chap

HIYA There is a great book called 'Fed up with ADHD' by Sue Dengate, an Australian author that explains how to do an elimination diet for children. I think she has a website also, might be worth googling. Good luck.

If by any chance anyone knows of a reliable website selling these with international delivery available I would love to know! thanks chap

hI, how did you get on? Im interested in finding a reliable test available to purchase online also......

HI, On this topic, has anyone had any luck with spray on Magnesium products? My dd cant tolerate magnesium either.....................

Wondering has anyone tried the Ketogenic diet for tic reduction?

hey firefly just wanted to say hi as a fellow antipodean! I can reccommend the Brad Cohen book its great. Also have you googled the aussie TS association? Its quite good. all the best chap

hiya rysmom, Thanks for sharing. I am due for a neuro appointment shortly and am considering clonodine . dd's tics have been severe in the past but I dont feel they are consistantly severe enough to warrent ongoing medication. It has been suggested to me that clonodine can be prescribed as a 'one off' ie: one dose to be given during a 'tic storm' then discontinued once the tics have decreased. What do you think about this (mom opinion!!) , do ya reckon it would work or do you feel your son needs the ongoing dose ?? Just to be clear Im not suggesting anything...Im asking! does anyone else have experience of giving a 'one off' dose?? thanks chap

hiya I would personally go with rice milk if I were you, over soy (due to the estrogen receptors found in soy). Good luck.

I've never heard of being diagnosed with both? As for the list above from TSA, my son definitely fits the bill, especially since it says it can disappear for months at a time. I read somewhere though, that the cut-off was 3 months? hiya I too thought there was a three month cut off????? My dd had a symptom free period for about 6mths a couple of years back......

we are in the same position. 3& 1/2 years of tics- six months tic free....... at the stage where I dont think it matters what its called!

right, thanks for that. Approach with caution!!

We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed. Hiya I also feel my dd gets worse when her tics are discussed in front of her/with her. Might be worth suggesting that the psych deals with the anxiety, and leaves disscussing the tic issue (unless your son brings it up of course!)........ Good luck

hiya Just an observation, it seems like lots of people are moving over to the PANDAs board. I like to read both, but was wondering how many of you out there categorically feel that they have TS rather then PANDA's? And what makes you feel that way? cheers

thanks, but we are in NZ

Hi Ibuprofen query: can anyone tell me, if ibuprofen is going to work how long would it take?? I had assumed it would work quickly (as it does with reducing fever) within 10-20 minutes.....is it the same for PANDAs symptoms? thanks

thanks ladies That encourages me to persevere with them, alhough there is no improvement so far! Still, we are not quite up to the reccommended dose yet. It is a big issue for me to get my daughter to take them, she can swallow them fine, its more of an attitude thing. Bribery has got us through so far, I only hope that she starts to see some positive effects shortly, to keep her motivated!

So hes been on them since August? Its great hes doing so well. Does he still have some tics? We are up to five now.....

vicki and others, Yes I will add her to the 'docs who helped' post if we have any luck at our appointment today. Thanks for your tip about ibuprofen too. It did seem to help the one time I tried it. What does that indicate? Strangley, her vocals are much, much decreased over the last two days despite using NO abs.........however the other symptoms (mood & hitting herself) remain only very slightly decreased. Is it plausible to think that during the worst part of the strep infection ( the first three days) the symptoms were worse, but as her natural immunity fought back (the next three days onwards) she improved? Or would most kids continue with the same level of symptoms until the Strep was resolved? We have always treated her as TS........ thanks

thanks wendy. I think youre right. i spoke to a paed today who said Zithromax is the way to go. I will see her in a couple of days and try and get a prescription, rather then bothering with the erythromycin. It is the first time I have dealt with a medical professional who had heard of PANDA's.

Really? Are you saying certain strains of 'strep' have a resistance? I thought they were both macrolides ....but I feel very much out of my depth and like I dont understand the majority of this medical stuff! I kind of just went along with my doctors advice- she wasnt happy to give Zithromax as its not used often here in NZ (so our bugs havent been 'exposed' to it) and apperently thats how they want to keep it. Its also not funded so would be the pricey option. So should I bother giving her the Erythromycin? I also have another question to put to other PANDA's moms and that is how do you determine that it is the antibiotic that is working as opposed to the natural wax and wane of Tourettes tics? thanks guys

thanks for your feedback. i have her up to four a day now (although the packet says it should be 10-14 for her age and bodyweight) but dont think I will be able to get her any higher as any kind of supplementation seems to give her cramps and frequent trips to the toilet....so its encouraging to know he has improved with the lower dose. Do you give him anything else?

hiya thanks for that EAMom went to doc today and got Erythromycin (EES) prescribed. Its only a two week course for now... it was reccommended to do 6.5mls twice daily, im working on the conversion to mgs....cant tell you off the top of my head. We are overseas so cant do the bloods. Its pretty much only tics, which is why I tend to consider it more TS then PANDA's but having said that in the previous month she has experienced lots of anxiety and bad moods (grumpy/shouting etc)- which I am not sure is connected or not....

Thankyou, thankyou all for your replies. The doctor may be receptive to the stronger abs so I am going to ask for Zithromax I think. (which I beleive is Azithromycin, is it not?) I wouldnt bother trying amox as weve already done it with no success. but I forgot to ask- HOW long should the course of ABs be for??? two weeks???three? longer? I vaguely remember someone posting that if there is going to be an improvement it would be within 48 hours?? She has had no long term success with any ab before as Ive always considered her symptoms to be more Tourettes, especially due to the genetic link. Where we are at the moment is that we feel trying ABs would be the ''lighter'' approach to trying a tic med such as clonodine or something, so Im willing to try even though its not conclusive that its PANDAs. The last three days all 3 of my kids are complaining of sore throats- and my youngest has a slight rash that a hospital paed said was probably related to the "VIRAL" infection that is causing his sore throat and raised glands. Incidentally the tics increased severly three days ago. It is not her first experience with tics- she was diagnosed at 4 years old (three years ago) and has had vocals off and on since then- but I cant bear the recent escalation and self harm. I would like to ask if it is typical for PANDAs kids to have such severe tics- Im referring to the hitting herself mainly-??? I will try ibruprofen today. Ta for that tip. thanks again all.....I feel so isolated with this.

Thanks for sharing! can I ask- are you still off milk? and do you avoid all sugars, such as fruit , Or is it just cane sugar?