franw/hope wrote:
> 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
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