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Hi again - I'm now convinced the stammer/stutter is PAND(AS?) induced. My ds2 is showing more signs of defiance/lower tolerance and ramping stuttering. The stutter started again a few days ago and was shortly followed by the other behaviours and a cold. He has the same cold as I did (I got swabbed, all negative) so am assuming it's viral. I'm giving ibuprofen tonight and will try getting some curcumin into him tomorrow too (in addition to the norm. probiotics and omga 3) but don't see the point in upping his proph abx to full course amount.. am I wrong not to? Any opinions? Momto2 - how are things going with you and your two children?

Thanks.. but a part of me wishes I hadn't asked. My puny brain didn't really get that Should I make the mad leap, from the bit I did get, that monthly flouride treatments might not be a good idea for a kid with raised CaMK levels.. or is that connecting dots that aren't there? thanks....

hi - the link just took me to the pubmed general entry page but not a particular article....

inbox cleared... :-)

Hello. Just thought I would update on ds2 and his stuttering. He and his sis both did a course of zith (in addition to proph abx) on the back of dd's mild ramp in PANDAS symptoms. (BTW dd's symptoms fully gone again ). 3 days into the full course of abx, ds2 goes off the wall with uber toddler behaviours but constant and really up there! Even dd was like 'why's he acting so crazy?' For him this comes after a fair few weeks/months of worse sleep, more easily frustrated etc and the stuttering. He was off the wall for 5 days (herxing in some way?) and since has been the picture of lively but well behaved cutesy twoness. My sis saw 1 day of his off the wall behaviour and said somewhat tongue in cheek (I think) that he made my VERY lively brother when young look like Gandhi Anyway, the stuttering stopped dead during the abx course. I saw 1 tiny stutter today, the 1st in a month. Interestingly, I and my sis have had really bad colds this week. I'm convinced the abx got rid of his stutter.. we'll see how it goes....

Hi - I would suggest a thyroid test too. I was a BAD nail biter and trich/skin picking and nail biting are all basically the same problem from the OCD spectrum. My urge to bite stopped completely 5 days after starting thyroid meds for borderline low thyroid. Also m,ake sure that they go to a progressive endocrinologist who treats boderline levels/symptomatically. TSH and Free T3 and Free T4 needs to be checked. Could also suggest they look at n-actyl-l-cysteine. It has been used with trich with some realy good improvments - A simple supplement could help treat people with an impulse disorder that manifests in hair-tearing, say experts http://news.bbc.co.uk/2/hi/health/8132387.stm (Also, both my dd6 and ds2 started biting their nails suddenly the week they had a flu-like illness. My ds stopped a week later but my dd still continues. We had her thyroid tested last year and she was ok. Following the flu her thyroid was low but ds was ok. Often thyroid issues will follow a virus and then inappropriate immune response but can level out again later.)

Hi - yep, he does do phone consults, we've just done one this last week....

Hi - our dd6 got the droopy eyelids during some episodes, the major ones. To me she looked drugged. It would go once the worst of her episode was over....

Hi - we were dairy free for a few years, altho' about 3 years ago now, so I might be a bit outdated but.. watch out for the soy cheese.. most of those you see have casein in them which is usually the allergic part for a lot of folks.. go figure.. could never work out who actually ate those but we couldn't. Perhaps there's some out there that don't but we couldn't find them at the time. We did use Toffutti cream cheese which was about passable, if a little sweet. My dd loves the Toffutti cream cheese but I think it's gross. :-) The trader joe's soy yoghurts aren't bad and you can buy them singly to try them. They have strawberry and peach, I think.

lol.. yeh my stomach rolled when I read it but not being a sufferer wondered just wot lengths folks might be willing to go to. I heard years ago that seasoned travellers allow themselves to become worm infested to deal with delhi belly.. I might just stay home

Hi - for Chemar and others dealing with this, thought you'd probably seen stuff on the use of worms before but here's another article anyway.... http://news.bbc.co.uk/2/hi/health/3604189.stm

How about pen - penicillin pen VK - penicillin VK amox - amoxiccillin CaMK or CaM - CamKinase II ASO - antistreptolysin O RF - rheumatic fever

Our dd6 is in normal curriculum and doing well but was verbal very early with complete sentences before 18 months also. She has also always been very aware and outward looking for her age.

Hi - our dd6 65lbs did a 5 day burst at 60mg per day. She responded beautifully at that dose but it did seem high. We would absolutely do it again. We had minimal adverse effects - more irritable, increased appetite for a week or so but her symptoms fully resolved ( low level start of an episode but felt as though it was going sour, fast) for 5 weeks + and then we had super low level anxiety at bedtime for 3 more weeks and then that disappeared too.

Hi - we also saw a flair withe our dd's 1st lost baby tooth.. came out on it's own. We now dose with abx if she loses a tooth or visits the dentist..

Hi - My father had alzheimer's and reading recently that alzheimer's is, in part, a disease of weakened BBB integrity, feels as though it fits with having a PANDAS child. I wonder if Ibuprofen is better at closing the BBB. Our dd had CaMK of 165% high mid PANDAS range when totally symptom free. It feels as though for us BBB integrity is really important and that despite a high camk score she was symptom free 'cos her BBB was good at the time??? http://www.urmc.rochester.edu/news/story/index.cfm?id=313 interesting write up of BBB and alzheimer's, also this http://www.ahaf.org/alzheimers/protein-associated-with.html Protein Associated With Alzheimer’s Disease May Help To Defend Against Infection and this study that found faster Alzheimer's disease with infections http://www.sciencedaily.com/releases/2008/...80522155752.htm interesting stuff....

