OCD MEDS AFTER PLASMAPHERESIS

[MOMOFTWINS_2]

Hi,

I am new to this board. I have an 18 year old son who was diagnosed with PANDAS after things got really bad....he was having rages and OCD and his worst OCD issue is that he needs to scratch his dad and me on the face...needs to see the scratch marks. We got in to do 3 rounds of plasmapheresis under sedation, but a doctor who was not completely briefed on our situation decided to remove the sedation because he talked to my son and he was "cooperative"....Long story short they put the sedation back in but he is extremely sensitive and he woke up and pulled out his ivs, so we had to leave the hospital after only one plasmapheresis treatment.

I have a few questions:

 

1) Has anyone ever had success with only 1 treatment? We called NIH and spoke to Paul Grant and he said it is possible...If so how long until you saw benefits?

 

2) Is there anything we can do to maximize the benefit of one treatment? Supplements, low dose naltrexone?

 

3) I know I have read that SSRIs can be counterproductive with PANDAS. Since his OCD symptoms are so bad, does anyone have experience with any med that helps the OCD symptoms without adversely affecting the plasmapheresis or worsening the PANDAS situation? Thank you very much.

[peglem]

We've never done plasmapheresis, but I thought it was typically only done once for PANDAS. Treatment dose zithromax (500mg/day for 5 days, then 500mg every other day) has done more for my daughter's aggression then any psych med has ever done.

 

But, we do still give her valium a few times a week, when she begins to lose control. It does help, but did not work as well pre-full dose zith.

[Alex]

Hi,

I am new to this board. I have an 18 year old son who was diagnosed with PANDAS after things got really bad....he was having rages and OCD and his worst OCD issue is that he needs to scratch his dad and me on the face...needs to see the scratch marks. We got in to do 3 rounds of plasmapheresis under sedation, but a doctor who was not completely briefed on our situation decided to remove the sedation because he talked to my son and he was "cooperative"....Long story short they put the sedation back in but he is extremely sensitive and he woke up and pulled out his ivs, so we had to leave the hospital after only one plasmapheresis treatment.

I have a few questions:

 

1) Has anyone ever had success with only 1 treatment? We called NIH and spoke to Paul Grant and he said it is possible...If so how long until you saw benefits?

 

2) Is there anything we can do to maximize the benefit of one treatment? Supplements, low dose naltrexone?

 

3) I know I have read that SSRIs can be counterproductive with PANDAS. Since his OCD symptoms are so bad, does anyone have experience with any med that helps the OCD symptoms without adversely affecting the plasmapheresis or worsening the PANDAS situation? Thank you very much.

 

 

Hi,

 

My son had Plasma Exchange last summer. I think each round exchanges about 70% of the plasma, so one round means you should have about a 70% reduction in harmful antiboidies. 3 full rounds results in like 98% exchange if I am doing my math correct. So one round does some good but pretty far from the full 3 rounds.

 

If I were to do PEX again, I would insist on a fairly robust dose of prophylactic antibiotics for an extended period after the PEX to reduce the odds of a strep infection as much as possible. Also, I would make sure to follow the PEX with a higher dose of IVIG, at least 1.5g/kg. I have yet to see a PEX experience on this forum that didn't have some level of relapse down the road. They may be out there, but I haven 't seen it. The IVIG, according to Dr. Kovacevic, one of the foremost PANDAS docs, is to reset the immune system. He told me that after PEX, even though the antibodies are temporaliy removed, they come right back with a new strep infection or possibly even with some other immune challenge. That's why you do the IVIG. Mom Md who posts on here has had one of the best PANDAS outcomes I have seen. Her son had PEX followed by IVIG several months later. She might be a good one to contact. Good luck, Alex

[dut]

Hi - in addition to the abx and IVIG already suggested, Iwonder if it's worth looking at n-acetyl-l-cysteine as a supplement. Research has shown improvement with trichotillomania (a manifestation of OCD) at treatment doses. And I can't imagine it would hurt anything else going on. Only issue, I believe, is that it can be irritating to the stomach at high doses for some people.

[Fixit]

Hi - in addition to the abx and IVIG already suggested, Iwonder if it's worth looking at n-acetyl-l-cysteine as a supplement. Research has shown improvement with trichotillomania (a manifestation of OCD) at treatment doses. And I can't imagine it would hurt anything else going on. Only issue, I believe, is that it can be irritating to the stomach at high doses for some people.

 

remember to take 3x higher dose of vitamin c with that...

 

also,,,did you get to finish the treatment or have to leave early?????

 

and have you given it enought time

 

i have not done that journey..

Edited March 26, 2010 by Fixit

[sf_mom]

For best success... High dose daily antibiotics followed by high does IVIG treatment within the next 3 to 6 weeks. Check absolutely everyone in the family for strep. Rapids, cultures, ASO, Anti-DNase-B.

 

We found out my husband's titers are high after our son's second IVIG.

 

-Wendy

 

 

 

Hi,

I am new to this board. I have an 18 year old son who was diagnosed with PANDAS after things got really bad....he was having rages and OCD and his worst OCD issue is that he needs to scratch his dad and me on the face...needs to see the scratch marks. We got in to do 3 rounds of plasmapheresis under sedation, but a doctor who was not completely briefed on our situation decided to remove the sedation because he talked to my son and he was "cooperative"....Long story short they put the sedation back in but he is extremely sensitive and he woke up and pulled out his ivs, so we had to leave the hospital after only one plasmapheresis treatment.

I have a few questions:

 

1) Has anyone ever had success with only 1 treatment? We called NIH and spoke to Paul Grant and he said it is possible...If so how long until you saw benefits?

 

2) Is there anything we can do to maximize the benefit of one treatment? Supplements, low dose naltrexone?

 

3) I know I have read that SSRIs can be counterproductive with PANDAS. Since his OCD symptoms are so bad, does anyone have experience with any med that helps the OCD symptoms without adversely affecting the plasmapheresis or worsening the PANDAS situation? Thank you very much.

[MomWithOCDSon]

remember to take 3x higher dose of vitamin c with that...

Higher dose of Vitamin C with NAC? Why?

[dcmom]

Momtotwins-

 

I am so sorry- that must have been a huge disappointment. I am curious, where was your son treated? Was it Georgetown or somewhere else?

 

Both of my daughters have had plasma pheresis- 3 treatments each during the 4 day stay. One was this past October, and had immediate and total improvement. She did lose some gains after the flu in November. But, is still doing really well. The other daughter just was treated in early March- and she is doing really well. I do not think they are "cured", but that they are in "remission" from this episode. They are still on full strength antibiotics- and I try to be as careful as possible with things that engage the immune system. I would like to think that IVIG would be a "cure" for pandas- but haven't seen evidence of that yet. Maybe we will know more in a few years.

 

 

Is there any possibility of going back and doing another treatment? I can imagine how exhausting that thought is- but can tell you- a week in the hospital for pex is really no worse than a week in an episode. Maybe the one treatment will calm him down enough to tolerate 2 (or I would go for 3) more. Really, while meds and supplements may help for a time- I think you really need to get at the root of the issue- which is medical.

 

I wish you the best- it sounds like things have been rough. My kids are little, I can't really imagine going through this with an 18 yr old.