Tuesday, March 17, 2015

Bone Clinic

A warning for today (on St Patrick's Day):
A day of bone scans and x-rays, then meeting with a team of doctors.

Thankfully Brayden's bone health has improved...he finally made it on the chart.  He is no where near a healthy bone level but he is improving, significantly from how bad his bones were a year ago.  Which means that coming off the ketogenic diet (for his seizure control) and the pamidronate (the bone infusion) has been worth it.  He will continue to get the bone infusion every 3 months, for an indefinite amount of time.  Since he had a pretty severe reaction to his first two bone infusions (fevers around 104 and uncontrollable seizures for a few days), he may continue to have a reaction after the next few infusions but his body should eventually acclimate to the infusion...but again, the bone infusion has improved his bone health so it is worth it at this point.      
As part of the bone clinic we also see an endocrinologist (as we do with every bone clinic; it is a team of doctors).  We have discussed with some of Brayden's other doctors, that we have started to notice signs of puberty (with out going in to too many details, he is basically "man-ing" up, down "there").  We are not really sure why or the ramifications of early puberty so they will at least start with lab work as decide once the labs results are in.
The bone team also wants his legs more active; have more impact to help with bone health and growth and help his hips (which always seem to be teetering on the edge of having problems as he grows).  He does a stander at school.  But the bone team want him to do more.  They want us to work towards this:  http://www.fireflyfriends.com/upsee.  It doesn't look like it is available in the US nor does insurance cover it...but we have some friends in the field of this type of equipment and looking to them for guidance.

1 comment:

Anonymous said...

i'm happy to hear brayden's bone strength is improving!
several of my students (here in NY) have the upsee. perhaps you can ask around at brayden's school to see if any parent's purchased it, so you can try it out. judging by brayden's size in pictures (i.e. tall) i'd worry the upsee would be a bit awkward for the adult. i've only seen small children (preschool size) use it, so i could be wrong - but, hopefully you can test it out.