chap

Hi there was wondering if anyone can help? My seven year old is currently experiencing extreme tics including hitting herself and constant vocals. I have given her some of the above supplements today but was wondering if anyone can tell me how long they take to kick in. The info on the packet says she should be taking between 10-14 capsules per day (for her bodyweight) but she is only able to take two at the moment. Also, she kicks up a huge stink about taking any form of meds, anyone had a brilliant incentive to get their kids on board?? thanks

Hi there Was wondering if anyone could help. I am having an extremley difficult time with my seven year old who is experiencing very severe tics, including constant vocals and hitting herself. I am going to my GP shortly to request an antibiotic in an attempt to calm things down as we cannot endure any more of this. We have previously tried a penicillin based ab with no effect. At the time someone on this board suggested the dose was not high enough, so this time I am going to request a higher dose and different type of antibiotic.......would it be best to go for zithromax or Keflex or something else? Can anyone suggest what the doseage should be? (doctors here in NZ have no idea about PANDAs) she weighs about 22kgs or 50lbs aprox. We have a history of TS in the family, so Im not sure if she is in fact TS or PANDAs , but want to try AB's before we look at what may be the enevitable....putting her on heavy duty tic meds. She is complaining of a sore throat. Her younger brother has raised glands, but no red throat. I would appreciate any feedback thanks

HI do you mind telling me what brand glycine you use? We started the B6 five days ago but not in conjunction with Glycine...prehaps thats why I havent seen any change. cheers

Hey Michael, This is the article I read about it: http://healthy-family.org/caryn/486/corn-s...tens-our-food/2 I was quite surprised to discover Sorbitol was listed. This is a key ingredient in lots of toothpastes.

hey faith yep, I read up on corn stuff and have got a better understanding now. I gave my girl a throat lozenge last night that had corn sugar in it and noticed an immediate increase in tics......so another ingrediant for me to watch for! Sorry i cant be of much help re the ALC.......she took one 500mg tab per day for about 25 days. Her tics were already at their peak when we commenced was taking the ALC (they couldn't of got much worse!), but no, I certainly didnt feel that the ALC made them increase. In saying that, Im not convinced that it decreased them either. I'd definantly use it again if there is another major wax, but not with any great conviction! Shes off it now as things have calmed down (although still there, the frequency is more managable). good luck.

chap, Could you update what happened with Bontech vits? Have you given it another try? Faith Hey Faith, Ive just been reading your most recent post, and really feel for you. In July I gave Acetyl L Cartinine a go with my daughter following advice off this board, because of a vocal that had lasted +30 days of chronic waxing. Its still there, but much reduced now, but to tell the truth I have no idea if it was the cartinine that calmed it down, or just luck....!? We stopped the ALC when the tics reduced. My 7 yr old has had vocals since age 4. Basically what happened with the BG vits is I gave them a try. She took one tablet per day (I was trying to work her up to the full dose) but her little tum couldnt seem to handle it. Similarly, every time I try magnesium , even in low doses, she gets tummy cramps and lots of visits to the toilet! I gave up after about 4 days. Its interesting what you said about corn syrup-would an ingrediant listed as 'corn sugar' have the same effect do you think? good luck!

hiya This is a bit off the topic, but is a question about the Bonnie Grimaldi supplements Carolyn mentioned in the above post. I recently tried my dd on Bonnies TS plus range, but had to take her off them after just a couple of days due to stomach cramps and loose bowel motions......I was easing her onto them and she was only on one capsule a day (my intention was to increase gradually up to a dose of 10 capsules) ....was wondering is this was an issue for anyone else with them? Im a bit gutted to have to open my pantry and see them sitting there every morning, not being used! cheers

hi thanks for all your replies everyone. Nancy and Chemar, was wondering if you could help on another matter... Im quite keen to try a treatment schedule similar to the one you used Chemar. Ive just purchased a supplement online- I wanted to increase dd's magnesium intake to see if that would help with the leg pain and the tics. But the product Ive bought has got something call ketogluterate in it. Ive tried investigating what this is, but to be honest Im no scientist and Im a bit confused by some of the stuff Ive come across. the only thing I know about glutemate is to avoid MSG! Also Ive found it really hard to get a taurine supplement (Im in NZ). There is some taurine in this supplement Ive just purchased but Im not sure if its enough for her as its only 'bound' to the magnesium. thanks

