Hi and Welcome- sorry that you had to find us. It gets easier. Our son has ROBPI. His injury is severe, no use or movement or even sensation for about 1 and half years. He had surgery at 10 months with Dr Bhatia at Miami Childrens. Dr Bhatia is a pediatric neurosurgeon, but not only for BPI. He will do operations involving nerves, but not the ones on tendon, muscle or bone. Javier had primary with nerve grafts and the results have been great. You will hear of lots of doctors, treatments and therapies. But you just have to research everything and choose who and what is right for you and your child. There are docs that we wouldn't go to and there are treatments and therapies that we wont try. Just like there are plenty of parents who feel the exact opposite. The people that post here are caring and supportive and you will begin to think of many as friends. If you have any questions you can email me.
marlyncma@hotmail.com
p.s We have been patients of Dr Scott Kozin since Javier was 1.
New member with a ton of questions
Re: New member with a ton of questions
I am so glad you have found a BPI specialist already. I think that with this injury that for the best out come it is important to see the right type of dr. I also think sooner is better for the BP dr to be involved. Keep asking questions and best luck on your journey. Wishing you and your daughter a speedy recovery and smooth journey.
Sue
Sue
Re: New member with a ton of questions
Hi Ashley,
I'm Brandy, 26 LOBPI. When I was born I had no movement in my arm and didn't begin moving it until around 3 or 4 months and then only while sleeping. My parents took me to a doctor (not sure what kind) and they were only told that it was nerve damage and there was nothing that could be done. Up until a couple of years ago I had no idea that anyone else existed with this injury. It was such a blessing to find this site and find out that I wasn't alone in this. Yes, I wish that I had been given the option of surgery in childhood, because I am now, like many others, starting to feel the effects of overuse in my "good" arm. I've already developed bursitis in my right shoulder. I've never seen a specialist or had any kind of testing done to determine the extent of my injury.
I'm Brandy, 26 LOBPI. When I was born I had no movement in my arm and didn't begin moving it until around 3 or 4 months and then only while sleeping. My parents took me to a doctor (not sure what kind) and they were only told that it was nerve damage and there was nothing that could be done. Up until a couple of years ago I had no idea that anyone else existed with this injury. It was such a blessing to find this site and find out that I wasn't alone in this. Yes, I wish that I had been given the option of surgery in childhood, because I am now, like many others, starting to feel the effects of overuse in my "good" arm. I've already developed bursitis in my right shoulder. I've never seen a specialist or had any kind of testing done to determine the extent of my injury.
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lrstuart33
- Posts: 8
- Joined: Thu Feb 08, 2007 2:47 pm
Re: New member with a ton of questions
Hi Ashley
My name is Leslie (i don't post very often but I am here quite ofen reading). My daughter, Cheyenne, is 5 1/2 yrs old and has LOBPI. Your daughters injury sounds very similiar to Cheyenne's. She had finger & wrist movement and could mover her shoulder some. She was unable to bring her hand to mouth by 3 months so we decided to see an orthopedic surgeon (with experience with BPI) who was referred to us by our PT. Cheyenne had a nerve graft at about 6 months of age. She has about 95% function now.
1. In other older posts I have seen mention that Dr. Bhatia is not associated with the BPI group in Miami. Is this still true? And does anyone have any idea why I would be referred to him rather than Dr. Grossman?
I haven't heard of Dr. Bhatia. We were referred to Dr. Kadiyala @ University of Iowa Hospitals (i think he is in Florida now) by our PT because the neurologist that we saw when Cheyenne was 2 wks old was not very helpful. The neurologist told us that what we saw for function at that time was all that she was going to get and that surgeries for BPI were not very successful and a waste of time. we told our PT that and she said it was BS and referred us to Dr. Kadiyala. So my opinions of neurologists are not very high. But it looks like you have chosen to see another doctor (very good idea).
2. What tests should I be anticipating? To date we have only had an x-ray done in the hospital at the time of birth.
Can I expect these tests to show the extent of the nerve damage or will exploratory surgery have to be done (which is what I have been told by the neurologist.)?
Cheyenne had an EMG and MRI before surgery. Neither one really told us much more than what we already knew.
3. How do I know which doctor to chose? I understand time is of the essence in BPI, but believe that choosing the right doctor is equally important.
