dut

thanks again folks for the info.. I'll be buying melatonin tomorrow and also trying the epsom salt baths and the natural calm, which we have but haven't used consistently. Time to use the big guns...... thanks again.

Just been looking at the PANDAS foundation site.. how do you get the got trep cards? couldn't see it on the site. thanks...

bumping ....

I just read my own last post and thought omg I sound like a real *******.... I didn't mean to come across so facetiously.. sorry folks... I think sometimes my response to lack of sleep is a sort of manic gallows humour that doesn't always come across so good.....

jewels - I wish I could do the hubby bit.. my hubby is a kind of "go to work only" kind a guy... at least the suggestion got the only out loud guffaw I've done so far today :-)

HI - a lady from the TS/tics forum asked me to post this link as she was having trouble moving her original post over. Thanks.... http://www.latitudes.org/forums/index.php?showtopic=6896

Hi - I'll post it now for you. I don't want to be flogging any dead horses but just be aware that few drs seem to recognise or treat PANDAS, although the numbers are growing and some still adamantly believe it doesn't even exist. Good luck :-)

Peglem - it just feels like "what's another bucket of water to a man drwoning at sea"! The 8+ times a night waking has been our norm for the last 6 months or so (I got sacks under my eyes to rival Santa's) so feel, maybe stupidly, that giving gaba another go may be worth a chance... just in case it was coincidence. The bummer was that in the week and a half before we have the gaba a go he was down to 4ish wakes a night... just so desperate to try anything and many people rave about gaba and valerian.... any other ideas on sleep I'd happily try from folks.....

Hi Peglem - yeh, I used valerian for my ds2 for 11 days at the lower end with no effect and on day 12 I upped it to the higher end, he still woke up 8+ times and was just a horror the next day with lots of bad behaviour.. 2 year old stuff but LOTS of it. Not sure if it was the valerian but am thinking now that it was as he seems to react not so well to the GABA too. I am going to re-try the GABA just in case it was coincidence but I don't hold out much hope - ho hum.. decent sleep will just have to remain a distant memory for both him and me.....

Hi- for those of you using GABA- How effective has it been for sleep, especially staying asleep? For how many days/weeks was it taken before any effect was seen? And has anyone seen the opposite effect to that you expected eg a ramping up in hyper/anxious behaviour or a worsening of sleep? thanks :-)

Hi- I usually post on the PANDAS forum (have dd6 and possible ds2 with PANDAS) but was on here to post a question and saw your post. I just wanted to say that you said you saw no OCD in your son but in our experience, licking stuff has been OCD driven. My dd licked stuff when in an exacerbation. Kids with PANDAS also get a lot of Sensory Integration Disorder (SID) issues. Not saying your son has PANDAS but I would certainly take a serious look at it. If it were me, I would post your info over on the PANDAS forum if you haven't already and have a look at the FAQ and other useful threads "pinned" at the top of the forum. There is also a thread on OCD behaviours that you may not realise are OCD behaviours. OCD manifests in some unusual and unexpected ways... good luck :-)

Thanks for the responses.. interesting the BBB issue. I had read about that but hadn't done the math and thought of it as a test for BBB integrity! I asked 'cos my terrible sleeper ds2 has been using it on recommendation from the ped. He was only on it for 3 nights but his sleep got worse and so did his behaviour but it could have been coincidence. Interestingly, my dd6 asked if she could have it. She is usually a good sleeper but has said recently (super tail end of episode) she has been waking a couple of times a night. She says, that since she's been using it, she hasn't woken at night. Hmmmm, BBB integrity not so good? I'll also re-post on the TS/tics board too, thanks Faith. :-)

Hi- for those of you using GABA- How effective has it been for sleep, especially staying asleep? For how many days/weeks was it taken before any effect was seen? And has anyone seen the opposite effect to that you expected eg a ramping up in hyper/anxious behaviour or a wrosening of sleep? thanks :-)

Hi - Our dd6 sounds very similar in episodes to your son. She did it way more with me and her compulsions were very similar too.. lots of telling and asking permission or reassurance. During her 1st episode she wasn't in school yet but did go to art and gym classes. I asked her what she did during those, did she ask the teachers. She was shocked that I would think she would do it there.. she was super aware that it wasn't "normal" and was just horrified at the thought of asking someone outside of the family or even letting them see it. Like how some kids with TS can "save it up", it has to come out at some point like a bad itch or sneeze and when I would pick her up it would all come out, be it the ocd or behavioural stuff. She even didn't do the "worry trick" stuff (as she calls it) with my dh once episodes were ramping down, just during the bad parts but saved it for me. As for the changes, we absolutely saw that too both between different episodes and even, within episodes it would morph. As for telling people, certainly during an episode when we were all drained, I stopped bothering unless I thought I'd get at least a vaguely understanding attitude 'cos the "you're crazy/a bad parent/got munchausen's" just got to be too emotionally exhausting... now energy levels are a bit better I feel more inclined to go into battle to educate people :-)

