Oh, Tammy, it really sounds like your son and your family are just really going through the ringer. :( I'm so sorry. Thank GOD you had the presence of mind to assume leadership of his treatment and advocate for better care. My hat is off to you. This story is just unbelievable to me, and it really gives us all a lesson to be active participants in our own healing and the healing of our loved ones. You can't just blindly swallow what's being fed to you, and trust that your medical "helpers" are qualified, equipped, and/or motivated to actually help you.

You're a wonderful mom, Tammy, and I feel sure that, now that you've got some good doctors looking out for him, your son will heal quite nicely and they'll help you tackle the next challenge. It's so crazy that you have to go through this, but this update sounds really, really positive. I'm really happy for you guys. :grouphug:

Tammy, I just think the world of you, I really do. :)

Tammy,wow,your boy sure has had it ruff. When I read about the high arches I became a little concerned.You see one of the most prominent symtoms of my muscular distrophy is very high arches. The name is "Charcot Maria Tooth Syndrom" and it is also neurological.My father was a OBGYN but unfamilar with this as was the ortho doc he sent me to when he was concerned as to why I walked funny. It took a neurologist to figure it out.I hope your son is spared this as he has enough to deal with. My son said to tell you to not let him scimp on his physical therapy when it's time as he did.He still has one leg thats weaker then the other. :o :)

I'm so glad that you were assertive and were able to demand the best for your son. It's scary to think that the military docs said your son's feet were "normal." I'm praying that everything will be okay for him.

After reading your story, I told my daughter (who is in the Navy) that she needs to wait until she's out of the Navy to have a baby. I don't think I want my grandchild being born in a Navy hospital.

Pam, that is the same thing that another doc mentioned to me before. Go figure that they did not mention that it was a symptom of muscular distrophy. They did mention that it could affect his hands also. They made it seem like it was no big deal. I hate military doctors. I'm really losing faith in them completely. I've not yet researched that yet. I think I am afraid. Actually, I know I am afraid. I will know more once I get to see the neurologist with him. Whatever it turns out to be we will face it head on and do the best we can. He's a very strong boy both physically and emotionally. I hope that I have instilled into him that when you fight and work hard to beat something you can. Three years ago he saw me turn into a person he did not know. I could barely remember anything. I could barely remember his name let alone what day of the week it was. I was very, very sick. I thought I was dying and soon learned I could die if it continued on. To make a long story short my liver was poisoning my whole body including my brain. To this day there was never a difinitive diagnosis to what was causing it. All I know is that I moved from where I was and the person I was with and it started going away. It took me over a year to recover. I still have terrible short term memory and have lost some of my long term memory. Alex helped me through that and I fought like a big dog to recover from that. I hope he can take that and see that although life throws you some really bad things to deal with you can get through them. The doc he is seeing now is straight up. I have faith that he will be forthcoming with me. I just want some straight answers. I hate the beating around the bush. I'm not going to fall out or faint if they tell me something bad. I want to be informed and even then I will research it further. Pam is that what you ended up having? You could be a really good source of info for me. Thanks Pam, you are the best.

Hey Sheila. My one year old was born in the hospital here and I had excellent care but that was luck. I just happened to get a good doc the night she was born. As for the prenatal care. It sucked!! If I was not so informed they would have done things to me that endangered the life of my baby. I actually had to tell them a couple of times that no, you are not doing that to me. They did not like that to much. For the most part I have lost almost all faith in the military medical care where I am at right now. I guess that is not to say that it is that way everywhere, but I sure would be leary now anywhere I go. I refuse to be their research animal anymore. I am human and have thoughts and feelings and they need to freaking realize that. Sheila, from what I understand with tricare you can go to a civilian doctor with ease. I am checking it out further. I will let you know. I want my one year old to go to a pediatrician in town as I don't trust them anymore to look out for our well being.

Heya Sarah, I guess I've never been one to go with the flow and not question..hehe..It has gotten me in some trouble sometimes to. I can't but help question many, many things about life and the world in general. I advise anyone here that if their gut is telling them something does not feel right with what they are told it probably is worth questioning further. I've learned that I don't give a flip what those people think of me. What is important is that my son gets the best care possible. You always say such nice things Sarah, it makes me feel all warm inside. :)

Yes Tammy,I have "Charcot Maria Tooth Syndrom". Only someone who is a quack would tell you it's nothing to be concerned with. If you want to talk I am sending my phone number to you though your "private messages" here.When you are ready to find out about it and discuss it with someone call me.Yes his life will change but it certinly isn't over and you found out about it early which is good.The "Universe" must of brought us together because when I think about all the coincidences that have brought us to this point it's amazing.Your son is the first person I've known of with this disease besides myself. I was lead to believe it's fairly rare.Let me reasure you by saying I have led a full ,rich life and this disease ,in the sceam of things, has not prevented me from doing what was most important. Love Pam (PS ,How wierd is this,I was born 9/14 and I just saw that you are 9/10.) PSS- Tammy,I just remembered there are certin meds he needs to stay away from because they've proven detramental to those with this syndrom and you need to know what they are.

I got your pm Pam. Last night I decided to educate myself on it and did some research online. It really looks like that is what he has. It would explain many many things, one being his overly excessive "clumsiness". That has been going on for years and I just though that he was just not coordinated. Then about two years ago when he started to go through puberty his pinky toe started curling up to the top of his foot! I thought, "wow, he broke his toe or something". Well, I think I now have a better understanding of what might be going on. I can now go into the doctors office prepared if that is what they ultimately tell me it is. From everything I read it is hereditary, but I have yet to figure out who else has had it. But, also, they say that each case varies and sometimes a mild case goes undiagnosed. I've always had high arches and problems with finding shoes that did not hurt my feet, also, over the past few years I have noticed a continuing weakness in my hands. Doctors contribute this to the psoriasis that I have. I see now that maybe that may not be the case, and I might be the carrier also. There are so pretty scarey statistics I read. If Alex does have that he has a 50% chance of passing it to his children. These are things we will just have to deal with as they come. I am not going to freak out. We will just deal with it as it comes. I plan on getting myself into the doctor asap. At least I can get this ball rolling. So, we shall see how this is going to go. The best I can do is get the process going and find out for sure what is going on.

I'm almost certain that you and I being on the same board is no coincidence. I believe all things happen for a reason and this being one of those times. I'll know more on Thursday or Friday when I take Alex back for his post-op check-up for his foot. I am almost sure that the doc is going to refer us to a neurologist which is good. I want to continue to go through the Children's hospital. I trust them so far.

Tammy,they will want to do a EMG. It sounds like you may also have this.You will want to get leg braces. They have been wonderful for me. I feel so bad for your son. People used to tell me I was lazy or clumsey because I couldn't keep up with them.Finding shoes has been ****. I can only ware flat shoes and most everything has some kind of heels.

Tammy--I'm glad to hear your son got the surgery he needed and is on the way to recovery. Keep us informed about everything else.

Tammy, I'm happy to hear you've found a caring doctor and your son is on his way to the right treatments.