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Posted
Okay that helps....So, what Cunningham's study is measuring is not how much CamK is there, but the extent to which it is activated by the antibodies? Is that right? (Oh, please be right!)
Yes!!! The IgG seems to be activating the CamK

 

So, when Cunningham says the CamK is elevated over the basal levels- like in my child-242%, was the basal determined specifically for my child by depleting her sample of IgG? Or is there a standard basal that everyone is compared to?

 

As I understand it, the basal level is set by prior results (not your daughters depleted sera) Hope someone corrects me if I'm wrong on that.

 

If depleting IgG lowers CamK activation, then why would IVIG (which administers IgG, right?) be a helpful treatment?

 

Peg, I think there are others who know a lot more about this than I do, so take my comments as just being from someone who is trying to understand too. As for how IVIG helps, I'm not sure. Does it help to wipe out the bad guys or is it more about Tregs? I haven't really spent much time trying to find out, since I'm still trying to figure out where my family fits in this picture.

 

http://www.jimmunol.org/cgi/content/abstract/179/8/5571

Intravenous Immunoglobulin Therapy Affects T Regulatory Cells by Increasing Their Suppressive Function

 

http://www.pubmedcentral.nih.gov/articlere...i?artid=2569158

Tregitopes switch on Tregs

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Posted

Thanks, Kim. The questioning of things really helps me to process all this info swirling around in my head and I appreciate your help. My family is tired of my relentless pursuit of this, so good to have somebody willing to listen to me!

Posted

Elizabeth,

 

Would you mind me asking if there is anything abnormal in your daughter's bloodwork? Were platelet levels normal? I mean bloodwork that reg. Dr. would have performed. Wanted to apologize too for hijacking your thread a bit.

 

 

Peglem,

 

Your very welcome for the responses. I know what "relentless pursuits" are like. It's very hard to resist when it's your child's well being at stake.

Posted

Hi Kim:

 

I need to check her other blood work. We were in the hospital with severe GI issues when they did all the regular blood work.

 

I keep analyzing our Cunningham blood draw experience because I have to think that they mixed my children's blood?????!!! My son's blood work was not so abnormal and he could barely leave our house because of his fears, etc....... Although he had finished his steroid treatment before the blood draw.

 

Has anyone else had their children's blood drawn after steroids and before IVIG? I am wondering if it was lower from the steroids.

 

I am still trying to make sense of how her blood work can be so abnormal when I really do not see anything behaviorally. I know someone said it could mean her brain barrier is closed. What does this mean long term? I think about it all of the time and it is driving me absolutely crazy!!!!!!! I will take it again in a few months. That will be a stressful time.

 

I did read somewhere in the middle of one of my insomnia nights that zinc and magnesium can help keep the brain barrier closed for autoimmune diseases. Has anyone else heard this??? Or course I rushed to the store the next day and bought both of them!!!

 

elizabeth

Posted
Has anyone else had their children's blood drawn after steroids and before IVIG? I am wondering if it was lower from the steroids.

 

On June 5th, Dr. Latimer told us we would have to postpone giving the steroid to our dd if we wanted to have her blood sent to Cunningham.

 

On Wednesday night (Sept 9) when I asked her about baseline tests. She said that we should wait one more month and then do a blood draw for the study because the steroid was probably still supressing her immune system......her last dose of prednisone was on July 18th!

 

I was very supprised at this, I even asked a question to verify that I understood what she had just said, and again she confirmed that the steroids were probably still acting in her body.

 

Although, we were on prednisone for six weeks, and not the common five day diaganostic burst. Of course I will be worring for the next month...hoping that we don't see a slip, but Dr. Latimer seemed very confident that we could keep this under control by occasionally using steroids and prophylactic antibiotics.

 

I have been reluctant to really get into this thread, because my oldest girl is 81/2 and seems to have a stomach complaint every day....I'm getting worried, but my husband keeps telling me to stop coloring everything as PANDAS....so hard not to do!

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