United Brachial Plexus Network, Inc.

hello, I haven't been to the boards for a very long time but someone today suggested that I add my story to the others in hope of helping someone else. My son is robpi, we were told that he would need primary but my gut kept saying wait, I did and way past the "norm" of recovery he started to get quite a bit of function. He had finger only until about 4 1/2 mos then a little movment and then quite a bit. I was an emotional wreck trying to decide about surgery for my child, you always want to do the best for your child, not just short term but long term. Luckily for me, I met another mother online thru this board about this time who I consider my angel. I was able to bounce off of her my ideas, she shared hers and her experience and it really helped alot to have someone to talk to. My son just turned 3, he has pt weekly and there is really no way to tell anything was ever wrong with him to someone who doesn't know anything about bpi's. To those who do, he does still chicken wing a bit but he looks great and I'm so thankful, grateful and lucky for his recovery. I'm also glad I trusted my gut and waited. Someone else mentioned opening the can of worms and I also agree with that. But I will say that if some point and time came and it was obvious that he was lacking in something then I would no doubt explore the possibility of surgery, the only thing I want to be able to tell him when he's older is I did everything, read everything, etc to make sure he had the best chance of as much recovery as possible. My email address is sajastand@aol. if you want to talk directly. Thanks to everyone who posted on this, it's hard to have a different path then others, I have been criticized and put down for my path and it's not fair. There should be no judgements here, only information and help to those who unfortunately have to deal with what we've already had to go thru. Good luck to you to you and your family.

Guest , Thank you, however I did not assume nor do I assume, that if my Daughter had had the MQ she would not have dislocated or have other issues . What I said was when she became chronicaly dislocated and in pain I had a flicker of regret......only a ficker as I know I have made the right choices for her.

We live in Canada, BC, her surgeon for this MQ was Dr. Rilley.

My daughter is 10, nearly 11 years of age, and she has not had surgery. I've not been as concerned about the needs of TODAY as I've been about what to do now that will PREVENT problems down the road as she ages. The reason I say this is because TODAY, she is nearly fully functional, except for limited external rotation. She has everything else, and we've sought several expert opinions throughout the years. What concerns us is what's in store for her down the road. Having known several adult obpi's, I've learned that throughout her teenage years, her bones will continue to grow and change and I have been concerned about making sure that the bone growth is occuring properly. At this point in her life, we feel secure in knowing that she's in a good place. IF she begins to have some issues, and we know what they would be and/or what to look for, we will begin to explore options that will include surgical intervention.

By the way, we've researched and tried several alternative therapies and treatments throughout the years. We've found that it's important to recognize when it's time to stop, take a break, and just let her be a kid. She has learned many life skills, exercise programs, etc. at her tender age, and we're hoping that this early training will follow her as she ages, so as to prevent serious injury or overuse to either limb. We have relaxed about her injury for the first time in our lives. It truly brought a sigh of relief from our daughter when we told her we are done with our searches and we just want her to go on like any of her friends and live a "normal life." This brought tears to my eyes, knowing how much she needed to just go on with living. We could only do this because of the many opinions we've sought and the information and research we've gathered.

Educating yourself and being open to exploring new ideas (even if you don't like the sound of the idea) is important when making this type of decision.

Cathy, what perfect words and very well said! I appreciate and respect your vision and I share the same vision for my child.

Lenni

Cathy,

Brings tears to my eyes too. It is all just so hard and I need to remind myself about striking a balance between this injury and just living life without the next surgery, therapy appointment or doctors opinion. I am so happy that your daughter has found relief in letting go and moving on with her life.

You mentioned that you are aware of what to look for as she goes through the teen years, etc. Would you mind sharing some of your information and knowledge that you have gathered? I would sincerely appreciate becoming more aware of what to keep an eye on and what you have learned from the adult bpi's.

Thank you!

Hi Everyone,
I enjoyed reading these posts. Although we recently went through surgery, we had decided against it up until a few months ago (Sophie is almost 3). I won't get into all the reasons for why she had surgery, because that's not what you asked for in your post. I just wanted to let you know I totally respect those who decide not to do surgery, and thank you for posting your opinion. And I also think it is excellent advice to give therapy a rest when you think you need to. ROMs are always important, but we try to fit them in in a way that doesn't feel like therapy.

You need to follow your gut and do what you think is best for your child. And I hope more people are encouraged to post on the boards - they have helped us through so much - even through changing opinions (lol).

Tina

I agree that a therapy break is imperative for many of our children. When Ella was very small I always wondered how parents could give their injured child a therapy break and I never believed it in. Well, it hit me hard when I decided to do this for my own child. I learned a lot about how important it was for a break to happen. Ella was crying and screaming at each therapy appointment. She wouldn't tolerate it in the least bit. It was just a huge nightmare. Finally, I knew where things were headed and we decided on a formal therapy break. Therapy was still done by myself and my husband at home b/c we knew it was extremely important. We had the break from formal therapy for at least 2 good months, maybe even longer. It was exactly what Ella needed. It was a phase for her. Once she was out of this she started back into therapy and did wonderfully. Nothing negative came out of this break and it didn't hurt her a tiny bit. It actually helped her out in the long run. So if any of you are thinking about this kind of break b/c your child can't handle it then by all means go for it. Even if you cut down therapy to once a month for a couple of months. As long as you are willing to do a little extra at home, everything will remain just fine. I am saying this b/c I used to think that this was something that shouldn't happen, but now I know it is perfectly safe. =)
~Krista~

Thanks Lenni and Guest,
Just to follow up with Guest's question as to what we are looking for as she ages that might require additional medical attention....It's specific to her particular injury.

Once again, each bpi is specific and unique to each person. Remember, while two people may have similar nerves injured, the degree of injury is unique to each individual.

If down the road, she starts to feel a little pinching near the under arm area or if she has difficulty with movement around the shoulder/chest area, including the inability to raise her arm to the degree she is able to now, we would again consider our treatment options including a pectoral release. We would also look into the possibility that the shoulder has dislocated. Hopefully, she is naturally strengthening her limbs with swimming, dance, basketball, and other activities she enjoys as a young person. I hope this has been helpful. Cathy

One thing I have often wondered, is there an age at which you would respect your child's wishes not to have surgery? I can't imagine forcing my ten year old to go through it if he didn't want to, and from reading the posts from adults who had no surgery I couldn't really argue it was 'for his own good'-not saying it wouldn't help him, but the idea that his life might not be as good without surgery is not one I would go along with, this thread really shows that. He actually does not need any surgery but it is just something I have often wondered. Is there an age at which a person should be able to determine their own future? Has anyone struggled with this?

I would love to hear people's thoughts and opinions on your question. It has crossed my mind too, since I feel all of us, whether we chose surgery or no surgery are indeed making decisions FOR our children. I HATE that part, I really do. I have felt so much pressure at times and hoped to goodness that I was making the best decision since I was not making it for myself but taking someone elses life into MY hands with MY decisions. It is awful that we even have to make these darn decisions!

As for me, I would like to respect my child's choice for living his or her life with or without surgery, but then again I struggle as the adult who makes many other decision regarding my child's well-being. Just so difficult..............any other thoughts out there?