Tammy,

Lauren actually just got a CP diagnosis when she was about 5 1/2.  We had been to the cp clinics when she was younger, but they had never given her the formal diagnosis, which was fine with us.  We always used the diagnosis of hypotonia to get her equipment from ins.  Then when we wanted to do HBO, a pediatrician we had at the time (no longer), really thought she needed that formal diagnosis.  So I called up the CP clinic (who hadn't seen her for 2 years) asked them to review the charts and send us the CP diagnosis.  The next day they faxed me the letter that said Athetoid CP.  I don't really know or care what that means.  I can tell you about Lauren and that will give you a better idea.  She is very low tone, for the most part.  Sometimes her limbs get stiff if she is trying hard to do something or really excited.  She has difficulty holding her head up, until her first round of 40 she could not push herself up onto all fours, or into sitting, nor any pulling up to stand.  She's mentally 100%, but she is hard to understand sometimes, they say do to the low tone of her neck muscles.  Just from what you have said about Tyler, they sound similar.  Our insurance has yet to help cover the treatments, but my husband's company just switched to UHC, so I will start trying with them.  We are still on a wait list for the children's waiver to get back up medicaid for Lauren.  Our tx run $130 per treatment.  For this session of 40 there is a donor who has seen Lauren's progress who is paying for all but $50 a treatment!  The treatments are an added expense, but we have found them to be VERY worth it.  We did not see a lot of results until 3 months after Lauren had completed her first round of 40.  She is in a regular, professional grade chamber on 100% oxygen.  Any questions, or if you would like some video of Lauren just to see some of the improvements, I would be more than happy to send them to you.  You can email me on this group or privately.

Good Luck

Sally

mom to Dylan 16, Lauren 7 CP, and Sage 2 1/2