Having trouble coping

[nicolemarae]

Hello. I just found this site tonight. My daughter (first child) is 4-months old, and has a right OBPI. I am having a really tough time coping with this. I am at the verge of tears constantly, and feel almonst panic stricken about all of this. I have very little emotional suuport here. Friends just don't understand and are too caught up in their own lives. My family all live 5-8 hours away, and really - only my mom is a steady phone support. I even tried my pastor - honestly - he was at a loss for words, so I didn't even feel a great help there. I feel helpless and like my nerves are raw. Any suggestions of what to do?

Currently, my daughter's doctor has recommended Botox injection to help her gain equal usage of the muscle groups in her arm (slight turn-in from tight muscles), but our insurance has denied it. Have filed an appeal, but need medical references as to the effectiveness of the use of Botox with infants with OBPI. Anyone have any suggestions?

Also considering a second opinion. Any suggestions of great doctors? I live in southern MD an hour and a half south of Washington DC. We are currently seeing a speciaist at Children's Hospital in DC.

Thanks for any suggestions.

[BIGJAVSMA]

I am sorry that you needed to find this site, but glad you did. My son, Jojo is 4 and suffers from ROBPI. His is severe. No function or use. He had primary surgery at 10 months down at Miami Children's Hospital. We see Dr Kozin at Philadelphia Shriner's.

If you are able to make that trip- should be 2-3 hours for you, you should. I am from NJ, but live in VA. My parents are in NJ about 20 minutes from SHriner's so I am fortunately able to combine visits with appointments. Jojo has never had BOTOX, but Dr Kozin does provide this service. And Shriners is a free hospital. Welcome, once again to the boards and remember that in time it will get better. We ALL understand here. So vent, cry, kick, and scream. But remember to take time to enjoy your baby and laugh. They are only this age once.


Marlyn mom to Javier(Jojo) 4 y/o ROBPI and Manny 8 y/o


Message was edited by: BIGJAVSMA

[richinma2005]

Hello Nicole,

You are not alone with your feelings. I was there 11 years ago with the birth of my daughter in 1997.

It is very good news to know that she is moving her arm, even at the elbow, which is a huge diagnostic accomplishment.

I would recommend seeing a brachial plexus specialist. At Johns Hopkins in Maryland, is a very well known specialist.

http://ubpn.org/medicalresources/be ... ntact.html

He is a wonderful doctor, who has spoken at UBPN camps in the past. He is very responsive via email as well.

We see Dr. Waters in Boston. If you can seek a second opinion, I could personally recommend him.

You can check out the directory and answers to a questionnaire for all the specialists listed here:

http://ubpn.org/medicalresources/us-bpi.html

Maybe there is one near a family member you could arrange to visit?

If she is having alot of movement, it probably means she is not a candidate for primary surgery. A specialist can determine this, but I am hopeful that is the case. You probably should be looking to make sure your daughter is getting proper stretching/therapy. We started formal therapy at 6 weeks, but did a lot of passive range of motion at every diaper change. This website that shows stretches you can do for your daughter.

http://membrane.com/bpp/range.html

Maintaining passive range is very important.

Trust your gut instincts, and get those second opinions from a BPI specialist.

good luck

-rich

[richinma2005]

Oh,

also send your name and mailing address to
Outreach@ubpn.org to receive the Outreach magazine containing all sorts of great articles about those with BPI and those who are helping the injuries.

You can check out the electronic versions online as well:

http://ubpn.org/outreach.html

[mamaofsix]

Nicole,

I understand your frustration, sadness, and total feeling of being overwhelmed. I have been there and I think everyone on this board has at one point or another. My son is 5 months old and he underwent a 10 hour primary surgery just a few days shy of his 3 month birthday. It is hard to see past these moments, but I have learned to enjoy his smiles. Like someone else mentioned, they are only this age once. If I could take this injury away, I would, but you can't imagine the strength these little ones have. We have made a video of our journey and you can view it at http://www.youtube.com/watch?v=opoMJT3hzJE . If you need to just vent, talk, anything, this is a great place for support, or you can email me directly at cameronssmile@yahoo.com

[nicolemarae]

Thank you all for the support and information. I am feeling better today after spending hours and hours reading and figuring out what to do next. My husband and I have decided to try to get her in to see Dr. Kozin at Shriner's in Philadelphia. I have already put a call in, but have not heard back yet.

