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First and HOPEFULLY only IVIG Scheduled


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IVIG is scheduled for August 4th. We are very excited and hopefully on the road to recovery for DS7! We saw a Pediatric Immunologist/Hematologist who works for one of the major hospitals in San Antonio in their Cancer and Blood Disorder Unit. He is also a Professor at the UT Health Science Center in San Antonio. This guys reputation is huge! He has been doing IVIG for 25 years and this will be his FIRST IVIG for PANDAS! He knows Dr. Swedo as he was invited by the NIMH to serve on a committee in 2000 to review some of Swedo's research on PANDAS. He also knows Dr. Cunningham personally and said she is a first class scientist who knows her stuff! So basically he did not take the boys Cam Kinase tests lightly and found them to be very compelling. I discussed our phone consult with Dr. K which confirmed to us the PANDAS diagnose and told him his treatment recommendations. He said that the dose for the IVIG looked about right in terms of what he would do, but he said he doesn't know about the value of treating with long term preventative abx after IVIG. He said he would look further into it though. I need you guys to please send me any articles you have found that support this so I can send them to him!

 

Unfortunately it is still a wait and see on my younger son, but we are so thankful to be moving forward with treatment for my older son since he is so much further advanced.

Edited by saidie10
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Great! Nice to hear the Mds are catching up with us LOL

Melanie

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IVIG is scheduled for August 4th. We are very excited and hopefully on the road to recovery for DS7! We saw a Pediatric Immunologist/Hematologist who works for one of the major hospitals in San Antonio in their Cancer and Blood Disorder Unit. He is also a Professor at the UT Health Science Center in San Antonio. This guys reputation is huge! He has been doing IVIG for 25 years and this will be his FIRST IVIG for PANDAS! He knows Dr. Swedo as he was invited by the NIMH to serve on a committee in 2000 to review some of Swedo's research on PANDAS. He also knows Dr. Cunningham personally and said she is a first class scientist who knows her stuff! So basically he did not take the boys Cam Kinase tests lightly and found them to be very compelling. I discussed our phone consult with Dr. K which confirmed to us the PANDAS diagnose and told him his treatment recommendations. He said that the dose for the IVIG looked about right in terms of what he would do, but he said he doesn't know about the value of treating with long term preventative abx after IVIG. He said he would look further into it though. I need you guys to please send me any articles you have found that support this so I can send them to him!

 

Unfortunately it is still a wait and see on my younger son, but we are so thankful to be moving forward with treatment for my older son since he is so much further advanced.

Congrats! We are really getting Texas whipped into shape!! Can't wait to hear how it goes- keep us posted!

Brandy

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