Sneezing girl finally diagnosed .... with PANDAS !

[Laurensmom]

lauren's mom....I think you should change your screen name to "notlaurenjohnsonsmom"

 

Hey man, I was here first! I think LJ's mom should change her name to "not the original laurensmom"!

[motheronamission]

Hallalujeh AMEN! I am almost in tears right now. I have not posted on here in a long time. My son developed severe tics 5 yrs ago after a round of antibiotics to treat strep. After a year of non-stop dr visits offering to put him on all kinds of meds.....while NOT one professional opinion supporting or acknowledging PANDAS, I gave up the fight. I chose to closely monitor his diet, keep him detoxed, and on supplements. The last 5 yrs have been very tough, "don't eat that, too much sugar in that, no caffine..." etc. I am incredibly blessed that my son deals exceptionally well with it, and is surrounded by very supportive friends and teachers at school.

 

My husband told me about "the sneezing girl" video on the internet. I never watched the video and just thought wow...poor kid. My mom sent me the aol link with her interview diagnosing it as Pandas. When I watched her in the video...I almost fell out of my chair. My son has had that tic! His tics change about once a year. Right now he is back to his short shout. But last year, he was doing the same thing. I knew it wasn't a sneeze, but a transition in his tic. If you watch closely, it doesn't seem to be coming from her nose like a sneeze, but more so from her mouth. Had I watched the video back in Nov, I would have recognized it as a tic.

 

I'm sure someone has posted this link from aol, but I will post it again. This article states that "It's also more common in families where there is a history of strep-related complications like scarlet fever or tonsillitis." My son's father began to have kidney failure at age 9 due to a streptococcal manifestation. He had his first kidney transplant at age 19, and another this summer at age 33. This is a serious breakthrough. I don't want to get my hopes up with the azithromycin, but I'm willing to try anything other than meds to see him have relief for the first time in 5 yrs.

 

God Bless Lauren, her family, and her doctor for bringing this to public attention on this level. Best of luck to all of you as well! There is light at the end of the tunnel.

 

http://www.aolhealth.com/condition-center/...2Fadhd%2Fpandas

[thereishope]

Yep. My grandmother almost died from strep or scarlet fever in a time prior to penicillan. I had tonsilitis all the time as a kid. Probably 5+ times a year.

 

 

I'm sure someone has posted this link from aol, but I will post it again. This article states that "It's also more common in families where there is a history of strep-related complications like scarlet fever or tonsillitis."

[thereishope]

May I also add that a phrase that needs to be "adoptted" by the PANDAS movement is "seeing tehelight at the end of tunnel". I used that phrase at our turning point and I know many others use it as the perfect analogy. It is so appropriate.

[harmony]

You are suppose to be checked when you give birth for strep.... swabbed at about 35 weeks.

 

I do not think GYN check for this routinely, or at least I have never been.

They test for group B while you are pregant- she had group A in her vagina.

Now My son now has Group B in his throat.

This is so confusing