BLOG: Geodude’s OIT Journey; by Lil and Rich

imageThere are over 50 OIT family blogs published in our Research & Learn library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.

Xolair is controversial in OIT and more research is needed. It speeds along the process–which is the exact opposite goal for OIT, which is to let the body adapt and desensitize naturally to the allergen. Xolair is a very effective asthma drug, with a checkered history and some scary side-effects.  However some of our skilled OIT doctors have used it in patients effectively. When adding any sort of drug it is always important to discuss it thoroughly and understand the risks. Dr. Seidu has a lot of asthma patients in his practice, and has had a lot of success with it outside of OIT. He is very comfortable using it.


Tuesday, September 16, 2014

to share or not to share

Let me start by saying… I am not a writer. This blog is for my family and close friends who have kids with food allergies. Please share if you think this could help someone.

Rich is 12 and a half. He was diagnosed at 18 months with a peanut allergy and his last ana reaction was at 3 and a half. He has been retested every 2 years. He has had the UKnow component test and his Ara h 1, 2, and 3 levels are 11.9, 20.0 and 8.76 respectively. He was tested for tree nuts at Emory. Hazelnut 2, Pistachio 1, and Walnut 1. He can eat almonds. We only buy Blue Diamond because they are not processed with peanuts. He is lactose intolerant. He also has asthma.

He will start 7th grade public middle school next month. He has a 504 Plan which he has had since elementary school. He has self carried since kindergarten.  I did home school him for the last 4 months of 4th grade because of an uncooperative teacher and pushback from school administration who had been very accommodating until that year. Get a 504 Plan if you are in public school!

His middle school has 1700 students – grades 6-8. They serve peanut butter Uncrustables in the lunchroom and children bring in food from home so he sits on the stage with a friend everyday. His choice. I have always been involved at the school through PTA and I volunteer in the front office twice a month. I am a Realtor so my schedule is flexible.Dr. Seidu – We have been with Atlanta Allergy and Asthma since Rich was a baby. Dr. Lotner was my allergist as well, but is retiring. I have been following food allergy trials since Rich was diagnosed. Atlanta Allergy does not offer clinical trials for food allergies like they do for asthma. The closest place until recently was Duke University.

I have met Dr. Seidu several times at Food Allergy Kids of Atlanta meetings and the FARE walk. As of today, he is the only doctor in our area who will try the OIT. The child must be 12 and he uses Xolair injections with his therapy.

Talking Rich into even meeting with Dr. Seidu was very hard. Convincing a 12 year old boy to even think about eating something that he has always been told would kill him is hard to comprehend. I told him to just talk to Dr. Seidu and the decision would be his. He is in our network.

Thursday 6/12/2014

Our first appointment. One of Dr. Seidu’s offices is by St. Joseph’s at the perimeter. It takes us about 40 minutes to get there. Not too bad compared to people who drive 12 hours each way or fly out of state for their therapy.

We went over the guidelines for side effects and the procedures that would be followed. He will have 3 months of injections then start the peanut part. Dr. Seidu said Rich could have the peanut powder in grape juice or pudding. He already has chosen the grape juice.

We signed the paperwork to begin the approval process to get the Xolair. Rich has asthma so it will help him either way. Rich did not do very well on the blowing out the candle test – lung capacityso Dr. Seidu gave him samples of the new Pulmicort inhaler.

We were told it could take up to 10 business days to get approval from our insurance company for the injections. Without insurance, they are $2,000 each. After the 10 day period, I called his office. They hadn’t heard anything. For the next two weeks, Monday morning came and I would take a deep breath and call. Still no word.Sunday 7/6
Mike went to the mailbox and started yelling for me. We had gotten the approval letter in the mail just in time for Rich’s appointment on Wednesday. He is approved for 7 months of visits. I don’t know if they will have the Xolair then or if we have to wait for another appointment to start the treatment.

Monday 7/7

Just hung up the phone with Dr. Seidu’s office. My insurance company will be calling me in the next hour to get my verbal consent and to go over any $$ that may still be owed for Xoliar. If we get everything approved this morning, there is a good chance he will start injections on Wednesday. Nurse gave me a Xolair copay help line to call 1-877-411-8641. She said they will cover up to $4k of copays that my insurance may not cover. She also said that some insurance companies require reauthorization after a certain amount of time that is why the 7 month approval period. Talked to Dr. Seidu’s office and the dispensing pharmacy (Aetna). No one seems to know where the Xolair is coming from, who is really paying for it, or when it will be there, but I have my letter and Dr. Seidu’s office said Rich will start his injections on Wednesday!

Wednesday 7/9

AM- Woke up at 7am. Mike is headed out of town for business, and Rich and I are headed into Atlanta for the shot or shots. From what I have read online and in my private OIT Facebook groups, he will get 1 to 4 shots today and have to wait between 2 to 5 hours while he is observed to make sure he doesn’t react to the Xolair. I don’t think he gets any peanut today, but I am not sure. It would make sense that they would want an oral food challenge baseline before he starts the drug, but it maybe too risky. They already have his blood tests and skin tests results. We will see.

Rich seems very relaxed about what is happening. He is a 12 year old boy so sometimes it is hard to tell. He knows about the shots but seems more disappointed that it is going to be at least 4 hours away from his BFF, Andrew 🙂 I have promised him Chic fil a if he is patient today. I have read that some parents are using the Buzzy Bee to help with injection pain. I will ask Dr. Seidu if this is an option for next time. The injections reportedly sting. They are $40 on Amazon Prime, but I didn’t have time to get it here by today.PM – Notice the lady sitting over Rich’s shoulder. She is eating granola in an allergist’s office. I had to tell the front desk. It totally reminded me why were are doing this!

They measured, weighed and took his BP. He did the electronic spirometer (maybe).  They gave him a shot in each arm. The medicine is thick like rhosephine (antibiotic shot). Dr. Seidu says it really stings and the Buzzy Bee will not help. He will go back on August 1st for his next shots. The Friday before school starts. I really do have to say that compared to most doctor’s offices, this one is very polite and accommodating. Rich is happy this afternoon and his only complaint is his band aids are orange. His shirt is blue and pink. This is what having an older sister does to you 🙂


Site created by Food Allergy Parents like YOU ! … They said there were NO TREATMENTS for food allergy!