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Everything posted by dut

  1. hello pr40 - glad you didn't hate me for the question. Nothing worse than strangers trying to tell us what's going on with our own kids We've had a h**l of a time trying to track down triggers for our 2. Abx would sometimes work, sometimes not. Ds is the one with lots of impulsivity, not being able to control himself, rages. For him we use acyclovir and although it doesn't get him 100% of the time it has been far better than abx for him. Have you ever tried any antivirals? did they do anything? good luck, hope he and you get some relief.
  2. pr40 - hello, I was just wondering why you consider the irritability and lack of control to not be part of the PANS? I know all our kids are different but for my ds and dd irritability has always been part of their PANDAS/PANS picture and for ds lack of control and impulsivity is one of his most troubling/difficult to handle symptoms. Don't mean to second guess you but just wondering if it could all be PANS...
  3. Have you tried antivirals? When our ds flares we normally try azithromycin and if that doesn't work, we go to acyclovir. Gave up years ago trying to work out the triggers for my 2 kids. Now we just go with what works and for some reason for ds (not so much dd) acyclovir will often bring him out of a flare. Our pediatrician feels it's safe and he certainly takes it with no noiticeable side effects. We get the liquid and he even says it tastes nice.
  4. Oh and I also forgot, that our PANDAS savvy pediatrician also swabs gum/teeth line when they can't get over a flare, as she's found strep on the gumline when my kids have swabbed negative in the throat. She treats that with chlorhexadine (sp) the mouth wash for a couple of weeks not antibiotics and again for my son that has gotten him out of at least one flare.
  5. Just a quick thought. Both of my kids have PANDAS and can ramp up in response to any immune triggers - bacteria, viruses and even a food allergy for my dd to nuts triggered her once. That was one of her worst and long lasting Anyway.. with all the mention of antibiotics just wondered if any of you had tried acyclovir. With my kids it's all hit and miss but it has worked for a couple of flares for my son, when antibiotics didn't touch the sides.
  6. I was just wondering what folks' experience is with clonidine. DD12 has had severe insomnia for 8+ weeks. We 'think' that she's PANDAS free. Certainly no PANDAS symptoms other than this and even her previous sleep PANDAS issues were very different. Seemingly PANDAS free for 18 months or so. Sleep dr. Has suggested clonidine 0.1mg at bedtime to get her to sleep and help her reset. She also has POTS which causes postural hypotension and I'm seeing hypotension as a side effect of the clonidine. Just interested in anyone's experience good, bad and ugly. Thanks
  7. Hello. I know that it's probably something of an oxymoron but do any of you have any suggestions for PANDAS friendly neurologists in the Seattle area? Thanks, Danuta
  8. http://www.nytimes.com/2016/02/16/health/lyme-disease-cause-bacteria-borrelia-mayonii.html?smid=fb-nytimes&smtyp=cur&_r=0
  9. Our dd had perianal strep during her first flare. She had throat 1st, had 14 days Amoxicillin and a few days later she developed very angry (scald-like), well demarcated red rash around anus that was very uncomfortable. We switched to azithromycin and it cleared. Both the throat and perianal strep caused flaring. Our ped now swabs throats and butts if there is any butt discomfort at all. Based on our experience, I would say that 2 weeks of antibiotics doesn't always clear infection and would hesitate moving to IVIG without, first, making sure that all infection is gone.
