United Brachial Plexus Network, Inc.

It seems like when I start asking questions of all the professionals, I get a underlying tone along with a hint of defensiveness from them.
Today I decided that I would NOT allow anyone to blow me off or downplay my son's injury and boy did things get heated. First I called EI and spoke with the case manager that came to our home initially and told us that Makai probably wouldn't qualify. Once again I was told that he probably wouldn't, but THIS time I had a slew of questions for her. She seemed put off and annoyed. Guess what??? I didn't care and at times the conversation seemed very tense. Guess what?? I don't care. I want my son to get help! I'm tired of sitting idle and being told, "wait and see". Needless to say, I gave her some work to do and she is busy looking for some answers to my questions that I would like to know by Friday. Someone here told me that BPI is a spinal cord injury and that it should be an automatic qualification. Who knows if it's true or not....the case manager didn't know and now she can do her job and look it up. She wanted to know what a BPI was. Hmmmnn.. very interesting... doesn't even know what a BPI is but she's telling me that we don't qualify for EI.
Next it was Makai's pediatrician.... I think she hates me now. Guess what?? I don't care... I gave her some work to do also. Too bad. I have qestions and I want answers.
Then it was time to deal with Makai's PT. I needed to know why she shows up to our appointments sometimes 20 minutes late and if Makai is crying she makes me hold him for the whole visit while she talks about her birtday, her husband, their friends and so on. I think she probably hates me too. Guess what?? I don't care.

Thanks to everyone that gave me information about BPI and dealing with professionals to get the help Makai deserves. You have empowered me and I hope that I can do the same for someone...anyone that should need my help in the future.

thank you...thank you... thank you...

Michelle

Hi, Michelle,

I'm sorry to hear you're getting that kind of response from these mopes. I wish I could say it surprised me, but I've been there, too. Unfortunately, there are many in the medical field who have a lot of pride and don't want to ever admit they don't know something. You have every right to ask questions and expect decent answers, even if the answer is: "I don't know."

It sounds like you're really getting some confidence to be proactive on Makai's behalf, and that is great! That really is half the battle. Good for you!

I also wanted to ask you: Have you been able to get to a BPI specialist yet? I couldn't remember if you ever talked about that or not.

At any rate, keep up the good fight and know we're here for you!

Janet

Makai, have you mentioned Erb's palsy to the EI? When I called our service they did'nt know what bpi was either but when I mentioned Erb's palsy she found it on the list as a qualifying disablity. Hope this helps.

I've spent the last 15 minutes trying to reach Dr. Water's office in Boston. I keep getting a prompt that eveually disconnects me from the line. I will e-mail him tonight when I have time. Maki is up and needs some MOMMY LOVE..

Michelle

I meant Michelle, not Makai, sorry!!!

Okay, let's be frank, sometimes us mom's need to be hated in order to get done for our children what they need to get. I spent the first 2 years of my son's life fighting for him and boy am I glad I did. People learned that I didn't take "NO" for an answer.....and would fight till I was BLUE......it's my child they are dealing with not theirs....

Michelle
Good going if you don't stand up for your child who will?

I think if you use the term Erb's Palsy you will not have a problem.
Hopefully in the future they will all recognize bpi.

You just keep at them.
Compensation can take a toll on our body.
If he has to function mostly one handed he should be taught to use his body properly to prevent secondary injury.
This is just my opinion because after years of compensation most adults report overuse and secondary injury due to imbalance.

Keep strong
Kath adult/obpi

When I say Makai has erbs palsy, EI tells me it has to be very severe, like no movement at all. I was told to try to get him qualified under BPI. Makai has some movement when on his side or on his back. I really would like to qualify. What should I do?

Michelle

YOU GO MOM!!!!! Good for you!!!
I can't tell you how many doctors, therapists, and case workers I made mad. I even fired my case worker. I just kept finding, firing, finding, and firing, people until I was happy with the care my daughter was receiving. ( I had a therapist cancel 3 weeks in a row because of bad menstration....hhhmmmm)

I found a case worker that actually worked with me, and we settled on calling the BPI a spinal cord injury, because the nerves affeced are attached to the spine. And spinal cord injuries are automatic (in my state).

Makai's pediatrician said she would not diagnose as Erbs Palsy or BPI. She said the BPI specialist or Pediatric Neurologist would have to do that. Is that true? What is this Letter of Medical Necessity I keep hearing about? Who writes the letter and why is it needed?

Michelle