I'M ALSO NEW HERE

[OPHERSMOM]

MY SON IS 8 MTHS OLD WITH A LEFT BRACHIAL PLEXUS INJURY. IS CURRENTLY BEING TREATED AT THE BRACHIAL PLEXUS TREATMENT CENTER OF AKRON CHILDREN'S HOSPITAL. ME AND MY HUSBAND ARE VERY UNSURE OF WHAT THE FUTURE HOLDS FOR OUR CHILD AND VERY SCARED. NO SURGERIES YET BUT THERE'S BEEN TALK OF DIFFERENT SURGERIES IN THE NEAR FUTURE.JUST NEED SOME HELP COPING WITH ALL OF THIS.

[tkirkland]

I remember being in the place that you are now. My daughter (Amaya) has ROBPI and has had no surgeries since birth. Amaya is now 8 years old. She is a beautiful, bright and loving child who understands that her right arm doesn't do everything as well as her left. She has limitations but I have learned not to close any doors on her because she still continues to amaze me with the things that she is able to do. She is my hero! We have just recently began to consider surgery for Amaya to protect her shoulder and to give her better external rotation. All I can tell you is that this is a very scary, uncertain and guilt ridden time as you want the best for your child - we all do! Remember that this is not your fault! Get second and third opinions before you make any decisions regarding surgery. There is a list of BPI specialist on this website. Give your son all the love and support that you can and he will grow to be a wonderful and special young man.

Good Luck,
Tiffany (mom of Amaya, 8)

[Kath]

You've come to the right place for support and help. I'm sorry your son was injured but glad you found UBPN. I know it has been a great resource for me. The only difference is that I was 60 when I found UBPN and discovered that I was not the only one in the world with a rare birth injury.

Please try to enjoy your son and remember he is so much more than an arm. It's hard when you have to focus so hard on ROM and all the therapy. My parents treated me as a normal child and worked very hard to get me moving. I really thought all my therapy was play.

Try not to worry too much. I am married, have three children and five grandchildren. Life has it's ups and downs for everyone and obpi kids are pretty resilient. We are a bit on the tough side we never seem to give up with trying to accomplish things. After all these years at UBPN, I can honestly say I have never met a child that is not strong and very capable, no matter how severe the injury. Keeping your sense of humor during the tough times will truly help your child cope with some of the obstacles he will face.

Kath robpi/adult

[OPHERSMOM]

Thank you so much for all your support. My son is now starting to have so much personality so it's really hard to do his therapy because he tends to get really fussy for a day or 2 after a long session.His shoulder is starting to wing and he is beginning to have a contracture. I sometimes feel that the surgeons and his therapist don't really know what to do to fix these problems so they just pull at strings. He seems to know that his therapy isn't play and starts crying about 1/2 hour into the session. I also have a 2 yr old daughter who has been great through all of his appointments and I know she'll be his most important therapy eventually. Did anybody's child out there ever crawl with brachial plexus? This is something I don't think he can do but the therapists keep pushing. At this point he's not even trying to and he'll be 9 mths on the 22nd. To me, he still seems 3 or 4 mths old. He's not eating like a 9mth old, he doesn't act like a 9mth old. He's just now able to sit up pretty well. He still falls over sometimes but for the most part,he's doing really well. He doesn't even ever sleep on his stomach because he has a hard time rolling back over sometimes. Just wondering if this is normal with a child this age. Or if anyone else out there has had these similar issues with there children at this age. Thanks again for the support!

[Kaiden'smom]

Wow, he sounds very similar to my son 10 months ago. My son learned to crawl on all fours at about 10 months, 3 weeks before he had the ACR surgery with doctor Kozin. Before that, he did an army crawl with his left arm. After the surgery, he learned to scoot around on his bottom, he was pretty determined. We also experienced delays in sitting, and he tipped over a lot once he learned. They eventually get it. My son also was a little slow to walk, he finally let go and took his first steps at 15 months old. He's 18 months old now and walks pretty well. Still falls when he trys to go to fast, but overall he's doing really well. It's amazing how much the ACR surgery helped him. He still has his limitations, but he gained so much in the external rotation. We also ran into the therapy issues you describe. My son would do good for about a half hour, then didn't want anything to do with the therapist. What worked really well for my son is to pull out the food when he hits that wall and his therapist can usually get another 15 minutes in. We use his favorites, Cheerios, or the Gerber freeze dried fruits. If you don't feel comfortable with the surgeons you see, there's other one out there. I strongly recommend getting at least 1 or 2 more opinions. We got 3 before my son had his surgery, each one had different opinions. We went with Dr Kozin at Shriner's in Philly because we felt most comfortable with his approach. We fly back out there in August, it will be 10 months post op, still might need another surgery. We just enjoy him and treat him like any other kid and try not to worry to much about what's to come.

