Recently we have been visiting a neurologist for Patryk to figure out this mysterious muscle thing he has going on. He was originally diagnosed with Cerebral Palsy, but CP doesn't get worse, and this had. Walking is painful and we have to use a wheelchair when we go out (like to the store, for a walk, through a museum, etc.). We finally found a fabulous neurologist that was able to sit down, and actually LISTEN to what we had to say!! ***shock of shocks*** Pat was put on a muscle relaxant (baclofen), and sent home. I called a week ago, and asked what are test results were (doc ordered lots of tests), and his results were that Patryk has Spastic Paraparesis. It's a progressive disease, often called Spastic Paraplegia. Makes so much sense. Since it's usually diagnosed in people in their 20's-40's, having a 4 year old diagnosed with it is debilitating. We need some prayer right now, since DH and I are frightened for our boy, and extremely sad that he will have this pain for the rest of his life. If you can, keep us in your thoughts as we adjust our lives and help keep above Pat's pain. Thanks!!!
I am so sorry he will have to deal with pain for the rest of his life! At least you have an accurate diagnosis so you know how to help him. I will be praying for your family!
I just saw this. Praying for all of you especially Patryk. Are there any specialist out there who can help him with this and manage the pain for him? It is so sad that he has been going through this.
MsChickie, he is seeing a neurologist right now, and we are increasing his muscle relaxants bc we can already see it progressing. He complains often of pain and cramping. He's taking it really well though. Thank you all so much for the prayers! It gives us strength to know so many people are behind us, and behind Paddy.
