PEX next week...advice?

[T_Mom]

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--

[Ellen]

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

 

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--

[sf_mom]

Ellen, I wanted to add that we saw huge improvement once we upped the antibiotic too and we did IVIG.

 

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

 

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--

[Ellen]

This is good to hear. I am feeling confident now that the combo of the higher dose antibiotics and IVIG is my son's best chance of getting back to baseline.

 

Ellen, I wanted to add that we saw huge improvement once we upped the antibiotic too and we did IVIG.

 

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

 

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--

[sf_mom]

Yeah, I didn't want you to give up on the higher dose once you did IVIG. We've seen marked improvement in all areas and this last treatment really helped him past some lingering issues. We pray now that it sticks and another treatment isn't required.

 

This is good to hear. I am feeling confident now that the combo of the higher dose antibiotics and IVIG is my son's best chance of getting back to baseline.

 

Ellen, I wanted to add that we saw huge improvement once we upped the antibiotic too and we did IVIG.

 

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

 

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--

[Worried_Dad]

Ditto! For our son, the high-dose augmentin XR seems to have been the "missing piece" of the treatment puzzle.

 

 

Ellen, I wanted to add that we saw huge improvement once we upped the antibiotic too and we did IVIG.

 

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

 

"In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December.... "

 

 

Ellen, our d somewhat resolved with steroid burst and antibiotics, and having been on full strength amoxicillan for a year now has returned to herself 100%. I can't tell from what you are saying, but are you saying that overall the OCD improvement was best with antibiotics, over plasmapheresis? Best to you--