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IVIG #3 starts tomorrow


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We made it through three airports and one rental car company and are now sitting in the hotel getting ready for IVIg #3 tomorrow. If anyone else is going to be at Dr. B's I will be the mom with the tall good looking 13 year old with dark hair and a brand new 3DS. Bribery can be a good thing if you think of it as Positive Reinforcement!!

 

Would love to talk to any other parents while we are here. It is a long two days.

 

Cobbie

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Cobbie,

can you share how things seem to be going after the first 2 IVIG's?

Thanks,

Better, much better. We are nowhere near "cured", but he is getting better and having some much better days. We had a great last couple of weeks, which I think can be attributed to a steroid taper. Little things are changing: like not being as irritable, being more interested in the world around him, and dealing better with adversity at school. He is also taking abx for bartonella/lyme and to cover him for strep. No one thing is helping him, lots of big things are helping him.

 

He still has a lot of fatigue. He is pooped by the end of the day and by the end of the school week, he is wiped out.

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DS, was out like a light by nine. He made it through the false alarm fire drill and went straight back to bed, didn't say one word-just went to sleep. His Bart rash has already flared in just a few hours. I look at him and think, "What will it be like, when you are well??" He is sleeping so peacefully and I am praying because I do not feel peace. Hopefully one day, all our children will be well.

 

Cobbie

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