Jump to content
ACN Latitudes Forums

Recommended Posts

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

Link to post
Share on other sites

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.

Link to post
Share on other sites

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

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...