Hi - I can't offer any answers as we are in the same position but I thought I'd give you our history. Our dd6 has a PAND(AS?) dx. She had her 1st recognised episode 2 yrs ago. Our ds2 is a possible PANDAS. Our dd is symptomless out of episodes. In epsiodes she has tics, OCD, some chorieform movements, sensory issues, sleep problems, tantrums, regression in fine motor control, defiance and is combative and very emotional. She is a calssic sudden onset kid. During her 1st episode our son, then 7 months old, had an overnight onset of bad seperation anxiety. Prior to that he was sleeping like an average 7 month old with 1 or 2 wakes per night. His sleep deteriorated from then on. An ear infection at 18 months brought even more wakings and increasing "behaviours". Low frustration tolerance, wilful, very active. All the usual toddler stuff just to the extreme. With each illness, his behaviour worsens and slowly gets better again but long, long after the illness itself has resolved. His baseline is always extreme toddler behaviour tho' In addition I have seen some soft OCD signs with word and sentence repeating, needing to switch lights on and a few more. He also gets more sensory problems when not well but they are always there. We did the Cunningham test on both kids. Dd6 had a CaMK of 165% with normal anti neuronals when not in an epsiode and symptom free. Ds2 had a CaMK of 151% and raised anti-lysogangliosides. On the back of that we did a steroid burst (30mg per day for 5 days, he weighs 35lbs). We saw immediate improvement in sleep, from 8+ wakings a night to none in 5 days and some minor improvements in behaviour. The improvments decreased slowly once the steroid was stopped and all improvement was gone 4-5 weeks following the burst. He is on proph abx until we can figure out what is going on. Even with the Cunningham scores I'm not convinced he has PANDAS but I feel fairly sure because of the comparisons I can make between him and his sister. But more than anything his behaviour just doesn't feel right. I think if your gut is telling you something is wrong, then it is.. good luck.

Yeh, we had a similar situation. Our dd6, who wasn't in an episode at the time (3-4 months since any symptoms had been obvious), had a CaMK of 165% and all anti neuronals were within normal, although 1 was right on the upper limit of normal. I'm not clear on whether 1 of the anti neuronals tested is the 1 responsible for the increased CaMK activation. Anyone know? If it is, could it take longer for the activation to subside than it does for the antibodies to decrease?

hi - I like the book in that it too has helped me see just how Plan A I am, with the odd Plan C thrown in when exhausted :-) Plan B stuff has helped to ward off a few tantrums, mainly with my 2 yr old but also a few with my 6 yr old. I hate to think I'm tarring everything with the PANDAS brush but so many of the kids in the book scream PANDAS at me. It was so like my dd6 when in an episode. The rigidity they speak of with so many of these kids feels like OCD to me and the defiance, sensory issues and rages/tantrums followed by apologies. They want to be good but they're heads won't let them..... I think the messages in the book are meant for "stick" parents like me who should be using "carrot" much more

Chemar - we had a marvelous American chiro in the uk that worked miracles for me but I have yet to find one that I rate, since we have moved here. Would you mind explaining why you only use NUCCA ones.. do you feel they are better? Better for folks with tics or better for upper body issues in general? Thanks :-)

(Sorry, I'm doing it again, painting stuff with my PANDAS brush). Hi, I usually read the PANDAS board but lurk here too, and when I read that your son was having joint pain, I just wondered if you had considered an infectious etiology for your son's tics such as strep.... just a thought.. Good luck.

(got tears) so very, very glad for you that you are seeing improvements and a more hopeful future for your daughter. I've got the utmost respect for those parents whose kids are facing such difficult situations and yet keep going and do what needs to be done for their children.....

Melanie - seems you're not on your own with this.....

Hi - found this Situations where we don't stutter provide important clues about the underlying dysfunction. One such condition is the 'rhythm effect': persons who stutter usually become fluent when speaking to the pace of a metronome. They seem unable to stutter when following the beats. This distinction, to have a problem performing a motor sequence on your own, but being able to do it when receiving external 'timing cues', is characteristic of dysfunction of the basal ganglia motor circuits (including related structures, such as the supplementary motor area (SMA)). Normally, the basal ganglia seem to provide 'go-signals' for the segments in a motor sequence, eg. the syllables in speech. Without sufficiently strong go-signals the speech cannot be started or will be disrupted. The rhythm effect appears to be a key feature of stuttering, providing a strong indication that stuttering is related to some type of disturbance of the basal ganglia motor circuits. There are several other indications for the important role of the basal ganglia in stuttering, for example: 1. Lesions that cause 'acquired stuttering' often affect the basal ganglia (Ludlow et al., 1987). 2. The drugs that have shown the clearest effect on stuttering, to make it better or worse, affect the dopamine system. Dopamine is a key transmitter that regulates the function of the basal ganglia. 3. Basal ganglia motor disorders characteristically worsen during stress and 'nervous tension', and improve under relaxed conditions. on this site http://www.stammering.org/peralm.html

Hi - sorry to hear you are back in this position but at least you are on it and can deal with it. Good luck, hope she gets well and stays well...