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Oh -- and if you can;t get the nystatin in.. our phamrmacist recommends amphotericin B.. he can compound it with FOS to make it taste ok too. He says it stays in the gut, is tolerated well and has no resistancies unlike diflucan..

Hi - just an idea but.. our dd and ds just got their adrenals tested and both came back with quite a few issues. I was doing some research and issues with adrenals can cause night waking and sweating. I don't know if our issues (low cortisol and 17 oh progesterone for dd and lowish cortisol with mucked up rhythm and very high DHEA with low 17 oh progesterone for ds) predated PANDAS or if they are as a result.. I am wondering if basal ganglia problems can influence the hypothalamus and hence mess with the hypothalamus-pituitary-adrenal axis. Confusingly, some of the problems that are seen for our dd in exacerbation also fit with low cortisol levels.. here's a descriptive link http://www.ehow.co.uk/about_5183275_sympto...sol-level_.html "Individuals who have low cortisol can experience a number of symptoms that can vary from person to person. These can include diarrhea, shakiness, inability to handle stress, having angry outbursts, being emotionally hypersensitive, having difficulty overcoming minor illnesses, body aches, sensitive skin, scalp ache, feeling jittery, clumsiness, confusion, lightheadedness, dark circles beneath the eyes, frequent urination, trouble falling asleep or waking up in the middle of the night and flu-like symptoms." not saying it is this.. more likely a fever running up to an infection but thought I'd just throw it in the mix........

"playing with himself"!! That is all my son does! I know fiddling (as he calls it) is normal for kids but it is constant with my son.. perhaps we'll look into the spironolactone (sp). thanks.

pathfinder - We did our test thru Diagnos-techs.. and they supposedly have a good, knowledgable MD there who our ped is talking to, to try and better understand what is going on. I'm trying to work out wot came first.. gut assault of some sort leading to gut issues and consequent long term stress putting too much pressure on adrenals and autoimmune prediliction and thus PANDAS or was it crappy adrenals from birth (especially likely if you had a v stressful pregnancy - my hand shoots up in the air for that one.. guilty there) leading to depressed SIgA and gut issues and thus autoimmune lucky dip.. Sometimes, I wish we had just stuck to treating PANDAS and not bothered with finding out why (a little knowledge is a dangerous thing ) but I fear that even if we deal well with PANDAS we're just set up for more autoimmune issues in the future.. I'll PM you if I find out anything of interest from the MD at the lab or other good PANDAS/adrenal tidbits...

Hi - found a couple of links re the rem sleep/wakeful dream thing http://www.neurology.org/cgi/content/abstract/55/2/281 http://www.associatedcontent.com/article/4...nia.html?cat=70

Sorry, I meant to say that we tested adrenals 'cos we had such depressed SIgA, which can be as a result of adrenal issues - cortisol/DHEA ratio out of sync.

Hi - yeh, we got abnormals for both. DD all test points (4 in 24h) came back depressed for cortisol. She had normal DHEA, depressed 17 OH progesterone and extremely low SIgA, which we knew about. DS came back normal levels for cortisol but his pattern was messed up - low in am and high pm.. probably why we get such awful sleep. He also came back super, super high for DHEA... of the scale, if I read it right. ( A google search came up with - boys with very high levels of DHEA being much more prone to ADHD, ODD , hurting kitterns etc - joy ) Could explain the aggression we see sometimes.. he is also the most "boy" toddler I have ever met.. so boy from a very young age.. could it be the DHEA? Excesses in women cause virilism and hirsutism. He also had depressed 17 OH progesterone and super low SIgA. This aggression does correlate with PANDAS flares, so I'm wondering if adrenal tests would look different out of exacerbation. Both children were in exacerbation when we did the test. Both have had 1, 5 day, steroid burst 6 months or so prior. I'm wondering if this mucked things up but all the literature I could find say adrenals bounce back within a few days of bursts that short. I can't decide if all this testing is helpful... or just leaves me with more questions and less sure of our path? So, any ideas welcome

Hi - I'm wondering if the sleep clinic folk were maybe sort of right with the night terror thing.. bear with me. There is thinking that, the "hallucinations" experienced by schizophrenics are in actuality, wakeful dreaming. If I remember right, it is something along the lines of messed up dopamine interfering with sleep and dreaming cycles causing poeple to dream when awake. Auditory is more usual than visual but wonder if the sleep clinic people were eluding to that. Perhaps he is experiencing a waking night-terror 'cos of dopamine dysregulation due to PANDAS and is reacting with a stress induced tic or even OCD ritual. I'll try and look for some links for that wakeful dreaming stuff when I get a chance....