I have good days, but then I have the bad days where I feel totally overwhelmed. Yesterday was the day when I found out that the specialist we are seeing in DC has spoken to a doctor at my insurance company, and he still did not approve the Botox treatment. So, I have already filed my own appeal, and asked the doctor to supply me with articles from medical journals of the positive outcomes of the use of Botox. Well, I had to call and call to finally get an administrator to tell me she has spoken with my insurance company, and to find out that she is on vacation, so I have no way of getting the articles from her - and since my insurance comapny is making a decision by the end of the week, I have no way of doing a thorough literature review on my own. So, I had contacted Cincinnati Children's, and one of the therapists on staff there was kind enough to send me some articles today.

Then, I was just reallydelving into the research and informtion on the web about brachial plexus injuries yesterday. I mean, I had done minimal research before, but I was having such a hard time dealing with it that I couldn't bring myself to read too much at a time because I would just cry and cry. So, that's why I didn't find this website until yesterday. And I am sorry that I didn't find it sooner, but I can't go back in time. So, I am on the ball now. Well, that's the story.

Again, thank you all for the helpful information.

Nicole

[nkjacoby]

Hi Nicole. I along with other mom's from this site understand your pains and frustrations. We all share common heartaches. My son LOBPI is going to be 6 in October. We have had a long road with surgeries and therapy, but I have found this support group to be very helpful. Please email me because I know that having friends that know the pain helps to get you through. Looking forward to hearing from you. :0)

[Kath]

Nicole
I'm sorry to hear your beautiful baby was injured.
I'm glad you found UBPN. Almost ten years ago I found UBPN and was amazed to discover I was not the only one in the world with a rare birth injury.

You will get a great deal of support and help from the people on this site. Most of the medical help will come from other parents and tons of emotional support.

There are many here like me who are adult/birth injured who can assure you that you lovely little girl will have a normal life and grow up to be strong and creative. I know for sure most bpi babies and adults are very stubborn and strong willed. BPI babies are tough little cookies...

I am a wife, mother of three, grandmother of 5 and also robpi. As you read the message board more you will feel more confident in your ability to cope with this injury.

Kath/robpi/adult

[lc0049]

Hi Nicole. I'm very sorry to hear that your daughter has to live with a BPI. My son, too, suffers from a BPI of his right arm. I also live in southern MD...Chesapeake Beach. I see you live in Lexington Park. What hospital was your daughter born at? Who was your OBGYN? I hope these questions aren't too personal. I'm glad you have an appointment set up to see Dr. Kozin. We've been taking my son to see Dr. Belzberg at John's Hopkins in Baltimore. He's been PT and OT since he was 3 weeks old and has had two EMG-guided Botox injections. He's made significan't progress, but still has limitations. His next appointment is on Oct. 6th, for an evaluation of whether or not to move forth with surgery.

They're such strong little people that constantly amaze us.

My heart is with you and your family.

[jquackenbush]

My son is almost 12 and I promise that no time will be as hard as the first year. I too thought about his injury 24/7 when he was little and now I can say that sometimes months will go by without me checking the web site. Your daughter will become someone who is not defined by her injury but it will become just a consideration like an allergy or any other chronic condition. Her injury will make your whole family more compassionate and caring about people with differences.

When we were in Seattle last year for Camp UBPN my son said, "I wish I could thank that doctor." My husband and I look at him and said "What?" and Ben said, "If he hadn't hurt my arm we wouldn't be here today."
I have never been more amazed and proud of his ability to forgive and have a healthy perspective.

Please believe that those days are coming for you!!