  10. Hello I was just wondering if rather than the fish oil/hemp oil if it could be the Vitamin D component. Fish oil is fairly high in Vitamin D, I am seeing about 2000 IU per tablespoon and that hemp oil is only plant with Vitamin D not sure if that's true mind you... Only thought it worth a mention as my ds can't seem to handle Vitamin D supplementation at all. Our ped did explain why this could be to me, something along lines of it being a brain steroid etc with lots of receptors in brain
  11. Thanks for all the information and ideas. The last couple of days have seen an improvement in sleep. # out of last 4 nights she fell asleep within 1/2 hour of going to bed. Best by a loooong way in 4 weeks. She also has had 2 of those nights with 7-8 hours of sleep. So it would appear that the hydrocortisone in day and cortisol manager med at night are helping her turn the corner. She still is very faint/light headed with fairly bad continual stomach cramp like pain. I am hoping that with some rest and adrenal support she may overcome the POTS sooner rather than later. We do seem to be a POTS family. I suspect I had it around age 12 for a couple of years but not badly was just a 'fainter' also after dd's 1st flare, after she recovered I hit the wall and now realised it was probably POTS due to adrenal wipeout. I had the fainting upon rising, palpitations, short of breath, fatigue. It lasted about 3 weeks for me, so I'm keeping fingers crossed for dd. Neither of my PANDAS kids have ever looked overly Lyme-like and have always been a bit nervous of opening that can of worms and am still b ut will keep it on back burner. Our ped is Lyme savvy so I will raise it with her. Was insomnia ever a big part of your kids' symptoms wrt POTS? I'm still trying to work out if the adrenal fatigue issue caused the sleep problem or was as a result of it.... Thanks for any more info
  12. Hello DD12 hasn't had any PANDAS symptoms for over a year but has developed insomnia with some nasty but short lived episodes, Three weeks ago insomnia went down hill and hasn't got better. Last week she was feeling light headed at all times, shaky, some nausea and fainting or near fainting on rising in the morning. Ped. Did the lying down, sitting, standing test. Her pulse went up by 42 beats form lying down to standing and BP went from 100/60 to 85/60. Ped. Says she's got POTS probably from adrenal fatigue and has her on hydrocortisol 10mg in am 2.5mg in afternoon ( we dropped form 5mg as it made her super shaky). Day 6 today and no improvemtn in sleep or light headedness. Do anyone kids have POTS in addition to PANS (there's a crappy joke in there somewhere) and has insomnia been part of the POTS specifically? I'm seeing insomnia come up as a symptom of POTS on various sites but no explanation as to why it would be a symptom. And can't decide if she had preexisting low level POTS (she also gets tummy issues, headaches etch) that led to insomnia or if insomnia brought the POTS on.... Thanks
  13. Thanks for info sf_mom. I'll give it a try. We just got back from doctors and as dd was experiencing fainting upon rising they tested her for POTS and she came back with an increase of puilse of 42 (>30) supposedly is diagnostic of POTS and had a blood drop from 100/60 to 86/60 after 10 mins. So... we've been given an adrenal calmer fortnight use (ashwaganda, l thiamine, magnolia and phsphatydylserine (SP) and then hydrocortisone for use in am and afternoon to help give her adrenalsa break. I am not seeing a huge lot mentioned on google re insomnia and POTS alto' most sites do mention sleep disturbance. So we'll see. Headaches and stomach aches do get a mention re POTS and she does get these. Ped wasn't up for looking at girlie hormones and thyroid yet, as she says they will be out of whack if adrenal are as they are foundational for the others.. let's sort this and then go after those if still issues. So fingers crossed this helps her get some sleep. As always if anyone has ideas..
  14. sf_mom - yep she has. I had been thinking of progesterone. There did seem to be a loose correlation with insomnia jags just before her periods. I had mentioned it to her ped. But she felt that her levels would be so out of whack as she's 12 that testing would be of little point but there's normal out of whack levels and crazy whack levels. We're back to the ped. Today and will raise it again, and ask for some testing or maybe some trialing of hormones.... I had assumed it would be progesterone but will go and look at pregnelone now, so thanks for the info. Perhaps the hormones helped with the pandas but created a different beast. Thanks again for the input. Right off to google pregnenolone and I'll look at that link too
  15. Hello. I was wondering if anyone had tried Rozerem (Ramelteon) for sleep and, if so, how helpful was it for insomnia? Thanks
  16. Okay, so that was short lived. Dd's sleep tanked again last night. She managed to finally fall asleep at 12.15 until 1.45 am and then from about 4am until 6am. Then fainted when she got out of bed. Still feeling faint and dizzy, especially upon rising from a sitting position. Joy I will ask in a post all of it's own but has anyone tried rozerem ( generic ramelteon) for sleep? It's a melatonin agonist that acts on MT1 and MT2 receptors.
  17. Thanks for all the ideas folks and the cyber hug MomwithOCDSon I needed it. Things are looking slightly less desperate and I'm not sure if it's coincidence or whether this is just her PANDAS as it now stands because her sleep has improved since we added in azithromycin! Honestly, I could spot a PANDAS flare in dd at 50 paces and this is nothing like that AT ALL. Not even the sleep thing is the same. Very different presentation and flavor but the abx may well be working. It's still early to say for definite and it could be coincidence but I'll take it. It'll be interesting to see if the better (not great) sleep holds and improves and if it does and she gets another jag at a later date, if abs pulls her out again. Thanks again...
