2 weeks post IVIG--ed left ear, low grade fever & DS still losing it

[Sirena]

So we are now two weeks post IVIG and the craziness continues. DS7 has times when he's "all there" and other times--daily-- that he goes off the deep end and can't calm himself. He's very aggressive (hitting, punching, throwing) and his language is horrible. Drops the f-bomb, etc. He feels bad about it but still can't get a grip. There's often an association with a temp like 99.4F and one (left) )red ear. That is the same side where he had an infected tonsil (T&A in Sept). He's still on Azith and ibuprophen. I uprophen does seem to help.

I'm wondering if he's still fighting some infection. Interestingly he holds it together in school (1st grade) but says its to much to have to do it at home too. He was considering sending his beloved elf on a shelf back to theNorth pole early this year bc the pressure was too much. I'm thinking we need to revisit other infection possibilities again. Any thoughts?

[emst]

My first guess would be inflammation post ivig, then infection -- no matter both are bad for you and him. Are you treating this? What are you using? Pls post, thanks, Erin

[wisdom_seeker]

As far as infections, we've not had IVIG, but if he's got a red ear on that side, plus a low-grade fever, both somewhat responsive to NSAIDs, that's what I'd be thinking about as well.

 

What side does your son sleep on? I wonder your son might have something like a sinus infection in a left maxillary or ethmoid sinus, despite the Augmentin. (Once when my DS16 was DS9 and had complained of ear pain, it turned out to be complication of a sinus infection, as was pneumonia. (and too he was going to school, for he was on antibiotics already, and at that point was hardly ever completely healthy)

 

Second, I am glad that you understand he's suffering the entire day, even though he only loses it for part, after school.

 

DS16, who now has PANS talks about how hard he has to work to keep it together, (esp around DH, who wouldn't hesitate to take away media for profanity, no matter that it is one of the few things DS uses to distract himself and pull himself together). So keeping it together around DH means that he's sometimes less helpful, more whiny and/or mildly aggressive around me, because I'm safer. And then he feels guilty, because that's not how he wants to act.... but can't help it. So your son keeping it together at school may well push him to his limit.

 

It's impressive that he's self-aware and articulate enough to explain that! Tell him so!

[Sirena]

EMST.

 

I responded previously but for some reason it didn't post...Anyway, DS is just getting ibuprophen and his daily Azith currently (and probiotics, Vit D and fish oil). So, Idk.

 

Wisdom Seeker,

You got me thinking and I checked his sleeping habit but he seems to vary from one side to the other without a pattern. I appreciate the feedback about the "keeping it together at school" because I've been finding it hard to explain to others and I am feeling a bit resentful and guilty (as in is it my fault??) --even while I "know" intellectually that he is working very hard to keep it together at school. It helps immensely to know that this is common in our kiddos.

 

Sirena