hi plparke good luck with this, I really identify with difficultly of approaching this sensitive topic with your child! Im sure you'll get some good responses from this board like bonnie Ive only talked in terms of tics. I didnt go into lots of details about Tourettes or what the future might hold as I didnt want to overwhelm her. I did the whole "lots of kids are different, some have glasses like..., some are in wheelchairs , you have tics" conversation. Also, what seemed to help most was when we told her that sometimes her dad had tics. best of luck...

((((Thanks maryanne))))

If you haven't seen a Ped Rheumy it would be a good idea to see one and rule out Rheumatic Fever & Rheumatoid Arthritis which of course are also caused by strep. One on the main symptoms of RF is the inability to walk due to severe pain the legs. I've also recently learned that joint pain is a common symptom amoung individuals with Primary Immune Deficiencies--which we now know is a disease that our dd has in addition to the Pandas. thanks Shaes mom, But if she had Rheumatic Fever wouldnt we know about it? Is that not quite a full on illness? Or not? what led you to the diagnosis of PID? Susan Ill be very interested in your results.... And char, so Im not the only one up in the middle of the night administering heat bags and paracetmol!!!! thanks so much everyone for your imput. chap

Hi Faith thanks for your reply. Nope, its real pain, not restless legs. rolling around on the floor pain! I know shes not putting it on too, because on the occasions that we've given paracetmol shes much improved in 10minutes. chap

hiya I am still trying to piece things together in regards to my daughter, and still unsure as to whether she fits into the category of pandas or tourettes. At the advice of forum members Ive taken a look at the PANDAs Network webpage and was suprised to see under the Family History table (of case studies) that many of PANDAs children have a history of leg pain. Can anyone shed some light on this for me? My little girl has had leg pain at night for as long as I can remember, often waking at night between 3 -4 times per week in horrendous pain with it. We have never connected it with the tics, but have had other tests (xrays,GP & paed appointments) to try and resolve it (we've always just been told that its probably 'growing pains') thanks

opps! Just realised this should really be on the PANDA's board! Sorry folks....

hiya I am still trying to piece things together in regards to my daughter, and still unsure as to whether she fits into the category of pandas or tourettes. At the advice of forum members Ive taken a look at the PANDAs Network webpage and was suprised to see under the Family History table (of case studies) that many of PANDAs children have a history of leg pain. Can anyone shed some light on this for me? My little girl has had leg pain at night for as long as I can remember, often waking at night between 3 -4 times per week in horrendous pain with it. We have never connected it with the tics, but have had other tests (xrays,GP & paed appointments) to try and resolve it (we've always just been told that its probably 'growing pains') thanks

chap~ what is a "gluten intolerence test"? hey jees mom im a bit confused about all the gluten tests! I think what I meant was that I suspect he was tested for TTG (negative) but that an IgG was never done. Interesting that your GP said the IgA was the important one, as I thought that was the one that would not pick up gluten sensitivity UNLESS cealiacs was present? How are you going with the g/f diet anyway? good luck chap

hi caryn ive just read your story, can you tell me what exactly a 'white blood cell food intolerance test' is? It is my daughter who has TS, but earlier this year my younger son was tested for celiacs due to failure to put on weight. It came back negitive, but I suspect a gluten INTOLERANCE test was never done. My dd has often complained of a sore tummy, but this has decreased quite signigicantly since we cut out dairy. Did you organise your tests through Dr rodney Ford? thanks

