United Brachial Plexus Network, Inc.

Is your child breast fed?? My daughter just turned one and has a LOBPI and she is starting to almost sleep through the night...she wakes up briefly and then falls back to sleep and that just started within the past few days. She stopped breast feeding Friday. My son was worse (frequent waker) and didn't sleep through the night until he was also off the breast at 13.5 months. He stopped breast feeding one day and the next night he slept through.

Even if you aren't breast feeding, some kids are just crappy sleepers! I truly hope it isn't BPI related or discomfort. Does he scream as if he is in pain?? If so, it could be related, if not he may be hungry or just a 'wakeful' sleeper and apparently they are very intelligent because they are always processing and learning. Just something to ponder

Good luck with your efforts, I have honestly been there TWICE!!!!

Take care.

Shellie

I am robpi and still do not sleep through the night. I have to make sure my arm and leg are warm or I wake up with freezing arm, leg and face.

My older brother (14 years old) told me no one slept in the house for the first year after I was born.

When I was a baby they told my parents there is no pain with OBPI (erb's) but that does not make any sense... if you damage a nerve its painful... I have always had some sort of pain and sensitive to touch on my right arm. At our last camp Dr.Belzberg explained the reason why my brain gets the wrong message... Gentle touch or a tap feels like someone is hurting me... we were three adults all with the same problem... the rule is don't touch my right arm without permission or I get extremely annoyed. It was great to finally get an answer from a medical professional as to why it hurt when someone touch my arm even if they thought they were barely touching me.

Even in summer I must have something to keep my arm warm I prefer fleece because it is soft and does not annoy me.
I never realized how many little things annoy me until I had children and I noticed that so many of the things I found annoying as a child did not bother them at all... Amazing... I guess what you have to find out is what is bothering the baby. I am not talking about a spoiled child that hates you to leave but a baby who falls asleep and wakes up in pain. They cannot put themselves back to sleep or sooth their own pain. Babies cry because they don't have the words to tell us what is wrong.
If you read the adult/message board you will see the pain topic and most of us complained of pain... there is also a post on general/message board and many start to complain of pain at around 10 as they begin to go into puberty.

Sensory Intergration is another problem. I wear my clothing loose and can't stand anything tight on my arm. I would never wear layers and anything rough drove me crazy... My Mom use to call me the Princess and the Pea... because I notice pebbles on clothing etc... I hate it to this day... LOL.. I did not know the name for it but now I am glad I do... most things I have overcome but somethings will never change and always bother me. Each child is different and so is each injury even if the same nerves are impacted.
Sorry this is so long but when I read a post that said the children have no pain it hit's a nerve. They told my mother that 65 years ago but she did not beleive it thank God. If an adult gets a bpi they are in pain so why would anyone say the baby does not feel it?

Kath

I am by no means a sleep expert but I have read a few books (happy sleep habits, healthy child being my favorite). I have 1 semi-ok sleeper and 1 awesome sleeper. I belive the natural sleep cycle is 1.5-2hours so I think your child is waking up every sleep cycle. Most people/children wake up briefly but we dont even remember it. Some kids need to be soothed back to sleep. This is a bad habit (just my opinion). They need to LEARN to soothe themselves back to sleep. I truely believe in sleep training. It has helped us tremendously.

Ah, I see my husband has played with the virus protection again!!! I am a guest!!!

Anyway, Juliana did not sleep well until after primary surgery at 4.5 months. Prior to that she would cry in her sleep and would wake up crying in the middle of the night.

After mod quad, at 14.5 months, she became very clingy and wanted me in her room, etc... I never had a kid like this before (she's my 4th) so I tried to be tough, but these sensory kids... she would cry and throw up. So, I sat in her room. When she was about 3 I decided enough was enough and kept just walking her back to her bed until she had had it. It took about 2 weeks of walking, but she is a fabulous sleeper now!! She can sleep 12-14 hours!!!

good luck. I believe the kids are in pain.

claudia

Kath,

Thanks so much for "speaking" for the babies who can't speak for themselves. It kills me to think that Jason was in pain for 6 months until he had surgery!! But, now I'm sure that was part of it. (I did run to him all that time). I think the sleep training was good for him too, but I'll be even more sensitive to him if he goes through another stage of waking a lot.

Lexi (mom to Jason, lobpi, 11 months)

From Medscape, WebMD June 22, 2005
Even stranger.....I am on the regular e-mail from them and this was just sent.

The Impact of Disturbed Sleep on Pain

Question
What is the impact of disturbed sleep on pain?


Response from Thomas Roth, PhD
Professor, Department of Psychiatry, Wayne State University College of Medicine, Detroit; Director, Sleep Disorders Center, Henry Ford Hospital, Detroit.




