Hello All,
I am totally new to message boards, so forgive me if I make a mistake.
I am the mother of two, a 15 month old, and a two month old- Jordan. Jordan was injured during delivery and now has Erb's Palsey. We have just really begun this journey of struggle. I have a million questions- can people really get better? He always had use of his hand, but at first could not move any portion of his arm at all. Since about age two days, he has begun to move his arm, lift his arm (almost over his head) and most recently bend his elbow. Although I am sort of excited, ther is still a marked difference between his "good arm" and the injured one.The doctor says that he has the mildest form, but this was diagnosed w/o an EMG, and he has not recommended ot or pt.
I am so worried about my beautiful baby boy... I just want to make sure that I am doing everything that I can for my son!
What can you guys recommend for me? We live in the Washington DC area and there doesn't seem to be any support groups here. I have been walking through a dense fog for the past 68 days.
What frustrates me most is that my son would have been absolutely fine if my doctor had given me the option of having a cesearan! Everytime I think about how much he has suffered becuase of her decision, I am incensed!
I am trying my best to focus on his recovery. We visit a pediatric neuroligst for the first time on Wednesday (Dr. Crawford at Johns Hopkins Univ, Baltimore, MD.) Any suggestions? What kinds of questions should I ask?
Help!
Re: Help!
Hi Terrie! Yep I can say that we probably all understand the fog you are in. BUT before I go any further, I want to let you know that the movement your little one has is GREAT!!! Is he bending his elbow without the assistance of gravity? In other words - can you sit him in his little baby carrier and can he get his fingers near his mouth in this position?
Terrie - read this page - it'll give you some good information and will explain the timelines for recovery - how nerves grow in, etc. and then you will know why his movements are just wonderful: http://ubpn.org/awareness/A2002newparents.html
(it's also found as a link on the home page here - Information For New Parents)
Also - go to the Awareness section (links are on the home page too) and then go to the Resource section and read about obstetrical brachial plexus injuries. Reading the glossary would be good, too because there are so many new words to learn.
For support groups - there is one group for MD/VA/DC families - http://ubpn.org/awareness and click on worldwide support groups and you will find it there.
And for bpi specialists - from the home page here click on the Medical Resources listing and there you will find doctors who answered a survey by UBPN to get listed - make sure you read the answers to the questionaires they filled out.
It is most important that your little one be checked by a "brachial plexus specialist" (or two or three for additional opinions). I'm sorry to say that not all neurologists understand brachial plexus injuries or support the current thought process on recovery, therapy, etc.
Are you doing range of motion exercises? If not, get a referral for PT or OT from your primary physician and have them teach you how to do ROM exercises. Therapy is most important for children with brachial plexus injuries.
The tell-tale months for recovery is right now for your little one. I will keep you and your sweety in my thoughts and prayers and hope that he gets as much return as possible.
Ask us lots of questions and know that we are here to help support you through this hard time.
big hugs,
francine
Terrie - read this page - it'll give you some good information and will explain the timelines for recovery - how nerves grow in, etc. and then you will know why his movements are just wonderful: http://ubpn.org/awareness/A2002newparents.html
(it's also found as a link on the home page here - Information For New Parents)
Also - go to the Awareness section (links are on the home page too) and then go to the Resource section and read about obstetrical brachial plexus injuries. Reading the glossary would be good, too because there are so many new words to learn.
For support groups - there is one group for MD/VA/DC families - http://ubpn.org/awareness and click on worldwide support groups and you will find it there.
And for bpi specialists - from the home page here click on the Medical Resources listing and there you will find doctors who answered a survey by UBPN to get listed - make sure you read the answers to the questionaires they filled out.
It is most important that your little one be checked by a "brachial plexus specialist" (or two or three for additional opinions). I'm sorry to say that not all neurologists understand brachial plexus injuries or support the current thought process on recovery, therapy, etc.
Are you doing range of motion exercises? If not, get a referral for PT or OT from your primary physician and have them teach you how to do ROM exercises. Therapy is most important for children with brachial plexus injuries.
The tell-tale months for recovery is right now for your little one. I will keep you and your sweety in my thoughts and prayers and hope that he gets as much return as possible.
Ask us lots of questions and know that we are here to help support you through this hard time.
big hugs,
francine
-
Michelle_16
Re: Help!
Hi there Terrie.
Im not a parent but i am a 16yr old with Right Erbs Palsy! I only found these boards a couple of months ago but i can tell you, that every parent here feels the same about wanting to help their children and wondering if they will get better.
I havent had any pt, ot or ops! iv jst been left to recover myself. My parents were not advised on how my injury could b fixed when i was born, they simply were told the name.
My arm is still noticably different but iv learned to compensate very well. I dance, play the keyboard and the trumpet. Iv dont gymnastics(not very well), karate, u name it iv tried it! I think a lot of parents let their children try as many things and they will find out wot they can and cannot do!its better than been told no u can cos of ur arm...that give of a negative attitude!