hey jees mom thanks for your reply. We've tried to go gluten free, but its just SO difficult. Shes a fussy eater , and we already have so many other restrictions (no MSG, dairy, colours, preservatives) that adding gluten to the mix has been a nightmare. Ive tried (at great expense!)four different brands of g/f breads and she wont eat any of them. Ive tried making my own, but they dont taste great. I dont know about where you are, but here, g/f choices (premade) are reasonably restricted and extremely pricey. She has been starving while on the diet, so Ive had to resort to just trying to reduce it as much as possible, rather then completely eliminating it. Im not sure if that defeats the purpose? Yes, we think going Dairy free was helpful, weve been doing it for two years, but theres always so many variables, that Im never quite sure whats working and whats not. Why are you planning to reintroduce the dairy after 6wks? Is it just to test if its been effective/ cheers

hiya myrose im newish to this forum so, sorry I dont have any suggestions for you, just wanted to say that I know how you feel getting tired of it all....theres always so many variables its hard to work out whats making a difference and whats not. No one has ever mentioned topamax to me as an option, I'd never heard of it before I read about it on this forum....I could scream out loud at doctors who have no knowledge whatsoever of TS, and who have even never heard of pandas!!!!!!!!!!!!!!!!!!!! hang in there, doing something (even if it dosent seem to work) is better then standing by and letting things just 'happen', Im sure as she gets older she will come to appreciate all your efforts, chap

Hiya thankyou all so much for your replies. Colleen, yes I am also concerned that it was a very low dose that we were given, but think that is because our doc is used to prescribing penicillin for stuff other then tics. She (and I) really have no knowledge of what the best med or doseages would be. Ive forgotten her weight off the top of my head but its in an earlier post. The tics have calmed right down now, although they are still there a bit. It was the longest period of ticcing we've had, probably lasting about 35 days (I stopped counting!) her weight is aprox 42lbs (or 21kgs as we say over here!)

forgot to say, we are also doing epsom salts baths...

Hi Carolyn Thanks so much for your reply, wow it was really comprehensive! Im going to have a good look at your plans as soon as poss! The only thing she currently takes is Acetyl L Cartinine , which we started a week ago, on the advice of others on this forum. She is on a 500mg per day, which I worry is a lot for her as she is only slight (weighs about 46lbs). I note that you refer to it as NAC (N-Acetyl-L-Cysteine)- is that the same thing? We are trying our very hardest with her diet. We cut out all dairy about 2 years ago, no MSG, no preservos or artifical colours, mainly organic food. We have also tried to elminate gluten as much as possible in the last two weeks. Finally, in the last 3 days, the tics have subsided (although not completely) but who knows why.....a wane? the cartinine...? gluten...? luck??!! It was the longest wax we have ever had lasting over 30 days. Its amazing that your son is doing so well, but isnt it hard to get him to take all those supplements? I am in awe of you both.

Hiya thankyou all so much for your replies. Colleen, yes I am also concerned that it was a very low dose that we were given, but think that is because our doc is used to prescribing penicillin for stuff other then tics. She (and I) really have no knowledge of what the best med or doseages would be. Ive forgotten her weight off the top of my head but its in an earlier post. The tics have calmed right down now, although they are still there a bit. It was the longest period of ticcing we've had, probably lasting about 35 days (I stopped counting!)

hiya compelled to post, as Ive just spent half an hour alternatley conjoling/threatening my child trying to get her to take her third to last dose of penicillin!!!! Im ready to abandon the antibiotics due to all the dramas! Im always amazed reading through these posts, and the ones on the Tourettes site, that so many mothers manage to have their children on MULTIPLE vitamins/meds.....its a battle for me to get anything down my girl!! You are amazing!LOL I was wondering if the Penicillin (Phenoxymethyl 125mg- 5mls two times a day) was to work how long would it take to see a reduction in tics....there was definantly no change within 48 hours but now that we are several days down the track the tics seem less frequent, although still hanging about! The strep test was negitive but when I checked with the nurse they said it was only cultured for 48hrs, and her brothers and I have had a (skin) strep infection recently. She is not experiencing all the other associated symptoms that greeneyes talked of, but she certainly has seperation anxiety.... so I will try and finish the course of antibiotics. Does the fact that her father have some minor tics mean that it is less likely to be pandas? Thanks!