Hi. I tried writing this before but I got a message from the administrator that the post contained links to illegal or pirated software which is weird because I didn't put a link in my message. Anyway, my son Gavin was born in May and surprised everyone by weighing 12 pounds. Needless to say he has a moderate to severe BPI of the left arm. We have been doing OT once a week since he was 2 months old and ROM exercises daily. We just had a meeting with Dr. Nath who just looked at him and immediately said he needs surgery. It was a really weird meeting because he didn't touch Gavin's arm or even ask us to take his shirt off so he could see his shoulder. Not really sure of what I think about him yet. We met with Dr. Adelson at Phx Children's to discuss nerve surgery. He wants to wait about 6 more weeks to see if Gavin's movement improves any more before we decide on surgery. At this point I am a basket case! I cry all the time because I truly thought he was going to make a full recovery without surgery. I am desperate to get 2nd and 3rd opinions from other doctors. We are willing to travel. Does anyone have any names and locations of doctors and/or surgeons that they love. Has anyone been to the Shriners in LA? Thanks so much!
Jenn- Tempe, AZ
New to Site - Looking for support and advise
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Gavinsmom
- Posts: 5
- Joined: Wed Sep 29, 2010 6:55 pm
- Injury Description, Date, extent, surgical intervention etc: My son was born on May 18th 2010 and weighed 11 lbs 15 oz! Needless to say he got stuck as I was pushing him out and as a result has a "moderate to severe" BPI of the left arm. We are at the 4 month mark and have just seen Dr. Adelson, a neurosurgeon at Phoenix Children's, to discuss our options. We haven't had an MRI or EMG done yet. I am feeling overwhelmed and panicked about my son's recovery, therapy, and finding the right surgeon. I was so hopeful that he was going to recover w/out surgery but every week that goes by I have started to come to the realization that he most likely will need one if not many surgeries to improve his quality of life. I also constantly worry about if I am doing enough to help him get the best results. Lastly, I am just really angry. Angry at myself for not asking more questions at my Ob appointments and angry at my doctor for not doing the necessary tests to find out why I was measuring so big to avoid this entire outcome.
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FullHouseMom
- Posts: 9
- Joined: Wed Jun 23, 2010 7:25 pm
Re: New to Site - Looking for support and advise
Does Gavin have any use of his BPI arm?
My son was born in May of 2003 also weighing 12 lbs. He had his grip but that was the only movement he could do with it. I was told that his motion would come back after 3 months, but he didn't actually start moving his arm until October. We did therapy, chiropratic and massage in the years that followed and didn't have any surgery until he was 4 yrs old (after we discovered that his left elbow was dislocated as well). We went to U of M Hospital in Michigan. They have a whole BPI board. He is now 7 1/2 yrs old and has about 80% use of the arm.
But my advise is always get at least a 2nd opinion. A good doctor would have no problem with that either. Wishing you the best.
My son was born in May of 2003 also weighing 12 lbs. He had his grip but that was the only movement he could do with it. I was told that his motion would come back after 3 months, but he didn't actually start moving his arm until October. We did therapy, chiropratic and massage in the years that followed and didn't have any surgery until he was 4 yrs old (after we discovered that his left elbow was dislocated as well). We went to U of M Hospital in Michigan. They have a whole BPI board. He is now 7 1/2 yrs old and has about 80% use of the arm.
But my advise is always get at least a 2nd opinion. A good doctor would have no problem with that either. Wishing you the best.
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nkjacoby
- Posts: 81
- Joined: Sat Jun 21, 2008 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!
Re: New to Site - Looking for support and advise
Hi, I also agree with the second opinion. There are many specialist's out there. I always went for a second opinion b/c surgery is a big deal. They have a section on this website that has information about doctors. My son has been seen by Dr. Kozin, Dr. Waters, and Dr. Nath. I believe it is very important to be extremely comfortable with my decisions when it came to surgery for Nicholas. So, if you aren't completely satisfied I would recommend a second opion. I'm sure you will make the right decision for Gavin. Sometimes it just takes some time to meet with a couple of doctor's and then making a decision. You will know what's right for your little one. Hope this helps.
