When Sebastian had pneumonia, taking his allergen dose twice a day proved difficult. In addition to six days of fever, he had non-OIT related hives (probably an allergic reaction to the antibiotic). As a mother it’s psychologically challenging to feed your child their allergen during sickness. Many OIT allergist will have patients skip sick days altogether. Our OIT allergist does not take this approach, instead requiring twice a day dosing regardless. Dosing twice a day means mornings and evenings, which unfortunately were the times when he was most symptomatic with pneumonia and not at all hungry (supposed to take dose with food). I ultimately switched (against our doctor’s orders) to once a day dosing simply because midday was the only time he would eat. I also know most OIT doctors use a once a day protocol safely. Sebastian had some post-dose reactions (hives, tummy ache, watery eyes, itchy ears) but nothing requiring epinephrine. After six days of fever, Thanksgiving day Sebastian was finally fever-free, thank God!
Sebastian’s doctor reduced his doses in half once he was presenting with high fever. After the hives episode he cut the dose in half again. I was getting overwhelmed at this point and decided to cut cashew and walnut altogether and I switched the others to once a day. Sebastian went three days without the last two allergens before I added them back at a very small amount. Now that he is better the doctor is letting us updose at home to a certain extent until we reach where we were before. I’m honestly just glad I didn’t get us kicked out of the practice for not following orders!
This was the hardest part of our OIT journey by far. I am so thankful Sebastian is healthy now and still moving towards his OIT end goals. It truly will be life changing and ultimately I think it will be worth all the hardships.
My son’s preschool had smart food allergy policies in place. All staff was trained on how to recognize an allergic reaction and administer epinephrine. The school had a strict nut-free policy for snacks and lunches. Children were made to wash their hands upon entering the classroom in the morning and they also washed before and after eating. My son’s life saving medication traveled with him from room to room via a medical bag and the teacher contacted me a week in advance if there were to be any food in the classroom (popsicle parties, food in sensory bins, etc.). I was impressed and touched by the capable, compassionate care he received at that school.
I’ve been less impressed with his elementary school, which is not nut free however certain individual classrooms strive to be. If someone in these classrooms send in nuts there are no measures in place to correct the action. The end of the cafeteria tables are where food allergic kids can sit but there are no clear guidelines on what can and can’t be eaten there. Students’ life-saving medications are kept in the nurses office. They encourage kids to wash hands before eating but not after, and certainly not in the morning upon entering the classroom. Food plays a prominent role in kindergarten lesson plans. There are substitute teachers who regularly bring in treats to share with the class.
Prior to starting OIT, Sebastian had three contact reactions that coincidentally all happened at the elementary school. When he was two, Sebastian participated in an Easter Egg hunt (our last) and got melted peanut butter candy on his hand which caused lasting redness where touched. Last year he had two contact reactions at the school. His hands were itchy and read after handling an item at the International Fair’s Israel booth. There was also a sesame based dish at the table and I think other kids had touched the item after eating. Then at Science Night a teacher, who had just eaten cashews, touched his shoulder and left raised hives behind. He also had redness on his hands, probably from touching the equipment she had handled. The risk of developing anaphylaxis via contact reaction is very low however I’m concerned he may touch his eyes, nose, or mouth with the allergen on his hand causing a more significant reaction. Systematic reactions have occurred in oral food challenges with just 5 mgs of the allergen. If my math is right that is just 3-4 fine grains of sand. In all of these cases I was right by his side, caught the reaction, and had him wash his hands immediately. Will his teacher pay such close attention? Will he ask for help if this happens at school?
Sebastian is currently half-way through his OIT goals. I’m unsure if he is already protected from trace exposures via skin contact. Our allergist will not permit Sebastian to eat foods with cross-contamination risk until my son reaches his final dose (4 peanuts, 4 cashews, 1/2 a walnut, and 1/2 tsp of tahini). Some feel that during escalation, one’s “allergy bucket” is full and any exposure over the current treatment could set off a reaction. I tend to feel that any ingestion less than what he currently taking should be okay but that he would need to not be physically active afterwards. I really think the days of contact skin reactions are behind us.
I knew we couldn’t avoid this forever. On Tuesday my son started with a pretty ugly cough. By Thursday afternoon his temperature hit 100.6. I contacted our OIT doctor who recommended once the fever started that we cut Sebastian’s dose in half while his body battled the virus. I know from my FB group that other doctors would have us skip the dose altogether. I wish there was clear research about which of these two approaches result with fewer reactions. Is it better to half the dose during the illness or skip the dose entirely but potentially make the time when the dose is resumed more dangerous? I decided to simply trust our doctor and go with his recommendation.
Two of Sebastian’s allergens are still in liquid solution. Those are very easy to halve. The trickier thing was splitting the two allergens that are in capsule format. Here is what I recommend doing:
1. draw 10 ml of juice* and pour into a shot glass
2. empty capsule’s contents into shot glass
3. stir furiously with a toothpick
4. very quickly, while solution is still spinning, draw up 5 ml in your syringe
The capsules contain nut pieces mixed with baking soda. The first time we split the dose we just used water and my son literally gagged when swallowing it. I tasted it and it was seriously revolting. Use juice as it needs to be mixed with a masking flavor.