[OPHERSMOM]

What's an ACR surgery? I don't think that I've heard of this. The surgeries that they are recommending are tendon replacement and eventually maybe a nerve surgery. He's progressing slowly so they don't want to do the nerve surgery yet. What part of the cervical spine were damaged with your son? Have they said if it's complete tear of the nerves or partial tear? Is your son happy? I know that a lot of people go to Shriners. Ours is a financial situation. He was finally approved for BCMH. This only covers the ortho surgeon and neuro surgeon that I'm taking him to. I know that sounds awfull but we can't really afford to take him out of network for a 2nd opinion. Had you applied for SSI for your son? If so, how long did it take to receive it because we were allready denied once and we are going through an appeal. We are trying to do everything we can though. He have a government program that comes to the house twice a month to make sure he's doing okay developmentally. And he's going to begin intensive therapy every week instead of twice a month. How big was your son when he was born?

[Kaiden'smom]

Please call and get an appointment with Dr Kozin, there is never a charge for any services there at Shriners. It's so worth it to get a second opinion. We saw 3 different doctors, all had different opinions on what needed to happen. Our insurance wasn't billed a thing for the surgery. You just have to get your self there. There's even help with that. Many of the airlines have programs that will pay for the flight. Northwest's program is called Kidcare. They paid for our roundtrip flight to Philly for the surgery. There's a Ronald McDonald house there that we've stayed at, it's only $10/night to stay there. We also drove there for our first trip, I'm in Michigan, so it was a pretty long trip. He did well, but I wouldn't recommend the long drive for travel post op. It's so important to get a second opinion, and if your son needs the nerve grafts, he's running out of time, so please don't wait. The ACR (Arthroscopic Capsule Release) surgery was done on my son because his shoulder had become subluxed (out of the socket). Dr Kozin wrote the scrip for an MRI, which we had done at a local hospital. They will send the results to him for evaluation. The surgery releases the tight tendon that was causing the internal rotation. It only left 2 little tiny scars one on the front and back of the shoulder. He was casted for 4 weeks. Then we went back for cast removal, then he had a brace to protect the shoulder for 2 months. When the cast comes off, you stay out there for a week, they do therapy twice a day everyday for that week. They even set up the stay for us at the Ronald McDonald house that week, it was free. We were able to get help from the local Shriners Hospitalers group to pay for the expenses of that trip. My son had damage to the C5 & C6, based on the nerve testing that was done at 3 months old, he didn't have any tears, just stretched. My son didn't need the nerve grafts because he progressed enough without them, he gained back the biceps right around the time they were deciding if he would need it, I think that was at 6 or 7 months. We didn't apply for SSI, but he did qualify for a state program for children. In Michigan it's called Michigan special health care services. We have to pay in a monthly payment of $50, it's based on your income, but it covers the costs of everything related to the injury that the insurance won't pay. Your state may have a similar program, your therapist may know more about it. Our insurance will only cover 30 visits to the therapist per year, so that program is paying the rest, it even covers the insurance copay for the therapy sessions. My son has cut back to therapy every other week for now, and he also gets therapy once a week from a state program. Problem with that one is they are based out of the schools, and close for the summer and whenever the schools close. After his surgery once the cast came off, he was going 3 times per week, plus seeing the state program therapist once a week. My son was 8lb, 8oz at birth, so not terribly big. Same size as my first son who was born without any problems. If you have any other questions, feel free to ask, or you can email me at merecalvin@yahoo.com
Meredith

[tkirkland]

One thing that I have learned through the process with my daughter is that surgeons usually want surgery and therapist usually do not. I was always encouraged by my daughter's therapist not to do surgery. You have to do your best to resist the many pressures that you will receive from many different people (including family). Of course, take the advice from therapists and doctors into consideration but do your own homework. You know your child best!

My daughter never crawled in the conventional way. She had a military style of crawling. She too developed a slight contracture of her elbow at about one years old. I will admit, we are still dealing with it at 8 years old. This is one of the reasons that we are now considering surgery in addition to her shoulder. We have not decided anything. We are still in the research phase.

[tkirkland]

We just met with Dr. Kozin for ther first time last month. He was absolutely wonderful with our daughter. He spent so much time with us and made sure that all of our questions were answered. We are considering having surgery with him for our daughter. We are still researching. From what I hear, he is one of the best out there. It certainly seems that way to me.

[tkirkland]

Thanks, I will...