Protocol for plasmapheresis/PEX

[momofadult]

Where in N.Ca do u live. My son has PANDAS plus immune def. gets IVIG monthly. Has been sick for 14 yrs. and is 28. Where is hematologist.

 

Hi Bordercollie. I will PM you. I am thinking perhaps my reply that was sent the other day didn't go through as I intended. I am still learning the formats for posting and reading.

[momofadult]

Hi tpotter,

 

For sometime now,I have wanted to reply to a comment that you made but being new at figuring out the board, not being able to send a PM to you, running into a bump in the road getting my son started on his PEX treatment has caused my reply to be later than I wanted. But, here it goes.....

 

You are probably quite right about the onset possibly happening even before the incident at 15 years of age. Pandas was not on my radar screen back then and I probably attributed behavioral changes to the ups and downs of his autism. I hope that if he has had pandas for such a long time that he will still be able to respond to the PEX. He started his PEX on Tuesday and gets it three times a week on an outpatient basis at an infusion center. They implanted a central catheter in his upper chest for the procedure expecting that it will take a fair number of exchanges. We have our eyes glued to him looking for any hint of a positive response.

 

It's very fortunate that you were able to associate your son's depression and suicidal thoughts with pandas and then get treatment that worked. Did your son have any other symptoms with these two symptoms?

Cjenn

 

 

 

 

" How long has your son been sick-- it is clearly PANDAS? It is autoimmune encephalitis. The strict definition of PANDAS excludes him by age although adult variants exist informally. He had elevated titers to strep, mycoplasma and pneumococcus. He had his first sudden onset of symptoms in June 2010. He gradually improved in the typical "sawtooth" fashion, though not to baseline. In July 2011 he had another acute severe exacerbation. It responded dramatically to prednisone but he relapsed when the prednisone was tapered away. He is now worse than at initial onset and the former dose of prednisone is not having any effect. It may need to be increased while we await plasmapheresis. When I look back, I am inclined to believe a set of symptoms he had at 15 years of age was probably its first occurrence.

 

 

I was going to ask you if you were certain this was truly his first onset or that maybe it was not as severe in the past, and you didn't realize what was going on, and then I read your comment that it may have started at 15 years of age. I'm truly wondering if it maybe started even before that, as my DS was diaganosed at 15 when he became suicidal...the 2nd time we realized it might be PANDAS and tried abx...it was a miracle! The only reason we recognized it as PANDAS at that time was because his younger brother had more classic onset (that still took 4 years to get a dx), and we had additional information at that point. Otherwise, we would still not know, and I hate to think if he would even still be alive!

 

But, I came across a writing journal of his from 1st grade about 2 years ago, and sure enough...there was the evidence...major changes in handwriting overnight. Then, I thought back about separation anxiety that I didn't think about at the time as being anything more than just a very sensitive kid. And then there was the time when I left him and his father at a restaurant (he was maybe 2 1/2 years old) to go to a meeting, and my DH said that he screamed and cried inconsolably for hours.) He also had an allergic reaction to the MMR vaccine...could that have been the start? And, he was born with ABO incompatibility (got my blood and his mixed in utero), and he was born was terrible jaundice. Could that have been it? Who knows, but I am certain it did not start at 15, even though that's when we put 2 and 2 together.

 

In answer to your question, both my boys have had PEX and IVIG, and both have helped a lot. PEX helped longer, and I would recommend it if you can get it. PM me if you want more information.

Edited December 18, 2011 by momofadult

[tpotter]

Hi tpotter,

 

For sometime now,I have wanted to reply to a comment that you made but being new at figuring out the board, not being able to send a PM to you, running into a bump in the road getting my son started on his PEX treatment has caused my reply to be later than I wanted. But, here it goes.....

 

You are probably quite right about the onset possibly happening even before the incident at 15 years of age. Pandas was not on my radar screen back then and I probably attributed behavioral changes to the ups and downs of his autism. I hope that if he has had pandas for such a long time that he will still be able to respond to the PEX. He started his PEX on Tuesday and gets it three times a week on an outpatient basis at an infusion center. They implanted a central catheter in his upper chest for the procedure expecting that it will take a fair number of exchanges. We have our eyes glued to him looking for any hint of a positive response.

