Hi Karen, Alex is on 4mg/kg and taking it twice a day. It's working great on
everything else but the CNS pressure still up and this last visit he had
lost 15db in the L ear.


regards Kate

-----Original Message-----
From: nomidsyndrome@yahoogroups.com
[mailto:nomidsyndrome@yahoogroups.com]On Behalf Of sfokaren2003
Sent: Saturday, September 30, 2006 8:37 PM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] Re:Anakinra doses


Dear Karen,

How is Charlie doing on the Anakinra? Is it helping? I hope so!Seth
is on 2.5 mg per kilo, but he started at 1 per kilo the first month he
was on it, then went up to 1.5/kg a few months later, then 2/kg. he
is now on 2.5/kg and has been doing great on it at that dose for over
1 1/2 years I think. We just have to make sure to increase the seage
total when he grows to keep him in that range. I notice a difference
when he has outgrown his dose,and needs to be adjusted for his weight.

Some kids are on 3/kg and some are taking it twice a day, but I hope
they report in on this to clarify their dosing.

I have the articles for the NIH study on the www.nomidalliance.net
website under research articles, and there is also a nice supplement
article on the medication and research that may help you as well.

Please let us know how Charlie is doing! It is good to hear from you.

Karen Durrant





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