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faith

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Posts posted by faith

  1. Curious as to where this info would be found?

     

    just to note, our trial of azith seemed to make my son's vocal increase. I have him off abx for now. (we are East Coast if that matters.) Altho a bit back, I seemed to get the impression that azith helped more for those on the West, don't know where I got that impression tho. If that means the resistant strain on the West Coast would "respond" to the azith? ... and what about East Coast? does this indicate that azith doesn't help here? I'm kind of confused as to how this would go. In other words, East Coast DOES NOT respond to azith? and the West Coast DOES? .....

     

    is this premise coinciding with your thoughts Vickie? If you could fine tune this, I'd be interested.

     

    thank

    Faith

  2. sww,

    what anti neurals are elevated that would indicate ocd? is that what you meant there? one of the thingies from the cunningham test? Is this the first time trying an SSRI (zoloft)? does your child have any tics? (we are kind of chronic here too, with ocd vamping up).

     

    Are you indicating that Dr. L. is not sure your child is a PANDAS case, is that what you mean?

     

    thanks

    Faith

  3. my son has been on clonidine for about a year now and it's been great for us. He started on the smallest dose and it worked up from there. He takes his largest dose before bed and a very small dose in the morning before school. Whe he takes his evening dose he is ready to pass out an hour later. This works for us though b/c it's bedtime. He takes a small dose about an hour and a half before his school day begins and he is FINE. It took him about a month to get over feeling tired after his morning does, but his body has adjusted and he's doing great. I do keep the a.m. and p.m dose 12 hours apart so that it stays in his system. Another side effect I noticed is that it made him more emotional. This lasted for about 3 weeks and then his mood evened out. He is the same happy child he was before meds, but without the tics.

    He is basically tic free and has been since August (It took me 6 mos to figure out what dose and what times work best for him). He notices it too. Once in awhile he'll make a comment about how he doesn't do his tics anymore.

     

     

    rysmom,

    did your son have any vocal tics? if so, did it help with that?

     

    thanks Faith

  4. smartyjones,

    I just wanted to give my take on this. I don't recall if ocd is part of your son's symptoms, but to me, this sounds more like separation anxiety. I've dealt with this more when my son was a bit youger, and I can't recall how old your child is, about 5 or 6 I think? My son always wanted friends to come here, he would go to someone else's house, but I had to go to. it took a while to finally get him to stay at someone else's house without me, so usually just had the kids come here. Also, he loves to have sleepovers and has had a few, but he never would go to someone else's. So jus given the situation you describe about a playdate, it sounds to me that he may have fussed alot because he didn't want to go alone to someone else's house and may not have known how to articulate that, afterall, he is still kind of young. Even tho they want to see their friends and play, he may just have an anxiety about wanting to be on his own turf.

     

    Faith

  5. I think it is worth a try, especially if you spent the money on the test. those things are not hard to take out. I would start with the high ones (4 and 5). you don't have to do it forever, give it two to four weeks. just try to find alternatives to the milk and eggs. eggs are not hard and actually neither is dairy, just find alternatives if you can.

     

    we've had Igg testing, and I feel like I had some good results when I found corn to be my son's higher sensitivity, altho we have major weight (underweight) issues here, so I could not do that forever. I won't say it helped absolutely, but eliminating things like high fructose corn syrup that he lapped up at the time did seem to help with the tics he had at the time, this was several years ago. I won't say it was the answer to it all, but I think it is worth the try. you never know what symptoms might be alleviated by the restrictions. At the very least, limit it or at least gauge how he does on days when he didnt' get those foods.

     

    Faith

  6. I still wonder if it's really a distinction or if we just haven't yet found the right treatments for the "chronic" folks. I was "chronic" (anorexia, bad tics, mood disorders) from about age 13 to age 17 or 18, at which point I was found to have tuberculosis and was treated very aggressively with antibiotics that I had never had before (2 years worth, but I was better PANDAS-wise toward the beginning of that). After that period, I was never chronic again, and I never had been before that period either. My kids have only been episodic so far.

     

     

    Folks,

    As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

     

    Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

     

    Michael

     

     

    sorry to hijack for a minute, but Momto2Pandas,

    are you sying you had issues until you were treated for TB, and then things started getting better?

  7. btw, just to clarify, I didn't answer the question....

    no, my son did not start with vocals, that came later. It does sound like they are not exactly vocal, but ocd in nature, reassurance? not sure. I would call what you described 'verbal', not exactly vocal, as he is saying words, not sounds. but I would also think it not uncommon for a vocal to be a first tic, or at least the first noticeable one. I also think the jaw opening is a tic, I've seen that one. just because they say it hurts, it may be them giving an excuse for something they don't understand themselves whey they are doing it. and it actually does hurt or 'bother them', it's an uncomfortable urge or feeling, so in a sense, it does hurt.

     

    Faith

  8. I think you should not write out your son's symptoms in a paragraph form, I would just list the behaviors, i.e. tics and list them, OCD, and list what you've seen, Sensory, and what you've seen, Behavioral, and what you see, etc. I think you should just have your own notes in front of you about what is going on and and rattle off his history as best you can, or at least put it in the most brief and easiest outline. my feeling is that if you make it too complicated to read, she may not really delve into it.

     

    When we were there, Dr. L. did not really look at my file that I brought, altho I had a copy for her and she put it in the file, but I am not sure she actually studied it. I don't think you need to 'convince' her too much, if that's what your worried about. but I would ask all the questions you have to and make sure you are clear on her answers. don't leave the office until you are satisfied of all your concerns. she can be a little hard to pin down afterwards.

