My daughter Catherine is 11 weeks old and has an UBPI (right) from delivery. We have been in OT since week 1 and have seen significant (at least I think so) progress. Initially she was able to grasp and had some wrist movement, but little else. Since then, she has begun moving her shoulder (internal rotation and some abduction in a side-lying position) and some bending of her elbow. Most recently, she was able to raise her arm to the side to 90 deg while lying on her back and can lift it to about 20-30 deg. Each week, her therapist is encouraged by her increased range of motion and frequency of movement.
We have seen a ped. neurologist who has said that she did not feel Catherine is a candidate for surgery, however I have been told my one of our therapists that physicians in our area use a more conservative approach. However, it seems that there is a definite time limit before surgery is no longer effective and I am feeling like I am behind where I should be. While I don't want to subject her to any unnecessary surgeries, I want to know for sure that I have investigated every option. With that said, we are beginning our search of specialists around the country. There seems to be a great deal of conflicting information in the information that is out there. I have a few questions for you more seasoned parents.
1. What information do I need to have when trying to schedule and evaluation of my daughter? Will physicians let us make an appointment or do they require us to send certain information (EMGs, MRIs etc) to them first? One md has told us that she is too young for an MRI or an EMG, but other literature says that she should have already had an EMG to set a baseline. Furthermore, there is a possibility that she has an inguinal hernia, which will require surgical repair, so would it be beneficial to go ahead and try to have an MRI done at the same time while she is under anesthesia?
2. Has anyone talked to/used Alex Mih in Indianapolis? Would you mind sharing your experience with me? Email is mclark0297@yahoo.com.
3. My daughter is constantly getting the hiccups. She never had the hiccups when I was pregnant. I have read somewhere that this could be a result of her injury (C5 controls the diaphragm), but no one that I have talked to seems to know anything about it. Has anyone else experienced this?
Sorry for the length of this post, but there is so much conflicting information out there, it all becomes a bit overwhelming. Thanks in advance for any information you can provide.
Behind?
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: Behind?
Hi Catherine's Mom,
I'm sorry to meet you under these circumstances,but you are in the right place to find answers....this place has been a God send to me.
My daughter Cassidy also has a ROBPI..she is 17 months old and has had the primary (nerve graph) surgery.
As far as what you have already done,I think your doing great.We also saw a Ped.Neurologist early in Cassidy's life...personally I think you really need to see a BPI doctor before you make a call as to whether your daughter needs surgery. Whatever you do don't take just one doctors opinion..especially one who does not specialize in Brachial Plexus injuries. It seems like yesterday that I was going through the exact emotions that you are...it's hard. research this injury as much as you can...get all the information you can. The thing is with surgery is that a doctor can recommend surgery but ultimately it is up to you and your husband to decide what to do...there is no set protocol with these injuries...one is so different from the next.
My daughter's C5,C6 and C7 were the affected nerves and I did notice that Cass had a lot of hiccups as an infant...I live in Canada so I can't offer any advice about doctors,however there a lot o great people here that I know will be able to. I wish you and your family the best as you seek treatment for your little girl...
Dawn, mommy to Cassidy 17 months ROBPI
I'm sorry to meet you under these circumstances,but you are in the right place to find answers....this place has been a God send to me.
My daughter Cassidy also has a ROBPI..she is 17 months old and has had the primary (nerve graph) surgery.
As far as what you have already done,I think your doing great.We also saw a Ped.Neurologist early in Cassidy's life...personally I think you really need to see a BPI doctor before you make a call as to whether your daughter needs surgery. Whatever you do don't take just one doctors opinion..especially one who does not specialize in Brachial Plexus injuries. It seems like yesterday that I was going through the exact emotions that you are...it's hard. research this injury as much as you can...get all the information you can. The thing is with surgery is that a doctor can recommend surgery but ultimately it is up to you and your husband to decide what to do...there is no set protocol with these injuries...one is so different from the next.
