March - May 2018
1. Sesame challenge scheduled! (march)
2. Almond reaction (4/15)
3. Discovered Dr. Kim (4/17)
4. Sesame challenge passed! (4/18)
6. Environmental panel (5/3)
5. Met with Dr. Kim (5/21)
1. The allergist called (sometime in March?) to say they have added a new doctor (https://www.fnapc.com/directory/people/show/david-anmuth/) to the practice and were able to move up a whole bunch of food challenges (so much for Feb 2019)- scheduled for April 18th 2018. A little confusion on what to actually bring for food to challenge with... more on that with #2 & 4 below.
But this is fantastic news!
2. Working up to the sesame challenge, Andi had still been getting over some wintry viruses with breathing treatments and low grade fevers. One of the days i decided i wanted to get her used to eating chocolate frosting (because i planned to mix chocolate frosting and chocolate tahini for the food challenge). I put the chocolate frosting on teddy grahams and it was a hit (she's so picky about everything including chocolate). So it dawned on me to mix in some barney butter for almond exposure-remember she had tested negative in October- with the chocolate for this treat. I did just that. After one teddy graham worth- she said her tongue felt funny! (YIKES!) and didn't eat the second one. So fine, no splotches, no swelling- I'm watching her like a hawk ready to epi. She stopped complaining and everything seemed fine. Then a few minutes later she vomited... another sign, but no further symptoms and they were not overlapping. Luckily nothing else happened and she was fine, although i was watching her intensely the rest of the day. So it appears that almond was a false negative on the skin test... more on this with #6 below.
3. I was starting to explore the options of driving to Philadelphia every two weeks to get Andi started on OIT. It appeared from OIT101.org that this is the closest city (or VA beach). I started searching the FB allergy groups for people that did the drive from NOVA to Philly to read about their experiences, time commitment, etc. The day before the sesame challenge (4/17) someone sent me a private message to let me know there was a Dr in Chantilly VA (like a mile from where i work EVERYDAY) who is doing OIT. I was floored. I immediately started investigating, and the same woman added me to a NOVA OIT FB group. Wow. I called right up the next day (after the sesame challenge) and scheduled our first visit.
Dr. Kim (not the same Dr. Kim from my UNC post) practices at Allergy Partners of Northern Virginia in Chantilly.
I feel like we had won the lottery able to get an appointment in just a few weeks!!
4. sesame challenge 4/18
We arrived to see Dr. Anmuth, all prepared with coloring books (adult coloring books for my stress levels) and an iPad with movies. I had called the office to clarify on what food to bring (the paper said sesame cracker but that made zero sense as a way to control exposure to sesame for a challenge). They said some kind of tahini was fine. So I found chocolate tahini on amazon and we went with that. chocolate tahini and chocolate frosting mixed on a teddy graham, small amounts measured and brought to us in a plastic spoon every 15 mins. Eventually we went straight choc tahini on a few graham crackers. Andi ate ALL of it!!! Every 15 mins for like two hours. She had zero reaction, passed with flying colors. I was floored and amazed that my picky eater downed all that food!!! she is cleared for sesame no restrictions. Dr. Anmuth was very nice. I mentioned the almond incident from a few days prior. He thought avoiding until we could talk to Dr. Miranowski again/test again would be best. He mentioned that if her seasonal allergies were in high gear she could have a flare to almond due to that (and test negative other parts of the year) as one possible explanation.
5. 5/3 we saw dr. miranowski a few weeks later for environmental panels for Leni and Andi.
Leni- almost all negative (slight tree) except cats and dogs!!!
Andi- a few moderate tress, slight cat. Threw egg, peanut and almond on there. Almond was positive this time, ugg. She mentioned the egg went down a bit and she'd like to do a scrambled egg challenge in 6 months. I mentioned we were starting OIT for peanut and we could do egg in a year if OIT for peanut went well, she agreed.
6. We met Dr. Kim on 5/21. I had prepared Andi's allergy medical history in an easy-to-read table, because that's the kind of person I am. I knew what info he would want, and what we would need to discuss to see if she was a good candidate (I knew she was), and he agreed it was perfect and he had all the info he needed and was comfortable starting her in the program. Her blood and skin tests were pretty recent and didn't need repeating currently. Rich and I read over a few procedures, protocols and agreements.
Side note 1- Dr. Kim mentioned that he is not on OIT101.org yet because he wants to have a lot of success rates under his belt. This is referred to "private practice OIT" or PPOIT for peanut. The FB groups are quite weirdly strict on these "rules" around if your Dr is listed or not. He mentioned that he has had high success rates so far and was very optimistic.
Side note 2- Dr. Kim went to listen to Andi's lungs and i explained the poor thing is not very good and blowing out... he runs out and comes back with a PINWHEEL. This man is a GENIUS. Of course she blew the pinwheel and he could listen to her lungs. AMAZED. He earned our trust right there. why couldn't the pediatricians known this simple trick???
We decided to wait until July to start- finish up the school year and get into a new groove. July 11 is day 1 to get the base dose before bi-weekly visits for updosing.
I got approval to work from home 1 day per week to accommodate a flexible schedule to handle the appointments over the next year (for that I am so thankful).
We are reaching my goal of doing OIT prior to entering public school (yesssssss!!!)
We are about to embark on a stressful journey that will hopefully eliminate MUCH future stress and it will be well worth it.
I think that's it for now. I hope to do a blog for day 1 of OIT and then updates through all of those phases. She should be eating 8 peanuts per day by this time next year!!
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