From concern to panic- PANS dd, now PANDAS son?

[BeeRae22]

I posted not long ago about my non-PANS son. He suddenly started exhibiting OCD behaviors surrounding food (specifically people chewing with their mouths open) and some others- (confessing, checking, etc.)- then came the 4 day fever, and later he showed slow improvement as his health returned. He's still sitting by himself in the cafeteria at school, but is actually eating a little bit, and joining friends when he's done. Still has/had anxiety issues/worries, but nothing unmanageable. This began in October. The (useless) pediatrician did a rapid strep, (negative) but my son squirmed away and pulled back so fast I'm not sure the nurse even swabbed his throat.

 

Well, Friday (18th) ds (just turned 8 last week) woke with a horrible sore throat. What he kept saying was that he couldn't swallow his spit, and didnt really SAY "my throat hurts" so I actually thought at the time that he was having sensory issues. Friday night, he cried complaining about his throat, and tossed ans turned and whimpered ALL night and he's usually a very sound sleeper. Saturday am he cried and complained he couldn't swallow. I gave him a super-sized dose of Motrin, and he was fine the rest of the day. The rest of the weekend, he had an on and off low grade temp, but seemed ok. Yesterday evening, he was lethargic and warm (not sure of temp) but otherwise seemed ok. Said his throat hurt, but not as bad. Might've had a fever though, but I'm not sure because I was giving him "surgical doses" of Motrin through most of the weekend.

 

Here's the bad part. Last night, we went to pick up take out at our local pizza place. The woman owner was there, that we know well. She had her baby with her, and introduced her to us. So we're taking with mom and baby, etc. and the baby seemed to take a liking to ds- she was really smiling at him and reaching out for him, and the mom commented now she never does that, and how she must really like him. Ds didn't say much, he smiled and we left..... Then we got home. As soon as we walked in the door, he became agitated and upset, saying "I know you won't like me saying this, but I want to say that I HATE that baby. She really freaked me out. I NEVER want to see that baby again!". He was a mix of angry and upset, kicking at the rug on the floor. I told him that she just liked him, and thats why she was smiling and reaching for him. He replied "I don't want her to like me, and I don't want anyone in the whole world to like me. I hate that baby and I don't ever want to see it again". He continued to be upset and agitated, then I finally got him to sit and eat. A few minutes later, he came up to me worried, saying he couldn't stop thinking about that baby and he hated it, and was worried that he would think about it all day at school tomorrow. This is so out of character for him. He is a sweet, very agreeable boy ALL THE TIME.

 

Then..... This morning, I noticed a bit of a rash on his neck. Nothing drastic, and I dismissed it quickly. Then this evening, I remembered to look at it again. Light red, bumpy rash on neck, chest, stomach, groin and back. then I remembered my husband saying that last night he'd tried to look at his throat but ds wouldn't let him. Well, he let me look tonight. Dark red patch on back of the roof of his mouth. Red, inflamed tonsils and white bumps on back of his tongue. Whitish coating on tongue. Yep, congrats mommy- I think I've discovered strep with a side of scarlet fever.

 

I am beside myself with panic.....severe PANS Dd (just turned 10 last month) is weaning off of abx after 2 years of treatment, is finally recovered, and she was NASTY yesterday. She's been "edgy" since we took her off the last med a few weeks ago, but nothing really significant. Yesterday? arguing and defiance turned into hitting and kicking.

 

I feel like I'm losing my mind.

 

Took tomorrow off from work so I can be with my son, who is panicking because I told him we have to go to the doctor, and he's asking me to promise that they won't do the "throat thing" again (rapid strep). He has a great deal of anxiety about that from last time.

 

Worse than that though.... As much as I like dd's PANS doc, I can't afford to be bringing another child there. I really can't. $1,000 eval, and $200-$250 per visit after that, plus supplements? But it's plain (for me, not husband) to see that he needs to be seen.

 

What am I going to do? I guess the good thing about strep (vs. dd's mycoplasma) is that the ped will Rx abx (short term though) and I'll get a chance to see how he responds, and strep/PANDAS diagnosis seems a little more definitive than dd's PANS-mycoplasma-and-suspected-bartonella-but-not-confirmed diagnosis. (Although not much).

 

I need help.... Well, my son needs help first, then me.

 

Thanks for listening.

Edited December 22, 2015 by beerae22

[cynditk]

None of the PANS docs are covered by insurance? Sure you can't find one that is? Have you solicited recommendations for your area? Can you travel? Our doc is covered where we are. she is not a specialist but has educated herself and treats PANS.

[dasu]

I am really sorry to hear this. I also know the feeling of dread when you consider another child has PANDAS. It is so awful and dehabilitating for children and parents.

 

Thanks for telling your story, details and all. The standard psych terms for the mix of PANS dysfunctions failed to communicate just what the child is going through and what that behavior looks like in day to day life. So your story about obsessively hating a cute little baby illustrates the absurdity of it all. (BTW, in the early years of PANDAS we caught my son pinching babies a couple of times; we could never figure that out until diagnosis.)

[bws1565]

My kids reacted to strep this way several times. This does not have to be full blown Pandas. A nice heavy dose of abx might just cure it all. Definitely don't panic before you see results......