Hi everyone, I was so thankful for the news about the findings of folks phosphorous levels decreasing and deficient bone growth that it threw up a red flag for our 12 year old that has not grown in 3 yrs. Jonathan was dx 10/03 and also has had a femur head had deteriorate and had it put back into place with hardware to grow back rounded. This was in 3/05. He is having this hardware removed a year and 5 months later (sept 7th). The femur had grown back. We are very Thankful. Although doc odered a bone density test. We rec'd the results today. Jonathan is 3 years delayed in his bone growth and is also osteopedic.
So off to a Endocrinologist the 20th. With hopes that there is some help. Jonathan has wondered around his friends why he is still the size of a 9 yr old. It breaks our hearts to see his face of discouragement. Good news though on top of this. Jonathan's PCR came back 3/100,000. That is the lowest it has ever been. We have asked about lowering his dosage..but the answer still remains no. God Bless each one of you... fran son: Jonathan age 12 dx 10/03 600mg --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
