ROBPI for 14 years now

[Judybethri]

My daughter was born with ROBPI 14 years ago. Her dad left because he couldn't handle having a child that was less than perfect - his words... in my eyes my daughter was more than perfect. We've been in PT/OT since about 9 weeks old, had a muscle transfer at age 2, tendon release, and an osteotomy at age 10 with Dr. Waters in Boston. She has gained about 65% use of her right arm, but has endured years of pain and hard work to get there. Middle school was hell, and the kids were mean. She is struggling with being different. Now in High school her workload is ever increasing and she aches at the end of the day from so much writing. I work full time and have 2 other children at home, so this has not been easy..... OK that said, I am wondering
1) if anyone knows of anything else that can be done to increase the use of my daughter's arm.
2) is anyone else having issues with medical coverage for on-going therapy?
3) is there a peer group that she can join so she doesn't feel so isolated in this.
4) how do you deal with the medical bills that aren't covered by my medical?

[F-Litz]

Hi Judy, I have an 8 1/2 year old with bpi. I would suggest that you look into the Alpha Smart keyboard to help her with the writing aspects or just having a laptop at school to help. There is also a one-handed keyboard that a young man with a traumatic injury posted about long ago - maybe you can find that post by doing a search on the message board.

Does your daughter have an IEP or a 504 plan? It seems that if she doesn't and she's having these issues now, it may be a good time to set up some kind of plan for her to help her through school. And also - some schools have counseling groups for problems like what your daughter is experiencing. I know that in some schools they are being very proactive about behaviors like this.

I hope you can get the help you need for your daughter. I wish her the best.
-francine

[Mare]

Hi Judy
I'm Mare and my son Frankie is also 14 and has a left BPI. We to are looking for ways to get him more function. Frank also has had many surgery's his last was the mod quad this past Nov. He's just out of the splint 1 week now. He has no real use of his arm except to help carrying things, his hand and elbow are the real issue the hand doesn't work and the elbow has a bad contracture and is dislocated. Yes he has problems with over use even with the school giving him breaks his right hand aches and cramps up alot. I think the thing that is most affecting him right now is trying to fit school ,therapy after school, then homework all in one day.He feels like he has no free time or choices in his life. He's even more emotional now because we saw a BPI specialist yesterday that feels there is not much they can do for him, this was a 2nd opinion the 1st being more positive giving him hope that he feels is gone now. We are going for the 3rd opinion in March at the Philadelphia Shriners Hospital for kids. It is a free hospital so this helps when insurance won't pay and they have some really good BPI doctors. There are alot of them around the country I don't know if you've checked them out. We are going to have to start filing appeals to continue therapy for Frankie. His surgeon said 6 months therapy 3x a week the insurance company has a limit on number of visits per injury. Like we don't have enough to deal with. Well I hope this helps if you want you can email me at Tinny61@aol.com Mare

[Karen McClune]

Hi Judy,

The young man that Francine is talking about is my son Ryan. He uses a one handed keyboard call the Bat personal keyboard. You can find it at www.nanopac.com/keyboard.htm or google one handed keyboard or google nanopac. Ryan has used this keyboard now for almost 7 yrs. He was very lucky as he learned to use this keyboard within hrs.

If you have any other questions please either email me at karen@ubpn.org. If you would like me to call you, just email me with your phone number.

Hope this helps.

Hugs, Karen

[LisaMyers]

Hi. I have a daughter with a right brachial plexus injury.
I have found that since she is a social butterfly it has made her life a lot easier when dealing with these issues.
My daughter just turned 15. Their bodies are changing so much...it's not easy, to say the least. 13 and 14years old were a little tougher as far as being content with her body. My daughter wore a jacket in 100 degree weather last year in 8th grade...but this year, I have to beg her to wear a jacket! She wears spaghetti straps all of the time! At the beginning of her school year, her physical education teacher worked them out a lot. It really helped Abby with her range of motion. So, even if your child isn't going to pt or ot, she can do aerobics or dance stuff that can help...just a suggestion. Also, I recently found a Chiropractor who specializes in pediatrics as well as Bio-cranial release.
She began these releases in December. Well, she had one leg about a 1/2 inch longer than the other and her leg was tight at the calf. She always complained about her leg, I thought it was growing pains. But he felt the tightness. Well, that's all gone now! And, her legs are even! She had trouble bringing her pinky finger to the end of her thumb(she could bring it to the middle of her thumb). And, now she can bring it to the end of her thumb...that was the first improvement we saw. I'm amazed at this. This chiropractor is in Murrieta, California. His name is Todd Donohoe. His website is www.donohoechiropractic.com
My family was a host family for 40 days of Purpose, and a couple came to the study at our home. Well, about 9 months later the man sees us at church and says he's been praying for our daughter and he believes we should go to this Chiropractor. So, hang in there! There are blessings all around us! I pray you find answers to your questions and receive lots of blessings! You and your child are so special! What a wonderful mom you are to guide your beautiful daughter with love and care! Being a mom is the best job on the planet...and actually I don't even think it's a job, because how could a job be so wonderful!
Also, if you haven't read this book, I still love reading it! It's called,"The Power of a Positive Mom" by Karol Ladd. It's given me the secrets to a greater relationship with my kids and even others.
P.S. I find the BPI picnics are a great way to help my child to feel like she's not alone with this injury. She loves helping and playing with the younger children there too. OH, and, medical insurance is a big pain in the you know what. But, this Chiro has us on a military plan...and actually, we just found out that our insurance is going to pay for it! It was inexpensive anyway. Hope all of this helps, oh and I have to add this...I told you about the book, because I tell everyone because I thinks it's so helpful! In no way did I think you were negative.
Blessings,
Lisa

[dunloe]

How can I help you? I think that you need to go back to square one. Make an appointment with your child's pediatrician, and make a plan that involves that doctor, a BPI specialist, your child's school and your insurance program...

dunloe


Message was edited by: dunloe