I'm writing this post to send a message out to everyone with kids who have bpi - just in case you don't know this.... about sun & the importance of sunscreen.
Maia has a left bpi and she had horner's as well (droopy eye). She went to the beach with the orchestra - they performed on the music pier. And afterwards they had 4 hours to run around and have fun. Maia and her dad went to the beach and frolicked in the water the ENTIRE time and they both just forgot to use sunscreen.
She is now terribly burned. She has sun stroke - was very ill - flu like symptoms - fever, chills, nausea, pain and more. And this morning the blistering began and as every hour passed, there were more and more blisters... some 1-2 inches in size and completely filled. Her affected arm is covered about 80% in blisters and her unaffected arm is covered about 20% in blisters. Her surgery scars are now about 5x larger than they were. Her face is very blistered as well - probably the horners has something to do with this.
Burn care as provided to us by her doctor is absolutely horrific and painful. I am taking her to a pediatric burn specialist tomorrow to see if our burn care needs to be different.
PLEASE DON'T LEAVE YOUR HOUSE WITHOUT THE SUNSCREEN! And set our watch to beep when you need to reapply the sunscreen.
I cannot believe how bad this burn is on her affected side. It is just horrific.
Maia has been in camp in the full sun for 6 weeks and she didn't even have a tan line- that's how good her sunscreen is. We use Alba Botanical KIDS sunscreen with titanium oxide. She can't use the "regular" stuff because she's allergic and not all of it works for her.
what a 24 hours this has been... unbelievable
Maia is severely burned from forgetting sunscreen at the wrong time.
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
Poor Maia!
Hope you get some better answers from your Pedi. The sun can be brutal on the young ones for sure!
You can bet that I keep Malik out of the sun as much as possible!
Hope she starts feeling better soon
Denae
Mom to Malik 14 month old LOBPI
Hope you get some better answers from your Pedi. The sun can be brutal on the young ones for sure!
You can bet that I keep Malik out of the sun as much as possible!
Hope she starts feeling better soon
Denae
Mom to Malik 14 month old LOBPI
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mommieinneed
- Posts: 181
- Joined: Thu Jun 14, 2007 6:19 pm
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
Wow how sorry I am that Maia got that burnt. I sure hope it heals quickly and that you get better care for it by the burn specialist.
Tell Maia that Maggie and I will be thinking and praying that she gets better real soon. Hugs and Kisses from Mags and Me.
Tell Maia that Maggie and I will be thinking and praying that she gets better real soon. Hugs and Kisses from Mags and Me.
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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: Maia is severely burned from forgetting sunscreen at the wrong time.
Thanks for sharing. I will keep her in my prayers and update us with her process.
I am definitely getting sunscreen for my little one today!!
I am definitely getting sunscreen for my little one today!!
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Jordansmom
- Posts: 37
- Joined: Mon Oct 03, 2005 1:54 pm
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
Oh wow, Francine! I'm so sorry to read this! Thanks for the reminder about sunscreen. We'll keep Maia in our thoughts and prayers for a speedy healing process.
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
http://www.drugstore.com/products/prod. ... atid=12101
This is the Alba Botanical KIDS sunscreen that we use.
http://www.drugstore.com/products/prod. ... atid=12101
And this is the pure zinc/titanium sunscreen.
this is what we are going to put on her surgical incisions from now on
This is the Alba Botanical KIDS sunscreen that we use.
http://www.drugstore.com/products/prod. ... atid=12101
And this is the pure zinc/titanium sunscreen.
this is what we are going to put on her surgical incisions from now on
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PRISCILLA
- Posts: 100
- Joined: Sun Feb 15, 2004 5:43 pm
- Injury Description, Date, extent, surgical intervention etc: Son, traumatic injured (TBPI) - November 2003. 3 surgeries to date.
- Location: North Carolina
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
Yikes ! How horrible ! She must be miserable ! Good luck on taking her to the burn specialist ! Let us know what they say. Hopefully it can get cleared up before school starts !
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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: Maia is severely burned from forgetting sunscreen at the wrong time.
Oh Fran, poor Maia! Please let her know that I am thinking about her.
Hope you get some relief from the pedi burn specialist!
Marieke 32, LOBPI
Hope you get some relief from the pedi burn specialist!
Marieke 32, LOBPI
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Re: Maia is severely burned from forgetting sunscreen at the wrong time.
Thinking of you and hoping Maia heals up quickly from the burn - Camille B.
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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: Maia is severely burned from forgetting sunscreen at the wrong time.
Most of us adults with OBPI's have posted and talked about our affected side always burns badly. I, for 1, have the biggest, floppiest sunhat I could find to walk my dog even on semi-cloudy days and I always wear long sleeves.
FYI, everyone is welcome on the "Adults with.." Message Board.There is alot of helpful information there.
Hugs all around,
Carolyn J
LOBPI adult
FYI, everyone is welcome on the "Adults with.." Message Board.There is alot of helpful information there.
Hugs all around,
Carolyn J
LOBPI adult
Carolyn J
Adult LOBPI
Adult LOBPI