Comments on: One mother's story: How strep throat attacked my child's brain

By: Claire Bowles

Claire Bowles — Thu, 14 Oct 2010 16:33:00 +0000

Plasmaphoresis is basically a procedure which is done in the ICU where a femoral line is placed and then the blood is run through a machine. The plasma is pulled off and replaced along with the blood cells.It was performed over three days and each treatment lasted about two hours. WE left the hospital cured. Four months later though he relapsed although not as severe as before. We have since had IVIG twice and are planning to do it again each month. Each relapse has been milder than the one before. Our immunologist described it as trying to reboot your computer and hope the body forgets to make the antibody again. Our hope is each relapse will be farther apart than the last. I think the reason my son has been so difficult to treat is because he had this so long without us knowing. We do have a neurologist, immunologist, infectious disease docto all on board.

By: Mvincent4

Mvincent4 — Thu, 14 Oct 2010 01:51:00 +0000

What is plasmaphoresis and how did you actually diagnose your son? Did you see a neurologist? Did you have any websites or books that you find beneficial? I’m gathering information. I believe my son suffers from this. He is 3 1/2. I read about the condition in Dr. Kenneth Bock’s book, healing the 4 A’s. (My son has allergies to many things…) It wasn’t until I noticed his continual strep infections that I began to diagnose him without any symptoms and my dr. thought I was crazy until I nailed the diagnosis 3 times in a row. There’s something to it. It’s like a light switch for him. Thank you for your help.

By: Mvincent4

Mvincent4 — Thu, 14 Oct 2010 01:46:00 +0000

This is very interesting. My son is 3 1/2 and I’ve noticed a patten with his behavior. He becomes oddly erratic, throwing tantrums and most recently, with the recent bout with strep, peeing and pooping in his room. I watched him do it…It was as though that was just an ordinary thing to do, without any thought to it. I told the dr. 2 days ago that he had strep. He didn’t have any symptoms, but his behavior – well, everything is a growl, yell and he has these bizarre tantrums with loud shriek screaming? Well, anyway, the rapid strep came back negative. I was perplexed, because he was still having the emotional outburts and a new symptom during his Sept. strep bout, a re-occurent throat clearing. The dr. called today. The culture grew and yep, he has strep. I talked with the dr. again about PANDAS. He’s beginning to warm to the idea, although he finds the whole area controversial. So, here I go gathering research for the both of us. Thanks for the story. It’s so sad to see my little man go through this…he’s such a sweet boy.

By: Kristin Cantu

Kristin Cantu — Thu, 11 Mar 2010 21:44:49 +0000

Hi Lori,

Your daughter’s doctor would be the best person to speak to about this. Tell the doctor what you’ve told us, your concerns and your theory as to what it is. Hopefully together you can come up with a plan that will help your daughter.

By: loriwesley

loriwesley — Thu, 11 Mar 2010 20:04:09 +0000

What do I do with my 22 year old daughter who I believe has had this since she was 11? She developed OCD symptoms after long periods of strep throats – finally had her tonsils out at age 12. She is a senior in college and still suffering from OCD thoughts.

By: Anonymous

Anonymous — Thu, 11 Mar 2010 20:04:00 +0000

By: Patrice

Patrice — Mon, 23 Nov 2009 13:42:47 +0000

Denata,

I am sorry to hear that you and your child are suffering so. I don’t know if you believe in “alternative medicine” but you should check out NAET. Google it and find a provider near you. It is noninvasive allergy elimination technique using muscle testing and accupressure. My 7 yr old daughter is on the autistic spectrum and has PANDAS. Her behavior is so awful she is not getting an education. Anyway, she also has significant sensitivities to MOST foods out there. I have been taking her for NAET treatments since the summer. We did the basic 15 and are about to complete 40. She has been cleared for many of the foods that caused significant behaviors and now she can eat them. It is a long process. Our NAET practitioner just ordered the PANDAS vial to use with my daughter. I wish I could tell you about our success with it, but we have not done it yet.

Like most things, it may not work for everyone, but it is worth a try. You will be in my thoughts.

By: Denata

Denata — Thu, 19 Nov 2009 04:48:22 +0000

Hello

Thank you to all of you for sharing your stories. I am sad to learn that other children are suffering from PANDAS but am glad to have others to talk to about this. My 7 year old has suffered from PANDAS his whole life. We think he contracted strep from me at birth. His strep level is 1153, he has taken all the suggested medications but is still not well, and I can’t find anyone in Canada to provide the IVIG treatment. I feel as though the Medical Association in Canada is waiting for more studies to be done but all the patients are in the U.S. They are cowards. My son’s symptoms are as follows: paranoia, anxiety, ocd, separation anxiety, defiancy, and has extremely violent outbursts. I have a healthy daughter who doesn’t exhibit any of these and is very normal. We’ve know since our son was under the age of 1 that something was different and concerning. We have been fighting to help him ever since. Please, please tell me if you know of a hospital in Canada who will perform IVIG for PANDAS patients. My son cannot wait any longer, he is losing his childhood.

Thank you,
Denata