I'm still pretty new to all of this. My beautiful precious daughter is 4.5 months old and is a very good happy baby. It seems every week we are at one Dr or another. They currently have her seeing an orthopedic, neurosurgeon, OT and PT. We have no clue how her nerves are, but she has muscle movement in all muscles, but only trace in bicep and the back shoulder (forget the name). Because of the muscle imbalance in her shoulder, the shoulder keeps dislocating. We are currently waiting to see if the neurosurgeon wants to do surgery and if so, they'll correct her shoulder, if not they are talking about splinting that arm and/or botox in the front muscle. We are in San Diego and being seen at the Brachial Plexus clinic at Rady Children's. I'm still iffy on the Dr's but her OT is WONDERFUL. Just wondering if there are others in the area to get together or at least have someone to talk to about it. It's frustrating that I have no one to relate too. My husband is currently in Afghanistan and can't be here for any of this. Some days I think I am still in denial/shock and think that it's magically going to get better. Then I read and research and I get depressed. I don't/can't believe this happened to my beautiful daughter. She was only 6 lbs 8 oz when she was born and I'm 5'11 and she still had shoulder dystocia.
The one good thing is that her neurosurgeon said that whatever muscles she has now, she will get back 100% in the future. I am praying the last 2 muscles show improvement and she won't need surgery. I know it'll be a long road with many more appts. So, like I said, I'm just looking for others in the area, or even someone I can email, chat with about their child too.
Thanks - Mindy
Looking for Other OBPI's in San Diego area?
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m.johnson
- Posts: 1
- Joined: Mon Sep 20, 2010 4:30 pm
- Injury Description, Date, extent, surgical intervention etc: daughter with an OBPI. Dr's calling it a brachial plexus palsy. Currently being seen at Rady Children's Hospital in San Diego, CA. They have a brachial plexus clinic, seeing a neurosurgeon, but to date no surgeries. It's her right arm and she has gotten a bit of movement back. When laying down can bring arm to her mouth to suck on, but can't quit do it while sitting up. Has developed a "click" in her shoulder from it being displaced (muscles in front stronger than those in the back). She was 6 lbs 8 oz when born and other than low amniotic fluid and blood pressure starting to rise, no complications during pregnancy.
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mamaofsix
- Posts: 214
- Joined: Sun May 11, 2008 5:20 pm
- Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.
Re: Looking for Other OBPI's in San Diego area?
Hi Mindy,
I am sorry to hear about your daughter, but I am glad that you found us. You can try this link http://www.conniecannonart.com/scbpn_home.htm This is a support group in California. I am not sure how current the site is, but there are several contact emails on the page, so hopefully, you will find some local support.
It is wonderful that you are reaching out to get as much information as possible about your daughter's injury. If you don't feel comfortable with the specialists you are seeing, I urge you to seek other brachial plexus specialists to get other opinions. There are several wonderful specialists that UBPN has listed on their resource directory. You can find them on the "Resources" tab at the top of this page.
Thanks,
Anise Braggs
UBPN Camp 2010 Coordinator
I am sorry to hear about your daughter, but I am glad that you found us. You can try this link http://www.conniecannonart.com/scbpn_home.htm This is a support group in California. I am not sure how current the site is, but there are several contact emails on the page, so hopefully, you will find some local support.
It is wonderful that you are reaching out to get as much information as possible about your daughter's injury. If you don't feel comfortable with the specialists you are seeing, I urge you to seek other brachial plexus specialists to get other opinions. There are several wonderful specialists that UBPN has listed on their resource directory. You can find them on the "Resources" tab at the top of this page.
Thanks,
Anise Braggs
UBPN Camp 2010 Coordinator