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Peglem - only if they do them well

A really good way to get kids (or me) to eat curly kale is to devein it, wash it, dress lightly with olive oil and sea salt and bake in a med oven for about 15 mins. I hate green stuff, makes me want to vom.. gotta really struggle to get green stuff down but this is great.

A good book for this is "healing the new childhood epidemics" by Kenneth Bock. I'm halfway thru at the moment and really liking what I've read so far...

reactive - yeh, I believe that my dd is in a different place to many on here but not all. When our dd is bad, she is bad. 1st episode was sudden onset moderate/severe OCD/tics/chorieform movements and a host of behavioural stuff but she really does remit fully in between epsiodes. I'm not saying I wouldn't do IVIG if needed, I'm just not sure all kids need it or if we will need it. For me, it wouldn't be severity that would make my mind up, unless it was so low level. Our dd knows when she is getting it and is super aware and even at low levels it totally interferes with her relationships and with learning and she is just miserable ( in addition to 2 major we have had a couple of low flares that no one else would notice but she does and we do.) For me it would be if she can remit in between. For our dd, it would seem that abx and time will do the trick. So if we can keep her trigger free with abx and then if she does have breakthroughs, treat with steroids, then for us we don't need to move on o stronger immuno suppressives. And yes, that might change but if we need to do IVIG I want to keep that option for when we really need it 'cos insurance will only probably pay for so many (for us) and we could only afford so many treatments if we had to pay. Also, she is so young and there's many a slip twixt cup and mouth. Our dd is 6 and our possible PANDAS son only 2. We could do IVIG on both and find ourselves hit by strep a couple of times per year for the next decade and need to repeat and repeat.. maybe my understanding of IVIG is faulty and the risk associated with strep exposure falls after a while , dunno... anyway i'm ranting again ..sorry

I'm still vacillating wildly, even as I type, between whether I want to respond to this or not but here goes.... I don't agree that IVIG is the only cure. I don't believe there is a cure per se. I think that most kids outgrow this as (?) they reach puberty/the BBB matures/they get exposed less/the thymus atrophies who knows. (For some it remains throughout life. We have some adult posters on here who still get flares.) Thing is we've got to get them to that point with as little damage as possible in terms of lost time, lost childhood, lost education and hangover behaviours. Dr T explained it to me as some kids are further down the "poked immune system road" than others. Some really can do ok on abx, some need low level immune suppression such as steroids and some need the big guns IVIG/plasmapherisis/PEX. Even after successful IVIG, these kids still need to be kept free of strep by abx and yes many will need IVIG, especially those who have had it longer, I believe. We, I guess, were lucky. Although, in hindsight, our dd6 had shown signs since about 3, she had an obvious, fairly classic, onset at 4.5 and was treated quickly/effectively with abx. She has since had 1 major epsiode that didn't respond to abx but resolved in 2-3 months and her last flare was sat on completely by abx and steroids. She is symptom free, to my mind, in between epsiodes. In the 2 years since we have been aware of this, she has been ill for about 6 months. I feel had we known of the treatment effect of steroids earlier, those 6 months would be down to maybe 1 month ( but who knows as each time can be so different). I would absolutely do IVIG, if our dd didn't remit between episodes or if we couldn't shorten episodes with abx or steroids. For us they work and my hope is that as this disorder becomes better known, then those children and families facing it will get earlier recognition and treatment. And this, hopefully, will mean that the treatments can be less invasive. I'm just not sure we can or should be saying to pparents new to this that there is a cure. Yes, absolutely,we should expect 100% symptom free but with the rider it can return. Maybe there are things that can be done to turn around the autoimmunity but I'm not sure we're fully there yet in terms of treatment for that. And I'm not sure we can say IVIG is the only way. Especially to parents of kids who are having their 1st episodes. They could possibly be managed with aggressive abx or steroids. I know how panicked I was when we first realised what we were dealing with. If I had been told IVIG was the only way, I would have done it. I wouldn't now, as currently, I don't believe we need it and am glad we didn't go that route. Equally, I realise we may need to in the future, just not now and hopefully, never. I do agree that parents need to get to a good PANDAS dr straight away, though, and not mess with local drs unless you have an exceptional one, who knows their PANDAS stuff. God.. what a rant... sorry... must have triggered me in some way, my bad

Hi - both my kids were delivered at 36.5 and 37 weeks by c-section due to very low amniotic fluid. I thought this following article looked interesting. http://www.ncbi.nlm.nih.gov/pubmed/19844811 Does the Immune System Induce Labor? Lessons from Preterm Deliveries in Women with Autoimmune Diseases. A recent review of the literature suggested that thyroid autoimmunity is statistically associated with preterm delivery. This observation raises a number of follow-up questions, among them whether autoimmune function, in general, predisposes to premature delivery. A review of the English literature for the last 10 years, via PubMed search, finds strong supportive evidence for such a hypothesis. Since the fetal-placental unit represents a (semi) allograft within a maternal (allograft) recipient, it is reasonable to assume that it is subject to similar immunologic tolerance (and failure thereof) as solid organ transplants. As autoimmune responses represent a normal feature of tolerance failure in organ transplantation, similar autoimmune responses can also be expected with failure of tolerance of the fetal-maternal graft. The association of premature (and possibly also term) labor with autoimmune function may, therefore, be the consequence of abnormalities in normal fetal-placental tolerance, leading to uterine activation and labor.

