dut

coco... thanks for that info :-)

Hello. Do you know if Dr B will do telephone consults if the ped. we have here is willing to do bloodwork ordering etc?

Hello Yeh, when our dd lost her 1st baby tooth 3-4 hours later she had a tummy ache and by the next morning we were seing low level symptoms. We did a course of abx and 3-4 days, maybe as long as a week later but super minor by then, symptoms went away. It may have been coincidence I dunno but when she lost her last tooth (only her 2nd) I gave her proph abx dose early just in case and we didn't have a problem that time. Hope this is just a blip for you....

Hello So sorry this happening. We are in the same place with our son... at least you have some of the knowledge this time and hopefully you can nip it in the bud. The food issues sound exactly like our PANDAS dd. She'll eat but has become amazingly picky. She used to be one of those kids that would eat anything. The only good thing we could find in possibly having 2 kids with this was our dd6 said it made her feel less alone thinking her brother might have it. She knows other kids get it but having another one in the family makes her feel much better.... small comfort though faced with the fear, I know. We'll be thinkin of you and your children...

Thanks for all the responses... I'll pass all the comments on. Googling, it certainly seems as though self harm can be part of OCD but also part of so many other disorders... thanks again.

Hello I'm asking this question for a friend - Have any parents had talk of killing oneself and self harm, such as cutting, in their kids as part of other PANDAS symptoms or even as stand alone symptoms? Thanks for any input.

me too

anything with a fever more than a few hours seems to trigger us.. BBB integrity affected I suspect. ??

dcmom and pmom thank you :-) That was the push I needed. I filled the prescription this morning and was probably going to give it anyway but this makes me much happier in doing it. She's not bad.. nothiing compared to full on episodes but her last major episode came on quietly like this and I'm worried that if I don't catch it early I won't catch it at all. She has had other minor flairs but this feels different in quality somehow.. feels as though it could go really sour. and peglem and buster - I'll keep her on full dose strength abx thru the burst. thank you for the replies folks, they really do make a difference not least to my emotional state! You feel having done this a few times it would get easier but it doesn't... thanks again..

any more thoughts? I'd be grateful for any advice.....

hello.. a new one for us tonight.. nailbiting. I knew it was the other side of the trichotillimania coin (along with skin picking) but "I do it 'cos I like to feel the nail bits stuck between my teeth" sure feels OCD to me. Both my kids have started nail biting in this last week - we've had flu in our house.....

Thanks for the response... Our dd has just gotten over flu and it seems we're heading in to another episode. Super mild symptoms for a few days- OCD/nailbiting/hyper but they have ramped up tonight. She finished a 5 day course of zith last weds and had her biweekly zith proph tonight. Our ped sent us home with a 5 day sterroid burst to use if she ramped up. Do you think we might actually be able to nip it in the bud with the steroids? I will happily keep her on zith for the burst... I've stockpiled a fair amount for times like these. I am concerned though 'cos she has just had a nasty bout of flu that has wiped her out. Could doing steroids now, allow any virus still hanging around to come back full force? Rock and a hard place is how it feels. I dunno, you just start to feel a bit smug and it comes back to bite you in the a***

Hello I know that steroid bursts are usually just used diagnostically to corroborate PANDAS diagnosis or prior to IVIG/PEX and symptoms will lowe ror halt for the time of the burst or a bit longer but are some people finding it can lower or stop symptoms for significantly longer than just the burst time alone? Has anyone had it stop an episode in its tracks and that particular episode not come back? If anyone has found it to do this, does it work more if you do the burst as close to the start of the episode as possible? Is it always wise to do treatment dose abx at the same time in case of strep hiding out? Thanks....

