NVAmom Posted June 30, 2010 Report Posted June 30, 2010 Forgive me if this posts twice. I was certain I hit 'Post topic' before but when I went to look I could not find my post. My ds was diagnosed by DR L in Oct and she has brought him a looooong way from where he was. When she first started treating him he was having severe rages, OCD, anxiety and tics. He is doing much better than when we started. Heowever, I started noticed a steady increase in symptoms in April and May. It seemed more than just the wax and wane. I was eagerly awaiting our follow up with DR L but it was scheduled for the week after she lost her son. Although, at this very moment he seems to be stable I am considering taking my son to see Dr B (8hr drive - insurance won't cover) just to make sure we are doing evertyhing we can. I think part of considering this is because my son brought home a portfolio on the last day of school that had writing samples for every year from K-5th grade. As I was reading through the portfolio, I realized even though he has very few rages now, the OCD is tolerable and the tics are minimal his academic skills are not even close to where they were. His 3rd grade samples were far better than anything he had done this entire year (5 th grade). I have nothing but respect and gratitude for DR L, but since our next appt is not until Aug (if she is able to come back then) I am wondering if I should take my son to see DR B. Have any of DR L's patients also seen Dr B?
Fixit Posted July 1, 2010 Report Posted July 1, 2010 I might be going to see doc L and doc B soon....i understand he is very good.... and too mee there are not enough docs and might have a different prespective as we are all still learning... Can i ask ...did you do pex with doc L or just abx??? Forgive me if this posts twice. I was certain I hit 'Post topic' before but when I went to look I could not find my post. My ds was diagnosed by DR L in Oct and she has brought him a looooong way from where he was. When she first started treating him he was having severe rages, OCD, anxiety and tics. He is doing much better than when we started. Heowever, I started noticed a steady increase in symptoms in April and May. It seemed more than just the wax and wane. I was eagerly awaiting our follow up with DR L but it was scheduled for the week after she lost her son. Although, at this very moment he seems to be stable I am considering taking my son to see Dr B (8hr drive - insurance won't cover) just to make sure we are doing evertyhing we can. I think part of considering this is because my son brought home a portfolio on the last day of school that had writing samples for every year from K-5th grade. As I was reading through the portfolio, I realized even though he has very few rages now, the OCD is tolerable and the tics are minimal his academic skills are not even close to where they were. His 3rd grade samples were far better than anything he had done this entire year (5 th grade). I have nothing but respect and gratitude for DR L, but since our next appt is not until Aug (if she is able to come back then) I am wondering if I should take my son to see DR B. Have any of DR L's patients also seen Dr B?
NVAmom Posted July 1, 2010 Author Report Posted July 1, 2010 We are doing antibiotics and an anti-viral daily(my son gets frequent canker sores that cause PANDAS exacerbations) and 1 course of steroids last fall.
NVAmom Posted July 1, 2010 Author Report Posted July 1, 2010 ohhhh left this off - we have not done PEX
trggirl Posted July 1, 2010 Report Posted July 1, 2010 We saw Dr. L earlier this year, then saw Dr. B this past week. We did it because my daughter had just developed Clostridium when the accident occurred. We felt we needed to continue pursuing treatment and we did not know when Dr. L would be back. I have been happy with both Dr's.
NVAmom Posted July 1, 2010 Author Report Posted July 1, 2010 We saw Dr. L earlier this year, then saw Dr. B this past week. We did it because my daughter had just developed Clostridium when the accident occurred. We felt we needed to continue pursuing treatment and we did not know when Dr. L would be back. I have been happy with both Dr's. Did Dr B recommend any changes to your daughters treatment? If so, were the changes because of the Clostridium or for over all PANDAS treatment. Thanks!!!
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