Comment

Comment by Deirdre on March 27, 2009 at 8:18am

Heading to see the Heart Doctor in April to re-do a ECHO and sonogram and Has finally a neuro consult in May! We are getting somewhere! Heart doc thinks heart will be fine and that it is connected to a neuro something?
The Ped Doc was concerned about his little legs being so very stiff, tight hard to relax, and the tiptoe walk. I will keep you all posted thanks so much.

~Kristi - pretty cool you have a Keaton as well. Did you know it means "where the hawks go," in Old English? I chose and "en" ending so that he and his sister had similar letters in their names, Aneke' and Keaten (I am a dork I know, my husband thought it was so funny! It was almost "on" but I screamed "no wait!" to the nurse with all the paper work the day he was born, it has to be "en"!!! Laughs!

Comment by Julie Garcia on March 25, 2009 at 9:32pm

Deirdre,

Please keep us posted.

Take care,

Julie

Comment by Kristi Powell on March 25, 2009 at 8:35pm

Deirdre just saw your son's name is Keaten..funny, my younger son is Keaton. Not too many kids out there with that name, just thought that was cool! Also, I took my DMD child, Chrsitian to an orthepedic DR when he was 3 almost 4 because of the same thing you say about Keatens knees turning in and feet out. I thought it might be an orthopedic issue. Anyway, keep us posted!

Comment by Deirdre on March 25, 2009 at 5:36pm

Keaten just turned 3 on Sunday the 22nd. We are being referred to a Neurologist at Oakland Children's Hospital

Thanks for the info. I am beginning to wonder if when he was born with the cord around his neck, totally blue, and needed O2, if maybe it could be cause this stuff? we'll see. I looked up cerebral palsy and one of the tiptoe walking signs called equinus is just like Keaten's legs, how he stands with his knees turned inward, feet pointing outward, and places almost no weight on his heels when walking. I know I am on the right path and soon something will be found! Its just been finding the right doctors. He had been seen be "specialist" so they did not want to reach too far outside their comfort zone of knowledge.

Comment by Michelle Gonzales on March 25, 2009 at 5:17pm

Deidre,

How old is your son? I'm glad that you've found this site. It is full of information and help and advice from other parents who have children with DMD and BMD. The one thing that will determine for sure if your child has DMD or BMD and what deletions or duplications he may have is the genetic testing. It's a blood test that can take up to 6 weeks to get results back. Your pediatrician should refer you to a local neurologist. They will then take your son's blood sample and send out to a lab for testing.

On our Make A Wish vacation, we met two brothers who had Hunters MD, and they walked on their toes at an earlier age then usual DMD boys do. The youngest was 7 and his brother was 12.

I hope you get your answers soon!
Michelle

Comment by Deirdre on March 25, 2009 at 4:25pm

Thanks Kristi! His CK levels only ever reached into the 500's have not gotten today's yet.Yes I am very glad for this site. I am wondering if it is BMD? We'll see. I finally feel like I took him to the right person! The small community in which I live, has not many options.

At least we are beginning to press towards an answer...

Thanks again for the reply

Comment by Kristi Powell on March 25, 2009 at 4:10pm

Deirdre...I hope that it's not DMD, but IF it turns out to be this, then you have come to the right place! We are a big group of caring people whom we all lean on eachother for support. How old is he? Do you know what his CK level is yet? Does he have big calf muscles? Can he jump/ run? These are some "signs" if you will for DMD. When they tested my son's CK level at age 8 his was 19,000 so this may be something for you just to get an idea. Toe walking is also a sign, but can also be other things too. Hopefully you will get answers soon, at least you got a Dr that cared enough to investigate! Keep us posted on him and just know we are here for you !
Kristi