United Brachial Plexus Network

Without going into detail and without dropping names we were sent to a different set of doctors for an independent medical evaluation. We felt the doctors were very conservative in their methodology and they really left us feeling unsure of what the future course of treatment will be for our son.

My question is where did you get your treatment and do you feel they are conservative or aggressive or moderate. Conservative being easily satisfied and aggressive being there is always more we can try to get a little better function.

I hope this is clear enough because I don't want to go too far into details.

I work toward a pain-free future and that's how I base my questions and research. I don't focus on what it "looks" like or "function". I focus on joint health and spine health. If I do this or that or don't do this or that what might it be like in 20 years, 30 years, 40 years. (of course look and function usually come along with the answers but honestly its not my focus). Best of luck in trying to figure this out. I know it's hard.

The specialist in our area is very conservative and basically doesn't believe in any secondary procedures, and if he does agree to them, he only will recommend or refer the child after age 4! To me, that is unacceptable, especially when there are procedures out there that can help some children gain more function!
I guess my views fall somewhere in the middle. I agree with some aggressive approaches, especially if the child needs primary, but on the same note, some secondary surgeries I feel may be done far too early without letting the body time to recover more naturally. Again, just my personal opinion!
I have started looking into other specialist's since I am no longer (never really was) comfortable with the one in this area, hopefully we will find the right fit soon!

Best wishes to your family and hopes for a wonderful recovery for your son, my baby girl and all of our children!

Take Care.

PS (1st guest again)

The adult OBPI's have taught me a lot about why and what we need to do with our kids early on.

I think if you look at this from a different angle, it might help you. You are viewing this from the doctors perspective; that is: is the doctor conservative???

I think you need to decide what YOUR views are. Do you want to take a more moderate approach? or do you want to be more aggressive?

We (my husband and I were together on this-still are) took a very aggressive position on Juliana's care. We did surgeries that we felt would help her. And, we did them as early as we were comfortable. We fought for the maximum amount of ot and pt that we could get and I worked like crazy with her at home. The idea of "waiting for the body to heal" was not one that we could come to terms with. By our natures, we had to "do something". She is now 5 1/2 and we have relaxed quite a bit. She has become a more active participant in her care. And as such, we can step back a little, and we have.

However, we are always in search of that "thing" that will give her back what function she doesn't have. We know there isn't just one thing...but we continue to pursue ways of making her the most functional she can be. We do this by contacting doctors whom we trust, and by treating her like a "normal" child.

There are doctors whose views of this injury do not jibe with ours. We've met some who just don't care to do anything for bpi--even though they consider themselves bpi surgeons!! And others who would cut the air out of balloon--and it record time!!! So that doesn't work for us either. As Juliana continues to gain in some areas and continues to compensate so well in other areas, our views have changed. A doctor whom I might have gone to early on, is not necessarily one I would go to now.

I think I am rambling now.... but I think what I am really trying to say is that you have decide what you want, and then go and find it.

good luck,
claudia

When we were faced with the surgery question we got opinions from several places, and they ran the gamut on the conservative/aggressive scale. At first it seemed overwhelming with the complete lack of consistency, differing philosophies, and frankly the range of understanding of this injury. In the end, we went with what made sense to us - intuitively, from what we had learned biomechanically about the injury, long-term issues that we had talked to adults about, and so on. We had thought a lot about what our goals in managing this injury on behalf of our child were and went with a specialist whose goals and philosophy matched our own.

After talking with a few specialists, we realized that we really knew a lot more than we thought and some of what the specialists told us flat out didn't make sense (one told us that they don't see long-term effects as adults...hmmm, wonder what the adults would say). We also were fortunate enough to see the a patient of a very conservative doctor and one of a very aggressive doctor and talk to their families. All of that information we gained really helped us form our opinion and settle on a course of action.

I guess to us it was important to keep getting information until we were sure of the course of treatment.

Best to you and your family, and especially your son.

What does it really mean to be conservative or aggresive? The way I look at it (because I work aggressively with my child) is that if you know that a problem exists why risk having it get worse so that down the line not only do you have the original problem but you have secondary problems.

It's kind of like teeth. You find out that you have a tiny cavity that has gone through the enamel of your tooth. Do you sit on it and wait? Or do you say yes to getting it filled.

In my mind, getting it filled would be "aggressive." You've stopped the problem dead in its tracks. Waiting to see what happens to it would be "conservative".

It's possible that the tooth might take care of itself if you keep it clean and use fluoride rinse 3x a day and it will remineralize. And it's possible that the decay will get worse and you'll end up needing a root canal, a cap, and/or a tooth extraction with a bridge or an implant to take care of it - but that won't happen for 5 years after the initial decay. What route do YOU take ?

