On our way home from the NIH

[JoyBop]

We were at the NIH participating in a PANDAS study. It was the most wonderful experience and I'm so glad we went. My son was not in a flare and was able to participated in all of the procedures, and even enjoy himself. This particular study was about sleep in PANDAS patients, and was limited to 15 patients. DS was number 14 and the final patient has already been selected.

 

Basically DS had all of the same tests and procedures that the IVIG study participants had done, with the exception of the IVIG of course, and the addition of the sleep study. My maternal blood was also taken, with my consent, for use in future studies.

 

I asked if they wanted me to spread the word, or keep it under my hat, since there isnt any recruitment calls out there. They said that the sleep study was complete, but there is what they are calling the Natural History study that is PANDAS specific. They are also including autism and other neuropsychiatric disorders within this study, but they are obviously very interested in PANDAS.

 

If anyone is interested you should contact Swedo office. You should know that anyone who has had IV Ig may be excluded, from what I understand. The study has a very high number of patients that it can accommodate (unlimited if you consider the number of patients that actually know they have it!) you should also know that the cost of travel and meals are not covered, and no compensation is available.

 

We had the most positive experience and my son was treated like a rock star and never wanted to go home. We were able to stay at the Children's Inn Which was a little like being in Disney. Words can not describe how special, loved, and accepted this made my child feel.

 

We had hours of time with all of the doctors involved and I got to ask them questions and get their opinions on everything. The results of our particular tests will be mailed to us in a week or so and I look forward to learning even more. At the end of our intake conference, dr. Swedo herself told me my son has PANDAS Plus. I'm not sure what the plus meant and I forgot to ask, but I should be hearing from them soon as my question was forwarded to her. My son has had autoimmune radiated GI problems and I'm guessing she was referring to the bigger picture of his immune system.

 

It was a fantastic experience for him, and for that alone it was all worthwhile. For me, it was amazing to speak with these doctors personally, Get validation that my child has PANDAS ( no surprise but still great to hear) and get their personal recommendations for my child's treatment.

 

Feel free to ask any questions.

Edited January 11, 2014 by joybop

[Hrosenkrantz]

Congrats joybop! Please keep us posted on what NIH recommends for your son...

[911RN]

Thanks for sharing, very interesting!!

[Missmom]

Very interested to hear what you learn from these experts. Please keep us updated. Thanks.