dut

Thanks for the responses I, too, think BBB integrity is the key. Our dd6 had a CaMK score of 165% with no symptoms at all at the time (when in epsiode she has ocd,low level tics, choreiform movements and lots of behavioural stuff). Our ds2.. not sure whether we see symptoms or not - certainly some sensory processing stuff and sleep issues maybe more - came back at 151%. thanks again

Hello I just wanted to know how many, if any, kids were coming back with PANDAS range scores but no symptoms either ever, say if a sibling of a PANDAS child is getting checked maybe or a high score for a PANDAS dxd child while not in exacerbation? (Still trying to work out what is going on with our ds2.....) thanks....

Hi- would this be counted as a donation to a charity so that anything that would be forthcoming from parents could be donor matched by employees and tax deductible? Thanks...

Dr T - under infectious markers, what does SZ stand for? thanks..

Hi- can't offer advice on treatment offered by Dr. Leckman or why Dr k would refer you to him but I did speak with him a couple of years back and he was very knowledgeable and SUPER nice. He was willing to talk to me for over an hour and responded to subsequent e-mails re our dd at no charge and felt as tho' he really understood and cared. Is it your dd's age that would cause Dr k to refer out to Dr leckman?

thanks, lyme mom :-)

Sorry, I also meant to add that Dr. Trifiletti here in the US, mentioned that he was aware of some Drs in the UK. He didn't give me names but you could always contact him if you need to, he posts to this board.

Cheers for the dr info. On the probiotic front, have you tried saccharomyces boulardii? Did you get the same bad reaction? If you haven't tried it, it is a good yeast that competes with bad yeast and is supposed to be very good at keeping candida at bay. Just wondered if maybe your dd would react less to that than bacteria type probiotics. Also, most probiotics are animal strains. Pharmax do human strain ones Pharmax HLC acidophilus and bifidus.. she may react less badly to those. Also are you using dairy free/gluten free probiotics? (you probably are but thought it worth a mention in case).

Lyme mom - not sure if this has been asked before but how do kids with lyme or co-infections respond to steroid use? thanks...

Hello Glad to hear your getting good results at last. No, to both your questions re blood group and chicken pox but have you had an immunological work up done on your dd. Many kids come back with low numbers. That could account for all the infections. The probiotic and nystatin sound like a die off reaction, can't think what else that might be. Other folks may have better ideas on that one. We are in the US but from the UK. Do you mind me asking what dr you have found that is willing to believe and treat PANDAS? I am conccerned that should we return to Uk we won't be able to find the help that we get here.... Thanks, Dut.

Hi - yes it was the ped we see for PANDAS (not our usual ped but in the same practice) Dr. Cynthia Keller of Redmond Pediatrics, WA. Our dd did really well on the 60mg. Just 5 days. We saw improvement day 1 but all symptoms resolved by day 6. This lasted for 4-5 weeks and then a super low amount of ocd/anxiety crept in at bedtime just as she was about to fall asleep but this week it has gone again (3-4 weeks later). I feel she is out of this epsiode. I would do that dose again in a heartbeat if I saw symptoms return. She was slightly crotchety and cross during the 5 days and got super hungry the week after the burst but other than we had no side effects....

Our dd6 did a 5 day burst at the begining of an episode. Although we did see improvement by the end of day 1, further improvments came at the end of the burst. Some people don't see improvements until a couple of weeks later...sometimes you get a clearer picture looking back over an extended period of time. I've also read that those with a TS dx or probable need to be very careful with steroids. Don't know much about that aspect myself but others will probably give more info... Hope you work it all out.. good luck...

hi - what dose is your dd on and how much does she weigh? Dr T suggested we use the medrol pack next time round, don't know if that would make a difference. He also mentioned IV steroids to us.. said that they can be more effective.. but the conversation went no further than that so don't know any more than that about them.. just thought I'd mention it...

My 65lb dd just did 60mg per day (30mg am, 30mg pm) 5 day burst. Worked like a dream for us :-)

Here's a good link on EBV http://emedicine.medscape.com/article/963894-overview and in particular Treatment with amoxicillin or ampicillin is associated with rash in approximately 80% of patients. This is often encountered when primary Epstein-Barr virus (EBV) infection is initially misdiagnosed as strep throat and is treated as such. but our allergist said that it can be other infections than ebv. he reckons the immune system gets mixed up (dunno how exactly) when you have some infections present and then introduce abx and consequently you get a rash..

If you go to the NJCTS site they have a suggestions box for future discussions. I have asked that a dr with the opposing view to Dr kurlan be invited to speak so that both sides of the argument can be aired. Maybe if enough folks ask we can get one of the "PANDAS stars" to speak.. even it out a bit..

sorry, meant to post a link.. not great but covers the basics.. http://www.med.umich.edu/1libr/pa/pa_ampirash_hhg.htm

It's possible people may be experiencing an abx rash. Our dd had one of these when on amox.. looked like an allergy, even itched a lot but when we had her tested.. skin prick, subcutaneous and oral challenge she was ok and has since taken it and been ok. I was told that it can show a co-infection is present, usually Epstein Barr (mono).

The CF test they offer when you are pregnant only covers some percentage of the genes that cause CF. So even if you get a negative screen during pregnancy you can still carry the other, less common CF genes. I only learnt this recently when our ds2 sneezed (yes, I said sneezed ) a polyp out of his nose. When little kids get polyps it can be a sign of CF, so he did the CF sweat test. He was clear but it was news to me that the pregancy screening didn't cover all CF genes....

Altho I checked ocd for family history, the only ocd was my sister -in-law at a very young age... onset about 4/5 and lasted until teens.. It only came to light after my dd got her dx. My s-in-law sounds very pandas to me.... I bit my nails until I started thyroid supplementation a few years ago and we have a few worriers in the family but nothing vaguely close to clinical....

Excellent article .. thanks. Wow, the possibilities! Oh, the guilt

Lyme mom - do you know if kids with lyme have exacerbations in response to illness. For example, can a child go for over half a year and be symptom free and then have a flare of symptoms following an illness such as an upset tummy or the flu? or does lyme cycle more quickly than that and flare without obvious triggers? thanks

Hi - Since my dd's second episode she has been a picky eater but before then was ok. During both episodes however, her hunger did increase. I couldn't decide if it was true hunger or a kind of comfort/distraction thing 'cos she was having so many intrusive thoughts or if it was indeed a compulsion. It went away when the episode ended and was replaced by picky eating..

SFMom - sorry but would you remind me what symptoms you are seeing in your 21/2 year old please. Your dd's cam score is similar to my 2 nearly 1/2 year old ds's score of 151%.. thanks..

Hello I would give Pharmax HLC a try. I think (?) they are the only human strain ones out there. We use their one called... HLC high potency powder - one third teaspoon has 8 billion viable cells. It also has the FOS in it and peachy taste. We open one of the florastor capsules (saccharomyces boulardii - good yeast competes with bad yeast) and put it on a spoon and cover with about one half to one teaspoon of the pharmax stuff and both my picky eater kids will eat it right off the spoon cos the sweet stuff makes the gross cheese stuff, the florastor, falvour not so noticeable. You can order both online I believe. So far (fingers crossed) we haven't had any issues...