hi - nail biting/trichatillomania/skin picking are all different representations of the same thing and are part of the OCD spectrum. My dd6, who has a pandas dx, recently had a PANDAS episode start following a flu-like illness. In addition she also started biting her nails at the same time (as did her brother, ds2, who has a possible pandas dx). Our ds stopped biting his nails a week or so later. Our dd's symptoms all ramped, so we did a steroid burst which totally sat on her symptoms but NOT the nail biting, which she is still doing. Last year we had her thyroid checked and it was ok. I've just had her thyroid checked again and she is low for T3. I mention this 'cos I was an avid nail biter until I was dxd with borderline low thyroid. Within 5 days of starting thyroid meds, my urge to bite went away completely. I believe that an episode can start nail biting, cos it did with both my kids but that maybe thyroid may have something to do with it too. Can't remember where but I have read that PANDAS kids are more likely to have thyroid issues.....

Hi - my mom her mom, her mom's sister and my brother all had peritonsillar abscesses. My mom had them on both sides and was in agony. Her mom's sister died fromt hem I believe (have to check that) 'cos they burst and the pus entered her stomach and the ensuing infection killed her.. ahh the good old days

Hi - I have a family member like b this (can't name names) and I've come to think it may be an issue, in part, due to sensory processing disorder. You can be over sensitivce to stuff but also under sensitive to stuff. My family member just doesn't 'see' stuff. You can have a xmas tree on top of the car and this person literally won't notice it or will step over objects on the floor but not recall they were there (and big objects like gnomes in the hallway, this is obviously not a hypethetical example!) I could be wrong but it feels as though it does play into that undersensitive way these kids can be with sensory stuff.....

dcmom - you should go back and ask that dr what he/she meant with regards to "positive reinforcement" in a PANDAS setting - perhaps getting your children to lick kids with confirmed strep? unfortunately, we've had a few of those types of comment, some make me want to chuckle in hindsight, some make me want to slap a few people

Hi - I've posted this one to death in the past but here goes again 'cos although anecdotal, I reckon it points at the real scale of the PAND (AS?) problem.... My mother-in-law was a teacher and then principal at a small elementary school in the UK for 20 years. Each year's intake was 28ish kids, 4-5 years old. Every year 2 kids out of the new intake kids (regular as clockwork) would get sudden onset of OCD type contamination fears, sometimes also showing ADHD symptoms. She said they would sometimes try and guess which students it would be (as they were often the sensitive ones). All would usually resolve in about 6 months, sometimes the ADHD symptoms remianed, usually for the boys. That's a rate of 1 in 14.. 7% or so, if my math hasn't failed me... now that is high...

Hi - our dd6 has a PANDAS dx. Our ds2 may also be PANDAS, we have seen some signs (and got a camk score of 151% and elevated anti lyso). We did a steroid burst on him as diagnostic - we saw minor improvement in behaviour, huge imrovement in sleep and also he went from using very short 2-3 word sentences and single words to really communicating :-). Maybe it was just his time for his language to leap forward, as they do, but the timing was certainly suspicious.

wow!! colleen my mom's o'connells were form mayo.. seemingly a small world!

my kids are 1/4 polish, 1/4 iriah and 1/2 english maybe a bit of scots but def northern england momwithocdson.. my mom's side of the family were o'connells! the irish ones tho'

Hi - I've realised that I get so cross (as well as the usual frustration) 'cos I'm scared. My response to fear is anger and I've realised that the very outward signs of the illness make me super cross cos I'm scared and I take it out on my dd if I'm not careful and often regret things I've said or done. If I can deal with my fear better, I don't get so angry and I can deal with her better.

Cool.. Kathy Alvarez is a star, the whole team is awesome in our experience. I suspect that Dr Cunningham's inbox just gets super full. Our son was too young to be included in the study parameters but Dr C was kind enough to work with us to get him included...

