DD getting lVlG today @ Mass General Boston!

[1tiredmama]

Thank you for sharing your success story. I'm some glad that Drew is doing so well! Like allboysmom, I am curious as to how long your daughter was affected by PANDAS before treatment. My son is nearing 18 and has been affected for well over a decade. It's anybody's guess as to how much progress we can expect with treatment.

 

Thank you to Drew for enlightening the medical professionals on PANDAS! You are doing your part--YAY!

[minimaxwell]

We are thinking it started at age 6. she was VERY functional for years. In middle school things got much worse,then better. One summer she was even able to go to overnight camp,seems like ages ago since she has been sleeping in our room for so long. Then the summer after overnight camp she was glued to me. Last few years have been the worst.

 

So now the good news--she slept in her room the past 3 nights, no crying,panic or anxiety. All from the lVlG. We were joking about how last week on the last day of her treatment her roommate was throwing up in the next bed and she stayed in the room. That would have NEVER happened before. Still dealing with some intrusive thoughts and anxiety but it has only been a week. we are hopeful.

 

I have heard some say the longer you are dealing with this the harder/longer it is to heal. then i have heard stories about older people who recover quickly after many years. I think the bottom line is they just don't know!

 

If you can get your insurance to cover lvlg I would go for it!