Mom looking for advice

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Mom looking for advice

Post by marieke »

I did, but you knew that already! :)

Good luck, let us know how it goes!
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
erica
Posts: 83
Joined: Fri Nov 09, 2001 3:47 pm

Re: Mom looking for advice

Post by erica »

Hi!
I had a tendon tranfer from my lower arm to my four fingers in my bpi arm. It was done by Dr. R. Harrop in Calgary Alberta. He actually went to school with Dr. Clarke. He does do BPI surgeries. Also I know a family in Calgary who appealed the alberta health care and had surgery on their then three year old with Dr. Nath in Texas. That was 11 years ago.
Erica
trp314
Posts: 12
Joined: Thu Dec 02, 2010 6:44 pm
Injury Description, Date, extent, surgical intervention etc: Kelsey was born on August 29 2008 and has a right BPI. We have gone back and forth from NY to see Dr Kozin in PA. He is AMAZING! Kelsey got a tendon transfer and shoulder release surgery on October 26th 2010 and has just recently gotten her cast off. She is now externally rotating and supinating....shes NEVER done that before!!!
Contact:

Re: Mom looking for advice

Post by trp314 »

I took my daughter to Shriners in Philadelphia to see Dr. Kozin. He was amazing. I have seen many people there from different countries. Please check him out, I couldn't have asked for a better Dr.
bpiparent
Posts: 17
Joined: Mon Jan 24, 2011 2:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter born 5/10, avulsion, tearing and stretching, 1st surgery 9/10.

Re: Mom looking for advice

Post by bpiparent »

Hope this helps but Shriners, at least the one in PA I am pretty sure they do not charge families for services. They charge your medical if it pays it pays, but my understanding is that you are not going to be charged. Check the website. There are a lot of posts about Dr. Kozen (some other parents should know how the insurance works there) we saw him for a consultation and he gave us a glowing recommendation for the Dr. we were scheduled to have surgery with. I have heard wonderful things about him and if he did not recommend the other Dr ( which was much closer to home) we would have had surgery with him. I wish you well.
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

Thanks everyone for all the wonderful help and advise. We just sent the video of Damian to Montreal to be reviewed so hopefully it won't be long until they determine if there is anything they can do for him there. We are definetly still keeping Dr Kozin in mind as we have heard nothing but great things about him. I will be sure to post when we hear back.

Agains thanks to everyone the support is great.
Damians mom
Damians Mom
Damians Mom
Posts: 11
Joined: Tue Oct 05, 2010 10:38 pm
Injury Description, Date, extent, surgical intervention etc: My son Damian is 7 1\2 years old and he was a large baby 10 lbs 15 oz. He has a brachial plexus injury due to being pulled out with extreme force during birth. We have received very little encouragement from any of the doctors that we have seen here in Canada. They all said the same thing that he basically has to live with th einjury adn that nothing can be done to improve his range in movement. As I started to look into Doctors in the USA they seem to be doing amazing surgeries to improve renge in movement in many children. Since we are from Canada I have no idea if surgery is even an option in the USA as we would have no medical coverage since we are not residents of the USA. Any info would be greatly appreciated regarding doctors in the USA and Canada.

Thanks
Damians Mom

Re: Mom looking for advice

Post by Damians Mom »

We received word back from the Dr in Montreal and she stated that she is satisfied with Damians range in movement that she saw in the video that we sent her and she would not consider surgery at this time...I don't understand how they can decide that THEY are satisfied with his range in movement, when it should be him and his parents that decide if they are satisfied and should we really say we are satisfied unless we try. I feel that if he has the chance to gain any range no matter how well he functions now, shouldn't he be given the choice and chance. She is still willing to consult with us so we will still be doing that and I will also be forwarding his files to Dr Kozin to review.
Damians Mom
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