EAMom - yeh, you're absolutely right, it is more sensory than OCD but.... some of our dd's symptoms seem to morph between OCD and other "issues". I won't explain this well but here goes how it feels for us... eg the food thing started as fear of certain foods making her vomit, as our epsiodes often start with nausea or vomiting and then the food thing morphs in to the sensory defensiveness. Her clothing thing can feel OCD but also VERY sensory. For our dd it feels as though many, if not all of symptoms except the ticcy ones are all 'cos of a hyped response to thoughts/senses etc. She has always been a super aware outward looking child. Would she have been this way without PANDAS. I feel (but could obviously be so wrong) that she has always had high dopamine making her sometimes painfully aware of external stimuli - giving us an aware child on the good end with an ill child OCD/sensory defensiveness et al on the other end... not that I overthink this at all..... :-) and down blind alleys too :-)

Quote from Vickie- "You have to repeat back what the child says because they need to make sure you heard them" This seems to be a biggie for our 2 year old... only realised what it was when it came back after a steroid burst.

Yeh, we have the food one.. just went off her previous favorites. She can't tell me why exactly, just says they don't taste good anymore or, more usually, the texture seems funny to her now. Now I think of it, that is one "symptom" that hasn't left us even when all others have. Perhaps it becomes habit/learnt?

Also.. nosepicking (compulsively, especially at bedtime for us) apologising magical thinking.. if I think it, it will happen... calling brother a furball then worrying that he will become a furball during our 1st noticed episode every safety message we'd ever sent turned into a crippling fear eg never put plastic bags over your head became a terrifying fear of anything plastic touching her face, not wanting to go near plug sockets, worrying that bath water will be too hot.

dcmom - have you tried the jelly bear omega things.. you can get them at trader joe's and also the dr sears site sells them.. dunno how good they are but the trader joes ones go down a storm at our house. They think they're getting sweets :-) and I use them if I can't get to the supplement store to stock up on the fancy omega liquids...

Hello. We have a dd6 with PANDAS. Our now 29 month old son had some PANDAS red flags possibly as early as 9 months (with hindsight). We did the cunningham test for him and it came back at 151% and elevated anti lysoganglioside. We have just done a 5 day steroid burst with good, if minimal results. Best result was much improved sleep from 6-8 wakings a night down to none in 5 days and an improvement in frustration tolerance. We may have had better results with longer steroids, who knows, but I didn't want to go longer with flu strep rampant at this time opf year. (Lucky 'cos our dd has just gotten the flu). We followed up with 2 weeks full zith and now going to do 2 more weeks of full zith and follow that up with proph abx. Would your ped be willing to try a burst and some full strength abx for lonmger than the normal course? When the child is this young it's so hard to tell what is normal or not. I feel convinced that many of these kids are presenting with symptoms way earlier than originally thought. Scary stuff when they are this young but better to catch it now if it is PANDAS. Catching it early has to make it easier to manage longterm..... Good luck..

chap.. sorry saw "gp" and assumed uk - my bad

chap... if you need more drs names for PANDAS in the uk, you could ask Dr trifiletti here in the us. He mentioned a couple of drs names there who are savvy with PANDAS (cos we're from the uk originally). I can't remember who he said but am sure if you mail or ring him he could let you know. He was very helpful and open when I contacted him the other day.

I agree with EAmom about the BBB. Our dd's CaMK score was 165% when she was totally symptom free in between episodes.

Our dd has a lot of behaviour and mood changes with episodes. She becomes VERY combative/defiant and is impossible to discipline or reason with. The usual methods just seem to escalate her behaviour. When she is not in an episode all of her changes go away. She is 6 now and, I believe, has had this since as early as 2-3. So far she has come back to us 100% each time although it can take as long as 5 months or so each time to fully resolve. The anger/tantrums and bad attitude seem to be the last to go.

Hello. Our dd, now 6, had many intrusive thoughts such as - she would die if she didn't whisper in the hallway or daddy would never come home if she didn't do something right and (my most scary one) that families let their little children run away. Or dd gets back to 100% symptom free in between episodes with just antibiotics and time but it can take up to 5 months for all her symptoms to fully subside. Good luck....

Our ds only did the 5 day but we did TONS of hand sanitizer, especially when dd came out of school, on shopping carts etc. I also quizzed all our guests and didn't go within a mile of anyone I know had a live vaccine for flu. So far so good....