Originally Posted by Scared Mom
I'm am new to CRPS. My daughter was diagnosed just under two months ago so I have spent a great deal of time reading up and continuously being shocked at what I have learned. I had never heard of CRPS nor had I known anyone who had it (or at least was never told).
Very quickly, my daughter is 13. She broke her leg 8 month ago. It didn't heal in the expected time frame. She had considerable pain....mind you it was a bad break (spiral into the tibial joint at the ankle). She also blew out her knee and hip at the same time. Was told we wouldn't worry about those other injuries at the time because she had to rest for the fracture to heal and hopefully they would resolve themselves. The hip is much better but not the knee. Anyways...I'm jumping ahead. 6 months post break, her pain skyrockets. She is waking up every night, her lower leg and foot are swelling, they are cold and turning blue and purple. The Dr. identified it immediately. He prescribed Gabapentin 900 mg and Elavil 225mg. Of course, I thought he had gone insane with those kind of doses for a child. Told me to work up to them. It wasn't until after I read up on CRPS and spoke to friends in the trauma field that I relented and agreed to medicate her.
The pain is better although she still does wake some nights from it. They tried cortizone in the knee and guess what? The ankle area flared up!
Just continuing with therapy. Tried some anti inflamitories but they are killing her stomach. She is gaining considerable weight from the other meds as well.
I am terrified for my daughter and what her future will be like if we don't get this under control.
Any suggestions and advise is welcome. Also, just curious....does CRPS elevate pain in other parts of the body? For example, she has been suffering from a sore throat this past week. Most likely a virus. But she seems to be in more pain with that than what is normal. Any relation?
Thanks and God Bless all of you who are suffering
Dear Scared Mom,
I am so sorry to hear about your daughter. I am very familiar with your
feeling of fear when it comes to RSD and a child. My adult daughter has
Rsd as well and although she is an adult there is no age cut off date when
it comes to mothers and that protective instinct we have for our children.
There has been many a time as I tried to educate myself about RSD I would
think I was truely living a nightmare and my fears would become so intense
I would have to put it all aside and take a breather. However as time passed
I was able to quickly take up the search for solutions.
Both you and your daughter will get through this. You will get through this
through the power of the love inside you. Each day that power and
confidence will grow. Meanwhile Catra 121 gave you some excellant
advice. I do not know the background of the Docs now treating your
child but programs in various hospitals who work with Children who have
RSD are a plus. You have two good things going for you, the high rate
of success with children with RSD and a fairly early determination. However
time is of the essense.