New England Food Allergy Treatment Center

3 replies [Last post]
By christin28 on Tue, 02-07-12, 05:14

http://nefoodallergy.org/
Has anybody heard of this? I'm going to enroll my PA son in the program. I will keep status updates. I spoke with a woman there today and she said they need more people to keep the program going. It's a little expensive but if what they claim is true it's worth it. They say my PA son will be able to tolerate 3 peanuts in about 6 months.
That means no more fear ar birthday parties, airplanes, halloween, the playground! I know he may not ever be able to chomp on a peanut butter sandwich but the possibility of not having to worry about accidental exposure would be amazing for our family.
At the monment we only fly on Jet Blue airlines because they remain peanut free. The amount of money it costs me every year having to travel on only one (expensive) airline .. this program will be paid for in airline expense savings alone. That is.. if it works.

__________________

Christin

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By digitalsam on Mon, 06-04-12, 20:00

We live in rural New Mexico and have a 13 year old boy with a severe peanut allergy. Can you let me know how the treatment went? It will cost us about $13,000 to send my wife or myself and our son to Connecticut every two weeks for six months and an additional $5-6K for the treatment. I want to be sure that it works before we proceed.

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By christin28 on Tue, 10-16-12, 13:57

Ok so we started the program on St. Patrick's day. We started at .01mg of peanut flour ( under doctor supervision and with an IV just in case). We didn't have any issues other than mild itchy lips up until 12mg. At 12 mg we didn't have enough food in his system and he reacted with vomiting. We decreased the dose back to 6mg and worked back up to 12mg. Once we passed 12mg it's been smooth sailing. We've gone every 2 weeks and increased without issues each time. We are at 383mg of peanut flour as of Oct 13th. November 10th my son is scheduled to move up to 3 peanut m&m's. His quality of life has already improved SO much. We can go to restaurants with peanut on the menu now and as long as he doesn't order peanut he's fine. In the past if it were anywhere on the menu we would have stayed away. He no longer has to sit at a peanut free table at school.He's not afraid to go trick or treating with friends this year!! I can't say enough positive about this program. For our family it has been amazing!

__________________

Christin

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By digitalsam on Mon, 08-26-13, 17:38

I forgot I had posted here. We ended up taking my son to Dr. Samuel Foster at the SW Asthma and Allergy Clinic. It was forty miles shy of 1000 miles a week, round trip. We left Sunday morning, arriving in Denton in the evening. Had his appointment every Monday morning for 25 weeks and then drove home. It was a mess, but my work allowed me to make up the hours and we scrimped and saved in order to make it work financially. Gas and Hotel were the biggest expense. Insurance covered it, or they will when the billing mess is taken care of. My son started off with the smallest dose and the doctor had to slow down the protocol even then. The first day of the week was the hardest, but he handled it well.

That was July 2012- February 2013 and now we are eating peanuts, m&ms, PB&J sandwiches, etc. My wife made peanut butter cookies last night with no reaction. It is still pretty freaky to walk into our house and smell peanuts! It is also odd that my family is no longer a safe house for people with peanut allergies. We are now the dangerous ones!

The doctor says that we still need to be diligent, because he still shows up as allergic on the tests and peanut dust will still cause his eyes to swell. My son still carries the Epipen and when his asthma acts up, he takes an Allegra because that is when he seems to be most prone to complications, but the change in our lifestyle is amazing.

We are still holding out for a cure, but are very happy with the results.

I would be interested in hearing about other parents experiences.

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