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It has been 5 months since DS14 had his first HD IVIG after major and minor PANDAS attacks since he was a baby. I have been posting updates each month as he had a major exacerbation that began 2 weeks after IVIG, and has slowly recovered beginning about 10 weeks after IVIG (http://www.latitudes.org/forums/index.php?showtopic=14025&st=0&p=115367&fromsearch=1entry115367). He has been receiving HDIVIG about every 8 weeks, and has now had 3 total.

 

This month has been amazing. Every week he is more calm and more cooperative, though some days are better than othrs. He decided to take summer school classes in an effort to get into high school after missing so much o 8th grade. He is doing well in the classes and seems to enjoy them. I can almost see his brain trying to overcome OCD thoughts as he gets ready for school in the morning and then starts to give up when something does not go perfectly well (eg: we are out of the food he wants for breakfast, his favorite pants are not clean, or his hair is not perfect). A month ago, ANY of those would have been a reason to go back to bed and skip school for the day. Now he pushes past it.

 

Still seeing rituals, but he has had them his whole life so I really think it will take lots of work to undo these. We see Dr. M in Florida soon and I am hoping she can help us now to understand these and work through them.

 

The best part is NO ILLNESS really since IVIG. A couple of small colds that lasted a couple of days, but no sinus infections, no respiratory infections, and allergies are even better (though we are very careful with those). I am keeping my fingers crossed!!

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Yea!!! Kimballot, I have been away from the forum for a few months but yours is a name I remember. We joined the forum around the same time. We are preparing for our first of possibly 3 IVIG's with Dr. B. #1 is next week. Please advise on what we should do to prepare. Drink lots of water and what else?? please read my latest post or just advise off of this one. I pray that all continues to improve for you all!!

 

 

Linda

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Kim,

 

This is fabulous and encouraging for so many. I always feel an extra special tingle when one of our older kids is making substantial headway.

 

Is there another IVIG scheduled? My girl is having another the end of Aug which really gives me some peace. Last year, after her first ivig in May, she was bombarded the end of Aug through mid Oct with one immune challenge after another. If you look back over the history of this forum, we see "exposure explosion" come in waves usually 4-6 weeks around winter changing to spring & 4-6 weeks summer changing to fall. So, I feel at ease she will have a fresh infusion to help armor her against that battle period.

 

Best wishes continuing to trend forward :D

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