L Haven

<<When my daughter was at her worst, I just tried to help her get as much joy from her day as possible.>> dcmom, this really, really helped me today as we spent another day out of school. Thanks :-) Lena

When my son was little he had a bizarre reaction to liguid prednisone, and his ped gave us a compounded/liquid form of . . . Baby Valium, I guess. But there are certainly things like Benadryl, etc. Do you have a regular psychiatrist? Would your GP or pediatrician prescribe some low dose soother? There is also 2-point restraint, and 4-point restraint taught in the Management of Assaultive Behavior. It's a way of holding which keeps the child safe, as well as yourself, while you wait for her/him to deescalate. I'm so sorry it's so tough. I know from experience there's something so heart-hurting about violence or meanness in your child. Stay strong :-)

We are looking for a pediatric neurologist and a pediatric psychiatrist in the Boston area that are not on staff at Children's Hospital. I know one member mentioned Elizabeth TePas at Newton-Wellsley; does any one else have a suggestion? Has anyone met Daniel Geller at Mass General? I will also check out Dr. Latimer, Dr. K., and the other doc that members have recommended. Any help is greatly appreciated. We are making the switch immediately. Thanks! Lena

Well that's not very thoughtful! Do the parents of your child's friends know about the PANDAS? We're grateful - people have been really good about giving us info before a play date. Keep hand gel by the doors and sinks of your house, and have kids gel as they come and go. Make sure they're not sneezing into their hands. When I feel like I just can't risk it, one remedy is a computer game simultaneously played in both houses. There are several good ones: Puzzle Pirates comes to mind (as long as they sail on the same sea, they can "see" each other, and play games together. I've also let the kids chat with each other while seeing each other thru the computer cams in each home. Lena

That makes a lot of sense, Colleen. Hmm. It was Dr. Fuhlbrigge who prescribed it, and I know he's thought well of on this forum.

We met Dr. Bonilla at Childrens in Boston in 2003, when my son was first diagnosed. We liked him very much, and at that time he was definitely on board with IVIG. Lena

Thank you so much - all of you who reached out. The amount of information and experience in this forum is amazing. Best wishes for the health of all our children, Lena

T.Mom, we're in Boston. I will definitely check out the list of docs. Thank you! Lena

We were never, ever told about antibiotics post-IVIG! The only way we've used abx is if we knew he'd been exposed to strep, we'd call asap and get a scrip to fill. Usuallly Amoxicillin.

I actually feel much better looking at it that way! Thank you, Vickie.

Or else he will no longer treat my son. Whom he's seen for 6 years. I got this in an email, btw.

Right now he is on (and has been for almost 2 years): Lorazepam, 2 mg a day Orap (shudder; this is a big gun of a drug, we agreed to it after IVIG didn't help), 4 mg a day (titrated up from 2 mg a day) Bupropion (400 mg a day) for depression. This was just upped from 300 mg. What do you think, Colleen? Lena

Hi Colleen, Penicillin, 1000 mg a day. Does that make sense to you? Thank you - I value your input - from all of you! Lena

Thanks, Vickie, that's good wisdom. It may be that not all of the docs agree with the PANDAS diagnoses. I honestly have no idea why he's recommending it. In the Hospital's extensive website about the locked unit, they don't even mention PANDAS or Tourette's, aspies . . . among the listed conditions/diseases. What was the prednisone for? In 6 years my neuro has never mentioned steroids. And we've had IVIG! I'd feel better if I thought it WOULD have benefits; in fact I think it would absolutely terrify him, and he'd feel very betrayed.