United Brachial Plexus Network, Inc.

I have not been on here for a long time. Our daughter has had remarkable recovery from her nerve transfer a year and a half ago, but now we are faced with decisions again. Frankly I am scared to death, and get angry every time we have to face things like this with her. She will be 3 this August.

We are concerned because we feel that she may not quite be ready for the rehab that comes along with this surgery. We fully trust our doctors but would really like to hear first hand from parents what we are going to have to deal with on this one. We are thinking of mentioning to try botox injections to buy us a little more time so that she would be an older 3 for this surgery.

Could you please share your experiences with us and maybe that will better help us to decide when to schedule the date.

i am new to this injury myself, i do not know about the tendon transfers. but i just wanted to say you are doing a wonderful job at taking care of your daughter. hope this surgery goes as good as the first one.

How many opinions have you received for the tendon transfer? If I've learned anything in 11+ years with this injury, it is to take your time making decisions. And get lots of opinions.

As for your worries about handling rehab... since your child will only be about 3, the "rehab" does not fall to her, but to you and her therapists. My daughter had tendon transfers at 14 months old. We did aqua therapy, physical therapy and occupational therapy (not to mention a lifetime on the playground). Your therapist should be making the "rehab" fun! At this point, all therapy should still be fun.

Good luck in making this decision, I know it is hard

claudia

Hello. We did the surgery at 2 1/2 and I'm so glad we did it then. For us, it's the terrible 3's, not 2's. She is so emotional now and doesn't comply with therapy (or directions in general) like she used to. So, for us, sooner was better. Another consideration is clothing. It would be much easier to dress your child during the warmer months. We did it in winter. I bought larger size clothing and then had them all tailored to fit the brace. More expensive and time consuming to purchase, tailor and dress them. Tank tops or dresses would have been preferable to us. Each kid is different, so take it all with a grain of salt, or two. Good luck.

If her shoulder joint is not getting malformed, you can afford to wait. We waited on tendon transfer with our son (and are still waiting) but did have the capsule release because his shoulder was subluxing. The only rush for shoulder surgery is if the shoulder joint is deteriorating. I think you are with Kozin? If that is the case, you should talk to him and ask just how urgent this surgery is. There may be no rush at all.

Kate

Hello again. I forgot to mention... my child had a much easier time than I did! Kids adapt extremely quickly. Also, the younger your child is when it's done, the less your child may remember later on. Mine did have to sleep with me until she was done wearing the brace because she could not turn over on her own once she was face down (that's how she likes to sleep) She did get the stomach flu during this time, and threw up twice when she was face down and couldn't turn over. I was able to immediately pick her up both times, so it worked out fine. Only mentioning for safety sake, not to scare you. Also, the company we got our brace from had a picture of stuffed animals wearing that brace and another kind. I got them to copy it for us and taped it on our hall wall. It really helped her get through it. I maxed-out my paid family leave to help her, plus took off a few more weeks.

Her arm works so much better now. She is doing well with her ADL's. And yes, I am still as pissed off as ever that this happened.

We have done Botox and are very pleased with the results, but not everyone has the same response. I know some children that had no response to Botox. We have had 3 rounds of botox over the last 2 years to obtain different movements. We have gained wrist extension, bicep function and and external rotation from our injections. We weren't seeing any of these movements before Botox. With my son, (will be 3 in March), the other movements were masking these functions. He could be the poster child for Botox!

He had primary nerve graft surgery at 3 months, and we have not had any other surgeries. But again, each child is different. I agree with Claudia and would seek another opinion and discuss the option of Botox with your specialist to see if it would be beneficial. I know of some specialists that also will not do Botox injections, but many will. There is only a small amount of botox injected for bpis.

You can also email me at stlbpi@yahoo.com

Anise