A variety of sleep disturbances, including difficulty falling asleep and frequent nocturnal awakenings, are commonly reported by patients experiencing pain. Even among pain patients not reporting frequent awakening, reports of nonrefreshing sleep are common. Sleep laboratory-based studies in patients with acute pain (eg, postoperative patients), as well as in patients with chronic pain (eg, neuropathic pain and rheumatologic conditions), show frequent arousals, difficulty falling back to sleep after nocturnal awakenings, and a reduced time spent in REM sleep.[1]

Clearly, pain causes sleep disturbances. However, it is becoming increasingly clear that these sleep disturbances result in an increased sensitivity to pain, thereby setting up a cycle of pain leading to disturbed sleep which, in turn, leads to more pain.[2] Both the loss of REM sleep, even for 1 night, and partial sleep deprivation can lead to increased pain sensitivity.[3-5] A loss of sleep as small as 4 hours over 1 night results in a significant decrease in pain threshold.[6] Although 4 hours of sleep loss for a night may seem extreme, it is important to remember that the consequences of sleep loss accumulate across nights. Thus, 1-2 hours of sleep loss across 2-4 nights would have the same effect. Furthermore, it may not simply be disturbed sleep that exacerbates pain. The administration of opiates to alleviate pain may turn out to be counterproductive, as these medications are REM suppressants, and loss of REM sleep increases pain sensitivity, as noted earlier. Thus, the preservation of sleep time and sleep architecture are important parts of pain management. Interventions such as maximizing the sleep environment in postoperative and other hospital patients as well as the use of behavioral and pharmacologic treatment to manage insomnia in chronic pain patients are important aids in the management of pain. Finally, insomnia clinical trials in comorbid pain conditions should measure treatment efficacy, not only in terms of sleep, but also in terms of pain control and the need for analgesics.



--------------------------------------------------------------------------------

References
Menefee LA, Cohen M, Anderson WR, Doghramji K, Frank ED, Lee H. Sleep disturbance and nonmalignant pain: a comprehensive review of the literature. Pain Med. 2000;1:156-172. Abstract
Affleck G, Urrows S, Tennen H, Higgins P, Abeles M. Sequential daily relations of sleep, pain intensity, and attention to pain among women with fibromyalgia. Pain. 1996;68:363-368. Abstract
Moldofsky H, Scarisbrick P. Induction of neurasthenic musculoskeletal pain syndrome by selective sleep stage deprivation. Psychosom Med. 1976;38:35-44. Abstract
Moldofsky H, Scarisbrick P, England R, Smythe H. Musculoskeletal symptoms and non-REM sleep disturbance in patients with "fibrositis syndrome" and healthy subjects. Psychosom Med. 1975;37:341-351. Abstract
Lentz MJ, Landis CA, Rothermel J, Shaver JL. Effects of selective slow wave sleep disruption on musculoskeletal pain and fatigue in middle aged women. J Rheumatol. 1999;26:1586-1592. Abstract
Roehrs TA, Blaisdell B, Greenwald MK, Roth T. Pain threshold and sleep loss. Sleep. 2003;26(suppl):A196.




Funding Information

Supported through an educational grant from Sanofi-Synthelabo Inc., a member of the sanofi-aventis Group.



Disclosure: Thomas Roth, PhD, has disclosed that he has received grants from Aventis, Cephalon, GlaxoSmithKline, Neurocrine, Pfizer, Sanofi, Sepracor, Somaxon, Syrex, and Takeda. Dr. Roth has also disclosed that he has served as a consultant for AstraZeneca, Aventis, Cephalon, Cypress, Eli Lilly, GlaxoSmithKline, Hypnion, King, Lundbeck, McNeil, Merck, Neurocrine, Organon, Orginer, Pfizer, Roche, Sanofi, Sepracor, Somaxon, Syrex, Takeda, Transoral, Vivometrics, and Wyeth, and as a speaker for Sanofi.

Lexi you are welcome this is 2005 and we know babies feel pain.
It kills me when I hear a physician say their is no pain with OBPI/Erb's Palsy. There is no basis for such a statement since a baby can't speak only cry.

