Evan's Diagnosis

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Locked
Angela Butterfly
Posts: 483
Joined: Fri Jul 18, 2003 4:24 pm

Re: Evan's Diagnosis

Post by Angela Butterfly »

Dear Stacy, We always expect to give birth to uninjured and absolutely healthy babies.....then LIFE throws a curve. I now realize, that before becoming a mom, you just about need a medical degree. Hope things go well, for your little guy. Hope it continues to be "not severe". Best to you and your entire family. Angela
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Evan's Diagnosis

Post by katep »

Dear Stacy,

I am so glad you are on the road to getting answers. The best advice I have is to get a referral to California Early Start (California's 0-3 early intervention program). My experience with them in So Cal has been wonderful. Especially great is the weekly support group/play group that we go to. The kids play together overseen by educated teachers and therapists while the parents get together by themselves to talk about the struggles and triumphs of raising a special needs kid.

I'm willing to bet you find a great support group like this for your child's specific condition. It's amazing how dealing with something like this can bring people together. It's great to have a place where everyone can relate to what you are saying.

Thank you so much for letting us know what is going on. Best of luck on your new journey.

Kate
Marnie
Posts: 442
Joined: Wed Apr 24, 2002 1:14 pm

Re: Evan's Diagnosis

Post by Marnie »

Stacy,

I wish you and your family all the best, keep us posted on Evan's condition!!
BIGJAVSMOM
Posts: 503
Joined: Tue Apr 12, 2005 4:11 pm

Re: Evan's Diagnosis

Post by BIGJAVSMOM »

Stacy- best of luck with everything, and I hope you get all the answers you need. I wish you and Evan and your family the best.


Sincerely, Marlyn
PeggyUBPN
Posts: 403
Joined: Sun Mar 07, 2004 2:14 pm

Re: Evan's Diagnosis

Post by PeggyUBPN »

Stacy,
I hope you find the support you need for your son; there are a lot of great support systems out there.
Please feel free to visit us and let us know how everything is going, as well.
Good luck and take care!

Peggy
TNT1999
Posts: 1064
Joined: Thu Nov 08, 2001 5:54 pm

Re: Evan's Diagnosis

Post by TNT1999 »

Stacy, thanks for the update. I'm glad that you got a diagnosis and have some steps to follow. I'm not surprised to hear that it's not a BPI b/c the more you posted the more it didn't sound like a BPI. I do hope that you find a more related support group / board. I'm sure you'll be busy, but I'd like to suggest / welcome you to still come here at least once in a while and feel free to ask any questions. Although the diagnosis is different, I'm sure you could find some info. here that is helpful regarding therapy, estim, splinting, diagnostic testing, special education needs, etc. Take care and I hope things go well for you and your family. Hope to see you around here sometime too. Also, feel free to e-mail me anytime.

~Tina, bpmom@comcast.net
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Evan's Diagnosis

Post by admin »

katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Evan's Diagnosis

Post by katep »

bumping for Molly
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: Evan's Diagnosis

Post by Carolyn J »

I want to share that when I had my 1st consultation for my LOBPI at age 67with a BPI Specialist, he informed me that I have a combination of LOBPI and Cerebral Palsy(lower extremities). He also said that these 2 birth injuries are common in some individals with many varieties of the combination and there are alot of comonalities with both. It sure explains alot of my differences.

Both the Hemipariese(sp?!!) and our UBPN websites are very useful and informitive. Treatments and therapies are often the same too.

Thanks Kate for Bumping this up. :)

HUGS,
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Mom2cmgrej

Evan's Diagnosis

Post by Mom2cmgrej »

My son was not diagnosed with BPI by the neurologist. He was diagnosed with a Left Hemiparesis, which is a mild form of Cerebral Palsy. So our next steps are MRI, EEG, PT and OT. Once the test results are in the Dr. will be able to tell me more. Right now I am doing research trying to find as much information as possible.

This is a great board and I felt so cared for while I was posting here. I am going to look and hope I find another board that is just as awesome regarding this new condition. I wish all of your children the best recovery and health, and all you Mom's and families the strength to continue down this road and to work hard for your child.

Love,
Stacy


Last bumped by Anonymous on Sat Apr 19, 2014 9:42 pm.
Locked