Hey all Some of you may remember I posted here a while back about my youngest, Caden, having tremors when waking up. well, its not just upon waking up but often...mostly when working with his hands and small things i.e. putting one thing into another like a cap on a pen. His hands and arms go spastic and he shakes a lot. He is also 2 in November and not yet walking. Wont even try. He can walk along the couch, pull himself up the couch and rarely will walk with you holding his hands. Yesterday he was very enthusiastic about walking with my sister in law. When he does attempt to walk most of the time his gait is wide, and he does not bend his knees and step forward. It is more of a scissor walk. He also gets very wobbly and shaky when attempting this. That all being said, which I am sure I have missed some symptoms, Caden saw a neurologist on the 29th. He is having bloodwork done along with a brain and spinal MRI. Covering all bases, looking at everything. One of the things the doctor mentioned they would be looking at is mild cerebral palsey. Being the only thing to go on I have been researching and am pretty convinced that he has some form of this. Possibly Ataxic cerebral palsey which only effects less than 10% of all cases. It is a brain injury caused during pregnancy or delivery...although possibly from a head injury afterwards. The brain is injured at the cerebellum, which controls muscle movement. You can look up the symptoms if you are interested but most of them match to a T. As a whole life would be slightly impaired for him. He may have physical therapy to go through. Possibly leg braces for a time. He would struggle with things like buttoning a shirt, writing with a pencil, zipping up his jacket. Best thing is that it is not progressive, and that if this is what he has, it can only get better with therapy. On top of all of this he also has congenital exotropia. His right eye tends to turn outward. This must be fixed by eye surgery, realigning his eye and then he will have to wear an eye patch to retrain the brain to use this eye correctly. If ignored the brain will see this eye as "broken" so to speak and will start to ignore the eye. Surgery and eye patch therapy will fix the problem and he will be fine. I have also read that children with cerebral palsey can have this problem....possibly caused by the same injury to the brain. The eye does not worry me. The surgery itself will be difficult for me but handle-able. The cerebral palsey has me worried. Obviously I cannot be certain until all tests are confirmed. I know I can overall handle it. His life would only be slightly limited and therapy may be necessary, but its hard to put the thought of a brain injury through my mind. My husband is even worse than I am. Overall he is such a smart and sweet little boy it hurts me to think about the struggles he may go through in life. Add this to having a D child and life seems so overwhelming. I tell myself everyday that God would not give me something I cannot handle and being given these things just means taht I have strong enough shoulders to deal with it. But sometimes I just wish we could be that normal family where you dont hear of these kinds of things. Makes me wonder, whats next? Will Breck have something to deal with soon too?? Will my unborn child due November 3rd have something as well? Again I know I may be jumping the gun on his diagnosis but its hard to ignore the signs. All I ask is for us to be in your thoughts and prayers. Its all I think about and on top of everyday stress of life, which beleive me I have a TON (not going to go there!) it is very overwhelming. When I have the chance to sit and think, that is. Haha Thanks for listening to my story. In other news D life is going good. Has been a smooth transition into school, picking up right where we left off with her care, as if there was never a summer break. I thank God for the support we have from her school and community. Just yesterday Alli told me that her friend Mackenzie told her that her and her mom are trying to cure Diabetes. So sweet, the minds of children. What a blessing that is!!
Wishing you strength, love, and support as you go through this difficult time...and sending along my best wishes and prayers. Posted this once before on this forum...perhaps you'll find some inspiration in it... Good luck. Keep us posted.:cwds: A Dream By: Andrea Peebles I had a dream the other night it came to me so clear. I stood before the throne of God afraid to come too near. God said to me "I hear your prayers, there are answers you can't find, I asked you here to talk to me to help you ease your mind." I said "Well yes God, I'm disturbed about my special one, that punishment is awfully harsh whatever have I done??" God looked at me and shook his head and said, "You've got it wrong. I sent that special child to you because you are so strong. I searched and searched to try to find someone with love so rare, a mother so unselfish she could give that special care. Of all the ones to choose from, I think this I have done. A mother who deserved my best, an honor you have won."
Hope everything turns out for the best, but FYI, my oldest brother was engaged to a lady with mild CP, she was extremely intelligent, and lived on her own and did very well, oh she dumped my brother for a rich guy
I just read your post and I am so sorry about this. It does sound like Ataxia especially when you describe how your precious son walks. That would be the most tell tale sign. I do know that God will give you the strength and wisdom to know what to do and I will uphold your family and you and your soon to be born child in my prayers everyday.
thank you guys for your support, and thank you Julie for that poem....what a beautiful poem, made me cry like a baby but a good cry
Praying that you get a definitive diagnosis soon. My college roommate had CP and she was one of the most liked girls on campus.
