United Brachial Plexus Network, Inc.

Hello,

My 9-1/2 month old son Jason is still not sleeping through the night. Ugh! It's so frustrating. I'm finally breaking down and trying the Ferber method (letting him cry for periods of time before going in to check on him).
Anyway, does anyone know if kids with BPI suffer any real pain from their injury? Could that be what is keeping him up at night? He normally goes down around 8ish and is always up around 2am. He usually cries for an hour, sometimes more..
I work full-time so I'm extremely sleep deprived and would be open to any and all suggestions!

Thanks!
Dani

Dani

I have always had a sleeping problem. My family (older siblings) always complained and told me no one slept in our house the first year I was born.

I find I wake up because my arm and face are very cold and if I keep the obpi side warm I sleep better. I somtimes just can't find a comfortable position.
I could have sleep problems just because I am supposed to or it could be from OBPI I will never know. But most times I wake up because I am freezing just on my right arm and side of my face...well my leg too. But my arm, face and ear bother me the most.
If your house is cool try a blanket sleeper maybe that will help.
KathM

Dani,

Like Kath mentioned, I think it can be difficult to decipher precisely what is causing the sleep difficulties. Telling you my story won't be terribly encouraging (sorry). My little one is 3 years old and still has difficulties with sleep. We tend to think it is because he is a high energy, high strung guy but also because we have interfered so much with his sleep patterns. When he was younger we would try to stretch when he was sleeping since he often wouldn't let us at other times. He always slept worse after surgeries, while splinted, etc. Sleeping with a dynasplint isn't the most relaxing thing either and he moves a lot to try to get comfortable. And I wonder why I can't get motivate to hook a TES unit up to him every night. Geeeez.....

Just do all that you can to help instill good sleep habits. Best wishes to you. Hang in there.

Hi, Dani!

Thought I'd share my two cents on your dilemma. I totally understand your frustration! Danny had sleeping issues on and off, but it was never related to any BPI pain, per se.

I think Kath makes some good points. I wanted to add some other thoughts that aren't related to BPI.

My maternal instinct (not medical expertise!) tells me you're PROBABLY going through a normal first-child sleeping problem. My oldest did the same sort of thing. They know they get a response when they cry, because Mom has the time and inclination and quasi-guilt to get up and tend to every little whimper, even to her own physical detriment. By the second or third child, Mom has more willpower to ignore and say (as I often do to Danny and his little sister), "Hey. Enough. Mom needs sleep more than you need a hug!"

I don't know how this compares to the Ferber method, but one thing to try would be this: When Jason cries, go in and pat him and say something soothing, then leave. I wouldn't even take him out of the crib. Then gradually, with each night, go in for a shorter period of time so he realizes yes, Mom is here, but it's not worth the effort to cry because she's not going to stay! You're reassuring him, then, without indulging him ... if that makes any sense. You may have to listen to crying for a while the first few nights (which is really hard to do!), but it will get better. And of course, eventually you just don't go in at all. You have to think of this process as training him, not as ignoring him. I think we all feel that heartstring tug to go running when we hear our child crying -- I know I do! -- but you need your sleep, too, and if there's nothing physically wrong with him, then he just needs to learn to go back to sleep without you as the "sleep prop," as they call it.

The other consideration is: Is he teething? You could try some Anbesol on his gums at night if you suspect he might be getting new teeth.

And my third thought is: when you get really frustrated, try and remember that this, too, shall pass!

Good luck! And give sweet little Jason a big hug from me (but not in the middle of the night!:))

Janet

Kath,

Has your life been dramatically affected by this injury? Are there many things you cannot do? Have you had any surgeries?

Dani
Yes, my life path has been altered by obpi. I have had many gains and many losses and once long ago I made a list of what I had lost and what I had gained.

My physical injury does challenge me at times and sometimes I still get very frustrated.

But everyone has challenges in life, some you can see and some you can't. I think OBPI has helped me be more creative. Because of my physical challenges I attempted to do more creative things and try new things. Not because I necessarily wanted to do them but just to see if I can. ... This injury forced me to explore more options than I would have, if I were not injured.

I found that dating was not a problem my husband did not notice my arm at first. We have been married for 39 years so I guess it worked. I have three children and 5 grandchildren. I was told by my mother I could do anything I really wanted to as long as I tried. I feel if there was a theme song for obpi children it would be “My Way” because we have to find our own way of doing ordinary things (thus we become very creative, flexible and persistent). Or perhaps you could say stubborn and determined… LOL… After finding UBPN and meeting so many other adult/obpi I discovered we all have a well developed sense of humor and that has gotten us through some tough moments.


I can't say that life was easy or that there were not times when I wished my arm normal. My whole life was never about my arm. I never spoke about my arm until 4 years ago when I found UBPN and realize I was not the only one with this rare birth injury and children were still being injured. I knew the words Erb’s Palsy and how I was injured all my life… I should note my Mother and I always spoke about my arm until I refused to talk about it anymore during my teens.
I am sure now that my Mother's focus was on my arm and getting me to move and doing exercises... but she was quite good at maneuvering me into doing stretching exercises and I never realized why? I thought I was Cinderella - hanging clothes on line and ironing and doing household chores... now I realize that is how she kept me moving. I have Horner’s and hand involvement I cannot supinate or touch my head and have scapular winging… so I guess its not exactly a mild injury it’s the one I live with… I never had surgery but for the first 11 months of my life I wore a brace 24/7 and it was removed for ROM and massage.
I hope this make you feel better – life is never about an arm or what is external life is more about our inner spirit.
Kath

Thanks for sharing and for the encouragement! I'm sure it will get better at some point...the question is when???

)

Hi Janet!

Thanks for sharing as well...I have been trying to be tough. Going in after about 20 minutes of crying...patting his back (while he's hysterical) and telling him, "Mommy's here, etc." I stay in the room for about a minute and then leave. As I turn to walk out of the room, his screams get even louder and that is so hard to take! You just want to scoop them up and cuddle with them.

Last night was a good night..he slept through the night..had a bottle at 5am and went back down until 8:30! I could not believe it! I guess he's a little sleep deprived as well...LOL.

Did Danny have more issues after surgeries dealing with those big splints? I wonder if that will be the case if Jason has Mod Quad later on this year?

Thank you for your support...it means a lot!

Give Danny a big hug from us too!!!

L, Dani

Kath,

Thanks for answering my question. It seems to be that your life has not been that drastically affected by this injury, and as you said, it's all how you handle it, your attitude and what you make of it.

Thank you again!!
Dani

Hello Moms out there,
My son was born with multiple problems(not BPI) and he had 14 surgeries before age 18...anyhow,I realized he could never tell me what & where pain was so when he woke up I would just rock him in a rocking chair until he fell back asleep...A must have next to his crib(I wore out 3 of them); a rocking chair was the 1st thing I would go look for in the hospital when we got settled in his hospital room. I lived in it until he was around 10 yrs old(he was small for his age). I highly recommend the use of a rocking chair until children become verbal to tell you "it hurts" & where so you can kiss it & rock away....
PS...My son is 34 now and "all put together and defied all the odds against him. I do attribute it all to the rocking chair method!!
Carolyn J