Infant with BPI

[Kristin B]

Hi,

I'm new here so forgive me if I'm in the wrong room. I am looking for any parents who's infant suffers from BPI or anyone else out there who has it and either had the surgery as an infant or didn't have the surgery and what you think today regarding your decision. My baby girl is 14 months old with R-BPI and has no function below the shoulder. As you know, there a lot of options out there and I'm having trouble making a decision on her behalf. Any help or related experiences would be truly appreciated. Thank you.

[kd's daddy]

Hey Kristin I am glad you found this site and you will get alot of help to your questions here. My kd bug has c8 avulsion also. We did not do the primary,but we are going for mod quad and triangle tilt with Dr. Nath. I want to tell you that you need
to get a couple of good therapist and suggest aqua therapy as one of those and do therapy 2-3 times a week . with kd we do 4 times a week. Hippotherapy, Aqua therapy, in home ot visit, and a visit to stl childrens once a week also. Kd has to have surgery although all this therapy helps keep and maintain some of the movement she has. I wish I could help more but cant say too much we are in a lawsuit now.

[admin]

Dear Kristen,

I answered your other post, but I wanted to tell you about our experience so far. My 2 year old grandchild
has had the nerve graft, and mod quad, and with each
surgery there has been improvement. Will there be another surgery, I expect so due to the shoulder joint.
Could she have done without the nerve graft? Possibly so. Could she have done without the mod quad? No Way!!
Will she need the capsulodesis, or triangle tilt, or
whatever for the shoulder? We are waiting on this one.
You will get other posts from parents, and they will tell you every childs injury is different, and I hope
you will receive peace in making your decisions for your precious baby. Very, very sincerely. Grandma

[Kristin B]

Thank you for getting back to me re: my post. KDBug sounds wonderful and I wish nothing but the best for her and your entire family. Thanks for the adivce re: therapies: My daughter has been in therapy all her life; I started ROM at 9 days old and put her in physical and occupational therapies, each twice a week. They are great therapists and working very hard with my daughter and are helping a lot too. She had no mvement whatsoever before ROM and professional therapy which is one reason I question surgery at this point? She is now 14 months old and I admit, all she has is shoulder function, nothing below the shoulder, no function, no sensation, but what she does have, she got back via therapies and ROM and without surgical intervention. My other concern is I hear a lot of information about Dr Nath and we are in Phoenix, no where near you guys. I was told by an orthopedist when my daughter was 3 months old, if I ever did consider surgery, to have it done in Texas, not Phoenix. I've decided that for now, no surgical intervention is going to be done until a lot more of my questions are answered and so far I literally have 19 questions written down! Thanks again for your help, I truly appreciate it and my best to you and yours! Kristin

[Kristin B]

Dear Grandma,

Well I took a lot of comfort in your post...thank you very much for sharing your information with my regarding your grandaughter. Gives me a lot to think about, but, that's good. I'm so glad to hear she had improvement with the mod quad!! That's encouraging. I have to say, just your calming influence on your post made me feel better! You have all helped me already...I haven't made a decision yet, but I don't feel all alone anymore and for that I thank you! I wish nothing short of the best for your grandaughter and yourself in life! Thank you again! Much admiration and love, Kristin

[JoKats68]

Hi Kristin,
My 6 month old recently had surgery. He has avulsions on C1 C2 C3 C4 C5 C6 C8 and T1...he has NO function from the shoulder on down. They did One nerve transfer on C7 and hope he'll at least get the pincer grasp in that hand. We are hoping for a miracle.
I am glad I did the surgery without it he would have had nothing...now at least he has a chance.
Jo( Nick's mom)

[Kristin B]

Hi Jo,

Thanks so much for sharing your situation with me! Please keep us posted as to how Nick is doing!! I'll add you guys to my prayer list for an excellent recovery. It helps to know that such a little one, as your Nick went through the surgery and it sounds like you don't regret making that decision and that helps me. Nick's situation sounds a lot like my Ellie's situation...NO movement from the shoulder down. Thanks again for sharing and the best of luck to you and yours! Love and Prayers, Kristin (Ellie's mom)

[TNT1999]

Hi, Kristin. Welcome to the board. I'm sorry you had to be here, but glad you found us. I have a 6 1/2 y.o. daughter, Nicole, who has a total LOBPI (total meaning all 5 nerves C5-C8 & T1 were injured). We were late having primary surgery (she was 10 1/2 months). She had 2 avulsions, a huge tear across 2 nerves, and stretches and neuromas. Nicole has also had 3 additional surgeries (the 2nd was exploratory (they were considering nerve transfers) / neurolysis; 3rd was the Mod Quad; 4th was the Capsulodesis). All of Nicole's surgeries were done at TCH before the age of 3. She will also likely have tendon transfers at some point b/c she can't extend / open her fingers (except for the pointer finger which stays extended). She can grasp although it is weak (too weak to support her on the monkey bars; her shoulder is stable enough to hold her, but she lacks the hand grasp strength).

How do we feel about our decisions to have Nicole's surgeries? -- absolutely no regrets. Nicole's injury is very severe, but with the help of the surgeries and various therapies, she functions very well and has gotten so much more back than she would've w/o the intervention.

What surgery are you considering? I ask b/c if you're considering primary / nerve surgery, there is a limited timeframe to do it for it to be successful. Have you consulted w/any BPI specialists yet? We got opinions from 4 BP Specialists (well, 3 who I would consider specialists and 1 who the insurance considered a specialist) before making our decision. They all recommended primary surgery asap, so mainly our decision was where to go.

For me making decisions is a little different now b/c Nicole is older and I let her have some input. When she was younger and we had to exclusively make decisions for her, I always tried to think how she might later feel about our decisions. I wanted her to know that we did all we could while also minimizing risks as much as possible to help her get as much recovery to her arm as possible. As she started to grow and mature, it seemed to confirm that we were making the right choices FOR HER (I say that b/c each family has to come up with their own decisions). She has always been a willing participant with therapy and has recovered well from surgery. Her willingness to do therapy and desire to help her arm from a very young age was so helpful to us in being somewhat aggressive with therapy schedules. Some children are very resistant to therapy and I know that must make decisions harder on the parents. Based on the personality my son has, I couldn't imagine him tolerating nearly what my daughter has gone through so I'm truly thankful to God and feel that He has given us what we've needed to get through this BPI journey so far.

Sorry to ramble on here. Feel free to ask any questions you have. Also, you may e-mail me if you'd like. Also, what's your baby's name? Take care.

~Tina, bpmom@comcast.net, Mom to Nicole (6 1/2 y.o. w/LOBPI) & Joshua (1 1/2 y.o. w/NOBPI)

[JoKats68]

Hi Kristin,
Thanks for your reply. Where in the US do you live? Have you found a neurosurgeon yet? We live in Florida, and used Dr.John Grossman. He was referred to us by a friend of mine who is chief of pediatrics at Mass General Hospital. We asked him to find us the best and this is who he found. We LOVE him! Nick will have years of more surgeries to go, but if it means getting him some function back then we'll do it.
Jo(Nick's mom)

[TNT1999]

Hi, Jo. I'm surprised your friend didn't refer you to Dr. Waters or maybe it's b/c you live in FL that he referred you to Dr. Grossman? Have you ever seen Dr. Waters at Children's Hospital in Boston? Just curious. You may e-mail me if you prefer.

~Tina, bpmom@comcast.net, Mom to Nicole (6 1/2 y.o. w/LOBPI) & Joshua (1 1/2 y.o. w/NOBPI)