My daughter's C5,C6 and C7 were the affected nerves and I did notice that Cass had a lot of hiccups as an infant...I live in Canada so I can't offer any advice about doctors,however there a lot o great people here that I know will be able to. I wish you and your family the best as you seek treatment for your little girl...
Dawn, mommy to Cassidy 17 months ROBPI
Re: Behind?
Catherine's mom:
Welcome to our community, though I am sorry you had to find us.
As for finding bpi specialists, we have a medical resource page on this website and I encourage you to get at least 3 opinions. Treatment of bpi is changing constantly, and the opinions you recieve will not all be the same. The information you gather from all of the other doctors, even if you choose not to use them, will be quite useful.
Considering your child has movement, you still have time. True, basic protocol is that nerve grafting will not work past 12months of age, but your clock has not run out in any way.
Your therapist is on the ball in encouraging you to not listen to your pediatric neurologist. Really, they are stuck in the middle ages when it comes to treatments for bpi. There is a ped neuro near where I live who still considers nerve grafting "barbaric" and wouldn't recommend it to anyone. My ped neuro sent us to bpi specialists.
As for testing...the usefulness of EMGs and MRIs is seriously questioned. Many doctors use function, more than anything else, to determine injury.
And yes, the hiccups are a way of life for a while. My daughter had them too. Some do, some don't. You will find that each injury is as personal and different as a fingerprint.
I have not used Alex Mih, but I am sure others on the boards have and will weigh in. I use Scott Kozin at Shriners of Philly and Peter Waters at Children's Hospital, Boston for follow-up care for my daughter who is now 8 with LOBPI.
Ask tons of questions....
claudia
Welcome to our community, though I am sorry you had to find us.
As for finding bpi specialists, we have a medical resource page on this website and I encourage you to get at least 3 opinions. Treatment of bpi is changing constantly, and the opinions you recieve will not all be the same. The information you gather from all of the other doctors, even if you choose not to use them, will be quite useful.
Considering your child has movement, you still have time. True, basic protocol is that nerve grafting will not work past 12months of age, but your clock has not run out in any way.
Your therapist is on the ball in encouraging you to not listen to your pediatric neurologist. Really, they are stuck in the middle ages when it comes to treatments for bpi. There is a ped neuro near where I live who still considers nerve grafting "barbaric" and wouldn't recommend it to anyone. My ped neuro sent us to bpi specialists.
As for testing...the usefulness of EMGs and MRIs is seriously questioned. Many doctors use function, more than anything else, to determine injury.
And yes, the hiccups are a way of life for a while. My daughter had them too. Some do, some don't. You will find that each injury is as personal and different as a fingerprint.
I have not used Alex Mih, but I am sure others on the boards have and will weigh in. I use Scott Kozin at Shriners of Philly and Peter Waters at Children's Hospital, Boston for follow-up care for my daughter who is now 8 with LOBPI.
Ask tons of questions....
claudia
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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: Behind?
Hello, and welcome to the boards. I too am sorry that you and your family have to be here. You've posted some great questions.
--What information do I need to have when trying to schedule and evaluation of my daughter? ... That depends on the doctor that you are seeing. Just as the doctor/coordinator when you schedule and appointment if there is anything you should do in advance and how you can do that.
--Will physicians let us make an appointment or do they require us to send certain information (EMGs, MRIs etc) to them first? ... Once again, just check with each specific doctor.
