romiaary

I was searching Google under a topic and an old write in popped up from a poster on this sight from 2004. I don't know if this poster is still around, but her post was eerily similar to my son's story. Right down to the premature week he was born and the age of tic onset, seven months. If this poster, ntbowen, is still here, would you mind if I asked if there were any recent finding on your son and what doc you are using at Duke. Believe it or not I live about 25 minutes from there.

I am having my son tested for pyroluria and was hoping that some people have used a place that they consider reputable. I contacted a place called Brightspot and they seemed nice, but I would love to know of places that others have used and have a good reputation rather than just picking any old place. My son has so many of the symptoms, even those that I have seen listed as much less common. It's the one illness that I've seen that fits him to a tee and I've been looking for so many years.

Thanks again for other posts to my message yesterday. I have done research in the past and don't know why I never stmbled upon the topic of pyroluria. It is interesting because my sons have many of the symptoms including being told in the past that one had a low zinc level. I want to have the testing done. Has anyone had a good place they can recall having this done? Has anyone had success if they were found to have it?

I will be looking into that. The thing is, he doesn't fit the tourettes diagnosis. He's never had vocal tics, the tics he does have never seem to change much or come and go. He doesn't seem to have any particular foods that seems to set it off. He's never strung them together or any of the typical things. Thanks for the suggestion and reply.

I'm not sure I,m doing this right either. I posted by going to Torrets and tics and it has an option to post new topic. After I wrote my stuff, I pushed add post. Yes we have seen more than one neurologist and he has them baffled. Find one that you're comfortable with and research everything they tell you. Don't go on blind faith in them We have been bitten by that since my kids have other issues and we've taken bad advice just because a doctor has given it to us. Good luck.

I just came upon this web site and decided to see if anyone has heard of my situation. I have 2 sons with tics. MY father and aunt and cousin also have them. My older 10yr old has very mild ones that only come on with stress and are not bothersome. My 7yr old has has tics that started at 7 months old. No doctor that I have talked to has ever heard of this although it is doccumented by our pediatrician. All of his tics through the years have had some involvement with his neck.. Still the original one where he continually drops his head up and down to the left side is present. That also confuses doctors. It has never gone away and the other tics that have occured are all similar. Has anyone heard of this?. My son has complained about them so we have tried several meds including an Anti depressent, Straterra and Tenex. The problem is that we have certain mood disorders in the family and these drugs are known to cause problems in families with mood disorders. There is even a warning on the FDA about this and Tenex. He has had poor reactions to all of these meds. I know there are alternative treatments, which I am open to, but I would really like to know if anyone has encountered problems this young and with such little changes. Any responses would be appreciated.