Update

Jack had an appointment last week with a pain management doctor. The appointment went pretty good. We have started a pain medication at night. I have been very leery for years due to his age of putting him on pain medication. I will say it was a hard decision. He can have it three times a day and I agreed to only one time a day. I am giving it to Jack at bedtime with a couple other medication he takes. I thought this would be the best time since he wakes up with pain and tetany mainly in the middle of the night. He has been on it since Friday. It seems to be going OK. He has still complained of pain but has not woken up at night with any pain since friday. He has had one tetany episode at night. That is painful and wakes him up.
The new thing since giving the pain meds is the last three mornings he has complained of pain. He usually doesn't complain on pain in the morning. It is usually later afternoon, evening, or middle of the night. This is something new. I will keep monitoring him closely. We go back next Thursday to follow up with the pain medicine doctor. He is also getting a unit for home that he will hook up to when he has pain that will send electric currents to the muscle to help with the pain. This is all very new but I feel worth trying. There is no cure or prognosis for Jack. He will most likely have to deal with pain all his life. The specialist in Cleveland thought it be a good idea to get Jack started with a pain management doctor now. Keep praying for Jack. It is through the power of prayer that Jack is as strong as he is. We strongly believe that all the prayers for Jack help him.