I think you will know when you have found the right doctor. Cheyenne loved Dr. Kadiyala from day one. Even though she was just 3 months old when we 1st saw him, we could tell that she was comfortable with him. That helped to put our minds at ease.
4. What type of PT/OT was done with your children? Other than splinting (and the splints they used hindered her from picking up her shoulder) we have had nothing else but ROM.
Cheyenne had PT once a week until she was about 1 1/2 yrs old. We did ROM at home several times a day and a lot of weight bearing (tummy time).
5. At our first PT appointment, the therapist said that of all the children she worked with that were affected by BPI, all of them had a problem with spitting up. This is true with Kayla and I was curious to know if anyone else had this problem or if anyone knew about research being done?
Cheyenne didn't have problems with spitting up.
6. If surgery is required, what am I to expect about the surgery itself? How extensive? How long in the hospital? How is the recovery for the child? What are some of the risks involved?
Cheyenne had a nerve graft. They took nerves from the back of both legs and grafted into the neck. She had stretch injury to C5 and C6. She stayed one night in the hospital and went home with tylenol (which she didn't need after the 1st night home). She was wrapped up so she couldn't move her arm for 3 weeks and no pt for another couple weeks after being unwrapped. After she was unwrapped her arm was like it was at birth but she slowly regained movement.
Hope this helps! Cheyenne has had great recovery but please remember that all children are different.
Leslie
My name is Leslie (i don't post very often but I am here quite ofen reading). My daughter, Cheyenne, is 5 1/2 yrs old and has LOBPI. Your daughters injury sounds very similiar to Cheyenne's. She had finger & wrist movement and could mover her shoulder some. She was unable to bring her hand to mouth by 3 months so we decided to see an orthopedic surgeon (with experience with BPI) who was referred to us by our PT. Cheyenne had a nerve graft at about 6 months of age. She has about 95% function now.
1. In other older posts I have seen mention that Dr. Bhatia is not associated with the BPI group in Miami. Is this still true? And does anyone have any idea why I would be referred to him rather than Dr. Grossman?
I haven't heard of Dr. Bhatia. We were referred to Dr. Kadiyala @ University of Iowa Hospitals (i think he is in Florida now) by our PT because the neurologist that we saw when Cheyenne was 2 wks old was not very helpful. The neurologist told us that what we saw for function at that time was all that she was going to get and that surgeries for BPI were not very successful and a waste of time. we told our PT that and she said it was BS and referred us to Dr. Kadiyala. So my opinions of neurologists are not very high. But it looks like you have chosen to see another doctor (very good idea).
2. What tests should I be anticipating? To date we have only had an x-ray done in the hospital at the time of birth.
Can I expect these tests to show the extent of the nerve damage or will exploratory surgery have to be done (which is what I have been told by the neurologist.)?
Cheyenne had an EMG and MRI before surgery. Neither one really told us much more than what we already knew.
3. How do I know which doctor to chose? I understand time is of the essence in BPI, but believe that choosing the right doctor is equally important.
I think you will know when you have found the right doctor. Cheyenne loved Dr. Kadiyala from day one. Even though she was just 3 months old when we 1st saw him, we could tell that she was comfortable with him. That helped to put our minds at ease.
4. What type of PT/OT was done with your children? Other than splinting (and the splints they used hindered her from picking up her shoulder) we have had nothing else but ROM.
Cheyenne had PT once a week until she was about 1 1/2 yrs old. We did ROM at home several times a day and a lot of weight bearing (tummy time).
5. At our first PT appointment, the therapist said that of all the children she worked with that were affected by BPI, all of them had a problem with spitting up. This is true with Kayla and I was curious to know if anyone else had this problem or if anyone knew about research being done?
Cheyenne didn't have problems with spitting up.
6. If surgery is required, what am I to expect about the surgery itself? How extensive? How long in the hospital? How is the recovery for the child? What are some of the risks involved?
Cheyenne had a nerve graft. They took nerves from the back of both legs and grafted into the neck. She had stretch injury to C5 and C6. She stayed one night in the hospital and went home with tylenol (which she didn't need after the 1st night home). She was wrapped up so she couldn't move her arm for 3 weeks and no pt for another couple weeks after being unwrapped. After she was unwrapped her arm was like it was at birth but she slowly regained movement.
Hope this helps! Cheyenne has had great recovery but please remember that all children are different.
Leslie