United Brachial Plexus Network, Inc.

I have two daughters, ages 4 and 8, who have both incurred BPI injuries due to a car wreck. My four year old had C5, C6, C7, and C8 avulsions. My eight year old had C5, C6, and C8 avulsions. They have both had primary surgeries in Houston, however, while we are waiting for the results of their surgeries, the bones in their arms just continue to get thinner and thinner. My four year old, who likes to run everywhere, fell with very little force and broke her arm. The orthopedic surgeon we are seeing is very concerned about the likelihood that breaks will continue to occur until we begin to see results from the nerve grafting and the brain knows to make new bone in that arm. Is there anyone out there who has experience with this issue or knows anyone who can advise me in this matter?

Thanks so much,
Paula

Paula,
I'm sorry to hear about your two daughters. That's got to be really tough. I know their injuries are both tramatic bpi, but I would bet that you will recieve more information on the General Message Board. I believe that far more mothers post there regarding children with bpi. Good luck and God bless...Karl...

Paula, I am so sorry about your daughters. One time when I went my Ortho he said to one of the students that bpi bones shrink.

First of all, I am sorry to hear about your daughters. Somehow I missed this message a few weeks ago.

I am obpi but have osteopenesis in my arm, the bones are much smaller and apparently less dense. I have had problems with fractures over the years.

I am now 50 and post menopausal. My primary care physician is concerned about further bone loss and has started me taking a hormone called Miacalcin. It is a fairly new drug that has had great results in actually building bone. I also know there is another drug on the market called Fasonex (or something like that). I do NOT know if either of these can be used on children but I wanted to inform you about them. There is hope in the future for rebuilding bone. We are only at the beginning of this kind of research, I believe.

There are side effects to the Miacalcin but they are wearing off over time. I have only been taking it for the past 2 weeks and the effects are lessening.

Anyone else out there using Miacalcin?

Nancy Birk
UBPN President

To treat osteoporosis in the arm, I am taking (orthopaedist prescription) Idéos (calcium carbonate) and Fosamax 70grms (sodium). I make a control of osteoporosis every year, an I see good results.

Paulo
my wife takes fosamex for ostioporosis. her primary physition said that it was the only product that would actualy rebuild bones. The other treatments help to prevent further loss only
red

Miacalcin is new. It also does rebuild bone. Fosamex was the other drug whose name I messed up! I think it is a pill taken once a week -- is that correct?

Nancy

Hi Paula, sorry to hear about your daughters' injuries.
I have broken my BPI arm after the accident (4 years+) after a fall. The x rays showed the bones were indeed thinner in my arm and hand than they used to be. Also I slipped and fell on my kneee and broke the kneecap, and punched a 'test your strength' ball machine and broke my knuckle in the injured hand, doh! won't try that again! I now take calcium tabs with vitamin d, and eat plenty of dairy products to help replace the calcium. It seems my bones were all less dense and calcium was being leeched from the other bones as well as in my injured arm. Hope that helps, it is a genuine concern for BP injured people, good luck :O)

Dave

Nancy
thats the stuff

It is called fosamax taken once weekly. To me it is a miracle pill.