United Brachial Plexus Network, Inc.

We have a board for the adults with OBPI, I kind of think it would be nice to have a board for the parents of children with OBPI.

How does everyone else feel about this?

Terri

As a parent of a 7 yr old daughter with ROBPI, I feel pretty comfortable with the boards as they are now. I was thinking a "Legal Issues" forum would be nice.

Joshua

I think this is a great idea. I'll take it even further. I'd like to see one specific message board for NEW parents with children less than two years old with BPI. The general message board can be very intimidating, and I will admit that I don't feel very comfortable on that board. Frankly, when the parents who've been through this for several years already, they often discuss frightening issues, issues that both concern and confuse me. It's bad enough going through this, but when I read half the stuff on the general board, it's so upsetting that I'll not come back for weeks. A little extra sensitivity for those parents who are just now going through this process would be welcome. But when experienced parents start throwing around the BPI medical terms, getting into shoulder separations, etc, I'm not likely to come back for a while. It's bad enough having to see your infant go through this, but when seeking out support, to be scared even more adds even more stress.

The problem with breaking up the board even more is that it's the "seasoned" parents that support the new parents and if the boards were to break up even further then who would mentor the newbies and answer all the questions?

I can completely understand why listening to parents of older children speak might be a scary and stress causing thing however in this age of doctor's not being completely truthful about outcomes and timelines, etc. it's very valuable to hear from parents what the reality is and what to expect. Listening to the seasoned parents should help you formulate better questions because you'll have more information about the bigger picture as hard as it may be to read or look at.

Had it not been for the parents of older children I would not have gotten my child for primary surgery in early enough. And thank God I got her there when I did, we were almost too late for a decent recovery.

Same thing goes with a legal board. A parent who has gone through the process might not take the time to move to a separate legal board because they want to put it aside and move on whereas if it were on the general message board they might answer a question there.

Although I'm not a new parent, a TBPI, or an adult with OBPI, I read all of the boards and feel free to comment on any of them. I have also gained a lot of information from all of the boards (more than I have given). There are many people posting on the forums and within UBPN who are dedicated to sharing information with new parents and I have confidence that they, as well as I, would seek out, read and share experience with new parents on any forum. I can really understand "angryparent's" feelings and I have seen messages from other parents who became overwhelmed and left the forums altogether for months as a result of these feelings.

I'd vote yes to a board for new parents. I just don't see the downside.

Joshua

I am a Mom with a 2 yr. old who suffered a ROBPI. I don't think I was scared off by all the information. As the other poster mentioned, I used the information to ask the doctors pointed questions. The injury and the surgeries, therapies, e-stim, etc. are extremely overwhelming but I think that knowledge is power. I knew nothing about this injury until it happened to my daughter. Listening to what other families have gone through and sharing information is invaluable. I can be on the look out for future problems. I think that everyone needs to keep in mind that each child is different and each option to help our child can have varying outcomes, which we often have no control over. It is difficult to realize that the injuries that our children suffered can result in life long problems, but I feel better knowing that I am keeping on top of my daughter's issues and getting her the best help that I can. The message boards allow me to take advantage of other peoples' experiences and research and gain support when I need it the most.

I like the boards they way they are now. While the board that most parents post on is called the General Board I am fine with that. As it is I find it hard enough to go to the other boards and read posts. When I do visit I often only read threads that seem to be info that I need. Sure I might miss something but in the long run I am getting what I need from the boards they way they are currently set up!
Blessings,
Kristie

This is something that the board of directors of UBPN has discussed at length several times. Adding or making any change to the message boards is something that we do not do without a great deal of thought and input.

At this point we are appreciative of suggestions for new forums on the message boards but feel our current number serves the community needs without overburdening our volunteer moderators, who must review every post on every board.

In addition, if we continue to add new boards for the various niche groups that exist in our community, we would have many boards, making it difficult for parents seeking specific information about the injury. We would like to assure you that the UBPN Board has thoroughly discussed this issue and feels the current number serves the community’s needs.

Nancy Birk
UBPN President