Chicago BPI Group needs YOU!

[Lauren (Brooke's mom)]

Jennifer,

I think an explination of the injury is important. Making sure the parents know this may not heal in a few weeks!! Also a list of things they should be doing--ROM, seeing a specialist, PT & OT, etc.

I think a listing of specialists and PTs & OTs in their area with experience in BPI would be extremely helpful.

I would also include support group contact info.

I'll let you know if I think of anything else.

Lauren

[admin]

I wish I knew from the very first day how to do proper ROM exercises. We were told to only bring the arm back and forth across the belly.
I wish I knew to call for early intervention or ANY therapy services as soon as possible.
I wish I knew that this may not get better in 3-6 weeks b/c my hopes were up for something that didn't happen.
I wish I was able to link with other parents faster to talk about experiences as well as ideas for treatments.
I wish I knew why this happened and what it was caused from.
I wish I found Dr Waters faster.
~Krista~

[admin]

I think EI information is extremely important.

[CW1992]

I agree with everyone elses replies.

I wish I had known that it was not my fault.

I would have liked to know more about this injury so that I had a clue when I left the hospital with her - I didn't understand what had happened. When family and friends would ask about her arm I didn't know exactly what had happened and so from the start I felt like a "bad Mom" for not knowing. It was embarrassing.....

I wish I was given WRITTEN info so that I could learn more. (I was weak from delivering her and couldn't walk - and I think that what the doctor did tell me I did not really comprehend at the time)

I did not know how to do the Rom's and was told to keep her arm pinned for two weeks - I wish I knew more about the proper way of doing them sooner.

I wish I had other people at that time that would understand - no one did.

Oh and I wish I had someone that could have lifted me up and down the stairs because I couldn't walk for 5 weeks!! LOL That would have been handy! New baby and I couldn't walk...... Ok true - but not what you are looking for - sorry,
Christy

[Brandon_3]

A pamphlet is such a great idea, anything that someone can physically hold and read is good. A phone number whre they csn get their initial questions answered would help immesurably. Most doctors have no idea the effects of this injury. Yhey may have read about it in school and tell you that this is what your baby has, but they are in no position to tell you what to do about it. A pamphlet is a great idea, don't let go, think of how many t could help in the future.
Brandon

[AmyBrowne]

I feel it is very important to explain about this injury in easy to understand terms. I was so overwhelmed by the information that the nurses and doctors told to me; it just went in one ear and out the other! I didn't even have a pen/paper to write down the name. There needs to be resources listed by state. Perhaps information that can be given to your insurance company to explain what this injury is about. And, something that squashes the idea to "just wait and see and it will resolve itself". I must of had at least 3 doctors tell me, while still in the hospital, that she would be fine. Well, she is 4 months old and we are cosidering which surgeon to use.
Hope that helps,

Amy Mother to 4 month old girl LOBPI

[tcon]

I remember so clearly being so overwhelmed and not understanding even the name of the injury. When I finally got a pen i wrote down..."herb's palsy" and break-something injury. So to answer your question, something in writing that even just tells you the exact name and EI information.

[admin]

I think in addition to what's been said, a clear graphic that shows its incidence, and the timeline for recovery, especially so those critical first months don't slip away waiting and seeing...It says, okay yup it could get better, and statistically it will, BUT if it doesn't, there are things you've got to get going on. It also would give parents an earlier indication of whether or not they'll fall into the life-long injury group.

I know I had no clue what to look for in terms of recovery and although my daughter had very limited movement, I kept half expecting for everything to just spontaneously get better. I actually remember thinking "okay, this is supposed to get better in a few months, so by the time my 7 month maternity leave is done, it should all be resolved and I would have had at least one month after the injury healed before I had to go back"... I can even remember still waiting and seeing at 4.5 months and saying to my employer, "it should be better soon.." even though she still had very little movement. Had I known what I know now, I would have seen that the likelihood of a full spontaneous recovery was slim.

Also, an indication of the therapy schedules that we all have...I was floored when I came to the realization that we would be spending YEARS in formal therapy, and while we might take a break from formal therapy for awhile, it will ALWAYS be something that has to be done at home, for my child's lifetime. This is a lifelong injury that will need to be constantly managed and therapy, whether formal or informal, will always be a part of my child's daily routine. Now I understand that not all injuries are as severe as my child's and some are worse, but some kind of graphic or text that indicates that the ones that don't spontaneously recover can expect years of formal therapy, possible surgical intervention, continued daily exercises at home.

You could list the number of BPI clinics in the country, to give them a sense of "wow, there are options and there are people all over who do understand and have experience with this specific injury..."

Maybe have a checklist of things to accomplish and when (this is totally incomplete and haphazard, but just to give an idea)...
first week
-have PT demonstrate ROM, with indication of how often to do daily...(make appt. with PT, video tape range of motion exercises for reference)
-research BPI specialist, schedule appt.
-schedule appt with neurologist
-discuss management plan with pediatrician


first month
-get information on Early Intervention services
-get copies of medical records and review injuries
-review and schedule therapies (PT, OT)


Okay, one last thing that took me awhile to really get...the big problems with bpi, other than the functional issues...are that the nerves innervate the muscles, which hold the joints in place. When the nerves are comprised, its repercussions extend all the way to joint development. In addition, when an extremity such as an upper arm/shoulder is not developing the way our bodies were intended to develop, the whole body is comprised, and the issue becomes not just an arm issue, but a total body issue.

Unlike a broken bone, which can heal and the injury is considered "all better", nerves that are damaged beyond repair don't ever really heal..the body just compensates. That compensation can lead to many unintended secondary issues. That is why it is so critical to understand the extent of this injury early, and to get a team in place of neurologists, bpi specialists, pediatrician, ot, and pt to manage this injury early!

Oh geez, how about some other things that commonly see in our kids but haven't been researched and linked to this injury...speech, orthodontia issues, sensory integration, etc. Okay, maybe not, direct them to this website and they'll eventually hear about that more anecdotal stuff.

Okay my suggestions might be too overwhelming for a brochure for new parents...seems I'm now venting on all the things I wish I had known earlier!!!!!