--One md has told us that she is too young for an MRI or an EMG, but other literature says that she should have already had an EMG to set a baseline. Furthermore, there is a possibility that she has an inguinal hernia, which will require surgical repair, so would it be beneficial to go ahead and try to have an MRI done at the same time while she is under anesthesia? ... I'm not personally familiar with EMG's as we didn't ever have that opportunity posed to us in infancy. I've been told that it can be done in infancy. There are a couple different methods I've heard with one being external (on the skin surface like an EKG), one with the actual needle under the skin (some type of anesthesia is used in infancy I believe), and then intraoperatively as well it can be used. That is the limitation of my knowledge on it. Some doctors put a lot of networth in it and others don't. MRI can be done in infancy, but anesthesia is used so your child stays still. What is the reason the doctor would be doing the MRI is the question? That is something you'll need to discuss with the doctor(s). Of course it sounds logical to do the MRI at the same time as the hernia repair, but logistically, it may not work out. Also, some BPI doctors desire MRI's to be done at certain hospitals because the way the MRI is done is a bit different than the average MRI, so the information that is obtained is more useful to them. You wouldn't be having the hernia surgery done at the same place most likely.
--Has anyone talked to/used Alex Mih in Indianapolis? Would you mind sharing your experience with me? ... I've never had any experience with this doctor. Please check our medical resource directory for a BPI specialist. You should check into more than one specialist. Multiple opinions are highly recommended.
Best wishes with your family. Please always feel free to ask any questions you may have here. By the way, my name is Tanya, and I am Mom to Amber. She will be 5 years old next month, and has a right obstetrical brachial plexus injury (ROBPI). She had finger and wrist movement only at birth, then we've progressed to where she is today. Welcome again.
Tanya in NY
Amber's Mom, ROBPI, almost 5 years old
--What information do I need to have when trying to schedule and evaluation of my daughter? ... That depends on the doctor that you are seeing. Just as the doctor/coordinator when you schedule and appointment if there is anything you should do in advance and how you can do that.
--Will physicians let us make an appointment or do they require us to send certain information (EMGs, MRIs etc) to them first? ... Once again, just check with each specific doctor.
--One md has told us that she is too young for an MRI or an EMG, but other literature says that she should have already had an EMG to set a baseline. Furthermore, there is a possibility that she has an inguinal hernia, which will require surgical repair, so would it be beneficial to go ahead and try to have an MRI done at the same time while she is under anesthesia? ... I'm not personally familiar with EMG's as we didn't ever have that opportunity posed to us in infancy. I've been told that it can be done in infancy. There are a couple different methods I've heard with one being external (on the skin surface like an EKG), one with the actual needle under the skin (some type of anesthesia is used in infancy I believe), and then intraoperatively as well it can be used. That is the limitation of my knowledge on it. Some doctors put a lot of networth in it and others don't. MRI can be done in infancy, but anesthesia is used so your child stays still. What is the reason the doctor would be doing the MRI is the question? That is something you'll need to discuss with the doctor(s). Of course it sounds logical to do the MRI at the same time as the hernia repair, but logistically, it may not work out. Also, some BPI doctors desire MRI's to be done at certain hospitals because the way the MRI is done is a bit different than the average MRI, so the information that is obtained is more useful to them. You wouldn't be having the hernia surgery done at the same place most likely.
--Has anyone talked to/used Alex Mih in Indianapolis? Would you mind sharing your experience with me? ... I've never had any experience with this doctor. Please check our medical resource directory for a BPI specialist. You should check into more than one specialist. Multiple opinions are highly recommended.
Best wishes with your family. Please always feel free to ask any questions you may have here. By the way, my name is Tanya, and I am Mom to Amber. She will be 5 years old next month, and has a right obstetrical brachial plexus injury (ROBPI). She had finger and wrist movement only at birth, then we've progressed to where she is today. Welcome again.
Tanya in NY
Amber's Mom, ROBPI, almost 5 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
Re: Behind?
Oh, please don't feel that you are "behind". You are more on top of it than most parents. If your child has been doing range of motion therapy since week one, that's way sooner than most. We started with my son at week 5. Your child's movement sounds just like Zack's at that age. I had been in contact w/ a specialist and he said to send a video, which we did. After reviewing the video, the dr. said as long as Zack continued to make progress, no surgery. Well, he never stopped progressing in the baby/ toddler years. We continued w/ therapy ( even did free OT w/ ESD for a couple years), and always encouraged activity that would help his arm. We didn't do an MRI or any other x-rays, actually. At age 4, Zack had surgery to help with internal rotation, supination, straightening his arm, and a winging scapula. We are so happy with the results...and it has been a year. My advice is for you to only talk to BPI specialists ( I had pediatricians wanting me to see orthopedic surgeons- NOT!) and go with your gut ! Many times through this process, I felt like I was on information overload, and I would just have to take a break from reading. You are doing an amazing job so far. Best wishes for continued progress for your baby girl and less hiccups! 
april
april
Re: Behind?
