When there is no specialist in the area
When there is no specialist in the area
Hello,
I posted here for the first time just this week but need to know something else.
I only just found out that Jaxson's injury at birth is called a Brachial Plexus. Nobody said a word to me until the neurologist saw him last week. He didn't tell me what to do for it, just continue with his therapy that he gets for his torticollis. And, at the time, I had no idea what it was, what the damage really could be.
Now, after doing lots and lots of research, I know that he should have seen a specialist for this. I live in MN and the closest doctor is 2.5 hours away (which probably seems like nothing to those of you that travel hundreds to thousands of miles). As of now, though, we already go to the doctor and therapy 3x a week, on top of having him at home with me, I work full time from my house.
Is there anything else I can do? When I told his PT and OT what the Nuerologist had called it, they seemed really surprised and said they had wondered if that's what it was.
So, anything or anyone else I can see about this?
Just a side note, Jaxson was born 3 weeks early, July 15, 2003. I had been induced due to contractions and early labor for several weeks prior. Many MANY ultrasounds had been done, in fact, I would say maybe 18 of them. AND, one was done 20 min prior to me pushing. He came out at 9lbs 15 oz with use of the vacuum.
Kim
I posted here for the first time just this week but need to know something else.
I only just found out that Jaxson's injury at birth is called a Brachial Plexus. Nobody said a word to me until the neurologist saw him last week. He didn't tell me what to do for it, just continue with his therapy that he gets for his torticollis. And, at the time, I had no idea what it was, what the damage really could be.
Now, after doing lots and lots of research, I know that he should have seen a specialist for this. I live in MN and the closest doctor is 2.5 hours away (which probably seems like nothing to those of you that travel hundreds to thousands of miles). As of now, though, we already go to the doctor and therapy 3x a week, on top of having him at home with me, I work full time from my house.
Is there anything else I can do? When I told his PT and OT what the Nuerologist had called it, they seemed really surprised and said they had wondered if that's what it was.
So, anything or anyone else I can see about this?
Just a side note, Jaxson was born 3 weeks early, July 15, 2003. I had been induced due to contractions and early labor for several weeks prior. Many MANY ultrasounds had been done, in fact, I would say maybe 18 of them. AND, one was done 20 min prior to me pushing. He came out at 9lbs 15 oz with use of the vacuum.
Kim
Re: When there is no specialist in the area
Kim,
Hi, I'm the one with the injury and I'd like to share with you about how my mother handled the long and many trips to doctors, specialists and therapy. She made it an adventure. She always combined a trip with something special, whether it was a trip to McDonalds (and 45 years ago a trip to McDonalds was really very special!) or shopping or seeing a park or zoo.
This I think is what instilled in me some life long lessons -- that life is a journey and that there are many things to be enjoyed along the way. I've always looked on the bright side of things and have a very positive attitude towards life. This I owe to my mom and her approach to my injury.
So turn that 2 and a half hour drive into something special that you and your child share together and if the journey takes you even further away, make the most of it. Your child will gain so much.
Nancy
Hi, I'm the one with the injury and I'd like to share with you about how my mother handled the long and many trips to doctors, specialists and therapy. She made it an adventure. She always combined a trip with something special, whether it was a trip to McDonalds (and 45 years ago a trip to McDonalds was really very special!) or shopping or seeing a park or zoo.
This I think is what instilled in me some life long lessons -- that life is a journey and that there are many things to be enjoyed along the way. I've always looked on the bright side of things and have a very positive attitude towards life. This I owe to my mom and her approach to my injury.
So turn that 2 and a half hour drive into something special that you and your child share together and if the journey takes you even further away, make the most of it. Your child will gain so much.
