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Posts posted by faith

  1. abbe,

    The last bloodwork we recently did thru our DAN doc was for quite a number of things, and the IGG's and IGM's for mycoplasma p. were in there as well, but there was some other things the doc was looking for too. The tech took NINE vials of blood from my little 55 pounder. he was great, but he did feel a little faint at the end and had to lie down for a bit. For just the IGG and IGM stuff, I'm guessing it would be maybe two vials, .. maybe the others who have had that can say.


    Did you mention before that your son already tested positive for mycoplasma? were you able to make contact with the doctor?



  2. Amy: I totally understand where you are coming from. I look forward to the day when I am only checking in on the forum to give long term updates.


    I was thinking that it would be nice to tag people's success stories at six months and one year post IVIG or plasma exchange at the top of the page under Helpful Threads. Include: History, length of illness, treatment, antibiotic strength and treating Dr. Each individual can always edit as time goes on.


    Just something for people to read when they are in the thick of things trying to determine which treatment and Dr. is best for their child. AND, more importantly, positive outcomes that provide hope.









  3. luvmyboyz,

    I feel like the breathing tic will be something transient, I have a recollection of doing it the opposite way when I was a child, like I couldn't get enough breath into my lungs, so would take long deep breaths and try to hold it. I don't think it lasted too long, but I think I had a couple of transient tics as a child. my son is the one with TS, he is 10. I don't think he's ever did that one tho.


    I wish I could help in some way, ... maybe you could try and work with him with some calm breathing before he goes to bed? don't really know, I know my son is not very cooperative when I try to help him to change or calm down with a tic. do the best you can, I have a feeling it won't last too long.


    I also am inclined to tell you to look into the PANDAS issue. has your son been sick recently? have you had the kind of testing for strep with your other boy as well? only because of some of the symtoms you describe, altho I am not at all well versed in PANDAS yet, and am still exploring that path as well........blessings.




    could I ask what abx you are doing that has helped? is that what you feel is keeping your child stable? how did you find that he had strep in the gut? does he take any other meds?




  4. There's a poster called "lyme mom" on the PANDAS side of the board, she is pretty well versed in this, and there are a couple of threads talking about lyme testing. maybe some of the info you're looking for is there. you could go to her profile and pull up her posts. maybe you've spoken to her, don't know, but she knows about Igenex and the best tests.



  5. forjpj,

    sorry, you've been thru alot.

    could I ask why they recommended the T&A, you didn't mention sore throats or strep, does he get that? or is it mostly other illness that seems to trigger? Is Dr. L. the only doctor you've consulted with? may I ask why she recomended PEX first, will that be the only treatment right now?.... my son is quite thin and Dr. L. commented on that as well. my son is mostly tics and some ocd. does your son have/had any tics?



  6. good evening all.......since its a slow night, ................. just curious......


    Does anyone here know....


    "What lies in the shadow of the statue?"........................





    (.................. just wondering if anyone here shares my "other" obsession........ :lol:




  7. okay I watched the youtube video.............


    teary eyed again!!!


    He was actually cute, no big deal at all. I think Neil PatricK Harris asked him that because it was on his application, it was already known, it didn't sound rude. I don't think his tics were all that noticeable at all, he's older and I bet he has some good control over it in public.


    He's going to Hollywood! :) so when he is on camera again, I think I'll point out to my son that "look, see, there's a man (boy, lol) who has a facial tic"........it'll be fine.


    I told him today that I worked as a lunch monitor at one of the grammar schools (not his) and there was a boy in the fifth grade who had a facial/neck type tic. It wasn't that noticeable, but as we moms know, we can spot it a mile away. this child was hanging with his friends and having fun and I'm sure no one was the wiser. I explained it, because he is really down on himself and thinks he is the only one.


    thanks for the discussion, and glad to be a part of it.



  8. Maybe we should have a thread labled, "CONFESSIONS" I know I have a lot.


    I thought I would share this: My oldest dd last summer was working on a college essay that had to be about someone who impacted her with some life changing experience.


    She titled it, "Two People and One Disorder" her essay was so profound to me because I was able to read how my non-TS child witnessed the physical aspect and emotional aspect of Tourettes.