Thanks.. and I believe folks on here will understand "witch" type comments. when our dd had her 1st and possibly worst episode, I was jealous of people whose kids had things like cancer. And just very ungenerous in my thoughts in general. I felt so alone/scared and p***ed off that this disease was unrecognised and unsupported. And like I said, we have it lucky but we've had a few of the usual drs do the "you're crazy and so is your kid" thing and even comments like "give her a good slap" from people, that I got to wishing we had a more obvious/physical/deserving of empathy and support kind of illness. I don't feel that way now, thankfully as the PTSD has worn off (and I'm not kidding, I feel as a family we suffered with this after the shock and I think many families do). Trouble with PANDAS and disorders of this ilk, is that it is more difficult for others to get what you are going through and not quite so hard for other types of ilnesses. I feel parents of these kids get angry easily 'cos we feel we have to go out to bat so much harder. Not just against the medical establishment and individual drs but even against friends and, god forbid, your own family. So after my rant :-) witch comments need no apology in my book 'cos I completely understand...

Yeh - we've been lucky with a ped who was aware of PANDAS, a 2nd ped who is a staunch believer and access to PANDAS experts and prophylactic abx. For that reason alone, I don't think I'd move back to the UK unless we had to (and it may not come to that).

Jewels - thanks for the response. The abx is what has me scared should we need to return. I've even considerd setting up relationships now just in case we do need to return to the UK. (Not that I'm suggesting anyone do this... :-)....) would you consider procuring your own abx and self medicating if you didn't have the abx for the other condition?

Jewels - could you just clarify the position in the UK re medications for me? In your post you mentioned abx and TS drugs. Did you mean that your child is required to take TS drugs and that if you didn't have the kidney issue you wouldn't be getting abx? Is this the case even though your drs recognise that they are dealiong with PANDAS and not classic TS? Is this your dr specifically, or the response you would even get form other drs 'cos of governing body rules? Sorry to pry but my heart skipped a beat when I saw your post... We might find ourselves in the poisition where we have a forced return to the uk and health care for my 2 kids is obviously a priority. Especially the abx longterm, we are getting great care here at the moment and the thought of not being able to get abx and steroids is scary..... thanks :-)

Hi - you could try Kathy Alvarez, she works with Dr Cunningham and we have done all our corresponding with her with regards the test. Here's her e-mail kathy-alvarez@ouhsc.edu :-)

Yeh- I'm not sure I buy the phenotype bit... maybe.. but to me it feels more like "which came first the phenotype or the PANDAS". For our family this started way young for both children. I now believe that an overnight onset of seperation anxiety for our ds2 when he was 7 months old exactly coincided with our dd6's 1st recognised episode. At the time I put it down to age and maybe stress in the household and maybe that's true but he repeated the same pattern with an ear infection a year later and although all kids get clingy when ill, his outlasted the illness by 6 + weeks or so. All subsequent illnesses have shown additional symptoms for him, again seeming to outlast physical recovery by 6ish weeks. There seems to be a bit of a discussion ongoing re chronic or sudden onset - perhaps all onsets are sudden but not major. Or they get put down to other factors and so it takes an all **** hitting the fan for it to be recognised. Unless your primed and looking for it. dcmom - clothing is one of a few barometers in our house. I type this as my dd6 is stripping off (despite it not being too warm) as she comes in from outside. When she is totally symptom free she keeps her shoes and clothes on indoors at all times but at other times, like now during a fairly bad head cold and cough, she strips down to knickers only... at least she still wears those :-)

In our experience with our dd6 it is the PANDAS that causes her sensory processing issues. She had no issues prior to PANDAS and has awful touch and some noise issues in episodes that go when out of episode for long enough, although they do tend to hang on for longer than her other symptoms. The only issue that never seems to go fully is comfortableness of clothing. However, even her lingering clothes issues disappeared completely with a steroid burst. We have a ds2 who is a possible PANDAS (camk 151%). We knew nothing of PANDAS until our dd was 4, nearly 5. Being aware of it way earlier with our ds and seeing his development and possible PANDAS symptoms develop, I feel certain that PANDAS can develop so early in these kids and not always in that "OMG onset" way, that it gets explained away as normal for age. Early PANDAS symptoms get accepted as either the child's personality or pre-existing conditions. I'm not saying this is always the case but suspect it happens a lot....

Hi- thanks for all the responses folks... We have seen ramping and it hasn't helped sleep at all.. in fact appeared to make it worse. We also tried valerian prior to this for nearly 2 weeks with no effects and when I tried to up the valerian we also seemed to see a ramp in behaviours. I have revisited the GABA over the last few days (in desperation) with the same effect and last night tried an epsom salt bath too, thinking maybe in conjunction it may help but, unfortunately, not. My ds2 usually wakes 8 ish times a night between my bedtime (11pm ish ) and 6.30 am. Last night using GABA and epsom salts he woke about 12 times!! Oh well, back to square 1. If anyone has any ideas I would be grateful. He is 2 and a possible PANDAS kid (sister is dx PANDAS and he had a cunningham of 151% and some possible clinical sign but difficult to know at 2 years old). Thanks again

We've been doing the omegabrite for a month or so.. both my dd6 and ds2 will have the tutti frutti flavour oil. I'm taking the gell caps as is my dh. So far nothing to report but it's ease of use for the kid. We'll keep on taking on the back of what momto2 has said...