Today we headed to Children's National in DC for a bone scan. Or what I thought was just going to be a bone scan but Brayden's neurologist for the ketogenic diet emailed us (at 1:00 a.m., not sure she ever has down time) to let us know Brayden would also see the endocrinologist.
An appointment time of 7:30 a.m. means we left the house early.
Lots of paperwork when we arrived, then lots of questions (I have mastered the Reader's Digest version of Brayden's medical history) and talked with a few doctors. Passing one of the doctor's in the hallway, she sat Brayden up and felt his spine...then ordered spine x-rays as well.
X-rays are always a painful task for Brayden, his body never is in the proper position for the x-rays and getting him in that position is....well, a bad experience for all.
After the x-rays, Brayden had a bone scan, targeting his legs, hips and spine.
Scans complete so we headed back to the examining room. Then we were called back to get more images from the scan (we have learned that when they want more, it is rarely a good thing).
Thankfully the scans went much better than the x-rays, the table is much softer.
Finally back in the examining room, waiting. Then five doctors came in (again, rarely a good thing when that many appear...well one was a med student, there because this was an interesting case).
First the orthopedic surgeon spoke, explaining their conclusions for the tests and labs.
Brayden's bone look bad, really bad. Really, really, bad bone density. There is a chart with a curve (imagine the growth chart for children), they like for children to be within a range of that curve. Brayden was not only below the healthy range, he was so low that his bone density does not even register on the chart. It is bad.
It doesn't stop there.
Brayden has several compression fractures in the lower part of his spine, where the rib cage meets the spine. And it does not seem to be getting better, the doctor made it seem like it could get worse.
There is still more.
Brayden left hip is not looking good (and to jog your memory, his right hip/leg has been the problem).
The orthopedic surgeon said, "If there was a surgery we could do to help, it would be like operating on butter." His bones look bad enough for her to compare them to butter.
Time for the endocrinologist to speak. Basically, we need to get his bones more, more of everything. This doctor will talk with Brayden's ketogenic diet team to look closely at what his diet includes. Brayden's seizures medications as also a problem for bone density.
Then the orthopedist dr spoke up again, "I am going to be blunt and harsh. He needs to come off the diet." We had more discussion about better positioning, vitamins and how/when their team will talk to the ketogenic team. And that awful "quality" of life discussion.
We left the 4 hour appointment with many questions and concerns. How much pain does Brayden deal with everyday? How fragile is he? How can we increase his bone density? What will happen to his seizure control if he comes off the ketogenic diet? Prior to the diet, Brayden's seizures were terrible, life-threatening terrible and happening constantly. How bad is this?
I see his little body so differently than I did just hours ago. His bones are like butter.
The game plan thus far:
- This team will talk with the ketogenic team to discuss options (not convinced they are giving any other option than coming off the diet and replacing it will more seizure medication)
- Check in via email over the next couple of weeks
- Order him more Vitamins and positioning pillows
- More blood work in a couple of months
- See this team in three months for another scan (they usually do scan every 6 months but they are worried he is losing more bone density and/or if he comes off the ketogenic diet soon, then there could be a change)