Today we went back to DuPont for a follow up with Dr. M. It was a great visit. The x-rays were impressive, just as impressive as the originals. We will continue doing everything we have been and go back in July.
When we got the report from Dr. M after Ian's surgery, he informed us that Ian's bones were weak. Because of that we spoke with one MD, who works with people with short stature but not with people who have bone issues without short stature. He recommend we see Dr. B. So today after seeing Dr. M, we had that appointment. It was interesting. We learned that based on Ian's history, he most likely has low bone density (childhood osteoporosis). Ian has 3 out of 6 risk factors.
*Disuse: Immobilization (lack of weight-bearing exercise; wheelchair bound)
*Long-term steriod use
*PPI (proton-pump inhibitor) used for GE reflux
So what can we do about this...
1. Eat foods high in calcium (milk, yogurt, cheese)
2. Use those bones! Get on your feet.
...if able: weight bearing exercises using walkers, gait trainers, transfers
...standing exercise: 30-60 minutes daily
...increase physical activity, such as walking, as tolerated
3. Sunshine exposure for vitamin D: 15-20 minutes daily. After 20 minutes in the sun, sunscreen should be applied.
4. If lactose intolerant:
...use lactose enzymes
...try hard cheeses and live culture yogurt.
In addition, add vitamin and mineral supplements to meet daily dietary reference intake (DRI).
So what we have decided is to add liquid vitamin D and calcium to his daily routine. We will be stopping the pediasue he has been using the past month in the hopes he will begin to eat a little bit more by mouth. Brian and I decided a while ago we did not want to do feeds through his gtube, allowing him to continue to eat by mouth. We will continue to check in with Dr. B through emails and phone while seeing him again in a year.
It was a great visit to DuPont today.