United Brachial Plexus Network, Inc.

Hi Mona:

We were told that alot of the kids have this. Katie's was extreme and she even has a exaggeratted shivver that has driven everyone nuts trying to figure out. At the Ohio picnic this summer Lisa D knew exactly what we were talking about and said it happens to these kids rarely but that TCH had seen it. Just like with the arm nerves as the nervous system heals the symptoms will lessen but probably won't go completely go away. I know Katie's is not near as severe as it was. And the skin on her arm was very shiny and had no hair whatsoever. Recently the glossiness has started diminishing and she is getting peach fuzz on her arm. That flaming red and blue whiteness has lessened as well, so I guess this shows Lisa was right!

She told us it causes no discomfot to the child and that it bothers us much more than them but it doesn't hurt to cover (or uncover) their arm if we feel the temperature is not right.

Sorry I couldn't explain it, just wanted to let you know you aren't alone. And it doesn't have to be fear or excitement that causes it--Katie's happens at any given moment, it just happens to be more pronounced when she is excited in some manner.

Glad you found out!!

Just my 2 cents... for no apparent reason my arm will get cold or hot... when I put my two hands together sometimes you can notice the color difference.

It took me years to find out that this was because of obpi... and it never bothered me however, I think now that is the reason I was not a good sleeper...

At night I have to cover my arm and side of the face... because of Horner's.
It was not until I discovered UBPN and all the shared informaton that I realized all of these things were connected to obpi... So you will notice more then the kids but its good to be aware so they can understand later on. Also keeping the arm warm at night makes for better sleepers...
Kath

Has anyone else ever heard of that happening to that extent? just curious-
Does it happen with BPI children to tahat extent -who have not had surgery? Ive never heard of it- and if it doesnt, what is it about the surgical nerve repair that causes it to happen? Im sure its nothing to get freaked out about if thats what they say, but I would definately be curious to hear about this-like therapists too? seems to me that what Lisa says would make sense but I would wonder why it would be in just the arm- the parasympathetic nervous system runs thru out your body so it seems like a reason specific to BPI like nerve endiongs would be what causes it to be specific with BPI
Has your son had surgery? just curious. Do other BPI surgeons/staff say the same things?

Hi Marymom:

katie's has happened since the day of her birth, it had nothing to do with surgery. It was explained to us that the more severe the delivery complications (not just BPI, anoxia, ect...Katie was in cardiorespiratory arrest for several minutes and did not make any respiratory efforts on her own for about 20 minutes, she was bagged). And it is not just "the arm" for her. It is the face, scalp, arm, trunk and the tremor involved her whole body, even her eyes. And it is not a seizure, we have had multiple EEG and even a 24 hour video EEG monitoring.

It is my understanding (and I am no where near saying I really understand it!) that there are multiple factors involved and not all BPI kids suffer it and not all sufferers have severe BPI (in fact, I think the neonate said it could happen to non BPI kids as well, rarely and that she had seen it in CP babies too)

At first we thought the face thing was due only to the Horner's.

kathleen--are the other OBPI adults poor sleepers as well, do you know? Katie is a lousy sleeper but I had never related it to her arm being cold. I mean she is just turning 20 months and barely makes it longer than 3 hours straight. If there are solutions out there I am all ears..we are totally exhausted. And she goes from one side of the bed to the end and back. In fact, she does everything but fly around the room backwards (and if you look at the playroom you would wonder about that!)

Hope we find out more..

Marymom
I think it is bpi related with or without surgery.
I never had surgery I don't really feel the hot but the cold is so uncomfortable it is only connected to the right arm, neck and face... Right arm can get terrible sunburn and I don't feel it...
My face does not get red, my neck use to but my arm face and neck get very cold... I cannot tolerate any cold pack on the right side... it causes pain!! I feel like I have a tooth ache in my arm... Also I had Horner's my face does not sweat on obpi side... Also the eye doctor told me this week I was lucky my lungs were not effected... I was always sick with bronchitis, pneumonia and as an adult asthma I wonder if that is connected to bpi too...

I really feel for you! Poor little Katie is probably cold on the one arm!! It has taken me years to realize if I don't cover the one arm I am in trouble...
When I was young (like you) I would always complain if the back of my arms got cold... I never really realized that it was "Erb's" connected...
I have to have a bed jacket... like polar fleece and sometimes I just have one arm on... LOL.. but when it gets real cold I need something near my right ear and side of my face... I don't think that my family knew what was going on... because I could not verbalize that I was cold... because my left arm felt hot... I drove my Mom crazy and my husband too because I slept with the covers over my head... they all thought I was nuts... I never realized it was because I was so cold when I sleep... the temperature is always colder on the bpi side... sometimes I have my husband check he can't always feel the difference but I do internally....

NO ICE PACKS on my right side... I am going back to pt again and that lesson the PT learned early on... I never said anything I was sitting and he saw the look on my face... he warned me never to do that again..pt is not suppose to inflict pain...
Maybe poor sleeping goes with the name... only my parents called me Kate when I was small... They also complained that I pulled the bed apart and tossed and turned and thrashed about... they use to say it looked like ten people were sleeping there... I wonder if it was the cold... As a mother I know that when babies are warm and cozy they sleep better... Blanket sleepers or I just saw polar fleece pjs in one of the catalogs... or layer her clothing... I still wake up several times a night if it is too cold or if my arm is uncovered even with long sleeves on it still gets so cold when I sleep... also the right side of my face,neck and ear get very cold... I assume that is because of the Horners.
I will check with the other adults about childhood sleeping habits...
Kath

yikes! Im so sorry I was thinking it was related to surgery- I have never seen a child with a BPI whose injury was to that extent that you described and being the know it all that i am I assumed it was surgically related-
If its any consolation,Max who will be 3 in January, has SUCKY sleeping habits too- dont think its related to his arm as your Katies may be but-
nursing seems to help but Im getting tired of keeping the "all night diner" open- but When he wakes, he just kind of rolls over and gets some-
do you sleep with Katie? Would that help at all?
ok- well thankyou for explaining