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dut

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  1. Like
    dut got a reaction from andrew in vision zooming in/out   
    Hi - my dd had something that may be similar...
     
    during an episode about a couple of years ago, when she went to bed she said that it looked as though I (lying on the bed with her) was miles away and she would look round the room and everything felt as though it was too far away. It would correct itself for a bit and then I and other things would be too far away again. It only happened at bedtime (which is a low point for her when things crop up that might not be evident at other times of the day). It went away after a couple of months.
     
    Both I and my sister get something which I believe to be similar but maybe not.... we get kinda proprioceptive changes of a sort. When we're tired sometimes, normally laying in bed at night, we feel as though one of our digits or sometimes a leg has grown to super enormous size. Not a bad but strange feeling, as though a thumb, say, has suddenly ballooned to 20 times it usual size. My dd's sight thingy felt as though it was along the same lines, a perception type issue rather than actual shifting in vision.... dunno...
     
    hope you work it out, good luck...
  2. Like
    dut reacted to Sheila in A note about Facebook pages   
    I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

    A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

    Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

    What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

    We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

    Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

    We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.
  3. Like
    dut reacted to Wombat140 in Red speckled rash, please can anyone identify?   
    There's this rash I get from time to time; it started years ago, and was quite noticeable for maybe a year or two, and then it seemed to sort of fade out, but I still notice tiny bits of it every now and again. It's only just occurred to me to ask about it on here.
     
    It appears as small circles of dark red speckles, about an inch or two across, nearly always on my arms or legs; I can't remember whether they were rings or solid circles, though I rather think they were rings. Not raised or bumpy at all, just speckled. I can't remember whether it was itchy or not when it was at its height.
    That's what it was like at the time when it was most noticeable, now when it appears it's only much smaller patches of no particular shape. I would attach a photo, but unfortunately the patch I noticed the other day has gone again!
     
    My mum tried putting tea tree oil on it, which seemed to work to some extent but it kept coming back, so she took me to the doctor about it and the doctor said it might be ringworm and gave me some cream called Daktacort, which didn't have any effect at all. (After that we kind of forgot about it.) Having seen photos of actual ringworm since then, I don't think it was, ringworm is far more lumpy. I honestly can't remember whether this was before my OCD symptoms started, after, or at the same time; if it turned out to be relevant, I could probably find out by asking my doctor to look up when that cream was prescribed.
     
    Do you happen to know anything that causes a rash like that?
     
    I'm just asking on here because you seem to know just about every infection there is, between you! There's a possibility of getting my blood tested for infections (this Wednesday, February 3rd), and I thought if there is any infection of that nature that looks like this, it would be as well to know so I can make sure to ask them to check that one. Of course, it may be some perfectly ordinary non-PANS-related fungal infection or something that my doctor didn't happen to know of, in which case it'd still be useful to know.
     
    All the best,
    Wombat140
  4. Like
    dut reacted to dcmom in Tired-Tired-Tired   
    Hi ladies- you definitely are not alone. The good news, from where I stand, seven years from onset and diagnosis, is that even though my kids still flare, they are getting milder. We are going through an especially rough patch right now because both girls, ages 12 and 15 are flaring, and out of school due to ocd. That being said- the ocd is not impacting every minor area of their life. Seven years ago, when I brought my younger daughter to the doctor it was- wearing footed pajamas, no underwear and rubber boots (that is all she could wear), carried by myself or husband (most likely screaming, after attempts at escaping moving car), not eating, not looking at people, unbathed, just total "crazy" is the only way to describe it. There was no mistaking, we walked in and the doc knew pandas. Fast forward seven years, many flare-free years, many difficult flares, many types of treatment, to todays doctor trip. No one would ever know she has anything wrong with her. Bathed, dressed nicely, poised, impeccably behaved, cute, happy, out for lunch after, etc. She is having debilitating ocd, but it is restricted to a few areas of her life. So there is hope, if my girls continue down this path, their flares will be hardly noticeable in a few years. So hang in there and do your best- just love them- that is it.
     
    That being said- I am tired too. It is SO hard to see your kids suffer. I worry about their self esteem. I worry about their future. I cannot work- had to quit a job that I loved- because with two, it seems that one is always either not in school or on the edge. I have gained weight. I am angry at my husband much of the time because he has the luxury of not "getting it" when he doesn't feel like it. (some days he blames them and me, mostly if he is stressed I think. He yells sometimes, even if it is ocd and not behavior- sometimes it makes me think HE has pandas too). I ALWAYS, every minute have to be the level head in the house. I have to do ALL research, go to all doctor appts (mostly alone), make all decisions. We have spent an unimaginable amount of money that we do not have. So I feel not only do my kids suffer with this illness and all it brings- but also we cannot DO vacations, broadway shows, pony leases, etc.- because the money for that is spent on treatment. We probably have averaged 5-10K per year for 7 years. In 2015 it was probably $25-30K, plus $10k for an attorney to deal with the school. And believe me, I am thankful we were able to spend all of this- but we are barely making it.
     