    She is so personally proud of her brother who in her eyes, silently accepted his suffering. She saw me as an emotional rollercoaster, but watched me pick myself up. She listed a litany of accomplishments her brother and myself had to overcome to unlock the shackles that kept us socially awkward.


    It was a beautiful essay and I was so proud of her that 4 years ago at 14yo she was able to see how two people she loved suffer, one physically the other emotionally.


    She ended her essay with, "Let his light shine." To honer her brother's accomplishments.





    aww, CP...I was running out the door before so wanted to get my reply in...I just re-read this and oh...I teared up at the second to last paragraph......


    just kind of brought it all back....I remember well your first months here.....we've weathered alot......


    Faith :)

  9. oh Cheri, I know, but we've been down this discussion before.


    I know, I probably should have thought better, but I just had to think for a minute what my son might think. you are right, he sometimes says to me, why do I have to be the only one who has tics. I suppose it would be a good way to show him that others do. but I like to be prepared on that. if we were watching and all of a sudden, there it was, I might have been taken off guard. just hearing it the morning after made me wonder how they presented it, and I hope NPH didn't say "whoa nelly, what do you have tourettes man!"...I'm sure he didn't, but I could just see myself getting nervous there. We have alot going on right now, with my son now knowing about the word tics and OCD. (sorry, we havn't gotten to 'tourettes' yet). today we start ERP therapy for his OCD, so alot for him to handle right now, being almost 11. And funny, I know he would like to be a singer (altho I don't think he can sing a tune, lol, he won't do it in front of me)....


    I just want him to think its no big deal for people, don't want him to see it being pointed out like it did on AI. maybe I'll find it on youtube and view it first and see if its something he should see. Now I'm thinking, Oh God, I hope kids at school didn't see that and will say "hey, the guy on American Idol does what you do, you must have Tourettes".....that wouldn't be good right now.


    But I am working on this. He told me recently "mom,I hope you don't mind,but I told xxxx (his friend) about my tics". which I found puzzling, because I'm sure his friend realizes he has twitches. but it was cute, because these two were kind of telling each other about their issues, and were comfortable confiding in each other. his freind is kind of an impulsive ADHD type, and so does therapy for that, so they both were telling each othe raobut it. hey its a start, these kids are still young and at a vulnerable age.


    what were the tics of the singer on AI?




  10. how long was he on the azith when you saw ramp up of symtoms? did you continue anyway, or switch? or take him off?


    I havn't seen any allergic reactions, except some possible itchiness, which I couldn't pinpoint if it was related to the abx or a habit of my son to itch his head and his heels.


    I felt that a month of augmentin didn't do anything remarkable, and when on azith for about two weeks, I felt my sons vocals were dramatically increased, especially one particular day after not having a pill for two days (in between scripts) and then when I gave the next pill, it was very obvious. I decided to stop until I have some other things figured out. since we are not ones to get strep here, I'm still unsure what the abx was doing (or not doing) for him. if he got infections alot or even at all, I'd be inclined to try something else right away, but since he doesn't (or doesn't seem to, or we have no proof, and believe me, I've tried to find it), as I said, just waiting for other results to come in and also may be having tonsils out in a few weeks due to mostly large tonsils/sleep apnea.



  11. jewlz, hello and welcome,

    I don't know too much about the meds, but just wondering how long he was on the clonodine? if it made him too sleepy, could you have reduced it or just give it at night?


    As far as the meds for ADHD, unfortunately the stimulants are not really good for those with tics, and I'm surprised the doctor prescribed that if he knows your son has these tics. perhaps he feels the clonodine will take care of that, but you are right to be concerned.


    Could you give a little more about your son's onset of tics? all these came on in the same time period? none before this? was he ill in the month or so before this started? have you looked into PANDAS? this is when strep infection is thought to bring on sudden tics,ocd or other behaviors in certain predisposed individuals.


    Its worth a try to clean up the gunk in his diet, eliminate caffeine, artificial colors/flavors, sodas, high fructose corn syrup, msg. do the best you can, you might see a good difference. you can look into different vitamins and supplements. a good start is magnesium, which kids with tourettes seem to need, and it is calming so good for adhd as well. unfortunately its all trial and error, so you'll have to find what works for your child. read alot and ask alot of questions.



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