Submitted by Cheryl (not verified) on Wed, 08/13/2008 - 8:46am.
Hi Sue,
I read your email & I live in Long Island and have been for two years trying to figure out what is going on with my now 6 year old son. I would like to know what your son is being treated with. My son was diagnoised with ADHD & OCD and we just started treating him with meds about 3 months ago. I am still so nervous that I'm not doing the right thing. Last year when we went to the neurologist he had blood work done and his ASO titers were 478. No body was concerned and said that he was a carrier for strep throat. I had done my own research and found PANDAS and my son showed all of the signs but the doctors didn't know about this and said this was not it. We did not use medication for the ADHD & OCD because I just felt he was to young. Until, three months ago when the symtoms got worse & i can never figure out why some weeks are great and others are just so bad. He was unable to focus at school and I just felt maybe we should try the medications. So that is what I did. He started having headaches and frequent urination. I couldn't believe how much he kept going and he said he kept feeling like he had to go. I took him to the peditrican to make sure he didn't have an infection and also mentioned the headaches. She said no infections and to mention to the neurologist about the headaches. Anyway, I went back to the neurologist to go over how the last three months were on the medications and we did see a change but not a huge one. The anxiety was a little better but still had weird behaviors. She did some bloodwork and I told her about PANDAS again and she said we would retest the ASO Titers. Well, I received a phone call yesterday that the ASO Titers were now at 1178. I'm not sure what to do. They do not know anything about PANDAS and I feel that this is what my son has and I'm not sure if I'm giving him the right medications. He has not been on any antibodotic and should he be? I've been struggling with this for two years and it is very frustrating. I would love to try a new approach and I saw that you lived in Long Island and knew of a doctor. I also live in LI. If you have any advise, I would love to hear it. Thanks for listening.
Cheryl
»
Reply
Search Serendip
Narrative is determined not by a desire to narrate
but by a desire to exchange. (Roland Barthes, S/Z)
Pandas
Hi Sue,
I read your email & I live in Long Island and have been for two years trying to figure out what is going on with my now 6 year old son. I would like to know what your son is being treated with. My son was diagnoised with ADHD & OCD and we just started treating him with meds about 3 months ago. I am still so nervous that I'm not doing the right thing. Last year when we went to the neurologist he had blood work done and his ASO titers were 478. No body was concerned and said that he was a carrier for strep throat. I had done my own research and found PANDAS and my son showed all of the signs but the doctors didn't know about this and said this was not it. We did not use medication for the ADHD & OCD because I just felt he was to young. Until, three months ago when the symtoms got worse & i can never figure out why some weeks are great and others are just so bad. He was unable to focus at school and I just felt maybe we should try the medications. So that is what I did. He started having headaches and frequent urination. I couldn't believe how much he kept going and he said he kept feeling like he had to go. I took him to the peditrican to make sure he didn't have an infection and also mentioned the headaches. She said no infections and to mention to the neurologist about the headaches. Anyway, I went back to the neurologist to go over how the last three months were on the medications and we did see a change but not a huge one. The anxiety was a little better but still had weird behaviors. She did some bloodwork and I told her about PANDAS again and she said we would retest the ASO Titers. Well, I received a phone call yesterday that the ASO Titers were now at 1178. I'm not sure what to do. They do not know anything about PANDAS and I feel that this is what my son has and I'm not sure if I'm giving him the right medications. He has not been on any antibodotic and should he be? I've been struggling with this for two years and it is very frustrating. I would love to try a new approach and I saw that you lived in Long Island and knew of a doctor. I also live in LI. If you have any advise, I would love to hear it. Thanks for listening.
Cheryl