     

    Good luck,

    Faith

  9. Faith, any immunological tests done? Immune deficiency issues? Just curious.

     

     

    Have not had these tests done. I may tho, as I am curious as well. Don't know if it matters, but my son does not get sick alot at all tho, I think you said yours doesn't either? we just get a 24 hour virus once a year. don't know if that means he doesn't have immune issues, but he seems healthy. except for his weight, very light, a little underweight. I would be surprised if we found any immune deficiencies, but I don't really understand all that yet, so I may just do it as a rule out......

     

    melanie, (post #10, not 3).....

  10. worrywort, (love it.. :) )

    I will just ditto all the Chemar said above. I see that you have a negative strep, okay, did they do a culture as well? I would continue with the antibiotics for the full course, and see what happens. this may be something you can nip right from the beginning if it is infection related. if you see any kind of good results, try to get more than the 10 day course. knowing what I know now, that's what I would do. if it doesn't help, ask for another type antibiotic and try again. at least you will see in these early stages if PANDAS is your concern.

     

    I have similar onset as you describe, from an early age, but my son is now 10 1/2 and I am going back now and exploring the PANDAS connection. I can't connect recent years to strep, and our earlier history is in the archives, so my advice is to explore this path now, so you don't have to go back and wonder.

     

    Faith

  11. okay, well I guess my son will fit into that category, I am not positive what the initial trigger was, altho I suppose its possible to have some minor quirks (tics, ocd tendencies) that were originally there and that can build up over time with subsequent infections, and for us it seems to be viral, I just can't find definite proof of strep (but for one time a few years back), hard as I try.

     

    so all we've tried is antibioitics and so far a month on augmentin and almost a month on azith (at full strengh, but not mega dose) does not seem to have any benefit that I can see. You can also see where/why I am reluctant to go further with steroid or even persue IVIG, due to the fact that we have tics and the questionable connection to strep. We've discussed before how our kids are similar, altho my son does not have the rages, just anxiety/irritibility that can get a little ugly if we try to discipline or argue back. but tics and ocd are the problem here.

     

    don't know if that helps.

     

    Faith

  12. What do you mean by 'chronic'?... do you mean when they have had symptoms for a while and they are kind of always there and you aren't sure that strep is the 'exacerbator' at this point?

     

    or do you mean the kids that get strep or illness and things just get worse with each illness, and you see definite "exacerbations". By chronic, do you mean those that can't lick the strep? ..... (I see more of a wax and wane, not dramatic episodes, and strep does not seem to be at play here in recent years)

     

     

    thanks

    Faith

  13. But the Threelac, that is natrual, is it? not sure. I wouldn't do Nystatin unless guided by a doc, and doubt any of them would entertain me, but I just wondered. The Candida Clear, I would do, and I actually have it, but he can't swallow the capsule and as you know the potency of taste is awful, it actually burns your throat.

     

    Right now I'm giving him olive leaf at 250 mgs. a day, its a little easier to get down. I'm really doing it for anti-viral benefit (again, just a trial here in lieu of abx) , but it says it is anti-fungal as well, so who knows if this will help there too.

     

     

    Faith

  14. I laughed at this too. I read so many papers over the past 80 months that I forget that antilysogangliosides aren't dinner conversations for everyone. I'm embarrassed to say they are now at our house. It really is my goal to make the material accessible to anyone -- so please send me an IM or post if it's not making sense.

     

     

     

    I dunno, but is anyone else here jealous of their 'sexy' relationship? ............... -_- ................ :wacko:

  15. I have a question here. Would anyone know if it would be harmful or whatever, to treat for yeast even if it was not really known if there was a yeast problem? would giving antifungals hurt to try, just to see if it has any beneficial effects? in other words, is it bad to give an anti-fungal (I'm talking about something like Threelac or Nystatin) if yeast/candida wasn't really the issue. just wondering. that's something I havn't done yet, and I just wonder if it might be worth a try.

     

    Faith

  16. Bat-Sheva,

    thank you for your info.

    So am I getting it right that when she had these tests recommended by the doctor in Isreal, it was found that she tested positive to Influenza A. and also showed the MP infection or antibodies or whatever marker? and by that time, the actual illness was kind of over, but for the cough and symptoms of tics, etc? Basically, could you say this was an underlying, ongoing infection that was not fully eradicated? and despite antibiotics, it still did not clear, or rather came back with the next resp. infection?

     

    sorry to pick your brain on this, but I think it helps some of us to understand the role of underlying infections that may not be obvious. wow to you for finding out all this.

     

    thanks

    Faith

  17. Hi! I have not heard back yet from Dr. T but I have requested the increased dose of zith and/or clindimicin from him. I hope to hear by the weekend. He agrees that she needs higher doses and needs to stay on it so I don't think there will be any trouble once we get the new script. She is doing better though, I guess what I did increase is finally working. The wiping has not been an issue yesterday or today so it looks like it's not strep and was OCD. I have not looked at your link yet but I will later today. We go to see Dr. O on the 15th so I am anxious to update her on our trip to NY.

     

     

    So you did go back to the 500 mgs. level? just wondering? and you feel she's better? interesting.

     

    Faith

  18. ^_^ ... I don't think any of us truly understand it all, but rather just desperately want to connect all the dots. ....

     

    If I could get past all the fancy medical terminology, I MIGHT be able to discover something important... but that is what usually trips me up, the words. but I desperately want to figure these things out, so I just read what I can, ask some questions, and hope the brainer types here will figure the rest out for me!

     

    btw, nice user name..... ;)

     

    Faith

  19. ((Michael))

    don't kinow what to say, but I pray this will prove to be of some help to you all, perhaps a blessing in disguise.

     

    Are you sure none of the meds he is on could be causing some of this? sometimes meds just don't agree with some kids and have really adverse effects on them. really don't know, but I hope the psychotherapist and psychiatrist can sort this out.

     

    God Bless and please keep us posted.

    Faith

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