health, medications, Pans/Pandas, sleep, Uncategorized


cut & paste (boy on lap)

for right now a copied note of how things are going….

Colleen was sick the other day but doing better and went to school yesterday. Colleen was complaining about her ears last night. If she has further problems today I’ll take her to the dr. tomorrow (today if absolutely necessary but Chris is home today and has to go to the neuro where we’re there for like 3 hours….).  Rog is staying home to help watch Ryan and get Colleen after school.

Ryan has a cold right now.

Yesterday actually seemed very hectic…. it just goes on and on. But Chris did okay – we did end up picking him up at school – we took him to the pediatrician who could not find anything physically wrong with him.  (Teachers and nurse etc. were saying they were concerned he was so upset and acting strange that he might be having med reactions). He said the very bad danger signs to look for in med emergencies like the Seroquel he’s on, are him bending his neck back and not being able to return it to the upright position, and him sticking his tongue out and not being able to return to his mouth (aren’t those so strange???!!!). Neither of these appeared so he said just give him some Benedryl in addition to the Seroquel, and that is supposed to counteract any side effects that may occur,  just until we see the neuro today.

I personally think he had a bug, similar to what Colleen and Ryan have had. And he is SO sensitive that he reacts to everything extremely. He did not eat at all yesterday except finally in the evening, a taco. He would not take his meds in the afternoon so completely missed one of his Seroquel doses. He would not drink anything. So finally last night he drank a lot! He had diarrhea a few times. This morning he’s up after only about 4 hours sleep and is crying out again. So I wonder if he’ll have diarrhea again. He is drinking, but not eating, now.  Rog stayed up with him, bless his heart. Ryan woke up and kept me up tossing and turning for a while. So I didn’t sleep well either – but more than Rog. So Rog is sleeping in a bit.

Chris was up late last night and is up early this morning. He is still crying out and kind of pacing. At least he’s not running outside or hitting himself or us. I hope this dr. has some guidance today!

Another 2020 note flagging these to check about Pans/Pandas ….

I need to write a long note to the school but haven’t had time. The SERRC lady wrote and gave her support for Chris (below) which was encouraging — I wrote her a partial reply last night but then had to go running with Chris & Nicky and never got back to it.

love d


I stopped by to see how Chris was doing, but he had just left! PLEASE let me know what’s going on..

We have lots of questions about how to proceed. We believe we need to meet again ASAP, staff, with MRDD, supervisor, me…

Has MRDD been notified that Chris’ level of support may have changed?

We WANT to support your family and Chris through this difficult time.

Please contact me.


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