This OIT update is a difficult one.
This past Thursday Sahil and Jaya received updose #9. I was hoping for another boring updose appointment but it didn’t turn out that way.
9:20 am – Jaya got updose #9: 20 drops of milk. A few minutes after the dose, she started to complain of a tummy ache & wanted to go to the bathroom. On the way back from the bathroom she complained of a worsening tummy ache & itchy eyes.
9:35 am – Dr Hanna brought her liquid Reactine. She swallowed some but then threw it up. Jaya seemed to be worsening, her eyes were bloodshot and she repeatedly took deep breaths as if trying to get air. She started to get very sleepy. The decision was made to administer epinephrine. She sat in my lap, crying & said “Mommy please, I don’t want to die.”
9:45 am – Dr Hanna injected 0.15 mg of Epinephrine in to her left thigh. Jaya was then moved to the examination table in our treatment room so she could lie down. Her breathing and blood pressure were repeatedly checked by the staff nurse. Her tummy started to feel better. Still congested, she began to develop hives & complained of stinging all over her body.
10 am – She was given a Reactine meltaway tablet which she was able to ingest.
10:20 am – She was still feeling very uncomfortable, not speaking much, extremely congested, hives were continuing to form on her chest, back and face. Her face looked red as if she had a sunburn. She received a 2nd dose of 0.15 mg epinephrine in to her right thigh.
I looked over at Sahil. He had red eyes filled with tears & sounded congested. I was worried he was reacting to his dose. He just pointed to Jaya, he was frightened and worried for her. Thankfully, he did not react to his updose to 1/2 peanut.
The second dose of epinephrine seemed to be working.
10:45 am – Jaya started chatting and bossing Sahil around – she was feeling better. The hives were subsiding and her eyes no longer looked bloodshot.
Jaya was monitored for over 2 hours after the second injection of epinephrine.
1 pm – We were discharged from the office. Jaya was asymptomatic. We were instructed to monitor her at home in case of a biphasic reaction. A biphasic reaction is a second anaphylactic reaction caused by the initial ingestion and can occur 10 – 24 hours after the first reaction.
Later that night she developed hives again, a slight tummy ache, a slight runny nose and complained of feeling dizzy. I gave her an anti-histamine and monitored her throughout the night in case she was having a biphasic anaphylactic reaction. Her symptoms did not progress, she slept through the night.
20 drops of whole milk caused Anaphylaxis. That’s less than 1 mL. Until updose #9, Milk OIT has seemed mostly uneventful and I felt my own fear lifting a little each day. After seeing Jaya experiencing Anaphylaxis, being betrayed by her own body, I am again exquisitely aware of the fragility of life.
Dr Mack called us at home the next day. He said Jaya can still proceed with OIT but at a much slower pace: 2 drops on the day after the reaction and then continue at 10 drops for a month when he’ll determine what the next updose should be.
Yesterday, the day after the reaction, Jaya was undeterred. She asked for her dose after eating dinner.
4 Comments Add yours
Dear Jioti, I send you a lot af peace.
I hope the best for your two child, and good recovery.
You are doing all what it takes to get them
The choice of liberty. It is so a big commitment, faith in oit and especially in the precious e doctor that couldn’t do it without of you too. Courage and keep your so kind spirit. It inspires us!
Thank you Isabelle for your kind and supportive words.
You are all so strong and courageous. Since my daughter also has a dairy allergy, this is a reminder of why I feel as protective as I do.
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Omg that must have been so scary.
Jaya is so brave, Sahil too.
I pray the OIT is successful. Hang in there.
Sending love and prayers
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