climb contact
Wed Apr 15, 2015 10:00am

thanks pete, I'll pass this information on to Rachel at CLIMB and here is her email (rachel@climb.org.uk)(for others reading this, please go through the climb website if you want to learn more about this organization) - I guess that you are in the same boat as us (a wonderful boat!)in that we are so far removed from dealing with CPS. But we'll do what we can to help this family. great to hear that your kids are doing well; mine is 17 and still just on a permit; I'm terrified to drive with him so 'dad' has to do it all.
I can't recall what I had last told you about Jared, but his labs were so good and his biopsy was so good that they took him completely off of meds 1.5 years ago; but a biopsy the following year was not as good and he's back on 0.5 mg once per day just to see if a low maintenance level will ward of fibrosis. I guess it's all still too new to really understand it all. Everything else is great. He never did go on any amino acid supplements as we had discussed in the past.

  • Gladly willing to talkPete, Mon Apr 13 10:21pm
    Hi Eileen, Myself or my wife would be more than happy to talk with other families about our experiences. Both girls are doing very good and are now 16...with drivers licenses. It's been awhile since... more
    • climb contact — eileen, Wed Apr 15 10:00am
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