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I feel like we won the Lottery.


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The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.

 

All future IVIG will be covered.

 

MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.

 

YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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That is the best news ever!!! In so happy for all of you!! Did you end up getting a specific diagnosis that requires any other kinds if treatments? This is such amazing news!! I'm especially thrilled that you son is having such a miraculous recovery. How amazing to make that money back!! Now I'm thinking an lp is the way to get coverage. Was there any indication of anything autoimmune in his blood work?

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Ifran: When my ds just could not seen to move out of recent episode, our PEDS doc thought it was prudent to do the mri, eeg, and spinal to rule out anything that we could have missed. Our PEDS doc was supportive of Pandas diagnosis, but he thought it was time. It was 2 well defined O bands that came up on his spinal fluid. This can be suggestive of MS, but because his blood serum did not show coinciding results of protein in blood, MS was ruled out. These O bands are specifically related to Autoimmune problems. So our doc felt that the evidence proved autoimmune base problem. It makes sense to me that it is this base problem that set my ds up for being vulnerable to Pandas....

 

JoyBop: That is what is amazing. NO, NO EVIDENCE OF AN AUTOIMMUNE ISSUE IN THE BLOOD WHAT SO EVER. IT TOOK THE LP TO CONFRIM IT. HE WAS CLEAN AS A WHITSTE ACCORDING TO HIS BLOOD LABS. HA

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That's so awesome. I still wonder why many doctors won't do a lumbar puncture.

 

I've been sick for 12 years and nobody has done one with me, just say that everything in my labs "are normal"..........i.e. mayo clinic. But I really think a lumbar puncture for myself will reveal things!

 

Anyhow, that's amazing to get ivig covered. Continued successes with your son.

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I'm so happy for you qannie47! Thats fabulous news!

this is a very interesting topic - I wonder if the lumbar punctures that Dr Swedo is doing as part of the study is testing for these bands, and their correlations to Dr C's tests.

 

Could this be the definitive test for all of us to get insurance approval? Anyone else had a puncture that measured "o bands"? (whatever those are!)

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