We've just got adrenal work-ups back for both our dd and ds and I was wondering if others had done this testing and what tresults you might be seeing? I also seem to remember someone saying somewhere that the disruptiom from PANDAS may not be limited to the basal ganglia but may also include the thalamus (thinking thalamus-pituitary-adreanl pathway). Thank you...

Hi - just thought I should add this after I started a topic suggesting DHEA use when on steroid bursts. Our ped said kids should be getting DHEA supplementation to balance out the steroid BUT our v. knowledgable pharmacist dude (and I do rate him) says that they shouldn't. He says, that kids produce very little DHEA until about 12 or 13 and using DHEA before then can cause them to permanently not produce enough in the future. He was also somewhat aghast with the use of steroid bursts. He could see the need for stopping the antibody production but wondered if you could get away with just lowering inflammation, then he has seen really good results with fairly low doses of hydrocortisone. I am going to try and get my ped and him to talk... he really seems to take time out to look at different issues and is particularly up on all things inflammation....

Sorry, can't find the reference I was reffring to but found this old thread with lots of good stuff.. http://www.latitudes.org/forums/index.php?...d&pid=55821

Hi - going to look for it now... it's something to do with closing BBB, it reduces presence of something that those crawling immune cells stick to when they crawl against the flow of the blood and then sneek across the BBB... hope I can find it

Hi - we don't seem to be on the map yet.. I could've done something dumb..

thanks.. :-)

Hi - just a quick question.. I know a puffy face can be expected when on a steroid but is a flushed red face just another side effect too? I got a couple of hits saying yes on google but nothing too trustworthy.... thanks

Momto2 - for your cousins, it may be worth exploring the autoimmune pancreatitis angle because unlike normal acute or chronic pancreatitis which (if my uinderstanding is correct) can't be treated with much, the autoimmune sort responds well to corticosteroids. Peglem set me off on this with anarticle about a.pancreatitis and elevated IgG4 wich our dd has. this article is quite good http://www.joplink.net/prev/200411/200411_news.pdf

Sorry, in a rush today but just wanted to throw the possibilty of autoimmune pancreatitis into the mix.. symptoms can easily be mistaken (IMO) for GERD. I've been wondering if we have been dealing with the pain of this in exacerbations and consequently dealing with the fallout of low digetsive enzymes at all other times.

I assume so, yes. The point of vaccinating is to confer immunity (unless you're big pharma and you may have some other priorities but hey, we all got to make a buck ) so if your child can show immunity with testing titers, you shouldn't have to vaccinate. Not sure how you would convey this to a school system though. Maybe a letter from a dr and supporting evidence?? dunno...

We are using Vital Nutrients DHEA, 60 10mg capsules for about $10...

Hi - we got 10mg capsules that we break open and my dd takes the powder off a spoon.. tastes ok, she says (but she said clindamycin wasn't too bad ). We take it at the same time as the pred... seems to be ok so far but, to be honest, I didn't ask the dr about separating them at all....her symptoms appear to be lessening. The "what's that brown thing on my hand/top/book" questions have stopped. She's interacting with her brother more and although she stilll woke the last couple of nights and came into bed with me, she says she feels less scared and lonely when she wakes. We are having another prompt response, like we did last time, so I can't think the DHEA or its timing is contradicting the pred. in any way... we'll see how it goes. PS Stephanie2, tpotter... I might try the extracurricular benefits too.. all in the name of science of course

Hi - we're day 3 of a steroid burst with our dd7. This time around our ped suggested we add in some DHEA. Cortisol and DHEA should be in a certain ratio and by taking a steroid you are upseting that ratio, hence the need to re-balance with DHEA. Our ped said it would ease the steroid symptoms such as moods/hunger etc. So far, it does seem to have eased the bad temperedness that we 'enjoyed' last time around. We have been recommended 10mg DHEA twice a day (our steroid is 30mg twice a day for 5 days). Just thought I'd throw it out there as I hadn't known of this prior to our ped suggesting it....

This and you guys that did this are totally brilliant!!

Sorry.. didn't read entire thread, in a rush, just wondered if you had checked tetanus titer.. may save you the hassle of revaccing for at least a bit, if covered.. thanks

Hi - according to this article the peak disruption is 24-48 hours.. so if what you are seeing is as a result of the anesthesia , then you should see a fairly quick resolution http://www.springerlink.com/content/r487w7k527454780/ sorry, it's only an abstract...

Hi - we were considering a general anesthesia for our ds (didn't do it) but I googled and found that there can be vascular changes with a GA that can disrupt BBB integrity. When our dd has a fever she gets night terrors, I beleive. 'cos of the effect on BBB due to the fever. If we give ibuprofen it does stop her having a night terror. So maybe you could try that...