Hi - I was about to ask the same thing as Meg's Mom re the article for OT... I'd love a copy too if that's possible or a point at the right publication. Thanks :-)

Hi - with regards to testing we have been advised by drs to do the following.. some of which we have done, some we're about to do the whole family- aso anti dnaseb streptozyme cultures nasal and throat PANDAS kids - mycoplasma pneumoniae IgG IgM thyroid including anti thyroid autoantibodies as there is a link with ocd and thyroid (but we have thyroid issues in family) lyme full immuniological work up (not sure what that includes yet as we have only done limited testing so far to include IgA, IgM, IgE, IgG and IgG subclasses) the cunningham test :-)

DCMom - fair enough.. you're right about keeping it above board and civil. I know that I and probably others get a little "triggered" by it all sometimes and re-live our past fights through our opinion-giving. I feel rightly admonished :-)

Hi - we have a dd6 with the PANDAS diagnosis. We believe she started around 3, maybe earlier. We also have a ds2 who we believe to be PANDAS as well. I had seen some signs and so did something called the cunningham test. it looks at cam kinase II and anit neuronal antibodies. It is still in study stage but the researchers are attempting to look for markers of PANDAS and in previous work they were finding camkinase levels were elevated in kids with PANDAS and Sydenham's Chorea. We did the test for both our kids and both came back in PANDAS range. We had seen some of the similar signs to you in our ds2.. some ocd type behaviour, aggression towards kid's his age, very wilful, hyper. Like you, I also could explain his behaviour as normal 2 year old stuff but my gut was telling me otherwise - it was just more extreme than other kids his age. Both my kids got ill with a flu like illness over thanskgiving. My dd's PANDAS flared and my son's behaviour tanked as did his sleep. My dd had steroids and that sat on her symptoms with exception of some super minor OCD that crept back in a few weeks later. That ocd stopped altogether over the last 2 weeks. At the same time as her final bits of ocd disappeared, my ds's behaviour improved a lot and shortly after that his sleep started to improve. I feel that he too was in an episode just milder and harder to pinpoint 'cos of his age. I would certainly stick with the abx and see what happens. I would also suggest doing the cunningham study. I believe a better explanation of it can be found in the pinned threads at the top of the forum page. Good luck. I think many kids start this early but most don't get recognised until later, at which point you may have to do more aggressive treatments to get them back to baseline....

SF Mom - could you tell me what you mean "strep B can become strep A"? thanks....

Hi - congratulations on the birth of your daughter :-) I'm no expert on anything and especially not Lyme but it's been getting some press on here lately and, if I remember right, it does cycle - so symptoms cycle with the life cycle of the spirochete, I believe. Not saying it's wot ur dealing with but thought it worth a mention. Lyme Mom on here seems very conversant with Lyme, perhaps you could PM her?

Everything possible was done to discredit him and his work. Felt like a witch hunt to me.. but I'm probably biased.

Yeh - sensory processing issues in general surface for us but especially tactile and noise. The vaccuum and toilets flushing were especially difficult for my dd when in episdodes. My ds has trouble with noise too, the car engine was too much for him the other day and yet he can be super noisy :-) so type rather than just volume seems to be an issue. It also depends on where they are in terms of overload... what may be ok one minute can be too muchthe next, if they have already been overstimulated in sensory terms. 2 good books that deal with this are "The Out of Sync Child" and "Raising a Sensory Smart Child". Although, I have found that for our dd6, it goes away almost completely when her PANDAS episode stops. She is left with some low level tactile issues eg clothing tags, sock seams etc. It seems to be also true for our ds2 that it goes when not in an episode, although we are still trying to work out what is what for him 'cos of his age. Sometimes it is difficult to differentiate sensory stuff from OCD and for us, I think, sensory stuff can warp into/kick off OCD issues. What starts as a sensory issue can become anxiety producing and can turn into an obsession and then a compulsion.

I can't comment, except on the "pandas kids don't have good times just bad or worse". In my opinion that is rubbish.... sorry. Our dd6 is definitely PAND, just possibly not the strep bit, maybe myco but ONLY gets worse with certain illnesses, that usually present with fever and gets better with abx or steroids or even just time. In 2 years we've had 2 bad epsiodes each lasting about 2-3 months and 2 minor epsiodes lasting 2-3 weeks or so. The rest of the time she is COMPLETELY symptom free. I too would go for a second opinion.. how bout DR T or Dr K? good luck...

yeh, you can use the s.boulardii at the same time 'cos it's a yeast and so the abx doesn't kill it. I would also give the pharmax probiotics a go... u can get them online. They are made in the UK and may be easier 'cos human strain. As for genetic link, yeh I believe so. So many families have multiple siblings with this.. it could be super virulent strains too but I believe there are probably issues with strep clearance that run in families, as there seem to be family histories of RF etc... but who knows. e.g. our family has RF, Kawasaki's, scarlet fever and peritonsillar abscesses and now PANDAS and I think maybe PANDAS on at least 1 side of the family a generation back but milder.....