Aaron had his appt and dr said he has almost if not complete flexation and 90' degree abduction (sp) but that was lying down. Aaron is 6 mos old and I don't feel comfortable with his diagnosis. Ella is 1 mo behind Aaron and I am not getting the same "deadlines" as her even though both kids have about the same ROM. He cannot bring his hand to his mouth in sitting position but can with ease when lying down. can bring it to his chest and is fully aware of other hand and tries to really use it. I asked if doc has treated many bpi babies and nurse said very many. could she have been lying? what deadlines or guidelines are used to evaluate the babies. he wants to see him again in 4 mos and said that suppination needs to improve by then or surgery may be an option. need opinions please. By the way I just quit my job that took me many years to get to my position. I feel that I need to work with Aaron and if surgery is needed then at least I could say that I did all I could do instead of maybe having the guilt of not having done all I could have done. Just wanted to say THANKS DOC FOR THE UPROOT. Don't worry Prozak should be kicking in. UUUGGGGHHHHHHH!!!
----Paula
NEUROLOGIST APPT
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marymom
- Posts: 692
- Joined: Mon Nov 05, 2001 5:05 pm
- Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
- Location: Fort Pierce, FL
Re: NEUROLOGIST APPT
I can say that it doesnt make sense for the doctor to say that about suppination because suppination doesnt come in untill alot later, other than that the timelines for hand to mouth against gravity are all different, it just depends on the surgeon,
just my opinions
just my opinions
Re: NEUROLOGIST APPT
You need to get to a brachial plexus specialist as soon as you can because of Aaron's age. If there is what they consider to be a severe injury - then the timeframes for surgical repair are important and Aaron is on that cusp right now.
Aaron needs to have HAND TO MOUTH WITHOUT THE ASSISTANCE OF GRAVITY. That is the main movement they are looking for at this age. Aaron needs to be sitting up in his little chair and needs to be able to bring something to his mouth. Can he do this?
Where are you located? Maybe there is a bpi specialist in your area? And if not, you can send a video to Texas Childrens Hospital http://www.injurednewborn.com/maia/video.html
Time is really of the essence.
Also, I really don't understand his comment about supination because in an uninjured child the normal developmental rate for supination is at 11 months of age.
I'm sorry Paula - hope you get some real answers soon.
God Bless,
francine
PS - I think I am missing something...are Aaron and Ella twins?
Aaron needs to have HAND TO MOUTH WITHOUT THE ASSISTANCE OF GRAVITY. That is the main movement they are looking for at this age. Aaron needs to be sitting up in his little chair and needs to be able to bring something to his mouth. Can he do this?
Where are you located? Maybe there is a bpi specialist in your area? And if not, you can send a video to Texas Childrens Hospital http://www.injurednewborn.com/maia/video.html
Time is really of the essence.
Also, I really don't understand his comment about supination because in an uninjured child the normal developmental rate for supination is at 11 months of age.
I'm sorry Paula - hope you get some real answers soon.
God Bless,
francine
PS - I think I am missing something...are Aaron and Ella twins?
Re: NEUROLOGIST APPT
Francine, Ella is Krista's baby. I'm just comparing them which I know is not right to do as each injury is different but I'm a little anxious.
Re: NEUROLOGIST APPT
we are in garden city, kansas the doc is in wichita. Aaron can bring his hand to his chest in sitting position. I think what i will do is call TCH to schedule an appointment and make a video to send also.
---Paula
---Paula
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Kathleen Z
Re: NEUROLOGIST APPT
I agree with Francine that hand to mouth (biceps function) is the main thing that most bpi specialists look for in determining whether to explore nerve surgery or not. If he's getting his hand to his mouth while laying down but not sitting up, he's most likely not using his biceps muscle.
In terms of the timing for hand to mouth, when I researched the subject, I found that some bpi specialits will operate at 3 months if there's no bicep function, along with wrist and shoulder deficiencies. Other surgeons wait until 9 months to make that decision. My son had surgery at the age of 5.5 months because he had no hand to mouth with biceps, he had no shoulder function, and his wrist was held in flexion.
Hope this helps. It is a very tough decision to make. So it's good to get the opinion of more than one doctor, and you have to trust the ability and knowledge of the doc.
In terms of the timing for hand to mouth, when I researched the subject, I found that some bpi specialits will operate at 3 months if there's no bicep function, along with wrist and shoulder deficiencies. Other surgeons wait until 9 months to make that decision. My son had surgery at the age of 5.5 months because he had no hand to mouth with biceps, he had no shoulder function, and his wrist was held in flexion.
Hope this helps. It is a very tough decision to make. So it's good to get the opinion of more than one doctor, and you have to trust the ability and knowledge of the doc.
Re: NEUROLOGIST APPT
I would call TCH today. THe surgery has to be done by 6 months? Jade had hers at 5.5 month it changed her life forever.
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NancyP
Re: NEUROLOGIST APPT
Paula,
I am from Wichita. Which dr. do you see? We don't even see a neuro here. We only go to TCH, and to Children's Mercy in KC for TES. We saw a neuro when Kelsey was 5 months (she's 5 now), and haven't been back to him since. Wonder if it is the same person?
I am from Wichita. Which dr. do you see? We don't even see a neuro here. We only go to TCH, and to Children's Mercy in KC for TES. We saw a neuro when Kelsey was 5 months (she's 5 now), and haven't been back to him since. Wonder if it is the same person?
Re: NEUROLOGIST APPT
Nancy, so good to see someone from around here. the doc is Dr. Subhash Shah from the Neurology Center of Wichita. 220 S. Hillside. Have you heard of him??
---Paula
---Paula
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NancyP
Re: NEUROLOGIST APPT
Paula,
That is who Kelsey saw at 5 months. He did her EMG. Our PCP is not really involved in Kelsey's treatment except that we call him to refer us to whatever services we want. We haven't been back to him since we started going to TCH. They evaluate Kelsey by video, and she has had 3 surgeries. She is up for her 4th April 8th. I will try to e-mail you after the weekend about the clinic I was talking about earlier in the posts.
Dr. Shah was very laid back about Kelsey's treatment. He did not push for us to go to Houston, and that is how we got in the mess I mentioned above. She was 5 months for first visit with him, and 14 months (almost too late) for primary surgery. Be vigilant with him. I don't know how he treated your child, but when he picked up Kelsey, he held her way out in front of him arms extended all the way. You know, like you see men on the movies do when a child needs a diaper change!
That is who Kelsey saw at 5 months. He did her EMG. Our PCP is not really involved in Kelsey's treatment except that we call him to refer us to whatever services we want. We haven't been back to him since we started going to TCH. They evaluate Kelsey by video, and she has had 3 surgeries. She is up for her 4th April 8th. I will try to e-mail you after the weekend about the clinic I was talking about earlier in the posts.
Dr. Shah was very laid back about Kelsey's treatment. He did not push for us to go to Houston, and that is how we got in the mess I mentioned above. She was 5 months for first visit with him, and 14 months (almost too late) for primary surgery. Be vigilant with him. I don't know how he treated your child, but when he picked up Kelsey, he held her way out in front of him arms extended all the way. You know, like you see men on the movies do when a child needs a diaper change!