Our peanut allergy treatment journey with IgE numbers over 100, a history of anaphylaxis and skin contact reactions.
We are getting ready to start OIT (oral immunotherapy) for peanut!
My worries are and have been:
All positive in regards to our experience with first OIT app
The blood test results:
I am not surprised, but I am now a bit more hesitant and nervous about our first peanut ingestion OIT appt on Monday with these numbers for peanut. Our local allergist will not do in office food challenges with positive results, so we would have to travel to do those in Dr. A's office.
IgE Peanut >100 Abnormal kU/L Class VI
IgE Ara h 1 67.90 Abnormal kU/L Class V
IgE Ara h 2 >100 Abnormal kU/L Class VI
IgE Ara h 3 38.50 Abnormal kU/L Class V
Bottles of pre-measured doses in my cooler for the drive home
Initial day dosing for peanut OIT (6mg all together but will start at 3mg daily) down the hatch! No reaction except mild itching in back of the throat that went away quickly! The black clouds of worry that hung over me as this day grew closer have lifted!
- How will my daughter's already not so great (sometimes struggles with GERD) digestive system react to daily eating her allergen?
- The possibility of reacting after a dose!
- Going from being worried about the possibility of accidental ingestion to daily worry of reactions to the daily dose.
- Wondering if a reaction after a dose is not a reaction to the dose, but just a asthma/allergic reaction to her many environmental allergies.
- The 3 hours round trip to get to the OIT office every two weeks.
- The stress of making sure I give the correct dose at home and not making a mistake.
- The down time after the dose.
- The long term, the dosing for life and all of the possible reactions or mistakes etc along the way. Wondering if this is the best choice for my daughter, and for our family.
- The financial burden.
- Wondering if she will remain on board with the dosing if she does have a reaction... Etc etc
The plan is that she will start with peanut, and if that goes well we will add cashew and pistachio a few months later, and if we have to, walnut and pecan. Pesky walnut and pecan... Will do the blood draw in the AM and then have the first peanut dose at our next appointment, after they get those results in a couple of weeks.
Skin prick test: 24-peanut, 45-cashew, 67-pistachio, the others are various nuts.
All positive in regards to our experience with first OIT app 
:-) No allergens eaten yet as we are having further testing (blood and hopefully a food challenge) to rule out a couple of nuts that were negative last year but positive barely again at today's skin prick test. The OIT allergist and his staff were wonderful!
The blood test results:
I am not surprised, but I am now a bit more hesitant and nervous about our first peanut ingestion OIT appt on Monday with these numbers for peanut. Our local allergist will not do in office food challenges with positive results, so we would have to travel to do those in Dr. A's office.
IgE Peanut >100 Abnormal kU/L Class VI
IgE Ara h 1 67.90 Abnormal kU/L Class V
IgE Ara h 2 >100 Abnormal kU/L Class VI
IgE Ara h 3 38.50 Abnormal kU/L Class V
IgE Ara h 8 0.57 Abnormal kU/L Class II
IgE Ara h 9 <0 .10="" div="" nbsp="">
Bottles of pre-measured doses in my cooler for the drive home
Initial day dosing for peanut OIT (6mg all together but will start at 3mg daily) down the hatch! No reaction except mild itching in back of the throat that went away quickly! The black clouds of worry that hung over me as this day grew closer have lifted! :-) I am so relieved! The nurse was so great as was Dr. A!!
Dosing on vacation!
It has been a few weeks, and we were able to get up to 6mg of peanut at out first in office updose! She is now on 6mg of peanut each day in her 5ml dose. We even went on vacation and gave a dose during an eclipse party!
After a few doses where she experienced long lasting stomach pain and burning about 15-30 min after the dose we have backed the dose down to 2.5 mg and will gradually build it back up from there.
Reminding myself that we can take out time on this journey.
It has been a couple of weeks and we have gotten back up to 3mg. We tried one day of about 4mg and she had stomach burning pain again, so we are holding at 3mg for now. We have also added a daily Zantac to try and prevent the burning stomach pain.
A couple of weeks later and we are at 3.5mg of peanut and are going strong with no stomach issues!
....
Months later, (I swear I intended to keep up with blogging) and we are now at 12mg of peanut a day on 8/28/2018. We were in a holding pattern again at 6mg with burning stomach pain, but after switching dosing from the evening to the morning and then to right after school, the pain is no longer a daily issue. My daughter is still on board with this treatment and excited about having no more burning stomach pain.
Recently we added braces into the equation, so I am a bit nervous about broken skin in the mouth from the brackets rubbing against her lips, we will be rinsing extra carefully after each dose.
Will update this blog post as we go along!
10 comments:
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