Advice with weird stuff and Pain

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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anotherbpimom...
Posts: 49
Joined: Thu Mar 05, 2009 1:11 am

Advice with weird stuff and Pain

Post by anotherbpimom... »

When my daughter takes a bath, her affected arm (only) becomes very, very red except for a white line that is all the way around her arm, just below the deltoid... Can anyone explain this to me? I'm assuming it's related to her also getting sunburned only on her affected side.

Last night, she suddenly clutched her abdomen in excruciating pain. Only, it was because of severe pain in her arm which lasted quite a while. I almost took her to the hospital for it. She's a few years old. Any thoughts from experience with this? What can be done for this? She's also been waking up more and more saying "mommy, my arm hurts".
KPC's mom
Posts: 13
Joined: Sun Jul 11, 2010 2:32 am
Injury Description, Date, extent, surgical intervention etc: Birth injury on 11/11/07.

Re: Advice with weird stuff and Pain

Post by KPC's mom »

My son also experiences the sun burn problems. We just try to use higher SPF & keep him covered with a shirt. As far as the paid, my son hasn't experienced, but I'm sure if you consult with a BPI specialist like Kozin, Waters or Nath - they should be able to give you some help.
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Advice with weird stuff and Pain

Post by marieke »

The redness is because the arm's circulation is not the same as her unaffected side.

The abdomen pain from her arm is called referred pain and is typical of nerve damage. Just make sure that if she does have pain it really is from her arm.

Neuropathy is tough to deal with as everyone is different and no two people experience it the same way.

Contact her doctor also, he/she might have some good advice on how to deal with the pain she is having now.
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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: Advice with weird stuff and Pain

Post by Carolyn J »

These Weird "things" are very very common with us OBPI-ers, altho it's different kinds and instensity for each individual as all injuries are not alike. It's a Lifetime-Care Issue we adults refer to as a Secondary medical issues/injury.
Hugs Heal,
Carolyn J
LOBPI/72
Carolyn J
Adult LOBPI
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Advice with weird stuff and Pain

Post by Kath »

I've always had a weird sudden onset pain, even as a child. As a child I would loose my breath and run for someone to massage the muscle in my upper arm. It was not a cramp, it was not a pain as I knew pain but different... It was like electric shock but not really. I still can describe it, even at 70. One small child here at ubpn said he felt like someone was sticking sharp sticks in him.

I was lucky because my family doctor understood. He told my Mom the pain was real and when I was a teenager began to give me monthly shots of B-12 to help with my nervous system. I also took B-complex since I was tiny...ugh terrible tasting liquid... but the b-12 to this day seems to really keep this sudden sharp attacks away. My daughter is a nurse so she gives me the b-12 shots. For many years the doctors thought it was useless and did not understand obpi and just ignored it. I tried to talk them into b-12 shots... but they said no... Finally one doctor said...hey, it can't hurt you and I don't know much about your injury...but lets try... That was ten years ago and I hardly get them any more... so is it mind over matter as some think... I don't know for sure but when I skip a month here and there... they start in and that is when I remember I haven't gotten my b-12 shot.

Since your child is young they would not give b-12 shots but perhaps increase b-complex vitamins. One doctor told me that you cannot overdose on B, when taken as a B complex and it should always be taken that way. The doctors who took care of me for the first 26 years of my life is the one who put me on B.... He said that B works on your nervous system and is depleted under stress... sooo Pain equals stress.... stress depletes b.... so I often became b depleted...
Sounds crazy but it works for me... Speak to a doctor about it before trying anything... but it might be worth try... Only a doctor can tell you what is best.
Kath robpi/adult

Kathleen Mallozzi
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: Advice with weird stuff and Pain

Post by Carolyn J »

THANKS for reminding me, Kath about B 12 complex...i forgot...LOL
Hugs all around my UBPN Family,
"Gramma" Carolyn J
LOBPI/72 8-)
Carolyn J
Adult LOBPI
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