This really isn’t a good long term solution. Some of the walnut bits weren’t ground fine enough and refused to go into the syringe. I’d also love to have a tiny, lidded shakable container.
I sat with him for an hour after dosing to watch for any type of adverse reactions to the dose. I saw what might have been a hive on his cheek, watery eyes, and of course coughing. The last two were probably just due to being sick and not dose related. I sure hope he is well soon!
*I’ve tried three juices so far. While apple juice was better than water, he still complained of the flavor. It wasn’t strong enough to mask the baking soda. We then tried cranberry juice, which did mask better however the baking soda reacted and foamed making it much harder to draw out half of the solution. I finally found something that got the double thumbs up. Make a kool-aid pitcher but uses 3/4 the sugar and 1/2 the water. The result is a syrupy sweet concoction that does the best job we’ve found at masking the baking soda.
Two months before starting OIT Sebastian had RAST testing which showed:
Peanut IgE 52.2 kU/l, Ara 2 40.6
Cashew .93 kU/l (3.58 kU/l after ANA event when 2yrs old)
Walnut 2.37 kU/l
Sesame 1.94 ku/l
The blood work numbers were all down about 20% or more from prior testing but the allergists thought although they were going down for the first time in his history, it wasn’t substantial enough to indicate he would outgrow the allergies. From what I understand high RAST scores can only qualify you for OIT, and not disqualify you. The only conditions I’ve heard that will disqualify someone from OIT is asthma that isn’t well controlled and Eosinophilic Esophagitis (EoE). Environmental allergens should also be fairly well controlled.
His latest skin test were:
Peanut (not taken because RAST scores)
One study I keep coming back to in order to compare experiences is Safety and feasibility of oral immunotherapy to multiple allergens for food allergy. Page 8 of the supplemental material lists the baseline allergy tests of all participants. My son seems to have the average SPT and lower IgE than most study participants.
We are still in OIT! Since my last post we’ve had a couple itchy eyes, a sneeze, a burp one tummy ache, a couple loose stools and zero scary reactions! We just finished our sixth OIT office visit. According to our protocol, if all goes well we will “graduate” in eleven more visits. I hope we’ll be finished in mid-December.
Here is what he is taking right now:
Peanut 25 mg (4.1% of a peanut)
Cashew 40 mg (3.2% of a cashew)
Walnut 50 mg (1.3% of a walnut)
Sesame 30 mg (.67% of goal)
I am a bit nervous now that we’re in the 25-50 mg of peanut zone. I’m hoping to see no signs of EoE.
Two updoses ago Sebastian switched from cashew liquid solution to powdered cashew in capsules. Yesterday he switched to powdered walnut. I love having two fewer oral syringes to wash twice a day! I have to open the capsules and mix the contents into a spoonful of applesauce, pudding, etc. Our first day home with the cashew capsules I mixed the dose into a spoonful of yogurt. He complained the powder was “spicy” which I thought was his way of describing an oral reaction. I tasted a tiny bit of the yogurt myself and I could see what he meant with his description. According to the bottle’s label the cashew had been mixed with sodium bicarbonate (baking soda), I suppose to give it bulk and keep it fresh. The baking soda reacts a bit with the yogurt. We switched to mixing it with pudding. My non-FA daughter thinks she needs pudding twice a day too!
Beating back these life threatening food allergies (one mg at a time) is so very empowering!
I felt so silly talking with my son’s allergist after hours because my son was losing a tooth.
We were one hour away from his evening dose when Sebastian’s wiggly tooth started bleeding. My mind immediately went to how it would affect OIT. The allergist reassured me it this was something reasonable to be concerned about, recommended that I wait until the tooth wasn’t actively bleeding to dose, to get the liquid as far back in the mouth as possible, drink afterwards, and cover the bleeding area with a barrier. He recommended we use petroleum jelly (gross!). I followed all the doctor’s orders except the last and attempted to barrier the area with plastic wrap (huge fail). I also combined all the liquid doses into a shot glass with a straw and jammed that sucker as far back in Sebastian’s mouth as he could tolerate, poor guy. Other than my son’s utter bewilderment there were thankfully no unusual reactions to the dose.
The next two weeks on the same dose passed uneventfully. Sebastian reported mouth watering on three occasions but the throat clearing thankfully appears to have gone away.
The doctor’s office is about a three and a half hour drive from our house. Sebastian woke early the morning of our drive in and chatted with me the last hour or so of the trip. The vast majority of our drive is expressway however due to our early appointment time when we drive into Dallas it is always during morning rush hour. As soon as we hit the stop and go traffic Sebastian reported he didn’t feel too well. He had just gone two weeks without any nausea or vomiting so to see him start not feeling well the exact same spot he felt poorly two weeks ago indicated to me it was just car sickness. I was absolutely elated at this realization!
Over the past couple of weeks I read everything I could on OIT and EoE including this article that came out of the practice that is treating Sebastian. It states that patients presented with EoE symptoms at 25-50mg of peanut flour/dose. Sebastian is now on peanut 10mg, cashew 10mg, walnut 15mg, and sesame 12.5mg. From what I read he has many risk factors for EoE (caucasian, male, asthmatic, atopic dermatitis, multiple food allergies, early antibiotic use) I won’t feel we are “out of the woods” until he passes 50mg of peanut without problems. We’re still five updoses away from 50mg. Seems like a long way off.