Sunday, July 12, 2009

Osteo- What?

OSTEOPENIA-Osteopenia is a condition where bone mineral density is lower than normal. It is considered by many doctors to be a precursor to osteoporosis. However, not every person diagnosed with osteopenia will develop osteoporosis. More specifically, osteopenia is defined as a bone mineral density T score between -1.0 and -2.5.[1]

So, this is our latest news, received on Friday afternoon. Faith went for an xray of her foot b/c she was having foot pain for over 2 weeks, after a stretching session. No fractures or swelling BUT they discovered this abnormal bone formation. I got the call from our nurse practitioner, who was perplexed by this discovery. Well, of course, I went into panic mode! I hung up and called Shriner's immediatly, got an appt. for Monday morning, first thing. Then I started researching. Turns out that children with CP, children with CP who have seizures, children with CP who have seizures and are on antiepileptic meds and are not weightbearing are up to 6 times more likely to develope this condition. Now it also said in journal after journal that children in these conditions should be monitored closely w/ xrays and routine bloodwork. Now, you ask, has Faith been monitored for this by ANY of the more than 30 specialists she sees? NO<>NO!!!
Never even been mentioned to us, and believe me, I would have remembered! So we are off to Shriner's in the morning, to see what they have to say about this new development. I told my husband that we have to find a new neuro. b/c we just are not receiving the appropriate attentions or concerns for her conditions. This really should have been a case where Neuro was warning us of this potential AND testing her since Tegretol is one of the specific meds listed that can contribute to this. Faith has been on this since birth. I guess it really should not be a surprise since this is par for the course when it comes to her treatment in all areas.
We also had a really bad experience today with a car dealership in Atlanta, I will post more about this later. Just a great ending to a "WONDERFUL" weekend.
Please keep Faith in your prayers.