melanie

Thanks for your response. You actually alerted me to the connection between B6 and salicylates. I have taken him off the B6 (on 30mg of P-5-P, which I think is high for his age). I had him off it entirely since beginning the Feingold diet in February and put him back on it 2 weeks ago. I think there is a time lag sometimes where some initially see a benefit and then have an increase in tics. If his tics go back down I will assume B6 did play a role as this would be the 2nd time we had that pattern. Of course, if I start another supplement I may not know what was the cause of any change???? He has been off the B6 for 2 days, no improvement, maybe even slightly worse? Thanks again for your help! Wait so B6 is bad for tics? Im confused again I thought it was important especially for verbal tics

Dannys on 5mg lexapro and ticcccing more i want to get him off awaiting PSY CALL BACK !! anyone have simular situation?

Hi my neurologist is the head od neuro at Columbia Presp in NY she was so sure that there no evidence that it will help but his psych from UMDNJ says she she will if neuro seems to think its ok anyway did u start? That didnt sound right like i was trumping mds sorry thats not the way i meant it to sound

Hi my neurologist is the head od neuro at Columbia Presp in NY she was so sure that there no evidence that it will help but his psych from UMDNJ says she she will if neuro seems to think its ok anyway did u start?

Ok does anyone have any research on topamax and tics? Neurologist said theres none !!! I need help

Does your son have anyother DX aside from tics/tourettes? danny has ASD and tourettes/Pandas (better now)did u try the patch clonidine?Im not sure if hes not sleeping at night with the tenex or if the daytime dose is makeing him tired I put a call into the neurologist to ask her that question ahe will call me tomorrow I hope. Did the clonidine help at all? does your child have verbal or motor tics ? Im nott sure what to do ..I hate this!!!!

Hes going to go to 250 1xper wk azith I think I want to try the topamax I feel like i need to try everything give it a shot ya know He went to neurofeedback again today 3x so far the dr who does it said he seems calmer hes not hyper but.. he seems ok nothing better nothing worse he was ticcing more this week than last I think its either the vit or the lexapro i cut the vit C 1/2 we will see what happens How much does your child weigh? Dan is 130 Im afraid he wont eat on this the tenex is bad enough I want to come off of that too

Hi dannys Psy said she would consider topamax for him 25mg we will discuss it more on monday(ill have the weekend to research the heck out of it) SHe said she doesnt use it much and only found 1 atticle about 2 people who it had success I guess she doesnt spend alot of time on this site anyway she commentethat it nhas a mental dulling problem is that with everyone? Danny has asd also does any of the kids using it have a duel dx? aLSO His D>A>N>dr wants to try the azit 1x per week He said he went to a confrence last weekend and thats the protocol now ? I trust him but I trust you guys too ...

Hi Pat Dannys 15. Im at work now, but Yes the D.A.N. dr did blood test determining levels.said he needed D and C its either 1000 C and 2000 D or 1000D and 2000 C ill look when I get home hes about 135lbs thanks for that info about the waxing on the C Ill keep an eye hope thats all it is

Hi Pat we do accupuncture not chiropract Is there a good link to read about that? thought of doing it will do it Rutgers University Phd program has a Tourettes counseling clinic They do alot of HRT with + results My son has verbal tics that are pretty bad Ill try anything!!!

I have noticed an increasein dannys tics today the dan dr added D and C can this cause tics?

Im going to try this too!! Anyone have any positive or negitive feedback?

Hi I have some questions about my sons future treatment of Pandas currently hes being treated with 250 mg azith and nystatin (I want to add advil) tenex buspar and lexapro mag taurate,inostol,taurine,zinc,B6,lcarnitine 15 yr old boy also Aspergers OCD Now the questions 1.Should I add the advil? 2.Should I include Dr.K do I have to go to Chicago?Is it worth it? Or should I keep my dr? Do I just pay a certain ammount of money and then he does something? I have written to him and he does respond but what do I ask him to do 3.I have never done this steriod burst thing only know what ive read 4.He did do iv when he was little, not for pandas,we didnt know about that then we did it because he was always sick and a dr we were using suggested gamaglob iv to help his immune system .He did have ear tubes and tonsill and adnoids removed when he was 4 . 5.I know IV seems to help alot of children most younger how do i get my dr to do this? Shoul I ? I want to do as much as I can Ps. I didnt mention his dr wants to take him off of the azith neg strep test !! I know I know !! Thanks for taking the time to help my son and our family Melanie

He has tried sooo many meds over the years most recent past 2 yrs hes been on Depakote,ABILIFY,Luvox,Seraquel(sp),Lamictal,Trileptial Ive exausted that route he had an allergic reaction to lamicatal and trileptial the others made things worse I think .Things didnt get better untill the antibiotics started and now hes on tenex,buspar,nystatin,zithro,lexaproand various supps also were doing biofeedback His dan dr wants to take him off the zith I called him today to discuss this Im not sure if the abilify made the tics worse I think they were pretty bad and thats why we gave it to him in the first place .He didnt get a tourettes dx untill after we started them but he had soooo many anger issues and when he was on the meds he coulndnt get"his words out" brain freeze Does anyones insurance give them a hard time with long term antibiotics?

Why did your MD choose Celexa over Lexapro do u know my MD insisted on Lexapro I thought Celexa was better but why would they listen to me

Sometimes I think it cant get worse and well now he wont eat he seems to stare at his food and its like a chore to eat even his favorites rice chicken terracki(sp) we have been on gfwf diet for 2 wks but some of the foods are the same . Ok and the dog has a cold she had one earlier this year mucus pouring out of her nose(sorry) I called the vet awaiiting a call back hope it not something horrible back to school tomorrow keep fingers crossed

Hi I rely so much on what has worked for your child I try to use many of the supplements you recomend My question is what therapies have you tried? Have you done anything else? Has anyone tried anything like the biofeedback?

Wanted to say we had our 2nd session of neurofeedback tonight and he seems pretty calm I hope this helps its all very interesting Ill keep you posted

OMG your story is the same as mine we just stoppes some meds and things did get better Hes on tenex,buspar and lexapro5mg I think the buspar was soooo helpful but it takes a while to work maybe ask the PSY to try that its redic that they will perscribe so much and not an antibiotic unreal how old is your child mine is 15

Hi yes we see an improvement with behavior and tics but not completely He seems to understand PANDAS but who knows I still have some zith left Im going to give him one every other day and speak with him He had the appointment and my husband took him I couldnt get out of work so my husband didnt question anything (of course) I hope this sosent get screwed up also hes been saying he hears me stuttering when I ytalk and then he tics (curses) any info on that?

Here we go again dan had his negitive strep test and DAN dr wants him off the zith hes been doing better and im scared I still have some more Im hording it and I want to keep him on it what do I do ?

I would love to be included The issue is my son is 15 Im confused first I was told that it cant be because of his age and now hes being treated for pandas blood test neg for strep and then he gets strep also since hes been on the zith 2 months his ears are so clean no wax at all his ears dont hurt maybe the infection is in his ears?

Im going to pick it up now let me now the dosage hes 5'8 130 lbs

I thought dr k didnt think that iv was good for 13yr olds? Im confused did you find it worth while my son is 15