    Therapy has been SO helpful- but to be honest I would probably not waste money on it unless you are going to the Rothman Center or Rogers. We have gone to Rothman several times, and now realize what a waste and money suck local therapists are. By us, there are NONE that you would want to see that take insurance. We have been trying someone now, but the way I see it, local therapists (not in an intensive program setting), have no fire under them. They figure they will work on issues over the next six months to year, while charging $165 per week. They will spend several appointments "getting to know the child", making lists, getting updates. All the while, in between weekly appts, the child is NOT FUNCTIONING. Don't see me for a pleasant 45 min and then give me a smile and say see you next week. It doesn't work. I really think our kids need QUALITY ERP done quickly- and that seems to be mostly only available in these intense programs. Our doc at Rothman knows he has the kid for 3 weeks, only, and he wants to just get in there and FIX it.
     
    My kids were on daily antibiotics for many years, and off for many years. Being on or off has not really changed the course of their illness. I am happy that they are off, as I do worry about unintended consequences, but believe me, if they helped- they would be on them.
     
    Both of my kids are on prozac. They have been for almost two years. We have had NO negative effects, and I potentially credit the prozac for really CALMING down the flare ups- as that did coincide. My younger daughter always had a baseline of being very shy, and somewhat anxious- the prozac made that go away (mostly). We are in the process of raising the dosage for both of them, in hopes it will touch the ocd.
     
    It is so helpful to hear and share stories with everyone- it is hard to find others who really get it. If you are on FB- many pandas parents just shared photos of their pandas kids- and it really was beautiful and touching.
     
    Take care!
  5. Like
    dut reacted to Wombat140 in Anyone here got worse after taking vitamin D?   
    Dut posted while I was replying - thanks Dut, useful to know that. And I know what you mean about it being so up and down naturally that it's hard to be sure what anything is doing, mine's like that too! (hence why I was remarking on my mum and I both agreeing that it had got worse - not always the case!)
  6. Like
    dut reacted to wisdom_seeker in disappointed / pissed by neurologist app't -- what should I have expected?   
    Thank you all for your words of support. And also the advice to just move on.
     
    With your support, I don't feel so alone, and I think I have moved on.
     
    It also helps that one of our MDs said that he wouldn't have had any expectations for this particular neurologist -- that he's OK for textbook cases, but not for anything complex, anything that requires 'out of the box' thinking, the sort that both my sons seem to need.
     
    I've now gotten a referral to one of the child neurologists who work at the PANS/PANDAS clinic, and hope for a better outcome. I am a bit apprehensive, because he just isn't a textbook case.
     
    Now (after 3 weeks of abx and 2 weeks of prednisone) he doesn't have the choreiform movements any more, the sensory defensiveness is a bit better, though rubber and water are still his enemies. But mostly, his symptom where his brain thinks that his other hand must be the actor if someone touches his arm is so weird (e.g. L hand if touched on R arm). Especially the part where the supposed "actor" hand then disappears (and then fades in and out) of his brain's body map. The shrink still thinks it's part of the ganglia driven sensorimotor dysfunction, but I still worry it will make him labeled a crockpot.
     
    So I hope that the neurologist can still see some signs that say "he's telling the truth". And that she will order the set of tests to confirm the Dx and to figure out what the trigger(s) might be.
  7. Like
    dut got a reaction from MomWithOCDSon in A Panda Goes to College!   
  8. Like
    dut reacted to JuliaFaith in Never thought Strep was an Issue---it may have been.   
    We are using 'Chlorhexidine' as a swish and spit 2xday. Ds swishes for minimum 30 seconds. Best to do after eating and before bed so it stays in mouth.
     
    The reasoning behind the xylitol gum is that it is on the mouth for so long. Other rinses may not have as much effect per doctor.
     
    Jenniferg-- Azith abx did not kill the strep which tested positive and is the same kind as you find in throat.
  9. Like
    dut got a reaction from MaryAW in Update on PANS daughter, 11   
    Hello.
     
    It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd.
     
    Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc.
     
    Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those.
     
    My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens.
     
    I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy).
     
    I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially.
     
    I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget.
     
    I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.
     

     
     
     
  10. Like
    dut reacted to MomWithOCDSon in Update on PANS daughter, 11   
    That's great news, dut! So happy for you and your family!
  11. Like
    dut got a reaction from philamom in Update on PANS daughter, 11   
    Hello.
     
    It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd.
     
    Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc.
     
    Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those.
     
    My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens.
     
    I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy).
     
    I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially.
     
    I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget.
     
    I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.
     

     
     
     
  12. Like
    dut got a reaction from MomWithOCDSon in Update on PANS daughter, 11   
    Hello.
     
    It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd.
     
    Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc.
     
    Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those.
     
    My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens.
     
    I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy).
     
    I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially.
     
    I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget.
     
    I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.
     

     
     
     
  13. Like
    dut got a reaction from Josie in Update on PANS daughter, 11   
    Hello.
     
    It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd.
     
    Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc.
     
    Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those.
     
    My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens.
     
    I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy).
     
