctor still thought it was just normal allergies so he had us try the iGe blood test again. Again extremely painful for the baby and again not enough blood. The ped told us to go back again and told us to keep trialing foods. At that point we got a second opinion from another 2 pediatricians and they also never heard of FPIES and recommended the same course if action.

Beore another blood test we did some more research and found pediatric allergist/immunologist Dr Amy Stallings at Duke. We actually had to argue with our ped to get a referral but did. Before we even got half way through our story she said it was FPIES. We had skin allergy tests done for 15 things including everything he had an "allergic" reaction to and he has no allergies  (passing wheat surprised me as he does get worse ezcema when mom eats gluten) which confirmed it. So, we got our name for what he has. Unfortunately, theres not much to do but keep trialing foods. She said we could start trialing foods at the clinic, but his pattern has been 3 to 5 times before he fails which works out to over 20 hours a week in the clinic. h
Hes been taking pedialite ok when he has a reaction at home, and fluids are really the only treatment anyway . He still no passes after trying rice, oatmeal, carrots, apples, and bananas (which he truly loved to eat the 4 times that he could). Right now we are on day 4 of pears and he usually reacts by the 5th time so we're crossing our fingers. Next try will be peas.

I've been reading some more and am considering trying a naturopath  (I think thats what they are called). FPIES lines up a lot with what they call Leaky Gut and can be treated with stuff like massage, prebiotics, and maybe acupuncture. There are some practitioners in the area and I think it could be worth a shot. Its cheaper than going to the doctor and we might be able to find something that helps instead of trying new foods and hope he doesn't throw up for hours and go into a near coma state

Best of luck with everything! I'll check out your group on facebook.
Well guess what Jason our allergist called last night and is transitioning us over to have care with dr Amy Stallings lol our first initial appointment will be in raleigh then care in her Durham office.  How do you like her? I'm nervous! Our allergist thinks Amy has a better team of drs and can help our daughter.  I've been researching since she was born and I do Believe fpies has a role but also look up corn list and corn allergy it's not well known and we avoid corn for her reactions to otc drugs....also know that your child can have a intolerance and it not show up true on ige testing.  I just go with my gut from research and her reactions. I'm also looking into genetic testing and wondering if eoe or mast cell has a roll in this.  Most kids with fpies have other food allergies and intolerance including auto immune disease.  Add me to fb and I'll add you to our groups so you are aware of some of these other possibilities.  I've also thought maybe it's csid which means they can't properly digest sugars and starches. ....that could be why she has issues with veggies and fruits. Trader joes is a good place to buy from including farmers market and grassfed farms. We avoid corn dairy soy. She is on neocate formula and tried 9 other formulas before finding one she can tolerate.  I'll ask dr Stallings about blood testing and I'm so sorry your baby had to go through all of that.  Good luck look forward to hearing from you.
Hi Joy, I was really impressed with Dr Stallings. She said that day alone she saw 3 babies with FPIES so I would count her as an expert, probably the only one in the area. I also went to her Wake Med office first and it was impressive. Her nurses were great. They even had my baby's favorite Wiggles video to play to distract him from the skin testing. My only concern is she seems pretty busy, but from my experience every doctor in the area is. I'm just not sure how quickly I could get an appointment if I needed one.
I did try to contact a naturopath, Jennifer Ito on Friday afternoon and hope to hear back tomorrow. I'll let you know how that goes if I talk to her and let you know if maybe she can help with corn or discovering other allergies. FPIES in general makes no sense to me. I've read tons on it but its so weird to me that a baby's body decides to reject some proteins in a completely unpredictable, untestable, and untreatable way, then by age 3 or 4 just decides those proteins are totally fine.
It does seem something else might be going on with your baby. I think you are in good hands with Dr Stallings.
Hey Amy!! What formulas have you tried and tell me meds baby is in and including foods. We have chronic fpies too that sometimes turn acute. Our daughters only safe us neocate infant formula! Have you tried homemade hemp formula? Look up Joy mercill she tells how to make it. I've talked to her a lot through this journey. Also look up mast cell disorder. What other things have been going on? We see a good allergist dr any stallings however a lot of Drs don't understand chronic fpies. You need a good gi dr. My advice is print info on chronic fpies and take it to the Drs...have you done any scopes yet? Thank you Jason for all the info...sorry it's taking so long to respond our life has been so hectic. Dr stallings is good and at least tries to help out daughter. She still has no safes at 14 months now. She has severe constipation now after solids and her eyes tear up, she gets restless and very squirmy and clingy! I hope things your way are better!
Amy if you decide to stay with breastfeeding I'd eliminate the top 8 allergens including all grains, corn, dairy, soy etc!  If you can't bc it gets too hard then I'd shoot for homemade hemp formula with hemp hearts. How old is baby? Also you can add a safe fat to formula, I'd get a good probiotic like infant gut pro, have they ran any tests to rule other possibilities out such as HFi, gluten, fm, csid, mast cell, cystic fibrosis?
Hi there!

We're from Greenville, SC. Our 4 year old had FPIES but outgrew it by age 3
(YAY!!). Don't worry! It gets better! We drove down to see Dr. Luqman Seidu
in Atlanta at the recommendation of other FPIES moms. That was after trying
several in our areal who were basically *clueless* about FPIES! He also
works with a very good GI doc. I would HIGHLY recommend that you go see him
asap. It was totally worth the trip! He is knowledgeable about FPIES and
very caring and helpful.

Rebekah

On Sat, Sep 12, 2015 at 4:13 PM, The FPIES Foundation <alerts@hoop.la>
wrote:
Here's the link to the info about Dr. Seidu:

http://omniallergy.com/physicians.htm

On Sat, Sep 12, 2015 at 9:55 PM, Rebekah Hawkey <hawkeyfamily@gmail.com>
wrote:

> Hi there!
>
> We're from Greenville, SC. Our 4 year old had FPIES but outgrew it by age
> 3 (YAY!!). Don't worry! It gets better! We drove down to see Dr. Luqman
> Seidu in Atlanta at the recommendation of other FPIES moms. That was after
> trying several in our areal who were basically *clueless* about FPIES! He
> also works with a very good GI doc. I would HIGHLY recommend that you go
> see him asap. It was totally worth the trip! He is knowledgeable about
> FPIES and very caring and helpful.
>
> Rebekah
>
> On Sat, Sep 12, 2015 at 4:13 PM, The FPIES Foundation <alerts@hoop.la>
> wrote:
>

Thank you to everyone who posted about their experience with Drs. in this area. We are in the Emerald Isle area and having a difficult time finding anyone who knows anything about FPIES. We are in the process of trying to get a referral to Duke Children's now thanks to so many wonderful posts we have hope for the first time in months.

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JoyChantel F
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