BPI Pain?

[Ky's_mom]

Hi!
I have a question, I have read several people who have written they have experenced pain, wrist and shoulder pain with their BPI. Is this something that everyone with BPI will some day face?
Is there anything you can do about it?
Thanks,
Tami

[admin]

Hi Tami
I am so pleased that My son Gavin is old enough to ask now ( he's 10 yrs robpi) I have always worried that he is suffering pain in his arm/shoulder/wrist.
He assures me that he doesn't feel any pain, although he does report more sensation in the area of his biceps since he had a muscle transfer surgery last year.
I hope that this situation continues, I can cope with the limits of his injury as long as I know he's not in pain!
I hope this helps to reassure you a little - of course for other children things may be different.
best wishes
Karen & Gavin

[njbirk]

I can only speak from my own experience. I did not have much pain with the injury as a child. In my early 40s I began to experience arthritis in both arms and especially in the non bpi arm and hand probably from the overuse. That non bpi arm has also had lots of bouts of tendonitits.

Nancy

[Kathleen]

I alway had some sort of pain. But I never knew it was pain. I did not know how to describe it.

We know when a person is injured and the brachial plexus is stretched and torn etc... they have a great deal of pain to deal with... they have to take lots of drugs and it does not even touch the pain and it lasts for a long time...So why would a baby not have the same pain?? I often wonder about this. I have been told often by sibling that no one slept in the house my first year. Could some of the pain be blamed on colic- cranky baby ???????

When I took Vioxx for a few days. I was shocked I realized that I had no pain at all... if felt strange.
I told my husband "so this is what other people feel like" too bad I could not continue to take it...


So I guess what I am saying is we probably have always had pain but since it was always part of us did not know the difference to compare it...

I also had bouts of pain like shocks in my biceps and back... diaphram. Cramps in my arm and neck and back.

The overused arm and hands are another story and that started in my twenties. I guess lugging around three kids did not help...LOL...

I think that better OT could prevent some of the secondary injuries.

Kath

[christy]

Like Kathleen, no one in our house gets much sleep but it has gotten better after the caps--it just hasn't resolved completely however. She complains in the morning and after a nap of her shoulder (she sleeps in sort of the SOL position)and wants her old brace back on. A few times a day she will hold her arm about mid shaft of the humerous and rub, tells us it hurts and can't stand sleeves or blankets on the forearm right now and she rubs the forearm and says it hurts--this is fairly new, but she doesn't cry out. We were going upstairs a few nights ago and I laid her "gankie" across her shoulder (this is just a tiny lightweight receiving blanket) and she started screaming "my arm my arm, it hurts mamaw help me, gankie hurts my arm." needless to say it came off in a hurry. Most of the time however it goes as quickly as it comes and is no where near what we went through before the caps surgery.

[Kathleen]

Jennyb from NZ
Posted this on the tbpi board I thought it would make interesting reading...

If bpi is trauma why do doctors and others think babies do not feel the pain??? I was told a few months ago that there was no pain with Erb's Palsy... I really wanted to roll on the floor laughing... but instead I spoke up... how can you have trauma to the brachial plexus without pain??? I think some text books need updating...
Kath

http://tbpiukgroup.homestead.com/centralpainbpi.html

[jennyb]

Just thought you should know, I wrote that article (although I did it using verified and peer reviewed sources which are listed at the bottom) and all of the cases I have mentioned are tbpi. Interestingly, one specialist (in a book so I can't link it here)who deals with tbpi and obpi long term, and keeps records of outcomes for both surgical and non surgical cases long term, says that he has never had an obpi child reporting the kind of pain found in tbpi and even more interestingly, he has also never encountered central pain of this kind in children who suffer a tbpi at an early age, so he concludes that the pain mechanism is different for children, it's not an obpi/tbpi thing.

However, he then goes on to say that central pain (this pain described in the article is not aches and joint pain, it's crippling and happens mostly in the lower arm and hand and almost always in peeps with an insensate hand) does start to happen in tbpi children who had previously had no pain when they reach puberty. So it seems as though some maturation of the nervous system needs to take place before the central pain can happen. He only observed this happening in tbpi children.
I personally think the babies must feel some degree of pain, but please don't worry when you read the horror stories on the tbpi board, I did a LOT of research for this article and did not find any reference to this crippling central pain in any other than serious tbpi cases. I wouldn't want anyone to worry unnecessarily.:0)

[Ky's_mom]

Thank you for sharing with me about the pain invovled with BPI. I had no clue and will be asking the doctor about this on Wednesday when we go to St. Louis Childrens Hosptial.
Thank you so much! I feel so blessed to have been able to find out so much about BPI in the past two years!
Tami

[Kathleen]

Jenny

That is interesting.

I know that other obpi have reported having pain as a child but not having the words or the voice to tell anyone... and also doctors said no pain therefore parents would tell the kids it does not hurt...
I wonder if the degree of injury has anything to do with pain... I believe years ago surgery was done on babies without anesthesia because physicians mistakenly believed that babies did not feel pain... I wonder how they could test for this? How can you tell if a baby is in pain if they have been in pain since the day they were born... I am so curious about this subject of babies and pain... I know for years this was taught in medical schools that there is no pain for babies but I think that has changed. I think that they have found that babies do feel pain.

I agree that puberty was a time of much more pain but always had hand cramps and arm spasams...
When I was small I always had cramps in amy arm and hand and my skin on that side was sensitive to touch.. there are spots on my back and arms that if touched I would jump they are painful and always were but I remember being told they were not because the doctors said so.
I still can't stand anything tight on that side I need everything loose.

This is worth investigating thanks for all the information.
Kath

[Kathleen]

The Brown University Child and Adolescent Behavior Letter ... pain in newborns.

http://www.findarticles.com/cf_dls/m053 ... =baby+pain

This pain paper was written for parents of Preemies while bpi babies are not preemies there seems to be no study on pain in bpi babies. I became more aware of this when my granddaughter was born 13 weeks premature last year and was in NICU for two months... that is when I began to realize how well informed we were as opposed to the lack of information for parents of bpi injured babies.

http://www2.medsch.wisc.edu/childrensho ... /pain.html

Baby's Pain May Cause Lasting Intolerance to Discomfort
http://webmd.lycos.com/content/article/1728.59820

"Summer 1998.
The birth of pain

Pain has been a puzzle for many years. Now researchers
are discovering that babies have quite different pain
mechanisms to adults. Maria Fitzgerald

This is the best paper I have read so far on baby pain.

http://www.cirp.org/library/pain/fitzgerald/

This is heavy reading but interesting
NEW ENGLAND JOURNAL OF MEDICINE. Vol. 317 No 21: Pages 1321-1329,
19 November 1987.
PAIN AND ITS EFFECTS IN THE HUMAN NEONATE AND FETUS
http://www.cirp.org/library/pain/anand/

Research suggests babies should receive anesthetic when circumcised.(Brief Article)
Issue: Jan 19, 1998

http://www.findarticles.com/cf_dls/m135 ... icle.jhtml