    I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially.
     
    I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget.
     
    I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.
     

     
     
     
  14. Like
    dut got a reaction from MomWithOCDSon in Update: I Need to Brag   
  15. Like
    dut reacted to MomWithOCDSon in Are your PANS/PANDAS kids ever symptom-free?   
    To be perfectly honest, no, mine is not. But I think there are many components that likely contribute to that.
     
    He appears to have suffered from PANDAS for at least 6 years, and likely longer, before we found someone who would actually grant or accept a PANDAS diagnosis, let alone treat it.
     
    So during some key developmental periods, his brain was being wired to "compensate" for that autoimmune onslaught . . . to suppress his anxiety, to find "work-arounds" for his OCD obsessions and compulsions. Undoing that wiring in its entirety is a tall order, and he's a tough customer.
     
    But the rest of our story is this: he went from being an entirely nonfunctional kid to a highly functioning one. He is happy. He's engaged, funny, witty, strong, compassionate and focused. He still contends with some anxiety, especially situationally, and he can lapse into OCD behaviors as he attempts to compensate for that anxiety. But he is, as we've been taught to coach him, "handling it." And generally handling it well.
     
    Many in the PANDAS/PANS community are after that "100%" or "back to baseline," and I applaud and celebrate every family that's found their way back to that pre-PANDAS point. But in the interest of being fair to those among us for whom that may not be entirely realistic (particularly in the short-term, though I, too, will continue to hope for 100% myself, one day), I just want to say that life is, nonetheless, rich, joyful and limitless. As is my DS's potential. Most people have some "Achilles heel" as they make their way through the world, and this "residual" OCD/anxiety is currently his. But we like to think that doesn't make him "less than;" rather, it contributes to him being "more than:" more compassionate, more kind, more accepting, more grateful.
  16. Like
    dut got a reaction from kimballot in Hang in there! We are doing well   
    So pleased for you
  17. Like
    dut got a reaction from JuliaFaith in Ketones for a Healthy Brain   
    Dr. Perlmutter has written an excellent book along these lines "The Grain Brain". A really good read with just enough science. Sweden is the first 1st world/developed country government to shun the high grain, low fat diet in favor of advising for a low carb, high fat diet (right fats of course).
     
     
  18. Like
    dut got a reaction from ashley in GFCFSF vegetarian suggestions?   
    Hello.
     
    You may also want to look at paleo recipe sites. The paleo diet includes meats but many recipes themselves don't and all strict paleo recipes should be GFCFSF.
     
    There are also a number of recipe maker apps on some of the sites where you can input your ingredients and it will spit out a recipe. I've never tried these so can't vouch for them but it may be worth a look.
     
     
  19. Like
    dut got a reaction from riffleshell in Wishing everyone..   
    a peaceful Holiday and a New Year full of healing.
  20. Like
    dut got a reaction from rowingmom in Why would/could melatonin temporarily stop PANS symptoms   
    rowingmom - it would seem to be the melatonin itself as within minutes (15 or so) of taking it his tics ramped down by 70%+.
     
    I've often seen a lessening in behaviors with ds when given melatonin for bed but just thought he got too sleepy to play up but as this time it was tics it was more evident that it was something else. Maybe it was just coincidence, we'll see what happens tonight.
     
    I haven't ever noticed melatonin have a similar effect for dd who has a more classic tics/OCD presentation than ds. I'll be watching both more closely after melatonin from now on..
  21. Like
    dut got a reaction from bigmighty in Good articles to give to school?   
    I love this article
     
    http://thewalrus.ca/a-feverish-debate/
     
    iIt doesn't speak directly to what school needs to do but I think it's a great look at what it is really like for kids/parents, it's realistic and addresses some of the medical side. Also, it isn't afraid to address the 'controversial' aspect of PANDAS. We used that for the 'feel' and the NIMH PANS page for the big-name-institute back up stuff.
  22. Like
    dut got a reaction from MomWithOCDSon in Teen accused bomb plot, rare form OCD/PANDAS   
    http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot
  23. Like
    dut got a reaction from 4Nikki in PANDAS and sugar   
    My ds sems to react fairly instantly and negatively to sugar. I used to think it was yeast (he is yeasty) but felt it was too quick....
     
    I'm now wondering if it could be something along these lines, made worse by an inefficient insulin response.. dunno.. thought it was interesting tho....
     
    "But over the last 20 years, we've come up with a whole bunch of different ways to sneak around the Blood Brain Barrier, and deliver drugs into the brain.
    One method involves squirting way too much sugar into the blood stream. Any excess of sugar will normally be mopped up pretty rapidly by the body's insulin system. But in the meantime, the sugar sucks water out of the endothelial cells, and makes them shrivel. And so, in the brain, the tight junctions between the flat endothelial cells that make up the blood vessels will open up - but only for about 20 minutes. It's not a long time, but this allows you to increase the amount of drugs that get across the Blood Brain Barrier by ten or even 100 times"
     
    from this article
     
    http://www.abc.net.au/science/articles/2003/12/11/996860.htm
     
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