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5
Re: New to Site - Looking for support and advise
As far as I know, Shriners in Los Angeles does not have a doctor who performs any of these surgeries.
Kate
Kate
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Gavinsmom
- Posts: 5
- Joined: Wed Sep 29, 2010 6:55 pm
- Injury Description, Date, extent, surgical intervention etc: My son was born on May 18th 2010 and weighed 11 lbs 15 oz! Needless to say he got stuck as I was pushing him out and as a result has a "moderate to severe" BPI of the left arm. We are at the 4 month mark and have just seen Dr. Adelson, a neurosurgeon at Phoenix Children's, to discuss our options. We haven't had an MRI or EMG done yet. I am feeling overwhelmed and panicked about my son's recovery, therapy, and finding the right surgeon. I was so hopeful that he was going to recover w/out surgery but every week that goes by I have started to come to the realization that he most likely will need one if not many surgeries to improve his quality of life. I also constantly worry about if I am doing enough to help him get the best results. Lastly, I am just really angry. Angry at myself for not asking more questions at my Ob appointments and angry at my doctor for not doing the necessary tests to find out why I was measuring so big to avoid this entire outcome.
Re: New to Site - Looking for support and advise
Gavin has some movement in his arm. He has brought his hand to his mouth but he gets the back of his hand, and he doesn't do it very often. I have also seen him bring his hand to his eye twice. I always get so excited when he does it but the OT says they aren't quality movements because of the internal rotation. We have a surgery date of Nov. 2nd here in Phoenix but I really wanted to go to Shriners to see Dr. Kozin. Dr. Adelson and Dr. Nath have just started a BPI clinic at Phoenix Children's Hospital and I know they both come highly recommended. So I am trying to decide if I should just do the surgery with Dr. Adelson or postpone it for later in November and go and see Kozin to see what he thinks. It is so scary to have to make these types of decisions!
Thanks for the advice!
Jenn
Thanks for the advice!
Jenn
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Gavinsmom
- Posts: 5
- Joined: Wed Sep 29, 2010 6:55 pm
- Injury Description, Date, extent, surgical intervention etc: My son was born on May 18th 2010 and weighed 11 lbs 15 oz! Needless to say he got stuck as I was pushing him out and as a result has a "moderate to severe" BPI of the left arm. We are at the 4 month mark and have just seen Dr. Adelson, a neurosurgeon at Phoenix Children's, to discuss our options. We haven't had an MRI or EMG done yet. I am feeling overwhelmed and panicked about my son's recovery, therapy, and finding the right surgeon. I was so hopeful that he was going to recover w/out surgery but every week that goes by I have started to come to the realization that he most likely will need one if not many surgeries to improve his quality of life. I also constantly worry about if I am doing enough to help him get the best results. Lastly, I am just really angry. Angry at myself for not asking more questions at my Ob appointments and angry at my doctor for not doing the necessary tests to find out why I was measuring so big to avoid this entire outcome.
Re: New to Site - Looking for support and advise
Gavin has some movement in his arm. He has brought his hand to his mouth but he gets the back of his hand, and he doesn't do it very often. I have also seen him bring his hand to his eye twice. I always get so excited when he does it but the OT says they aren't quality movements because of the internal rotation. We have a surgery date of Nov. 2nd here in Phoenix but I really wanted to go to Shriners to see Dr. Kozin. Dr. Adelson and Dr. Nath have just started a BPI clinic at Phoenix Children's Hospital and I know they both come highly recommended. So I am trying to decide if I should just do the surgery with Dr. Adelson or postpone it for later in November and go and see Kozin to see what he thinks. It is so scary to have to make these types of decisions!
Thanks for the advice!
Jenn
Thanks for the advice!
Jenn