bronxmom2

Hi all, I haven't been here in a while. My son, who is now 10, has been doing great. But I recently took him to the dentists for the first time in a year and a half (because it always triggered problems) and, sure enough, he is obsessing and hopping around again. Nothing too bad... but it is quite evident. Has anyone figured out how to protect a kid who is in "remission" when he goes in for dental cleanings? Avoiding the dentist entirely is not an option obviously...

Hi norcalmom, my son always had a STRONG reaction to dental cleanings. I know I may pay a higher price for this later, but I try to be strict about brushing and avoid the dentist. Hope he gets better soon.

There's a station walking distance from Dr. B's-- Noroton Heights. Easily, pleasant trip from Grand Central. This is by far easier than driving, since I95 northbound is the vortex of suffering. Absolutely no need to rent a car.

The most revolting article I've ever seen...

He had his last IVIG in Feb 2011, by the end of the summer he felt solid. So.... 7 months? Which is just exactly what they tell you, but you don't quite believe because you can't quite see it as it's happening.

I believe you will. Because you've already proved that you won't rest until you do. You have become hyperalert to every sign of trouble, but one day you will start to breathe a little easier. It's like raising a toddler... watching them every second... then one day you realize that you're taking a long, hot shower and your 3yo is playing somewhere and you're not even worried about it. Anyway I believe you'll get there because you won't stop until you do. As Dr. Latimer said to me (with a sly wink): "The PANDAS crowd is very persistent."

Hi all, just wanted to give an update on my 9yo son. I hope it will give some hope to you if you feel like you're not getting anywhere. 3 years ago, my son seemed to slip away from me in a haze of delirium, only to come back when he had antibiotics, only to slip away again after they stopped, only for me to realize he needed them permanently, and then to realize that even with full-strength antibiotics he was not the same as before, he could not be around other kids without going bananas, he'd probably had strep colonized in his body for years, horror of horrors, he stopped being able to count, etc. After PEX, after 5 or 6 IVIGs and much gnashing of teeth over whether it was doing any good at all (and finally adding a small dose of Strattera)...I would say that today my son is 100% totally fine, in fact better than fine. He is amazing and I am extremely proud of him and enjoy his company immensely. He was out of school for years, and went back this year. We were lucky to get an incredible teacher who appreciates my son and best of all creates ways for the kids to write via the computer (a class blog) that do not feel like "accomodations"-- my son would have rejected being singled out, but all the kids are writing on computer so he goes with it. This is a kid who until this year did not write. ANYTHING. Would completely freak out and panic at the site of a blank page. Hysterics. Yesterday I casually asked the teacher how he was doing, especially with the writing, and after a moment's pause he said, "I'd say he writes like an intelligent adult." This is incredible. He will always be quirky, messy and highly disorganized, he has definitely come out of this with his faculties intact and with a real will to be his own person. I might even go as far as to say he is stronger than he might have been before, because he is compassionate. And now I know to be careful with him. Anyway sorry if this seems braggy, but you guys will permit me. I recommend a teacher who can let kids write on the computer without making the kid feel "weird." (My kid is weird enough.) Also, I was reading the conversation about the BBB and I think it's definitely important to try to cut the stress your kid experiences, any way you can.

One of the best PANDAS article's I've ever read.

I just want to concur that the behavior charts are not going to work and will probably just undermine your son's fragile self-esteem. My son exhibited lots of behaviors that seemed (like your son's) to fall between impulsive and compulsive. He is also 9. Advil or Aleve in the morning to address the inflammation are a good idea. I also give my son fish oil every morning, though I'm not sure it does anything. For us, adjusting his brain chemistry with a low dose of Strattera has been a magic bullet. BUT... we were pretty far along in the healing process (3 years of abx, PEX, multiple IVIGs) before I did this, so I did not do it when he was exhibiting his most maddening and inappropriate behaviors. He was better, but still struggling a little bit and I was confident that his remaining issues were not going to resolve without some additional help.

Sent chills down my spine. I was treated this way, 25 years ago, when I became suicidal in what was almost certainly a PANDAS exacerbation. I was locked in a room and left to cry alone.

I am not sure but I don't think Lauren's daughter had OCD... or anyway this is not the first thing they would have identified.

Hi Michael, It actually sounds, between the lines, like your son is doing great! I think you should honor his wishes and rescue him from that situation. There is a great homeschooling community in NYC called New York City Home Educators Alliance(NYCHEA)-- you can google them-- for a nominal annual fee you can get all their listings of amazing things to do to nurture your son, if you have the time to do it. This was a good alternative for us for several years. My son is back in school now, and doing great. I don't think your son should be in a special ed classroom. You must have an IEP for him, so maybe you can get the DOE to provide some tutoring services at home. Good luck.

Wow, this is huge. Thanks for posting. The language in the media is changing dramatically, ie "I used to think it was exceeding rare, now I think it is exceedingly common."

Time. And, maybe, low-dose strattera

I posted this because my son has not written ANYTHING for several years... now that he has started writing, this is what comes out. Astounding. If you could have seen how limited his writing was before... well, I'm sure most of you know about that.