Hi I am a mother of a 7 yeaar old that has a brachial plexus injury from birth. Damian was a large baby weighing 10 lbs 15oz at birth. He got stuck during birth and had to be pulled out with extreme force. After birth he had no movemennt in his left arm and we had tp pin the sleeve to his chest to hold the arm and reduce pulling on the shoulder. We were told that he would regain movement and everything should be fine. Well after several months some of his movement came back but it was far from normal. We told all the PT, OT and doctors that we were willing to travel for treatment as you would do anything for your child. All they advised us to do was to continue therapy and that everything should be fine. When Damian was 18 months old we received a call from the PT saying that she had found a doctor in Toronto DR Clarke that would evaluate Damian. We travelled to Toronto 2 months later as we are from PEI Canada and when we met DR CLarke he stated that surgery was not an option for Damian because surgery would have to done between 3-9 months of age. As a mother my heart sank. So Damian is now 7 years old and we have had no hope from any doctor we have seen in the past that Damian will regain any more movement in his arm. I started to reserch different DR and procedures that are being done on children with BPI and am amazed at the stories that I have read.
I am looking forward to any information that anyone could give me wether it is Doctors in Canada or USA (not sure if this is an option as we are not residents of the USA, but willing to consider anything).
Thanks
Damians Mom
Mom looking for advice
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- 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
Mom looking for advice
Damians Mom
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- Posts: 57
- Joined: Fri Jun 04, 2010 11:47 pm
- Injury Description, Date, extent, surgical intervention etc: My son was born At Parrish Medical Center in Titusville,Fla.After becoming stuck in the birth canal A doctor(any doctor)was paged 911.Believe it or not There was NO Obgyn on staff to preform a delivery,so a midwife and one other nurse had to deliver my son.He suffered 2 torn nerves and came out lifeless...
We see Dr.Grossman In Miami along with Dr.Price.He has had a nerve transfer in 2010,A round of botox and a recasting in 2011 and now we will having another round of botox in which we pray no cast will be needed.He is a smart handsome little boy who has come so far and everyday I feel he's improving! - Location: Port Saint John,Florida
Re: Mom looking for advice
Dr.Grossman has been great....
He's in Miami,fl
He's in Miami,fl
Life is a dance~We will all learn it as we go
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- Posts: 9
- Joined: Wed Jun 23, 2010 7:25 pm
Re: Mom looking for advice
Hi there.
My son Garrett is also 7 yrs old, he has a left arm brachial plexus injury from birth too. We are near the Detroit, MI area and the only surgery he has had was when he was 4 yrs old and it was at U of M Childrens Mott. U of M Hospital has it's own Brachial Plexus group, with a board of different doctors and has support groups for kids too. Garrett went to his first BPI Day Camp this summer and loved it. Not sure if this is an option for you, but it may be closer.
My son Garrett is also 7 yrs old, he has a left arm brachial plexus injury from birth too. We are near the Detroit, MI area and the only surgery he has had was when he was 4 yrs old and it was at U of M Childrens Mott. U of M Hospital has it's own Brachial Plexus group, with a board of different doctors and has support groups for kids too. Garrett went to his first BPI Day Camp this summer and loved it. Not sure if this is an option for you, but it may be closer.
- Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: Mom looking for advice
Hello. I too am a Mom of an injured child. She will be 8 years old in a few weeks. It saddens me to hear the same type of stories over and over again such as yours. There are many fine doctors available in the United States. Please check out UBPN's medical directory for location, contact information, and some of them have answered a questionnaire so you can get an idea about them. Whether they will treat your child based on the fact that you are not a US citizen, just ask them. I would surmise the answer would be yes, but simply ask them and be sure before making a trip.
http://ubpn.org/index.php?option=com_php&Itemid=118
Best wishes to you and your family.
Tanya in NY
Amber's Mom, ROBPI, almsot 8 years old
http://ubpn.org/index.php?option=com_php&Itemid=118
Best wishes to you and your family.
Tanya in NY
Amber's Mom, ROBPI, almsot 8 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
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- 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
Just wondering if anyone from Canada has been treted in the USA, and what doctor they have seen? I am looking into
Dr Kozin as he is one of the highly recommended doctors and it is not that far of a travel. My concerns are what the cost of the treatments or potential surgeries are going to be since we are Canadian residents.
Dr Kozin as he is one of the highly recommended doctors and it is not that far of a travel. My concerns are what the cost of the treatments or potential surgeries are going to be since we are Canadian residents.
Damians Mom
Re: Mom looking for advice
Shriners Hospitals treat residents of the United States (including Puerto Rico), Canada, the Republic of Panama and Mexico. You should be fine!
Kate
Kate
Re: Mom looking for advice
Try Dr. Waters at Boston Childrens In Boston MA.
"Pretty close" to PEI.
Baka
"Pretty close" to PEI.
Baka
- 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
Check into the Shriners Hospital in Montreal, I had surgery there when I was 14 (I live in Montreal,QC). Also try Toronto's Sick Kids again, as this time it would be for secondary surgery and not nerve graft (which is what is done when they are babies).
And as far as I know the USA/Canada Shriner's is no longer taking international cases due to the economy. This may have changed though in the last year. But having the one in Qc is an option for those in Canada.
And as far as I know the USA/Canada Shriner's is no longer taking international cases due to the economy. This may have changed though in the last year. But having the one in Qc is an option for those in Canada.
Re: Mom looking for advice
I'm pretty sure no more "international" cases means outside the standard Shriners service area. They used to accept patients from the Ukraine, for example. But Canada residents are still eligible, according to the Shriners website.
Kate
Kate
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- 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
Thanks for the info, I will keep evryone informed on the progress.
Great to know that there are so many people out there that are willing to share great info and give support.
Thanks again
Great to know that there are so many people out there that are willing to share great info and give support.
Thanks again
Damians Mom