United Brachial Plexus Network, Inc.

Francine,
Sorry to hear about Maia. Just FYI for those of you that don't know this.... BPI arms do burn much quicker than an unaffected arm. Brittany received a third degree burn on her BPI hand and had to have a skin graft and therapy. The therapist said from the nerve damage, the nerves and the brain don't talk correctly to one another. I don't understand it all myself, but it is so true. Brittany can not be in the sun for 5 minutes without sunscreen on her BPI side. It also has to do with the circulation being not so good. Brittany has had 3 major burns this past 9 months on her BPI side. One from cooking and set a pan on her arm and she did not even know it for several seconds. Just very slow reactions because she does not have normal feeling. I hope Maia recovers quickly and fully.

Kimberly

Hi Kim!!

Nice to see you here again!

Hope all is well with you guys.


rich

Hi Kimberly - wow sorry that all happened to Brittany. Maia had no idea she was burned until 4 1/2 hours later and we didn't know the extent until 3 days later when she finally stopped burning (it kept on spreading for 3 days). Tomorrow will be her 8th day and honestly - she's still dealing with the heat/sun stroke. Today she spent some time at camp and she did well and she did spend time hydrating herself a LOT and wore long sleeve SPF shirts and a hat - but it exhausted her - she is not over the heatstroke.

Also, her side was very badly burned and it didn't become purple until way later..and Maia had no clue she was burned there until I showed her in the mirror. That's scary - that further down her body didn't have feeling either. I knew she didn't have a LOT of feeling down her side - but didn't know the extent of it. This has certainly opened up my eyes.

Today the scabs fell of her face and there is no scarring (YAY!). Righty (non bpi) has some bad spots and there is major discoloration. Lefty - well an area of about 10" x 6-8" is very badly scarred - it has the melted and leather look. We're still applying the burn cream multiple times a day.

Kimberly - what did they do for scarring afterwards?

-francine

Hope Maia is feeling better soon!
Hugs,
Amy 21 years old ROBPI from MN

We have just been using Mederma cream for her scars. They are healing nicely. She may eventually have to have the scar removed from her finger from the skin graft. Just a little bumpy, but that will be up to her. That would be a cosmetic thing.

I am sooooo sorry that Maia got burned so bad. Bless her heart. That is just so scary.

This Saturday Brittany has two swimming parties and that just worries me because she will be in the sun and water all day. Lots of reapplying the sunscreen.

Francine, please send me your mailing address so Brittany can send Maia a card. email to dstallcup1@satx.rr.com

Kimberly

Wow Francine, I feel terrible for Her! I hope it all heals and she gets back to feeling normal quickly! That's just awful!

Michelle

I hope Maia is feeling better now.
I have a problem detecting heat of any kind on my robpi arm and that can be a big problem for us.

Kim I hope Brittany is feeling better soon and all healed. Nice to hear from you again. Hope all your children are doing well.

It is so important to put sunscreen on and especially on the obpi side. I just recently had what I thought was a gnat bite on the inside of bpi arm. I did not feel it at first but my arm was achy and it felt sore. I was rubbing my arm and felt something and when I looked I was shocked. It looked like a bite and I had it for about two weeks before going to the doctor. It's was skin cancer and because it was on the inside of my bpi arm I did not notice it nor did I feel it. My entire arm felt sore and I could not understand why. It's been removed and it's from sun exposure. The doctor said it is probably from childhood exposure. I've been so careful with the sun all my life. I'm a redhead so my skin and the sun is not a good combination.
This type of skin cancer comes on suddenly and it looks like a bad bite or a pimple. I still can't believe it's on my bpi arm...
Protect those little arms and YOUR own skin.

Kath robpi/adult

wow kath... did you take a picture of what it looked like? I'd love to see it to understand what to look for.

kimberly - maia's email is bratzfan@litzfamily.com
she'd love a card from brittany!

maia's almost completely done now... we just have to help lefty's scar along... but honestly... I'm just really happy her face is ok

Kimberly - they have some amazing "technical" shirts that protect from the sun. Maia now wears a Body Glove for swimming and an "Under Armor" long sleeve shirt for being in the sun. I got it at the Sports Authority - and honestly they were expensive -BUT worth every penny if that's going to protect her. They fold down to just about nothing, so it's something that Brittany can keep a purse for just in case she gets caught.

It's going in my "must have at all times" bag!!

THANKS TO EVERYONE FOR ALL YOUR THOUGHTS AND PRAYERS AND LOVINGS.... I can now put this chapter to close. Thank God!

Fran
It just popped up and looked like a zit or a pimple.
I had everyone thinking it was a bug bite and others telling me to put drawing salve on it. It looked funny to me and after two weeks I went to dermatologist.
He looked at it and immediately said it's a Keratoacanthoma (KA) is a rapidly growing skin cancer usually appearing as a volcano-like bump on the sun-exposed skin of middle-aged and elderly individuals. Many scientists consider keratoacanthoma to be a less serious form of squamous cell carcinoma. Most keratoacanthoma cause only minimal skin destruction, but a few behave more aggressively and can spread to lymph nodes.

While I am middle aged now

He said this was from sun exposure when I was a child.
They had no sunscreens then and I played in the garage because I could burn so easy. I have always been careful about the sun because I am so fair and redhead.
It is on the inside of my bpi arm and I was not going to the doctor because I did not want anyone digging into my arm. But my good judgement took over and I was shocked.
It's the first time I've every had anything removed that was cancerous and on my bpi arm... UGH! He told me not to worry the worst case they will have to make a bigger hole to make sure they got it all. It was on the size of the head of an eraser and really looked like nothing until it got hard on top. I caught it within the first two weeks of growth. So it did not get as nasty as some I saw on line....yuck. But had I ignored it and assumed it would go away it could have been worse.

The only thing that really bothered me was the fact that my entire arm hurt from it. When it was removed my entire arm feel like an open wound. The next day all of the really horrible burning and pain in my arm was gone.
According to all I read on this type of lesion it's not supposed to hurt... That bpi arm will get us every time.

So.... remember no sun for those of us who do not feel heat on bpi side....

Kath robpi w/boo boo

Francine glad Maia is better.
Oh my God Kath are you ok??? Frankie got a bad sun burn about 4 yrs ago on his bpi side and I noticed on his shoulder the other day a bump a little lighter then his skin color he said it was a scar from when he had the sun burn blisters. you don't think it could be skin cancer do you??? now he won't go out in the sun calls himself a vampire and he won't even go in our pool till the sun is off of it. Mare