Some more excitement

So I was so proud of myself for not blogging in several days and here I am doing it twice in a single day. I guess this is kinda the 'two steps forward one step back' I
discussed in my last post!

Today was day two of being back up at his regular dose. He watched TV and I watched him.

 And he began scratching. I asked myself 'is he scratching because he's really itchy? Is it because he thinks it's 'expected' of him?' I'm not sure how to find the right balance between him telling me what is real and between him subconsciously thinking I'm expecting a 'performance'. But he began scratching his arm, then his other arm, then his chest, then his leg, then his other leg. Then rubbing one eye, then the other eye. Never once complained, just did it nonchalantly. If I asked him if he's itchy, he would say yes. It wasn't non-stop scratching. Just every few minutes he'd go at it.

After the hour of 'intense observation' was up, it was time to get to TABC for carpool. I checked his skin where he was scratching and noticed small dots all over his body. It didn't look like hives but it looked like a 'something'.

Raised bumps on the side of his torso (there also were on his back)

Um, okay. It kinda sorta looks like eczema that he has all the time on his upper arms- but not as much- and he had just been scratching. Yitz happened to call me as I was about to run out so I tell him what is happening and I text him a picture as we jump into the car.

(I had checked with the doctor in advance if it's okay to go into the car after dosing, especially if the first hour of intense observation is finished and the doctor had said yes. I purposely time Coby's dosing to have had an hour at home before having to run out for carpool.)

While I am driving Yitz calls me and told me that he had e mailed the picture to the doctor and the doctor said to give him benadryl. "I'm Driving!" Coby seemed okay- still not complaining and itching has died down a bit. "Doctor said if he's itchy he needs benadryl to keep it from getting worse." I really did not want to pull over on the highway to go into his epipen stash to grab THAT benadryl to dose him. And honestly I'm kind of afraid of benadryl. I'm so nervous it would mask the symptoms of anaphylaxis as was the case with the 13 year old who died. She had bitten into a rice krispie treat and when realizing it was peanut she spit it out. She never had a bad reaction before. She seemed fine, so her dad (who's a doctor) gave her benadryl. Twenty minutes later she took a turn for the worse and the dad ended up giving her THREE epipens (he even broke through glass to get to the 3rd one and tore up his hand real good and ended up needing surgery to fix it) but it was too late. Benadryl masked the outside symptoms while meanwhile her insides were beginning to fall apart. Many doctors now don't even have benadryl at all in the child's emergency anaphylaxis plan.

Yitz told me that the doctor was going to get to his e mail to look at the picture and I should call him in about a half hour.

"A half hour? I'm not even AT Tabc and then I will be in rush hour traffic- I'm not going to be home for another 45 minutes!"

Every few minutes during the ride I asked Coby, 'are you okay? are you itching?' He said he was just a little itchy.

(When Coby had his food challenge- our doctor said to NOT even ask Coby if he's okay because it will just stress him out and instead we just watch (and the doctors and nurses keep checking vitals)- but for that they thought it was a high possibility he was NOT allergic to those things- but this time we know he IS. And Coby does NOT complain ever. If I don't watch him like a hawk he wouldn't say a word about what's going on so I have to ask him at times and keep reminding him that it's 'fine' if he feels weird, but he NEEDS to tell me.)

Of course on the way home not only was it rush hour traffic, but a lane got closed off due to an accident. But hey, we were better off than the people in the accident! Hope all is okay there.

As soon as I got home my cell started ringing and it was a nurse from the doctor's office asking me what happened after I gave Coby the medicine. "Uh, I didn't give it to him- I was stuck in the car- I didn't get into that car until after first hour of observation was done- and now spots are still there but didn't spread and he's still itchy but not AS itchy."

"Okay then you probably don't have to give him the benadryl but let me check with the doctor and call you back."

"Wait- did you see the picture my husband e mailed you?"

"Yes."

"It didn't LOOK like hives."

"It's not hives, but there is something there- it almost looks like a heat rash." (which we know it's not because it chilly in the den and cold outside!)

She called me back a few minutes later saying as long as Coby's doing a bit better I don't need to give him the benadryl but then she goes on to add, "And the doctor said to continue on this dose tomorrow and NOT to down dose,." down-dose???? I didn't even realize that was a possibility. I told her I'd make sure from now on to check his skin BEFORE dosing as well in case those bumps were already there. (who knows- he's on so many different things- maybe it is something else- I never did check his skin beforehand)

She told me to call on Wednesday to talk about updosing on Thursday. Though I'm getting a bad feeling in my gut that they may tell me to wait another week to updose. I know, I know slow and steady wins the race- but it. is. so. damn. slow. and. frustrating. I am keeping that thought to myself and actually encouraged Coby that going slow is great and told him the story of the tortoise and the hare to illustrate my point.

The nurse then hung up but not before she reminded me, "feel free to call back at any time with any concerns." It's gotta be hard on them dealing with all this OIT stuff and all the extra 'hand holding' it entails. This is one reason there are only 70sh doctors cross country that does it. (Just a few years ago it was as little as ten!)

Anyway, blech. Two steps forward one step back. I know, I know.

****Editing to add- nearly 4 hours after dosing it's all over his back too and he's still scratching so we decided to go ahead and give him the benadryl after all.