Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 I just wanted to tell you all Addie's neurologist called today and her blood test showed a positive for CMT 1A. What a hard day. I cried for like 2 hours straight when she was watching a movie. I definately don't want to freak her out about it, she is aware of it enough with me talking to my husband about it and my mom and such. I'm trying to come to complete acceptance and do the very best I can for her. Has anyone been trying Vitamin C for themselves or for their children? Right now that looks like the most hopeful clinically. I'm trying to decide if I want the baby tested in a couple months. I just want to treat her and this disease in the emotionally healthiest way possible I've just never been through something like this even though I always knew it was a possibility. I'm also scared about how severe it will get with her being only 3 right now. Send us some good prayers and karma and such. Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Amelia, I am sorry that you have be going through this. There is much success with the Vitamin C and I am sure many will respond with their positive feedback. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hi Amelia, I know this is hard, boy do I know. These thoughts helped me cope and still do on days when I need them. Today is the same as yesterday. The test results have not changed your child. Your daughter is still a happy healthy amazing year 3 yr old. You don't need to worry until you have something to worry about. Today everything is okay, it is the same as it was before your phone call with the doctor. Amelia, you are not alone and neither is your daughter. We will be with you in spirit to help you get through this , you will remain strong for your baby and little girl. Everything you are feeling is normal, I cried way too long. I actually grieved for Adam when I got the news that he had CMT. I felt like my son died. Baby Adam was so strong and FAST. We knew he would be an amazing sports star. He loved balls, climbing and no one could catch him. The new Adam is not athletic and not fast but wow what a wonderful kid he is. He volunteers in the mentally disabled class. The kids he helps with love him. They are always excited to see him. He told me that these kids don't ever have anyone to sit and talk with so he takes time to listen to them and be a friend to them. When they are hurt or scared they ask for him. The special class teacher told me Adam is priceless to his class. I don't think the old Adam would have time to touch other lives if he was out on the sports field all day. I have hope that our kids will see a treatment for CMT. Then they will have the best of both worlds. They will be kind, understanding and compassionate to others and they will appreciate every moment of life without CMT. Our children are very lucky to be able to know both worlds. Today everything is okay. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Hi Amelia, I've started this response several times, and just couldn't seem to get it worded right.... I have been in braces since I was 5 and spent years listening to the doctor's puzzle over why I was so severely involved (Long before they realized there were so many sub-types) and then I watched them shake their head's in amazement at the things I was still doing (I broke 2 sets of AFOs in under a year " hiking " . Now I am happily married doing a job I love and think life's pretty good. In a rambling effort I share this, grieve and then move on -- CMT's not the end of the world and I've discovered working in the medical field that I consider myself lucky it's " only " CMT, your Addie will accomplish whatever she sets her heart to with your guidance and nuturing, the best thing my parents ever did was refuse to let me see myself as different and adjust any expectations they had of me BUT my mom always fought for what was right for me (w/the schools especially). 3 is very perceptive, if she's as aware as you say - just be honest w/her, answer her questions as best you can but here too " I don't know " is an ok answer - don't hide it from her. My daughter (yep against all " outside " advice I had a child) shows no symptoms and she's 20 - she know's it's still a possibility in her life but doesn't dwell on it - and no, I've never had her tested in anyway and she's at peace w/that decision. And understands the genetics and risk of this affecting any children she may have. If it gives you peace, have the baby tested, otherwise just plug along at full speed. If you ever want a " childs " perspective, feel free to email me. Lots of positive energy and prayers your way!! My great-grandmother's name was Amelia. Mine's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Amelia - There is no good response here. I know whe we received my son's diagnosis I immediately wanted to know what was in store for the future for my child and no one had any answers. It's a couple of years later and I still have no answers, but we're learning to live with things as they develop, day by day, get support where we can, and be honest with ourselves and our son. What wrote in her letter was very insightful, I don't want to repeat her points but emphasize them. Your daughter is still the same person, but now you can be prepared for physical issues. Take care, Jim Quote Link to comment Share on other sites More sharing options...
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