IVIG in an older child?

[colleenrn]

I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5.

Thanks, Colleen

[EAMom]

Worried Dad's son is 12.

 

Has your dd hit puberty yet? That might make a difference?

[colleenrn]

She has not begun menstruating, but is definitely developed and I expect her period anytime now. I am also going to have to consider it for my 5 and 7 year old. I knew they had strep a lot when they were young, but just finished combing over my calendars from the past 6 years and was shocked to see how many times my 5 year old had strep, beginning when he was under two years old. He is the one I am most concerned about. He became extremely hyper and labile around the same time of his strep episodes beginning and I thought it was just his personality. Even though I knew my oldest had PANDAS, I just never considerd it could be occurring in my toddler and now I figure he went the longest with untreated strep.

[bmom]

Worried Dad's son seems to be improving at 12. Also, we just returned from Dr. K. His oldest IVIG patient (male) was 13.5. I asked him if it was successful and he said yes. It took longer to take effect though. He said that is the pattern-older=longer conversion time. I believe that is his oldest and believes that puberty is a biggie. Although it can take awhile to actually complete going through puberty (I believe).

[lss]

Colleen,

 

Look at Worried Dad postings. I beleive his son is 12.

 

Linda

 

I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5.

Thanks, Colleen

[pmoreno]

I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5.

Thanks, Colleen

 

 

Sometime around puberty the thymus gland stops growing and actually stops functioning and in adults it has turned into a fatty piece of non-functional tissue. However prior to that time it grows rapidly (with the major growth occuring until about age 8, then slowing until puberty). It is responsible for the production of t cells which cause the immune response and also for the t-regulatory cells which suppress the immune response appropriately. I think the reason they say that IVIG is less helpful for older kids (close to or after puberty) is the same reason that some of these kids actually start getting better after puberty. Since there is not that constant production of t cells that can cause an autoimmune response, it means that PANDAS symptoms start going away. Also since there is no further production of t regulatory cells, IVIG can't promote the increased production of those (which would normally help to modulate the hyper immune response). That doesn't mean that the IVIG wouldn't help to repair the damage that's already done from myelin being stripped off the neurons. So it can probably help on that level still after puberty, but the effect would be slower and less noticeable than if IVIG were working on more than one level. This is just my observation from what I know about the thymus gland. I don't know if there is scientific data to support this. Pat

[Worried_Dad]

Hi, Colleen:

 

Sorry I didn't post sooner. Think you and I traded posts on a different thread, but I lost track of this one. Anyway, as others have said, my son is 12 and we just did IVIG 6 weeks ago with Dr. K in Chicago. Overall, we've seen major improvement over where we were pre-IVIG, when things were just awful. We still have a long way to go for "full conversion," but we're way better off today than we were before IVIG.

 

The slower rate of progress (with occasional bumps in the road) isn't unusual for kids over 10, from what Dr. K (and others) told us. And yes, we too were warned that IVIG may not be effective when puberty starts in earnest. That's why we decided not to delay.

 

So I would just share that IVIG has turned out well for my son so far. He's made lots of progress and is a far happier, calmer kid than he was before the procedure. We just haven't quite reached that magic moment when he's 80-90% back to where he was before this whole nightmare began (spring of 2007 for us). For us, the OCD symptoms are the last hurdle, but most everything else has resolved (or mostly resolved).

 

Hope that helps, and best of luck!

[guy123]

I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5.

Thanks, Colleen

 

 

Sometime around puberty the thymus gland stops growing and actually stops functioning and in adults it has turned into a fatty piece of non-functional tissue. However prior to that time it grows rapidly (with the major growth occuring until about age 8, then slowing until puberty). It is responsible for the production of t cells which cause the immune response and also for the t-regulatory cells which suppress the immune response appropriately. I think the reason they say that IVIG is less helpful for older kids (close to or after puberty) is the same reason that some of these kids actually start getting better after puberty. Since there is not that constant production of t cells that can cause an autoimmune response, it means that PANDAS symptoms start going away. Also since there is no further production of t regulatory cells, IVIG can't promote the increased production of those (which would normally help to modulate the hyper immune response). That doesn't mean that the IVIG wouldn't help to repair the damage that's already done from myelin being stripped off the neurons. So it can probably help on that level still after puberty, but the effect would be slower and less noticeable than if IVIG were working on more than one level. This is just my observation from what I know about the thymus gland. I don't know if there is scientific data to support this. Pat

 

Now that's interesting.

 

So hypothetically speaking, IVIG would be useless on an adult, correct?

[pmoreno]

I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5.

Thanks, Colleen

 

 

Sometime around puberty the thymus gland stops growing and actually stops functioning and in adults it has turned into a fatty piece of non-functional tissue. However prior to that time it grows rapidly (with the major growth occuring until about age 8, then slowing until puberty). It is responsible for the production of t cells which cause the immune response and also for the t-regulatory cells which suppress the immune response appropriately. I think the reason they say that IVIG is less helpful for older kids (close to or after puberty) is the same reason that some of these kids actually start getting better after puberty. Since there is not that constant production of t cells that can cause an autoimmune response, it means that PANDAS symptoms start going away. Also since there is no further production of t regulatory cells, IVIG can't promote the increased production of those (which would normally help to modulate the hyper immune response). That doesn't mean that the IVIG wouldn't help to repair the damage that's already done from myelin being stripped off the neurons. So it can probably help on that level still after puberty, but the effect would be slower and less noticeable than if IVIG were working on more than one level. This is just my observation from what I know about the thymus gland. I don't know if there is scientific data to support this. Pat

 

Now that's interesting.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So hypothetically speaking, IVIG would be useless on an adult, correct?

 

That might be correct. Not only because the thymus stops "educating" the t cells that are manufactured in the bone marrow after puberty, but also because for some reason myelin does not regenerate in adults like it does in children. IVIG is helpful for adults for other disease processes, however, because it has different functions. Are you asking about an adult who has PANDA like symptoms or an adult who is using IVIG for another diagnosis?

[guy123]

I was talking about an adult with PANDAS symptoms.

[colleenrn]

Just wanted tho thatk everyone for all your responses! I really appreciate it!

Colleen