  18. EMST - is it insomnia caused by PANDAS/PANS? thanks
  19. Hello. Our 12 year old dd was a classic PANDAS/PANS child with on/off flares from 5 until about a year ago. We have had NO PANDAS flares in the last 13 months +. We believe that as she hit puberty her system matured/calmed down who knows but we haven't even had an inkling of anything for that time and previously we couldn't go a few months at best without a flare. Almost anything that provoked an immune response, could provoke a flare. So we are fairly confident that PANDAS as we used to know it for her, hasn't been around. But..... instead she has been battling insomnia. Sleep was always an issue for her during flares but it looked very different form what we are seeing now. She is experiencing sleep onset issues. At times severe. Sleep onset no earlier than 4-7am in 5 of the last 6 nights. Then waking 2-4 hours after falling asleep. The one night she got to sleep at an ok time she was up 4 hours later, so waking and not being able to go back to sleep are also an issue. This is the worst patch so far but this has been ongoing for a few months. We have tried Melatonin (used to work) Valerian Passiflora GABA Chamomile Hot milk. No electronics Lower lights Quiet bedroom Seriphos (to quiet adrenals) Benadryl .. works most times but not touching the sides this week Trazadone Sound machine We were told the trazadone...taken as needed for sedation not depression/anxiety, would knock an elephant down in an hour. It does work but is taking 2-3 hours and she is so fried/spaced the next day, she couldn't make it into school. She doesn't appear to be having any anxiety and she, and we, sorta know the signs for that by now She's self aware and able to voice feelings/issues - thanks PANDAS and can't think of anything stressing her, she says, unless it is uber subconscious. I am reading about a disorder different to insomnia called delayed sleep phase disorder.. more circadian rhythm stuff, onset often in adolescence can be lifelong and am panicking, to be honest. To have felt as if we've come out the other side of PANDAS with dd (still got ds with it but..) only to get hit by this... So...sorry long intro but does anyone have any ideas. It doesn't have a PANDAS feel to it but could it be PANDAS next gen for her? Any PANDAS veterans had kids seemingly permanently remit only to have ongoing sleep issues. I'm just looking for any ideas we can pursue/try. Great ideas for knocking kids out that we haven't tried yet. Sorry for the long post
  20. Hello. My PANDAS ds seems to get worse on vitamin D. I can't say 100% that it happens as his symptoms are all over the place, on off etc but I do seem to see an uptick in all sorts of behaviors following vitamin D and fairly quickly after, even as quick as an hour or so. Our PANDAS savvy ped said that was possible due to so much being affected in brain from vita D, and said for us to avoid it for now but try again later. PANDAS dd does really well on vitamin D but she's way further along than DS. I'm wondering for her how much of a component it was on her appearing to have outgrown PANDAS over the last 12+ months, as the improvement correlated with consistent vitamin D dosing. Can't offer any ideas why it may be bad at the moment for my ds or you tho', sorry. Good luck...
  21. Does his hand actually visually disappear or is it his proprioception of it. It doesn't exactly fit, especially if it is all visual but if it could proprioceptive led and sort of bringing/persuading his visuals it could be along the lines of Alice in.Wonderland syndrome. This isn't only related to PANDAS but it has definitely been reported in PANDAS kids (mine included) and can be a very varied issue from you/your environment/body parts seeming to shrink or grow. That's a really bad explanation of it. But you can google it.. I get it, I suspect when really tired or got a fever coming on. My digits will balloon in size and just not feel like they are where they should be, I will also feel as if my legs have shrunk and I am a couple of inches off the floor or walls will look as if they are moving miles away from me. I know they aren't but my head tells me they are, weird stuff like that, I can imagine that morphing even more with some PANDAS involvement. Anyway just an idea... good luck
  22. Hello. I haven't read the whole thread (sorry) so not sure if someone has already mentioned this but I've seen one of the conference videos where I think it was Swede said that the sibling incident rate for this is super high, somewhere around the 40% mark. So, unfortunately, the odds are not great for having more than 1 child with PANDAS/PANS. Most of my family members thought I was crazy to think we had a second child with it. As for friends, well..... but my gut was right and all the quirks turned into obvious PANDAS as he's gotten older. Trust your gut... good luck.
  23. another article re the same study http://www.bbc.com/news/health-34540363
  24. http://www.bbc.co.uk/programmes/p0312292 I'm no expert on autism but this sounds more like PANDAS to me...
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