And might you take a different approach if it was a FRONT tooth versus a BACK molar ? if there was pain involved ? if it might affect other teeth and your gums and maybe your bone?

By your definitions, I guess our approach is aggressive. I LOVE the tooth analogy; that is exactly how we approach this injury. But I'll temper that by saying that we are approaching the care for our particular child, with his particular deficiencies in function, and we believe this has been the right approach for him. I've been too freaked out when I've read what can happen down the road without early intervention!

What I don't like is the terminology that a lot of BPI parents use: "aggressive" versus "conservative." "Aggressive" is not a term that is usually used in a positive context in any scenario, while we believe early surgeries can indeed be the MOST positive thing for our son in the long run.

I think it would be better to say something like "proactive" versus "wait-and-see." Wait and see, for what? To see how withered and lifeless my son's arm gets over time, when no doctor can guarantee future improvement by waiting? That seems foolhardy to me.

But again - we're all different. If I had a different child with a milder BPI who seemed to be rapidly improving on his own, then I might think differently.

I think if you are wary of the approach your doctor told you, that's a sign that you should take a new approach and get a new doctor. Sometimes Mom knows best!

Janet

The way I see it is that my child has healed pretty well without surgery - yet she does have many issues because of her injury - maybe she'd have more issues BECAUSE of surgery - it's a very hard call. It is not like teeth - and the 'wait and see' has been seeming to work well because she has gained so much strength and can now supinate farther than ever without surgery. The decisions are so hard to make - and surgeries are so uncertaain on what will help and what might not. Some surgeries might need to be repeated and some work great.
I agree completely with Claudia's post.

I also think that you need to factor in the whole child into your decision - not just what you want the arm to be able to do - because maybe your child's arm means more to you than to your child - which sounds strange I'm sure, but I know that with my daughter she is doing just fine and her arm is not a big deal to her right now - - and her arm is not getting 'withered and lifeless' - it keeps getting stronger. She has no scars from surgeries - has always been a regular kid - and when she is old enough and possibly wants surgery she will get it - I will make sure of that if she wants it - and by that time they might know more about the surgeries that they are coming out with. She is not an experiement.

Back to the original poster - I would ask myself how my child will be able to deal with the surgery, the re-hab - the scars - what would my child benefit or what would my child lose because of the time spent trying to heal and how would that surgery impact the family - would it be worth it. I think alot of my motivation when Britt was little was out of guilt and I wanted so much to 'correct things' so I wouldn't feel so guilty for having something happen to her. Of course I only wanted the best for her - but at the same time - she was fine with who she was. She does NOT blame me - she knows me - I am her MOM and she knows that I would never ever want anything to happen to her. With every surgery comes risks and choices - some kids would prefer not to go thru all of that and try to heal (my daughter's choice - and I will always respect her choices).

Of course I would have her teeth fixed - that's minor - we have regular dentist appts and ortho (for braces) appts often - but her arm to me - that is a whole bigger issue. I am not an irresponsible parent. She has regular doctors appts - but to do surgery on nerves and shoulders is a big step - sometimes needed - but maybe sometimes being too aggressive with trying to change something that no matter how many surgeries you go thru will never make that arm just like the other one.... no surgery will do that. I think that the original poster had some good points and the decisions are so hard.

We have gone the conservative route ourselves - and my child is doing well. Others might need to go the aggressive route - I think if there is no hand function - I'd probably be more aggressive. It is such a personal choice - but I do think that our kids will understand why we do and choose what we do - no matter what our choices are.
Christy

Interesting comment about the teeth...

I had a "cavity" that dentist after dentist kept recommending I get filled. But it never seemed to get any worse, and I am a wimp when it comes to dentists... so I kept putting it off and putting off. "Check it again in 6 months" I always said. Finally, I agreed to let a dentist do it while doing some other work on my teeth. This was after about 10 years of putting if off.

Well, I had a horrible jaw and toothache immediately after getting the filling. I went back, the dentist "filed it down" but it didn't get better. Finally, the third time I went back, the dentist took and "imprint" of my bite, and guess what? It wasn't a cavity from decay - it was from my bite! It was a depression in the bottom tooth that the top tooth fit into just perfectly; I had massive tooth and jaw pain because my teeth no longer fit together properly once it was filled. So he recreated the original depression in the filling and everything was fine.

So now I have a nifty little ceramic filling in my tooth with a perfectly shaped "cavity" in it All that pain, time and frustration just to end up replicating exactly what I started with?!

Good grief!

Kate