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.

Hi dcMom - I really don't know why he's suggesting it. My son has PANDAS, but not OCD. He has the ticcing/motor movement problems. He is depressed about having been ill, but he is on antidepressants, and is thriving in school. He laughs frequently, and looks forward to things like a family vacation. His neurologist has been handling his medication, but we are taking him to a psychiatrist. We've just started abx (I think that means antibiotic treatment, yes?), and I don't even know what a steroid burst is. No one has ever mentioned it to me, and he's been diagnosed for 6 years.

Guys, I really need some input. Those of you who posted about PANDAS and self-injury: Did your neurologist/doc ever suggest a locked psychiatric ward for your child? If so, did you agree to it? I really thought I was doing the right thing for my child . . . I had this conviction. But maybe I'm a total jerk and I just never noticed before. Everything in me resists putting my 11 year old in a psych unit; he'd be terrified, especially with the separation anxiety he feels right now. Will you please share your experiences with me? My boy is depressed due to having had PANDAS symptoms for so many months, but he's not suicidal - he's never hurt himself or anyone else. The worst he's done is scratched his arm in frustration. Thank you for replying. I sorta feel like I'm drowning. Lena

We saw an immunologist today in Boston, and he put my 11 year old on 1000 mg of pennicillin as prophylaxis (my son has been in great distress).

Help! Amy, where is the citation of ". . .measurable clinical improvement . . . steroid burst." from? We're on our way to Children's to meet with the Immunologist, so this is a bit of an SOS. Anyone know the citation? I don't know if he had a steroid burst after, but I will find out. Lena

You're right Vickie, and the juxtaposition makes me crazy. Inevitably the main page sports items such as these: MILLIONS FEARED DEAD IN MONSTER QUAKE / BEYONCE AT THE GRAMMYS!

I was told by our immunologist that there isn't evidence to suggest that antibiotics help, other than anecdotal. However there is not evidence that it does NOT help, either. He definitely suggests using antibiotics, and my impression is that at this point, at least offering the option is standard of care, yes?

PaulGrant@mail.nih.gov You know, I didn't even read the article because I figured it would be sensationalized, inaccurate, etc. I was just surprised that aol was giving Sammy his 15 minutes. But THIS is unacceptable. I'll send an email today. So that's at least, what, 4 of us? Thank you for posting his e address! Lena

Addi, just keep going - get a second opinion. We've had similar experiences. Is there another major hospital near you? Where else can you go? Have you tried emailing or calling NIMH for a referral? They actually responded quickly to our questions, but that was in 2003. I know how heart-breaking and scary it is to think of your sweet child on medications like Respiridone. It seems to help some kids, and not help others. My son's symptoms got worse with Clonidine. We finally tried the "new" recommended PANDAS medications (the older med-approach was just sedating, or using anti-anxiety drugs). Orap helps with the lability and tics and fears, but my son keeps having to use higher and higher doses. Remember that you don't have to commit to a drug; you can an always do a brief trial to see if it helps. A good question for a doc recommending a treatment is, "How many children with PANDAS have you treated with that medication, and what percentage of them did it help?" About school: My 4th grader missed 4 1/2 months of school. In our district, public schools must provide a tutor who comes to your home free of charge. Is there any policy like that where you live? It took a lot of phone calls, and even educating the school guidance counselor about the policy, but we got it. Very best wishes to you! Lena

I think you may be right, Erica. I wasn't sure which to check. I found a paragraph about PANDAS during an exhaustive web search (this was 2003), printed the page and took it to our ped. She made the appointment at Children's Hospital, where he was officially diagnosed. Anyway, I checked ped neurologist. Lena