Help - 3 Month Old with BPI

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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Landon104
Posts: 5
Joined: Wed Jan 09, 2013 6:50 pm
Injury Description, Date, extent, surgical intervention etc: Son has a Brachial Plexus injury to Right Arm. Born 10-4-12 at 9lbs 12oz.

Help - 3 Month Old with BPI

Post by Landon104 »

Hi everyone!! I am new here and found this site after some research. My son was born on Oct 4th, 2012. He was 9lbs 12oz. I am only 5'4" and only weighed 135 when I got pregnant. I never measured big and only gained 30 lbs with him. During my delivery he got stuck on my bone and the Dr. performed vaccum extraction (if I would've known more about this I would've declined to us it and opted for a C-section).

My son was delivered and I didn't know he had any injury until the next day when the ped dr explained that he had BPI and that he would likely heal on his own and if not to seek a specialist.

We seeked out Gillette's Specialty Care in MN (home state) where they do clinics for BPI every 2 weeks. They had me wait until my son was 8 weeks old before we went. At his first apt they felt he was doing good, he could do the snowman. They made a splint for his wrist (is held down and in) and told me to have it on him at night.

On Jan 8th this year I went for his 2nd apt. They felt this time that he should be bending his elbow against gravity which he is not, he can only bend it without gravity (lying down). They said that if in 4 weeks he has not gained that function that we would have to do an EMG.

I feel that his progress is good and that he has recovered well, though slow. What milestones have other people experienced? I can't seem to get any prognosis, good or bad, out of the specialists. They seem vague and won't really give much feedback unless they talk amongst themselves.

Does he seem on track?
Proud mommy doing whatever it takes to heal my BPI son!
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Help - 3 Month Old with BPI

Post by jmar »

is the clinic where you are going have BPI SPECIALISTS? if not, you might want to go the mayo clinic. or contact the shriners....and also, there is a listing of specialists under the resources tab above...but you need to get him seen by a specialist because a regular neurologist or neurosurgeon is usually not trained adequately in BPI issues. i would not like it if they discuss things behind my back.

and i would not wait very long to get an appointment with a specialist. always remember, the best thing you can do for him is to take care of yourself. I hope the best for you and your baby
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Landon104
Posts: 5
Joined: Wed Jan 09, 2013 6:50 pm
Injury Description, Date, extent, surgical intervention etc: Son has a Brachial Plexus injury to Right Arm. Born 10-4-12 at 9lbs 12oz.

Re: Help - 3 Month Old with BPI

Post by Landon104 »

Yes he has been to a specialist since Nov. He is being seen by a neurosurgeon, ortheopedic surgeon, rehab dr, and ped dr, along with an OT at Gilette's specialty BPI clinic.
Proud mommy doing whatever it takes to heal my BPI son!
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Help - 3 Month Old with BPI

Post by Carolyn J »

Every injury is different and all milestones are too. I 2nd "Jmar" to have your child evalauated by a BPI Specialist.

Please keep us updated.
Carolyn J
LOBPI/74
prestonsmama

Re: Help - 3 Month Old with BPI

Post by prestonsmama »

We have been taking our son to Mayo for over a year. I highly recommend the BPI clinic there! Every injury is different but you should still try to get in right away. Be pushy if you have to and let them know that you can't wait. We too live in MN. Feel free to message me if you have questions or need to vent. Best of luck!!

Carly
katiexdobratz
Posts: 26
Joined: Wed Aug 08, 2012 7:49 pm
Injury Description, Date, extent, surgical intervention etc: Baby with Brachial Plexus Injury

Re: Help - 3 Month Old with BPI

Post by katiexdobratz »

Hi!

Firstly it sounds like your son is doing amazing!!! My daughter could not move her arm at all until about a month old. At three months she started bending her elbow, and her bpi specialist said that is what they look for---elbow flexion by 3 months. She has just recently started lifting her arm above her head lying down. She is almost seven months old. The nerves take a long time to heal. The waiting is the worst part...believe me. I cried when she moved her arm the first time. We do all of her stretches daily. They are very very important to do, otherwise his joints WILL stiffen! Feel free to contact me if you have any questions :)

Katie
Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: Help - 3 Month Old with BPI

Post by Master DIVER TOM »

This is like a Twilight Zone , thing :shock:
Stretching and a deep massage all the way to the hand and fingers, Not shoulder :shock:
My mom did this to, Good, for pain to, Still do at 62 ;) With birth erbs, Doctor, No hope or help :shock:
Tom
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Landon104
Posts: 5
Joined: Wed Jan 09, 2013 6:50 pm
Injury Description, Date, extent, surgical intervention etc: Son has a Brachial Plexus injury to Right Arm. Born 10-4-12 at 9lbs 12oz.

Re: Help - 3 Month Old with BPI

Post by Landon104 »

5 Month Update:

I am happy to report that with my fright...Landon has made signifigant spontaneous recovery. He does not have to have an EMG and has passed the marks where they feel the need for surgery at 6 months. So...we don't have to go back until his is 7 month and they will evaluate him movement for internal/external rotation and his wrist extention. Most other areas have perfect 7's on the active movement scale which is the highest.

I am so proud of his recovery, I couldn't ask for a better outcome after months of being scared since he recovery was not moving along as much. Now it seems like his arm is doing so well, that most people don't even know he was injured.

Thank you all for your feedback, I continue to read others stories and will continue to check in. This place is so amazing for information and support when it is so difficult to find elsewhere.
Proud mommy doing whatever it takes to heal my BPI son!
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