 

It's very fortunate that you were able to associate your son's depression and suicidal thoughts with pandas and then get treatment that worked. Did your son have any other symptoms with these two symptoms? My oldest son had depression and suicidal thoughts and it never occurred to me or anyone else to consider pandas at the time.

 

Cjenn

 

 

 

 

 

 

These were the only signs we were aware of at the time (although, trust me, there were plenty over the years that we did not notice. And, yes, we were very lucky we were able to attribute it to PANDAS. As awful as it has been for my younger son, it was because of him, and Diana Pohlman who first put me in touch with Dr. K (for my younger son, who was classic PANDAS, but still took 4 years to get a dx), and then sent me a paper that Dr. K. had written which included adolescent/adult PANDAS that allowed me to realize that my older son's suicidal ideations, rages (where he broke walls,) etc, might actually be PANDAS. So, I loaded both kids onto an airplane, and got them up to Dr. K. He agreed that it was PANDAS (which would explain why all the meds for ADHD and then bipolar over the years either did nothing or made him way, way worse. We switched to Dr. L, because she was driving distance form our house (and I found out about her after seeing Dr. K.), but I am so very thankful to him and all the other docs (Dr. B. who now gives him IVIG and found his immune deficiency,) our LLMD who diagnosed and is treating him for Lyme, and our local DAN doc who we recently got hooked up with, who will follow any of these doc's protocol locally (except PEX, because he doesn't have admitting privileges at any hospitals :-(

 

Please let me know how the PEX goes. If you haven't already, though, I would highly recommend that you follow up the PEX with IVIG within just a few weeks (Dr. K. says within 28 days.) Our PEX was not followed up with IVIG, and I am very sorry that it wasn't. PM me, and I can discuss further.

 

 

" How long has your son been sick-- it is clearly PANDAS? It is autoimmune encephalitis. The strict definition of PANDAS excludes him by age although adult variants exist informally. He had elevated titers to strep, mycoplasma and pneumococcus. He had his first sudden onset of symptoms in June 2010. He gradually improved in the typical "sawtooth" fashion, though not to baseline. In July 2011 he had another acute severe exacerbation. It responded dramatically to prednisone but he relapsed when the prednisone was tapered away. He is now worse than at initial onset and the former dose of prednisone is not having any effect. It may need to be increased while we await plasmapheresis. When I look back, I am inclined to believe a set of symptoms he had at 15 years of age was probably its first occurrence.

 

 

I was going to ask you if you were certain this was truly his first onset or that maybe it was not as severe in the past, and you didn't realize what was going on, and then I read your comment that it may have started at 15 years of age. I'm truly wondering if it maybe started even before that, as my DS was diaganosed at 15 when he became suicidal...the 2nd time we realized it might be PANDAS and tried abx...it was a miracle! The only reason we recognized it as PANDAS at that time was because his younger brother had more classic onset (that still took 4 years to get a dx), and we had additional information at that point. Otherwise, we would still not know, and I hate to think if he would even still be alive!

 

But, I came across a writing journal of his from 1st grade about 2 years ago, and sure enough...there was the evidence...major changes in handwriting overnight. Then, I thought back about separation anxiety that I didn't think about at the time as being anything more than just a very sensitive kid. And then there was the time when I left him and his father at a restaurant (he was maybe 2 1/2 years old) to go to a meeting, and my DH said that he screamed and cried inconsolably for hours.) He also had an allergic reaction to the MMR vaccine...could that have been the start? And, he was born with ABO incompatibility (got my blood and his mixed in utero), and he was born was terrible jaundice. Could that have been it? Who knows, but I am certain it did not start at 15, even though that's when we put 2 and 2 together.

 

In answer to your question, both my boys have had PEX and IVIG, and both have helped a lot. PEX helped longer, and I would recommend it if you can get it. PM me if you want more information.

[momofadult]

Hi tpotter,

 

It looks like the authoring of our posts got mixed up!

 

Cjenn