faith
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Posts posted by faith
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phasmid
do you mean no c.diff from 'before' this recent azith and diarea? any way it could be coming back wit this abx?
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I just felt like saying this is an extremely well written article, not just for the sake of PANDAS, but it resonated responsible and truthful to me, .....very nice Rebecca.
(altho not sure, but they may have gotten those dates wrong, no biggie, but I think it 1999 that swedo did the study rather than 1989...)
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And by the way, I totally disagree that those who are supposedly cured are not on these boards or have moved on. (maybe some, but not all)...If they have moved on, and don't frequent these boards because their kids are well, I'm sorry, I don't buy it, because first of all, if they frequented this board for help and support and got it, I am sure they'd lurk around once in a while to give it back, especially knowing how desperate they were at one point. most of us (and most people these days) have their laptops glued to their knees on some days, so clicking here, there, and everywhere is a pretty simple task I would think.
Secondly, I see tht most of the discussion re ivig kind of started here on this board around a year or so ago....it hasn't been that long, so most that hve gone onto that journey by getting info from this forum are pretty much the same ones who've been around all this time still going thru stuff. I'm sure there are some who have gone away, but I don't buy that they left the country and have never looked back......
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kelly,
I won't give a long response, but I just want to give one thought that I have....if you're boys are mild enough, it is my feeling (and only my feeling) that in a few short years, things will probably naturally settle down for them anyway. if they are not getting any kind of severe or even moderate exacerbations from strep right now, or even may not be getting strep as much, something tells me it probably will not likely happen in the future. this is not a blanket, true definite statemtent, its just my common sense talking. we know that many kids with tics (and I think that is what you and I mostly deal with, along with some other secondary issues) that seem to remit around the teen years. unless something really goes awry in their system (which would be not likely at this point, altho of course possible, but you know wht I mean)....than I would think (and hope, that's what I'm shooting for) that they will be pretty much okay in the long run. Even the kids who are getting these treatments are still not out of the woods, so really who knows. You'll have to make a decision and stick to it for the reasons that make sense to you. We still have problems here, but I, personally feel I don't want to tip the scale in the wrong direction, I just can't, its taken me a long time to accept what I have and see that my son is faring well (socially and otherwise) despite the tics and other problems. at some point, we hve to accept or take the gamble., and be realistic that the outcome may not be what you expect or hoped for.......only you can choose..... ....if my son was worse off, I might make a different decision.....
sorry, I was trying to go for 3 sentences, but ................
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Yes, if my dd should need another ivig it will be without the IGA in it...even though this risk may be minimal. I ask myself, "why would I take any unnecessary risks? She's already been through the ringer!" And these doctors are all good doctors, that is the scary part, that even the brightest overlook things or assume. First, do no harm...right? The fact is that the doctors who where giving ivig never even tested her IGA, it was another physician who caught the deficiency. Once the nurse looked at her IGA numbers she immediately said that this child should never have received gamma with IGA in it and "blessed" the physician who did catch it.
hi coco,
but what I don't get is that being that your doctor is an immunologist, and he did the work up (I assume) didn't he know that low iga is a problem? that is how you went on to do monthly ivig, correct? based on the immunodeficiency work up you had there? Is it alright for me to say to parents, please be aware of all these things, because just because somone does ivig, doesn't mean they are well versed in PANDAS or how exactly to treat. I have heard of the low iga before, a couple of folks here have talked about it for their child, I think htere is a dad here who did, cant' recall at the moment. I truly don't understand how something like that could be missed--what is your plan now?
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Did I just refer to my son as "it?"
Ameteur.............
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What else is Oil of Oregano used for? Can you put it in a capsule?A couple of weeks ago I posted about my son's warts. We used the Oil of Oregano and applied it topically for about 2 weeks (not every night but most nights). We applied the oil at night and kept them covered overnight only. I am happy to say that they are now GONE! It was truly amazing stuff! Other than smelling like a salad dressing it was a fairly easy treatment. Once again, this board came through with ideas! Thank you!
