robinjax

Dearest Chemar - Here is wishing you an especially great 2007. You are such an inspiration and although I haven't been on this board very long, it is obvious that you are so involved and such a vital aspect of this message board (it seems such a trivial term for the impact it has for so many people!). Anyway, it is 9:30 and my son is running up and down the stairs yelling so I must go and try to get him to bed (not likely in the next 3 hours). God Bless You All and HAPPY 2007!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank You all for your suggestions and advice. I read all the posts and just have not had a chance to respond. Unfortunately my son's tics have been pretty bad since Christmas but I did start the epsom salt baths and am still trying to make a gradual diet change. I haven't seen a difference but I know there is no quick fix and it takes time. Unfortunately, patience is not a virtue that I possess, which is part of the frustration with my son. I know this is one of my true weaknesses and I have failed my son in that respect, sometimes my frustration comes out with me yelling at him and I am so ashamed of that immense character flaw. I have heard people indicate that there is an actual PANDAS test but the specialist I went to see at Shands said that there was not an actual PANDAS test, just "studies", can someone advise me on this? From everything I have read, his symptoms are identical to so many of the case studies I have read on PANDAS. Hope you all have a great NEW YEAR and a great 2007. Again thanks for all your support, advice, and being a soundboard for me and everybody else on this board.

Thank You all for your respones, I am really excited to have such a helpful forum / group of people that understand what we are going through. I must say I am amazed that this is the most informative and most supportive group I have found, why is there so much resistance in the medical community? I guess this is a rhetorical question as they are so willing to write a prescription to keep our kids subdued, really sad I must say but God bless you all. I am embarrased to say the food he eats are mac and cheese, PB and J, granola bars, grilled cheese, hot dogs. I know I know, we need to see if he is allergic to the dairy but he really won't eat much of anything, very particular and we are TRYING . I bought the epsom salts to try the bath time (which he loves). I should also mention that we have taken in a 9 year old girl 2 years ago and they compete for attention which probably contributes to the stress/tics but how do you combat that ??? If anyone could be specific about foods in terms of name brands, it would be much appreciated. I have found the posts very helpful but I am so ignorant, I am unsure of where to start with grocery shopping. Also I know it is a touchy subject but if anyone could suggest a way to go about finding a doctor in our area (Florida) that is receptive to this kind of treatment, again it would be much appreciated. Again, thank you all, you are an inspiration to a truly depressed father who is distraught and scared for my son.

My son developed tics a couple of weeks before his 4th birthday and they have come and gone over thepast year. It started with eyes rolling back in the head the day he was hit in the head with a tire swing. The next few days the eye rolling moved on to shoulder shrugging to throat clearing all within a 2 week period. After the first couple of days, we took him to the ER because it seemed so abnormal and they did blood tests, cat scans, etc. and were told nothing was wrong. The last year we have seen neurologists, child psycologists, etc etc and have gotten nowhere. One children's hospital had a PANDAS test done but it was part of a PANDAS study not necessarily a test (as they told us). The doctor we spoke to with the most knowledge (and interest) said that a TS diagnosis could not be made until he has one particular tic for at least a year (non stop) which was actually encouraging because they(tics) changed at such a rapid pace but after reading this forum, that seems to be untrue. I have read this forum for some time now and have been encouraged but at the same time, I feel absolutely helpless because I don't know where to start with identifying tic triggers. My wife and I both work 40+ hours a week and are just worn out with work and then trying to keep our son calm and in bed by midnight. He has taken quite a bit of dimetapp to try and help a runny nose (that develops into a tic of constant sniffling) and this is probably doing more harm than good but we don't know what to do to get him to bed and to calm his tics that get rampant when he gets excited. I want to try the magnesium supplements but he has become very astute at identifying medicine mixed in with juice or food. Most of the people on this board seem to have older kids that will change their diet or take pills (unwittingly sometimes) but I have a kid that only eats about 4 things and will not try any new foods (throws an absolute tantrum to the point of tears) and will not take medicine that isn't grape dimetapp . I don't even know where to begin with this process, although I have bought Sheila's book so I guess that is a start. I hate to admit the fact that I cry every night thinking about what his future may hold since kids in his pre-k class are already making fun of him ("Daddy nobody will be my friend because I make noises" ). It consumes my thoughts every day and I cannot focus on anything these days...