Our Thoughts and Prayers

[admin]

I would just wish to thank this site and the thousands of people who write to it. Our daughter had Erb's palsey for the first six weeks of her life. Through the grace of Jesus Christ her arm has made a full recovery. I understand the pain and fear you parents are going thru, I would have given both my arms away for her to recover like she has. I thank God every night for her gift. My family's thoughts and prayers are with each and everyone of you who is dealing with this.

[Kathleen]

Thank you so much for the encouragement and prayers...

Louise... I understand... I always complained by how clothing touched my body... I drove my Mom crazy and if anything fit just right... drove me crazy... I hated clothing that would bind me... My Mom thought it was from wearing a brace for 11 months 24/7 except for rom and massage... maybe...

but for her fronzen arm... just a suggestion because I am a poor sleeper and have always been one I wake up with my arm and face sooo cold..... Polar fleece is soft does not annoy... try buying one of the pj's for adults with soft polar jackets ...soft inside and out... see if she will try wearing it in the winter... the cold frozen arm in the morning is the worst... that is what I finally came up with...

She will get over not wanting to wear the clothing but she probably will always wear her clothing too big.... LOL....

Lands End catalog had some pj's I wanted to buy on for my granddaughter who hates to be to warm but loves my polar fleece jacket... always stealing it when she is here overnight...LOL...
Kath

[Debbie]

Our thoughts and prayers are with you also. Just wanted to comment. My son's body is really sensitive too. I never knew this could be related to his injury.
He too takes his shirt off as soon as he comes home from school. He also likes to wear big shirts also. Never anything binding. Does your child's skin get red when it is rubbed? Has your doctor said it is related. Maybe I am going to the wrong doctor. He said he has a cold cholergenic allergy. (to the cold)
But I am just wondering if he is not familer with bpi.
We have got an appt. with Children's Hospital in Milw. in January, I hope we get some answers.
Thanks,
Any info would be great.
Debbie

[Kathleen]

Debbie

Allergy to the cold... I have to wonder about that...
I am obpi and I cannot stand any cold on my arm neck or face on the bpi side... Hot on the right obpi side I also do not fully feel... in PT they put a cold pack on my arm and I was ready to scream... and if they put something hot on I could not really feel it so they had to be careful not to burn me... It had been years since I went to PT and so I was not fully aware of it... But a child cannot tell you what bothers them because they don't know any better... they have always been that way...

I really think that the doctors don't know much about this because no long range studies have been done... the only one I read is so floored it says that the only problem obpi/adults have is the way we appear...NOT>>>

I did not realize that it was related to my obpi until I began to read the boards two years ago and related so much to what the children were going through...
I really don't think that doctors are familiar with the day to day living with bpi...

Ever wonder why a child looses things that are in their hand... or why they hold things in their hands and are not aware they are there... many of us adult/obpi have this problem yet no one explained why to us... until we started to compare notes with each other...

It is not neglect on the doctors part they just do not have the studies done to answer all of the questions...
it is hard to understand all of the little things that occur because of the damage done by bpi... and most doctors do not have other paitents to compare to... so they try to find an ordinary answer to what seems like a little problem and not important... but it is complex... I wonder how many obpi have the same problems yet don't know how to verbalize them.

I know that my husband says my skin in not as cold on the outside as I feel it internally... how can a child explain this ... the adult will say..."your arm is not that cold"... so they stop complaining and think these feeling are normal.. as for tight clothing that is so annoying... it is confining... and frustrating especially when I was a child... still hate anything tight...

I most definately think it is from the bpi... since all the adults complain of the cold arm... etc...

Hope this helps
Kath

[Debbie]

Kathleen
I am in awe at all that you know about bpi, and am very grateful for the advice. I am also grateful I have found this site. It is so nice to know someone has experienced, and understands what my son is going through. Thank you. And keep up the good advice, and knowledge.
A few questions?
My son's face is slanted on the affected side, is this common in bpi?
Also can bpi, affect eyesight?
He does forget things in his affected arm! Wow, it's amazing that these are the same things in other bpi injuries.
What other things do you notice.
When you were a baby, did you have trouble with your phrenic nerve when eating also? Andrew could never sleep on his stomach, or his affected side, and still can't.
Thanks again,
Debbie

[Kathleen]

Debbie

I had T1 injury so I had Horners... don't know if it effected my sight...
I had a crooked smile... and one eye a bit smaller... not very noticable... till I started to age and notice I was not aging on one side the same as the other..lol...now all photos from the affected side...

Eating was a horror for me ... I hated meal time... I was force fed because I never wanted to eat... don't know for sure if that had anything to do with Erb's but I had terrible pain in diaphram during my teens the doctor called it spastic diaphram... I think it was the bpi injury.. and found it hard to eat I always had an upset stomach... I always some breathing problems....asthma... my lungs were my weak spot the doctor told me as a child...

I was amazed when I found this board and found other obpi adults like me and we started to compare notes we were shocked how much we do alike...
So many of our social and school problems were alike... we also compensate in many of the same ways...
Also our stubbron, ways...lol... persistent is the word to describe a bpi child... we have to be if we are ever to move...
thanks for the kind words
hope it makes things easier for kids now that we have adult obpi who can relate to how the children are feeling...
Kath