Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
KLW

prednisone pulsing

Recommended Posts

Has anyone had experience with pulsing solumedrol at 5mg/kg? For my DS, that equals 300mg via IV along with his low dose IVIg he receives every two weeks. Ibuprofen does nothing for him. He needs some relief but I've no idea what to expect 300mg at one time will do. We had some gains on an oral pred burst at 60mg per day for a week last year and has only had 10mg solumedrol with his IVIg since then (mainly just to ward off immediate IVIg headaches, etc). This is beginning this week. I want to see great things from it but naturally am a little anxious about it.

Share this post


Link to post
Share on other sites

Hi KLW,

I am curious how your DS is doing? Better I hope! My DS (age 9 - diagnosed this past Fall) has just finished his second set of three high dose Solumedrol infusions. This was the first thing that brought him any improvement (we saw him get approx 1/3 to his baseline approx a week after completing the first set of three infusions). We then waited 3 weeks and have just finished another set of three Solumedrol infusions (I don't know what the dosage is, but it is "high dose" and he weighs 95 pounds). I can only hope this round brings him further improvement. He is also on Plaquinil to try to keep his immune system calmed down. We are being treated at Stanford. I ask all this not only to see how the Solumedrol did for you, but with any guidance on you would compare it to the IVIG? It seems that at this time, the Stanford doctors are preferring to go with the Solumedrol pulses plus Plaquinil before trying IVIG (for kids for whom antiobiotics alone did not do enough). This is different from what I read about at places on the east coast, chicago and seattle, where I still hear more about IVIG as the second line treatment to antibiotics.

 

The side effects of all these steriods are not fun. We are desperate to get our son better. I hope yours is.

Share this post


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
Sign in to follow this  

×
×
  • Create New...