Yes, I've read that you can get those empty veg capsules and put a few drops in the capsule and swallow it that way.
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I have a thought, hope you don't mind, but for those here, ....how do we know that the 'flairing' isn't a reaction to the treatment and actually is making things worse for a time....and then when that particular flair backs down, it is kind of an illusion that things are getting better, but in reality, it is just a releif, so we think things are better. sorry, sf, I know you don't like me asking this, I know some have had symptom releif in the long run, but it is really a rocky road,....for me, I'd rather take the evil I know for now, than to add more to the mix. maybe I would be happy once the second evil went away, but does that mean it is all better? don't know....
candk, where did you have the ivig and what did hte doc prepare you for? (p.s. my son is pretty much just what Fixit described for her son)...
is this a given that things will get worse, or is this just what other parents report? does complete resolution ever happen?
I mean, I've had flairs on my own without ivig, and then when things settle a little, I could say 'oh looks like he's finally healing'.....but its not from ivig cause we havn't had it.....is it possible that for some, its not exactly the antibodies alone that is the problem? if it is, then those things have to be addressed before we can count on ivig doing anything positive.....anyone understand what I'm getting at?
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My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.
Congratulations on figuring this all out on behalf of your son.
The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....
what do the two of you make of my son's anti-lysoganglioside which is not at 320, but 1280......(cam was 179)..we have tics as main presentation and some ocd, but I'd rate it secondary. don't think he has what I would call rages, but is very headstrong and likes to have his way, so just more relentless I would say, and very irritable in the mornings especially. (just to not, fuelforall also has 1280 for anti lyso)
thanks
Faith
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I don't feel this is a 'symptom' of pandas or anything else. my son is 11 and is the same way. I think he is just used to hving company, because we let him stay with us for so many years. I should hve nipped it a long time ago, but I didn't mind when he was little, I liked it.... he likes me to lay with hm until he falls asleep and then if he wakes up during the night or wee hours, he shows up.....he uses the excuse that he loves me and likes company.. don't know if he's afraid, or just used to it. p.s. I slept in between my parents til I was about 10 as well.
at 14 tho, will she stay in her room if you insist? what are her reasons? lights on?
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Carolyn,
hi
what things have you treated with this system?
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I read about that study with great interest.
They found a family where the dad and all eight of his kids (all with TS) had a small genetic defect which caused them not to have enough histamine in their body. The researchers beleive that low histamine levels may be a cause of TS. Among other things, histamine is very important for healthy brain function and neurotransmission.
I was in touch with one of the authors of the article and he said that, as soon as they can, they will begin testing Histamine 3 receptor antagonists on adults with TS. These drugs are in late stage development and only affect histamine levels in the brain. It should be interesting to see what happens.
If one wanted to raise histamine levels themselves, they could (very carefully) supplement with the amino acid l-histidine, which converts into histamine. It would have to be done carefully, though, as histidine raises histamine all over the body, not just the brain. It's something I'm looking at for my son, that is, possibly supplementing with a tiny dose of histidine and slowly increasing it, watching for any side effects and co-supplementing with zinc as it can be depleted by too much histamine. There are other severe side effects from too high levels of brain histamine, so it's not something to be toyed with.
Am I understanding correctly that it is suggested here that it is LOW histamine (or not enough) that could trigger the response of tourettes?
only wondering because we hve talked alot here about HIGH histamine being a problem (as in response to allergies)......so kind of confusing. If anyone can ellaborate on this, I'd be interested. What is it about the not enough histamine that would cause tics?
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two questions here,
Stephanie,
what did you mean by DPHDHA? what is that? where is that on the test? and where did you find of it being linked to clostridia. i'm interested in the clostridia. could you elaborate or give me more info?
bqbarnes,
aside from the myco p being elevated, what else is standing out for you that you think makes your son so sick? i don't think his levels are grossly out of range. Dr. K. hasn't reviewed this yet, correct?
thanks
Faith
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loved the pics....hes darling!
great to see things are going so well Carolyn....