I remember a doctor telling my mother I was faking to get attention and not to listen to me... We never saw that doctor again. Because he yelled at me to shut up when he grabbed my obpi arm and I cried... my poor sweet quiet mother lost it... I can still remember it very clearly...
If an adult has a nerve pain they give them tons of drugs but a baby can only be cuddled... I also worked at sleep training for my 3 children because I know how important sleep is and how it feels to wake up so often... I admit I personally cannot stand to hear a baby cry... not my children nor my grandchildren in fact any child. I am a big softy when it comes to crying babies but I also feel babies cry for a reason. I hated the short periods I had to let my kids cry... my husband had to hand me the box of tissues I cried with them... LOL..
I never had surgery
Kath

Thank you guys so much for all the feedback! There are definitely a few things I will try.I would like to know more about sleep training - what do I have to loose? Other than more sleep! Ha ha.
My son didn't need primary surgery, but he has a winged scapula and internal rotation. Next month he'll have botox and be casted in external rotation I know he has pain- his therapy sessions are terrible. I try to make him as comfortable as possible, but how do you do that for someone who can't tell you how he's feeling? It's so discouraging, but at least now I have a few more options. Thanks so much!

Hi, Meg. Sorry so late in replying. I certainly think it's reasonable to think that your baby might be having pain or strange sensations in his arm that bother him during the night. I don't believe that my daughter did, but I've heard other parents convinced that their baby was in pain. I think the parent's opinion is usually the most accurate in these kinds of matters. I know that sleep deprivation can be very difficult. Neither of my babies slept too well. I ended up co-sleeping for about 6 months with Nicole (6 yrs. old now & w/LOBPI) and for about 5 months with Joshua (almost 15 months now). Nicole actually slept better than Joshua. I do remember her seeming to be "afraid" to fall asleep for a while after a couple of her surgeries, but otherwise okay. I don't know how you feel about co-sleeping. I never planned to do it, but with breastfeeding, it was sooo hard to feed the baby and stay awake through the whole feeding so I'd end up finding myself asleep w/the baby beside me. Plus, if I'd try to move him/her at that point, it'd wake them and they'd want to nurse again (the cycle goes on...). I actually bought a co-sleeper bassinet for Joshua and thought it'd be great, but it wasn't "close enough" for him.

I think I handled lack of sleep with Nicole as an infant better than I did w/Joshua b/c I was 5 yrs younger and could "sleep in" more w/her, but that really wasn't an option with a 5 y.o. in the house. When I moved Joshua to his own room / crib at 5 months, it did not go well. I found myself falling asleep in the rocking chair nursing him and was worried about dropping him on the floor. I'd been in touch with a wonderful certified lactation consultant who is also a pediatrician. I called their office, desparate for sleep, but wanting to continue nursing (as some people suggested giving formula instead of B/F'g). They suggested a wonderful book to me: "The No-Cry Sleep Solution: Gentle Ways to Help Your Baby Sleep Through The Night" by Elizabeth Pantley. It is not a "quick fix" but includes a long-term commitment of gentle ways to help your baby sleep better. Some people wrote about sausage rolls and sleep training. I'm not sure what the sleep training includes. I know that many people suggest the CIO (cry it out method). I tried that w/Nicole when I moved her into her own room / crib at 6 months and within a couple nights, she was going to sleep fine and only waking once after about 6 hrs and then sleeping about 4 more. When I tried this w/Joshua though, it did not work at all. All babies are so different and it's great that others gave you these ideas that worked for them, but realistically, if your baby is up every 1 1/2 to 2 hours, I suspect it's not going to be that quick and simple for you. Of course, I'm NO sleep expert either -- by any means! Presently, Nicole sleeps well, usually wakes up once running to the bathroom and goes right back to sleep. Joshua usually sleeps about 10 1/2 hours a night now and needs help getting back to sleep (by nursing) once now. You didn't mention if you're nursing and I think that nursing babies usually wake more frequently than bottle fed babies partly b/c breastmilk is more easily digestible so they're hungry again sooner. In Elizabeth Pantley's book, you will be tempted to skip right to the "solutions" but I really encourage you to read it all. She really gives you a lot of info. to help you understand how babies (and people in general) sleep, etc. There is not "one" method (if there was one way for everyone to get their baby to sleep, then everyone would do it, right?), but just a progression of gentle suggestions. She actually just came out with a new book, "The No-Cry Sleep Solution for Toddlers and Preschoolers" which I'm anxious to get and read. It's not too bad nursing once a night, but I'm soo ready for Joshua to just sleep through the entire night at this point.

Another thing is since you think that it might be pain-related, have you ever tried giving him some infant's Tylenol or Motrin at least once before bed to see if he'll get one good stretch? I'm not suggesting it and it's prob. not something you'd want to do longterm even if you find that it helps, but it might help you to really determine if it's pain related. Also, even if you haven't seen any teeth yet, this is a typical time to begin getting the pains of teething. Some babies sleep great until they start teething then start with the night wakings.

Well, I hope this helps. I just wanted to share our experience and esp. the reference to a book that is wonderful in my opinion.

~Tina, bpmom@comcast.net (Mom to Nicole, 6 y.o. w/LBPI & Joshua, 1 y.o.)