Hi Catherine's mom,
I too began seeing a pediatic neurosurgeon for my daughter Olivia, who is now 25 months. He was wonderful and caring and sent us for an EMG and MRI when Olivia was 3 1/2 months old. She was moving her fingers at the time, but had no other movement in her arm or shoulder or bicep. Anyway, he was checking to see the extent of the nerve injury. The tests showed no avulsions, so he said no surgery would be needed and to continue with therapy. She did eventually get movement in her arm a few week later. We continued to see him until Olivia was about 18 months old. Each visit, he said her progress was good and just to get on going with the therapy. I was happy with her progress, but still felt that something was missing. It was around that time that I discovered UBPN and I realized something important...he is a NEURO surgeon...he operates on NERVES and her nerves were not the problem any longer...her "problems" were secondary to the nerve injury (meaning they in effect caused the other issues). In my opinion, because he was not a BPI specialist, he was only focused on the nerve recovery. That being said, we saw 3 different doctors - Dr. Nath in Texas, Dr. Waters in Boston, and Dr. Kozin in Philly. Waters and Kozin were in complete agreement with one another, both said an MRI was totally necessary and they consulted with each other on the results and the final decision....tendon transfer, which she is having with Dr. Kozin on Tuesday. They actually encouraged me to get 2nd and 3rd opinions. So, definetly see a specialist and like the others said, don't be concerned with making a doctor angry. Your gut will must likely help you make your decisions and you'll get a feeling for each doctor as you see him or her.
I don't know about the doctor you are asking about, but again, like the others said, ask tons of question, check out the medical section of the boards and I'm sure you'll find some info. I have heard that about the hiccups too, but Olivia did not have that problem.
Good luck to you and Catherine.
Felicia
I too began seeing a pediatic neurosurgeon for my daughter Olivia, who is now 25 months. He was wonderful and caring and sent us for an EMG and MRI when Olivia was 3 1/2 months old. She was moving her fingers at the time, but had no other movement in her arm or shoulder or bicep. Anyway, he was checking to see the extent of the nerve injury. The tests showed no avulsions, so he said no surgery would be needed and to continue with therapy. She did eventually get movement in her arm a few week later. We continued to see him until Olivia was about 18 months old. Each visit, he said her progress was good and just to get on going with the therapy. I was happy with her progress, but still felt that something was missing. It was around that time that I discovered UBPN and I realized something important...he is a NEURO surgeon...he operates on NERVES and her nerves were not the problem any longer...her "problems" were secondary to the nerve injury (meaning they in effect caused the other issues). In my opinion, because he was not a BPI specialist, he was only focused on the nerve recovery. That being said, we saw 3 different doctors - Dr. Nath in Texas, Dr. Waters in Boston, and Dr. Kozin in Philly. Waters and Kozin were in complete agreement with one another, both said an MRI was totally necessary and they consulted with each other on the results and the final decision....tendon transfer, which she is having with Dr. Kozin on Tuesday. They actually encouraged me to get 2nd and 3rd opinions. So, definetly see a specialist and like the others said, don't be concerned with making a doctor angry. Your gut will must likely help you make your decisions and you'll get a feeling for each doctor as you see him or her.
I don't know about the doctor you are asking about, but again, like the others said, ask tons of question, check out the medical section of the boards and I'm sure you'll find some info. I have heard that about the hiccups too, but Olivia did not have that problem.
Good luck to you and Catherine.
Felicia