First Dose - Home alone

Sept. 17

We are out of school for fall break this week. We thought this would make a great time to start the actual peanut dose because I could have my eyes on him 24/7. My husband is in Vegas until Friday for his company's user conference and my teenage daughter is of course asleep.

So Rich and I get his jar of peanut flour and the grape juice he picked out. I also had an Auvi Q and a box of fast melt Benadryl on the counter. I had already made sure I had a 1/4 teaspoon measuring spoon. I gave him a stack of club crackers and a banana. Even if I am told that we don't need to eat it, I don't think I would dose him without it. I have read too many blogs and helpful Facebook posts from more OIT experienced parents than me who swear by the banana before. I took the peanut flour in the spoon and made the top level with a knife. As I put it into the grape juice, it started clumping. I didn't think it was going to mix in, but it slowly disappeared.

I could tell Rich was nervous as was I. To think that I am sitting in my kitchen alone with my 12 year old so many emotions racing through both of us. I didn't know if I was going to laugh, cry or throw up. So many years of avoiding the poison that could take his life, and I am sitting in my kitchen acting like everything is going to be ok.

Of course he grabbed the glass and drank it down quickly. I had told him I was going to put another swig of grape juice in his cup to get any residue. There was nothing in left in the cup, but I did it anyway to set a precedence.

Two hours. Two hours away from video games on his break. Two hours he must sit and be watched by his mother. We set the timer on my phone. He has a couple of projects due in October for school so I made him sit downstairs with me and work on them. I think this will be a positive routine for him when school starts back. He usually knocks out his homework on the bus (where he sits behind the driver who is trained and knows Rich has at least 2 epis on him). This will be his study and project time.

Four hours after his dose, he came downstairs and said he couldn't believe nothing happened. He didn't taste the peanut flour, his nose didn't run and he didn't need the epi or even the Benadryl.

GREAT DAY!

Peanut on Purpose

Long post warning... After 3 months of Xolair shots, my 12 year old had his first reaction to peanut since he was 3 and a half.

First taste of peanut on purpose!

After sitting for an hour in Monday morning Atlanta traffic, we got to the office right on time. They took his blood pressure, weighed him and put us in a room. He started with 1/8th tsp of peanut butter mixed with honey. Since his first reaction when he was 18 months old, we have been instructed to keep him away from peanuts and anything that "may contain" or is "processed with peanuts". Watching him ingest peanut butter for the first time made me feel like I was punched in the stomach. He quickly grabbed the stick and shoved it in his mouth. After making faces and swallowing he said it tasted bitter and then it got "stuck" in the back of his throat. Thanks to my Facebook groups and other blogs, I knew this was common. He drank several glasses of water. By the 3rd dose, the doctor gave him the option of peanut flour mixed with cranberry juice. He liked that much better, but then he started sneezing, his eyes started itching and his stomach started hurting. The doctor gave him benadryl, Zyrtec and liquid steroid to stop the reaction. He was ready to Epi him if needed, but Rich quickly recovered. Dr. Seidu has assured us that this should be the worst reaction he should have.

Rich has been concerned that if he were to accidentally eat something with peanut over his dose that he would have an even more devastating reaction than before treatment. Dr. Seidu explained to us that with Xolair, his reactions would be so minor compared to without. That is why he uses the drug. He said that since he can tolerate almost a teaspoonful of peanut butter, cross contamination should not be a problem so we took him to Menchies for the first time tonight!

Menchies Cake Batter Yogurt and sprinkles

Tomorrow will be our first at home dose. He will have .25 tsp of peanut flour in grape juice. Per doctor's orders, we will dose him 3 times a week. I know most dose at least once a day and some twice, but we trust our doctor and will do as he says. He says he has noticed fewer GI effects with this timing. He has an appointment for his next Xolair shot on Thursday 9/25.

Mike wanted to make sure no one got into the peanut flour.

Rich loves Minecraft so I made sure he knew this was his ;)

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.

BACKGROUND:
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 capacity so 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 :)