Am I crazy?

[MMWG]

Hi all--

My ds (6) has PANDAS and we are homeschooling him because of the extensive negative reaction he seems to have whenever he is with a group of kids in a closed in space for extended periods of time. Our pediatrician explained it as him having a very sensitive antennae that reacts whenever someone near him has an illness of any kind. We have him on preventive abx (cephalexin). He has been healthy and doing pretty well since September (a few isolated incidents here and there, but controllable).

 

Last week I took him to a birthday party and within an hour one of the moms mentioned her son was running a fever (of course the mom of the little boy he had been playing with for an hour!). I cringed and we soon left. 4 days later we started seeing PANDAS like behavior--becoming very rigid about something all of a sudden, locking in to something he wanted and refusing to budge, refusing to do things he normally would love (games and puzzles with his tutors, hiking with dad, etc). He started taking naps in the afternoon and was very sweaty, which I suspected was his version of being sick.

We have seen more and more of these episodes occurring this weekend, closer together and more severe than what is normal for him. A few meltdowns once in awhile is typical for him (whether it's PANDAS or his temperament, I don't know, I have given up trying to figure that out). As he gets older, we are trying to be firm as possible about his behavior--even if he is sick, we want him to try to find more appropriate ways of letting us know--and he is very strong willed so it is tough to tell what is under his control and what isn't. It drives me crazy trying to make sure we are correcting behavior that is under his control while not punishing him for things that he cannot help. Anyway, it became pretty clear to us that he didn't have much control over these episodes this weekend, he could recover but only after he fell asleep, or after a long while cooling off in his room.

 

The kicker for me was this morning. He started school with his tutor like he does every morning, and I was waiting to make sure they got into a rhythm before I left for work. I heard him refusing to read his part of the story, and she was trying to talk him into it. When I went up there to straighten him out about who was in charge (we have to do that every once in awhile), he refused to look at me or read. Normally I can get him straightened out. I told him he had to go to his room until he was ready to listen to his teacher, and he went into full fight or flight mode, screaming that he needed to be in school and do his schoolwork--but refusing to read the book. Finally I took a deep breath and sat down with him in my lap, had him take some deep breaths, and asked him if there was a problem about the book that I was not understanding. He said "Yes, I can't read that book (he is an amazing reader, and he really wanted to know what happened in the book, so this was weird). It makes me have to clear my throat too many times." This sounded so PANDAS-like to me--that the book would make him have to clear his throat. I asked if he would be able to listen to that book and then read the other one that was on the schedule, and he said yes, that would be fine. So we did that. His tutor said he made it through half of the other book before stopping all of a sudden and saying he could not read that one anymore. She steered around it and went on.

 

Our pediatrician raised his abx to treatment dose this morning after I called him, so I guess we just ride this out. His tutors are great and understanding. I had signed him up for a homeschool co-op that was to start this Friday that would allow him to be in a class with other kids his age all day on Fridays, and I could be with him. But after seeing how sensitive he still is (one hour with a kid with a fever=one week (so far) of exacerbation) I made the tough call to pull out of the co-op. I am afraid it's too many germs to expose him to.

 

Am I crazy? Can he really be THIS sensitive to germs? How is this poor kid going to have friends? We have had some success inviting a couple friends to go on field trips with us, or over to play...do I just keep that up instead? Our pediatrician talked with Dr. Murphy and he said she suggested minimizing exposure at all costs til he is in at least third grade. She said the fewer times his antibodies rise in reaction to exposure, the better off he will be long term.

 

I guess I need someone to tell me whether I am being paranoid and sheltering this kid too much, or whether it is quite sane and reasonable to not let him be in a closed space with 15 kids every Friday given what just happened this week....

[thenmama]

No you're not crazy. Yes it is possible, probable even, that he's this sensitive to germs. You're not being paranoid. We live in holed-up mode when necessary. We're currently being paranoid and sheltering ds who really can't take another hit to his immune system. He's also in an exacerbated state, so homeschool group activities are off the table until his PANDAS is being treated effectively and he can better handle things.

 

Our kids are remarkably similar in their PANDAS presentation-- we've even had book reading and throat clearing issues this week (!), though I think the book he was reading may have been making him do something else, and the throat clearing is just pretty constant so happening simultaneously. Anyway, for ds both issues are PANDAS-related.

 

It sounds like your guy is definitely exacerbating, so I would go at that with all you can. I don't know if you've ever tried dosing with Motrin for quick, short term relief, but that'd be worth a shot. And depending on your ds's doctors and circumstances, a course of steroids might be considered at some point to bring down the inflammation.

 

I've got to cut this short to run and get my kids some labs-- but wanted to reply quickly to say I think you're sane and your decisions justifiable. And if not, we're at least we'll be crazy/paranoid in good company

 

Hang in there!

[momcap]

That's a tough one. We desperately want our kids to have normal lives, or as close to it as possible. But at what price? I didn't really have the options you have, because I have 3 boys, now ages 5, 6 & 8. AND all 3 kids carry strep. DS8 was in constant exposure no matter what I did. So I didn't bother trying to protect him from other germs. But looking back I would have tried harder to eliminate some exposure. I babysit other children in my home and I think that really contributed to the amount of illnesses he suffered through (PITANDS). Especially the toddlers who don't remember to cover sneezes, and wipe their runny noses with their hands. I'm cringing now just thinking about it.

 

Now that DS8 is doing well I avoid others when I know they are sick. He was exposed to illness this past week and I'm still holding my breath. I'm developing an OCD fear of germs myself. But he does go to school (we homeschooled most of last year) and I know he's being exposed to germs daily. We have a pretty extensive supplement program that offers support to his immune system. It might be worth consulting with a naturopath, or another professional who could help you in this area. For what it's worth, I would have cancelled the Friday thing too. Especially when a PANDAS specialist is telling you it's the right thing to do right now. It sucks, but IMO it's the lesser of 2 evils at this moment.