I am only now goin to see a doctor about my arm on the 6th of january so i cant really help you out about whos good and so on but alot of the parents or ppl who are in the know will b able to help you.
I wouldnt worry about your son bcos he is just a normal child who needs a little more attention bcos of his injury but apart from that he can ATTEMPT most things. OK so he might not b able to bat a ball but he will b able to do so much more things. And another thing...by teaching himself to deal with his injury and compensate will make him a very strong boy from a very young age!
The hardest bit will b when he notices his arm is different or other ppl notice but believe me it wears of when a new person gets glasses or someone brings a new toy to school! lol. its jst like everything else. If ppl didnt pick on him for his arm, it would be his hair or his clothes. I dont mean this to upset or offend you but i was told the same when i came here and it made me feel better! i no you child is only a baby but he will b a good child.
He will also be able to see past another persons disability be it learning difficulty or the need to wear glasses bcos he has a disability of his own.
BPI can b a good thing i suppose!
You can email me any time and i will respond asap! im always on the net! net junkie...thats me!
My email address is shellie16@lycos.co.uk
Good luck.
Michellex
Im not a parent but i am a 16yr old with Right Erbs Palsy! I only found these boards a couple of months ago but i can tell you, that every parent here feels the same about wanting to help their children and wondering if they will get better.
I havent had any pt, ot or ops! iv jst been left to recover myself. My parents were not advised on how my injury could b fixed when i was born, they simply were told the name.
My arm is still noticably different but iv learned to compensate very well. I dance, play the keyboard and the trumpet. Iv dont gymnastics(not very well), karate, u name it iv tried it! I think a lot of parents let their children try as many things and they will find out wot they can and cannot do!its better than been told no u can cos of ur arm...that give of a negative attitude!
I am only now goin to see a doctor about my arm on the 6th of january so i cant really help you out about whos good and so on but alot of the parents or ppl who are in the know will b able to help you.
I wouldnt worry about your son bcos he is just a normal child who needs a little more attention bcos of his injury but apart from that he can ATTEMPT most things. OK so he might not b able to bat a ball but he will b able to do so much more things. And another thing...by teaching himself to deal with his injury and compensate will make him a very strong boy from a very young age!
The hardest bit will b when he notices his arm is different or other ppl notice but believe me it wears of when a new person gets glasses or someone brings a new toy to school! lol. its jst like everything else. If ppl didnt pick on him for his arm, it would be his hair or his clothes. I dont mean this to upset or offend you but i was told the same when i came here and it made me feel better! i no you child is only a baby but he will b a good child.
He will also be able to see past another persons disability be it learning difficulty or the need to wear glasses bcos he has a disability of his own.
BPI can b a good thing i suppose!
You can email me any time and i will respond asap! im always on the net! net junkie...thats me!
My email address is shellie16@lycos.co.uk
Good luck.
Michellex
Re: Help!
Terrie,
I'm Cindy mom to Melanie (3 years) and Matthew (19 months) both born with right brachial plexus injuries.
Melanie recovered at nine weeks. We saw a neurologist out of Philadelphia. We did range of motion at every diaper change. Melanie never had an emg, never had any formal therapy.
Matthew had a much more severe injury including phrenic nerve damage which required three weeks of being on oxygen after birth. Matthew required two surgeries so far and we do a variety of other things as well. Matthew has physical and occupational therapy along with Reiki energy, chiropractic, and acupuncture. I also wanted a c-section with Matthew.
Someone who I had corresponded via email a while ago had taken her son to John Hopkins. If you pass along your email address I will forward it to her. She is from the Baltimore area. My email addy is cpfranklin@psualum.com
Cindy
I'm Cindy mom to Melanie (3 years) and Matthew (19 months) both born with right brachial plexus injuries.
Melanie recovered at nine weeks. We saw a neurologist out of Philadelphia. We did range of motion at every diaper change. Melanie never had an emg, never had any formal therapy.
Matthew had a much more severe injury including phrenic nerve damage which required three weeks of being on oxygen after birth. Matthew required two surgeries so far and we do a variety of other things as well. Matthew has physical and occupational therapy along with Reiki energy, chiropractic, and acupuncture. I also wanted a c-section with Matthew.
Someone who I had corresponded via email a while ago had taken her son to John Hopkins. If you pass along your email address I will forward it to her. She is from the Baltimore area. My email addy is cpfranklin@psualum.com
Cindy
Re: Help!
Thanks so much for responding! It is nice to hear that people do make complete recoveries, even if Jordan doesn't. You and your family are in my prayers. Please have your friend contact me. I will email my address to you I would love to know about her experiences at Hopkins.
Thanks for everything!
Terrie
Thanks for everything!
Terrie
Re: Help!
You sound like a WONDERFUL person. I could only hope that my daughter- who has use of both arms- is nearly as great a person! Thanks so much for your pearls of wisdom! God bless you, and I will keep in touch! Please keep up the great things that you are doing! You are more than an inspiration!