Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Hi all, wanted to update you on my daughter kendall who is 7 1/2. She has been diagnosed with PANDAS OCD by Dr. Tinneman at Stanford. It is a relief to finally have that dx. Prior to that for 20 mths were trying every medication and nothing worked. Looking back through her medical history i see 4 times she could have had undiagnodsed strep. Symptoms of high fever, nausea, sore throat, headache. Since her last strep infection in Oct. which took about 4 months for the extreme symptoms to DISAPPEAR she has had NO OCD symptoms. It is amazing. I feel that PANDAS OCD is often the cause of sudden onset OCD in kids and is often not diagnosed. The meds she is on are Buspar 60mg a day and 18mg a dayConcerta for ADHD, we finished weaning her off Risperdal today, which took a few months to do. This child has been on heavy duty meds, antipsychotics, and mood stabilizers. There is hope and light at the end of the tunnel.It took me this long to " discover " the answer and have her diagnosis re confirmed by a specialist. if she gets strep again we will try to get her in to the NIMH for their plasma exchange trials. Oh, she is also on Amoxicillin 500mg 1x day to help prevent strep, it is up in the air if it works, but patents in a trial for prophalitic dosing felt it decreased depression and anxiety in their children. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 She may develope an imunity to the Amoxicillin but it is a risk i am willing to take. There alot of other drugs we can use if she developes an immunity. The quality of her life was poor, she was basically non-functioning 40-50% of the last 20mths.It was not a difficult decision to make, I actually pushed for it, after reading about the trials and the inconclusive results. Thanks for your encouragement. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Since her last strep infection in Oct. which took about 4 months for the extreme symptoms to DISAPPEAR she has had NO OCD symptoms. It is amazing. I feel that PANDAS OCD is often the cause of sudden onset OCD in kids and is often not diagnosed. Hey a, I know it IS such a relief to have finally pinned down that it's PANDAS. Please keep us updated on how it goes! I have one question though - won't she build up an immunity against the amoxicillin, and if so, will they just switch to something else? > Hi all, wanted to update you on my daughter kendall who is 7 1/2. She has > been diagnosed with PANDAS OCD by Dr. Tinneman at Stanford. It is a relief to > finally have that dx. Prior to that for 20 mths were trying every medication > and nothing worked. Looking back through her medical history i see 4 times > she could have had undiagnodsed strep. Symptoms of high fever, nausea, sore > throat, headache. The meds she is on are Buspar 60mg a day > and 18mg a dayConcerta for ADHD, we finished weaning her off Risperdal today, > which took a few months to do. This child has been on heavy duty meds, > antipsychotics, and mood stabilizers. There is hope and light at the end of > the tunnel.It took me this long to " discover " the answer and have her > diagnosis re confirmed by a specialist. if she gets strep again we will try > to get her in to the NIMH for their plasma exchange trials. Oh, she is also > on Amoxicillin 500mg 1x day to help prevent strep, it is up in the air if it > works, but patents in a trial for prophalitic dosing felt it decreased > depression and anxiety in their children. a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Thanks for the update. Our son has never tested for strep but there have been quite a few trips to the Dr. thinking he might have it. He was quite ill with the flu a couple of weeks ago and he could hardly swallow. Still no positive strep culture. I am gald you got the dx for your daughter. It is a big piece of the puzzle. Good luck with her treatment. Vivian --- CroninPE@... wrote: > Hi all, wanted to update you on my daughter kendall > who is 7 1/2. She has > been diagnosed with PANDAS OCD by Dr. Tinneman at > Stanford. It is a relief to > finally have that dx. Prior to that for 20 mths were > trying every medication > and nothing worked. Looking back through her medical > history i see 4 times > she could have had undiagnodsed strep. Symptoms of > high fever, nausea, sore > throat, headache. Since her last strep infection in > Oct. which took about 4 > months for the extreme symptoms to DISAPPEAR she has > had NO OCD symptoms. It > is amazing. I feel that PANDAS OCD is often the > cause of sudden onset OCD in > kids and is often not diagnosed. The meds she is on > are Buspar 60mg a day > and 18mg a dayConcerta for ADHD, we finished weaning > her off Risperdal today, > which took a few months to do. This child has been > on heavy duty meds, > antipsychotics, and mood stabilizers. There is hope > and light at the end of > the tunnel.It took me this long to " discover " the > answer and have her > diagnosis re confirmed by a specialist. if she gets > strep again we will try > to get her in to the NIMH for their plasma exchange > trials. Oh, she is also > on Amoxicillin 500mg 1x day to help prevent strep, > it is up in the air if it > works, but patents in a trial for prophalitic dosing > felt it decreased > depression and anxiety in their children. a > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 why don't you check for strep antibodies in the blood? AntiDnase and aso titers i think... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 why don't you check for strep antibodies in the blood? AntiDnase and aso titers i think... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 why don't you check for strep antibodies in the blood? AntiDnase and aso titers i think... Quote Link to comment Share on other sites More sharing options...
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