Nancy
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Francine_Litz
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Re: When there is no specialist in the area
ditto on what nancy said..... I did that with maia when we were traveling 1 1/2 hours each way for therapy.. tried to make it fun and the ride home always ended up in a nap for maia zzzzzzzzzz
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admin
- Site Admin
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Re: When there is no specialist in the area
Hi Kim,
I have posted to you before regarding my same age daughter Taylor. Do you feel the neurologist was making it to be "not an issue"???? He says just to continue with the tort therapy???? We have not yet seen a neurologist regarding Taylor's Erb's Palsy, but are being referred to one at Children's in Vancouver, B.C. In the meantime, my physiotherapist is having the occupational therapist come in and meet with Taylor tomorrow morning and will assess her. Possible splinting??? But I am frusterated, because I want to know the extent of this injury and everything I read sounds like it is "an issue" and a big one. Our babies are 6 1/2 months old and I want to know why we just found out now too!!!!! Good Luck to you, and my PT did mention something about Shriner's Hospital and how they have transportation available and accomodations as well. She mentioned something about Taylor going to the Portland, Oregon one but again, I am so confused, because nobody has even looked at her yet and I thought we were going to Vancouver for her plagio and banding. Anyways, good luck again and I hope you find some answers for your little "Jaxson".
Dawn.
I have posted to you before regarding my same age daughter Taylor. Do you feel the neurologist was making it to be "not an issue"???? He says just to continue with the tort therapy???? We have not yet seen a neurologist regarding Taylor's Erb's Palsy, but are being referred to one at Children's in Vancouver, B.C. In the meantime, my physiotherapist is having the occupational therapist come in and meet with Taylor tomorrow morning and will assess her. Possible splinting??? But I am frusterated, because I want to know the extent of this injury and everything I read sounds like it is "an issue" and a big one. Our babies are 6 1/2 months old and I want to know why we just found out now too!!!!! Good Luck to you, and my PT did mention something about Shriner's Hospital and how they have transportation available and accomodations as well. She mentioned something about Taylor going to the Portland, Oregon one but again, I am so confused, because nobody has even looked at her yet and I thought we were going to Vancouver for her plagio and banding. Anyways, good luck again and I hope you find some answers for your little "Jaxson".
Dawn.
Re: When there is no specialist in the area
Hi Dawn,
I posted on CAPPS to you, but that was before I read the post here. When the neuro told me about Jaxson and what had happened I had NO clue what it even was. So, I asked him and he basically just said the nerves in the shoulder area were damaged, probably some slight tears in the nerves as well. I asked him what would/could be done, if he was going to have problems forever from this, he said, and I quote 'we won't know until he is older what the damage is' So, I walked away from there having no clue what would happen next.
Then we saw the orthopedic on Monday. I asked him about it as well and he said that they don't do any type of correction until they are older anyway.
From what I have read though, many surgeries and other types of correction are done much earlier. I planned on taking my book of Jaxson's medical records today to his OT to have her look and decide, but the weather is stopping me from stepping one foot out my door.
I hope everything with Taylor goes good today and I hope that you find the answers you need. I think it's horrible that we are both going through this with the doctors, not telling us. Jaxson will be 7 months old on the 15th, we should have known when they knew. When were you supposed to get her band?
You can always email me if you'd rather. I'd like to know what turns out from your appointments and what you find out.
Good luck and I'll be thinking about you and Taylor!
Kim
I posted on CAPPS to you, but that was before I read the post here. When the neuro told me about Jaxson and what had happened I had NO clue what it even was. So, I asked him and he basically just said the nerves in the shoulder area were damaged, probably some slight tears in the nerves as well. I asked him what would/could be done, if he was going to have problems forever from this, he said, and I quote 'we won't know until he is older what the damage is' So, I walked away from there having no clue what would happen next.
Then we saw the orthopedic on Monday. I asked him about it as well and he said that they don't do any type of correction until they are older anyway.
From what I have read though, many surgeries and other types of correction are done much earlier. I planned on taking my book of Jaxson's medical records today to his OT to have her look and decide, but the weather is stopping me from stepping one foot out my door.
I hope everything with Taylor goes good today and I hope that you find the answers you need. I think it's horrible that we are both going through this with the doctors, not telling us. Jaxson will be 7 months old on the 15th, we should have known when they knew. When were you supposed to get her band?
You can always email me if you'd rather.
I'd like to know what turns out from your appointments and what you find out. Good luck and I'll be thinking about you and Taylor!
Kim
