United Brachial Plexus Network, Inc.

Claudia and Kath,

I believe that Hair Brushing and Hair Cutting for that matter= sensory issues !!!

Gayle

I went to Arbonne to look at the ingredients and I found something curious.... it contains shea butter but in the description it says that it doesn't have nut oils... well shea butter comes from a nut! Maia is allergic to tree nuts so this definitely wouldn't work for her.

This is exactly the problem I had when looking for sunscreen for Maia... so many products said they were hypoallergenic but then they had nuts and coconuts in it... so how is that hypoallergenic?? I don't get it.

One has to be really careful with an allergic & sensitive child.

Gayle
I thought all the crying when I had my hair brushed was because my hair was soooo curly when I was young...LOL...
Both of my daughters had very curly hair and did not carry on the way I did... But they hated their hair brushed. I did far more complaining then they did....

Kath robpi/adult

...My "2 Cents"...
I always got sunburned on my left BPI arm,side of my face, neck very seriously, and quickly, too. Yes, this is all Sensory Intregration Issue related.

Other adults..Is tickling painful for you as it is form me? ..Just wondering.

Hugs all around,
Carolyn J
Adult LOBPI/68

we were told this, and all of those other "odd" issues were all related to the damage to the autonomic nervious system they suffered when the brachial plexus was being injured. Now, perhaps I was told this just to satisfy my questions, who knows. But there was along time without ozygen adn it makes sense to me.

Well, I got my first sun burn of the season, ouch! The funny thing is that the burn on my bpi arm did not show up for hours! It was still very pale and white when i left the softball feilds but now is a very brilliant shade of lobster red.

I have yet to find a sunscreen that actually works on me. I always burn right through it so I stopped wearing it as I hate the feeling. Cant stand lotions on me, they are so nasty. And since the sunscreen was not working anyway I stopped wearing it. Probably not smart but its what I did and now I am dealing with my burns. It was not a smart choice to wear a tank top and shorts to the games I was keeping score for. Only three hours in the sun and I am toasted!

Amy 20 years old ROBPI from MN

Amy,
If if makes you feel any better, sunscreens don't work for me either and I do not have a BPI !!! If I wear Sunscreen I burn twice as fast and a lot worse, so, I choose not to wear any either, I usually pay for it too, however, I was smart and the weather her was great yesterday and I went out with a long sleeve shirt on !! That was the smartest thing I have done for awhile !! GAYLE

lol Gayle, I wasnt that smart! I had a light jacket on but that didnt last long it got too hot!
Amy

Amy there are a couple of alternatives for you now...
there is a non greasy spray...and also Neutrogena makes a dry to touch sunscreen (meaning that it completely dries and you don't feel it after it's on)... I haven't used them myself but I saw it at the Rite Aid yesterday.

Does anyone know where to get the sun protection shirts?
I saw a lady with one on and also on her child last year and thought that it looked goofy, BUT we are buying season passes to the water park this year and with the way Carson burns on his left side, he is just going to look GOOFY!

If anyone has the shirts I don't mean to insult you, it's just that I don't burn, my husband nor my other 4 boys burn so this is very new territory for me.

What about loud noises? Carson is terrified of them.

Thanks for any info!
Jamie