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Has anyone seen old behaviors return with Biaxin? My son started Biaxin 6 days ago and his tics are changing daily, sometimes hourly. We are seeing a lot of old ones return suddenly and then leave. I dont know if he is having a bad reaction or if this is turning of the pages. He has up to 5 going on right now when usually there is only one at a time.
bmom,
why did he start Biaxin? what was he on before? he's had ivig before tho, correct? how were his tics prior to going on the Biaxin?
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smartyj,
how did you find about the toxoplasmosis? what kind of testing is that?
do you have a cat?
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thanks for that smartyj, now that makes me think more. You felt the keflex helped, but he was also on nystatin at the time? ... whith the azith, any diarea?
Santi, you didn't mention any gut or bowel issues, was there any other reaction while on azith such as diarea? or anything that would be considered a gut/bowel issue prior to any abx?
Perhaps we are not giving enough reality to the fact that abx can cause some gut problems, that will in turn cause issues (yeast) that will bring symptoms of tics out. this is a hard one to figure out, but I'm slowly working on it. I havn't really explored that avenue much because I don't know how you can tell if yeast is present, that's a hard one, who knows whats going on in there without testing, and I'm not even sure the testing is reliable, that's more of an alternative thing, not sure alot of docs would agree there was yeast problems without obvious symptoms, so this is one for a DAN doc or naturopath.
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Santi,
did you feel like you had the same response before, (as you're saying starting 'again')?
I didn't like azith, I felt on after a about 5 or 6 days that my son's vocal was off the wall loud and very frequent. I didn't wait it out, I took him off, and he calmed down the next day. now I don't mean he stopped the vocal, but the usual went to crazy and then back to regular when I stopped the azith. don't know what that was about, but it was really obvious.
I'm working on a theory,...could I ask, does or did your son every have any stomach/gastro/bowel issues..anything? could yeast be a problem?
Faith
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its what, its what?!!
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I would be inclined to think this is normal, especially if you say he has some belly protruding? of course he is going to be concious of it at that age. my son is skinny as a rail, and I have had him not want to wear a puffy coat at 8 or 9 because he said it makes him look fat (basically to them I guess that means 'uncool'?)...
that said, the part about the two or three shirts sounds more sensory of some type, not sure what that's about. but it sounds like he may be trying to just hide the way he looks in some type clothing? again, my skinny rail wears very large t-shirts to mask his skinniness, because if he wears his size, he thinks he looks 'small' or too skinny, ...again, basically 'uncool'....
Now the "P" word.....is that a cuss word?.....
I'm ust being facetious, but I think we should name the 'symptom' first, and then decide if it is 'due to PANDAS'. not every crazy thing our kids do should be considered a sign of disease.....unless of course it is....... Faith
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If you are talking about the kind of throat clearing where somone sounds like they are attempting to truly 'clear' the throat, as in mucous, ('ahem' type sound),....may be a tics, yes....but two things I would suggest to look into is a trial of no dairy, as this does produce mucious and if mucous build up is the problem, it may help alleviate it.
If it is a thoat clear with a vocal 'sound', where you actually hear the child's voice, then I'd say that it was a vocal tic, from experience. It doesn't mean it will stay forever, it could come and go. if the child has no other symptoms of any type tics (or ocd or other issues), well, you'll have to gauge that.....
Also, when my son presented with vocal tic, our DAN doc suggested Gerd or acid reflux could be the problem, altho there were no symptoms. he said many don't show typical symptoms of it. he gave us previcid to try, and also sleep with head elevated, (not a pillow, but the legs of the bed should be raised with blocks)......
of course it didn't help us, because I don't think this turned out to be my son's problem, his tic is a vocal tic. but it was worth a try.....
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Why do some not respond with elevated ASO, AntiDNase?
in PANS / PANDAS (Lyme included)
Posted
amy,
same info on what? couldyou clarify? thanks
Faith