Sleep, or the inability to.

    • August 20, 2007 at 12:22 pm

      sorry no info

    • Anonymous
      August 20, 2007 at 12:44 pm

      This is what I think:

      School is starting soon. He probably has some anxiety about that. I know I would always start to worry about a new school year as a kid. Will I like my teacher, will it be too hard in the next grade, will I still have friends? It’s all normal stuff.

      Is he getting enough exercise & fresh air during the day? Maybe after dinner time you can take a walk together. Talk about whatever he wants to talk about & hopefully that will relax him some.

      Maybe he’s having some aches & pains that he’s not telling you about & that’s worrying him. He might be afraid that it’s coming back & doesn’t want to tell you about it.

      I would take him to a psychologist but not a psychiatrist. Psychologists don’t prescribe medications. I don’t think I would put my child on an anti-depressant. I saw a psychologist for 5 years, as a child, and it really did help me. We would sit & talk about whatever I wanted to. There was no pressure put on me & I didn’t feel like I was seeing a shrink.

      I would talk to the psychologist first then think about doing a sleep study. Maybe he’s having some sleep apnea & that is making him not want to sleep.

      Basically, it could be a ton of different things. Just keep looking for the answers & eventually something will work out.

      I don’t think it’s the GBS keeping him awake or messing with his sleep directly. Emily was more tired & would fall asleep at 5pm and sleep until the next day.

      I hope you get some answers soon.


    • Anonymous
      August 20, 2007 at 3:12 pm

      Hi Dawn. I have depression and wholly support antidepressants — for adults! They have not been adequately studied on kids. I agree with Kelly — a good psychologist or clinically liscensed social worker, especially one that specializes in kids of family dymanics — could be a huge help. Worked for me when I had postpartum depression/anxiety/stress etc.

      You say Kevie’s expressing his anger in a “appropriate” way, but he may not want to upset you any further than you already are and so may be holding a lot back. Sometimes strong emotion can cause a person to somaticize, that is express the emotion in physical symptoms, like the “anxiety breathing” you describe. Insomnia can be another “symptom” of emotional upset. The worse thing about sleep disorders is that they feed upon themselves — the less you sleep, the more worried you get about getting sleep, the harder it is to sleep … it’s a terrible cycle.

      Sometimes when I can’t sleep (which is pretty often) the best thing for me is not to try to fall asleep. I usually watch TV until I fall asleep or at least have taken my mind off of it. Or something to relax before bedtime — like a warm bath, back rub, reading — whatever works for him. Also, if he is having some aches and pains, I think you could give him tylenol or advil PM — it’s basically those drugs with “benedryl”-like meds added. Just check the dosing since I think most of those are designed for adults. Have you tried that for yourself? You mentioned Xanax — I’ve never taken it, but I’ve taken a mild, nonaddictive sedative, clonazapam (Klonapin), for years. I don’t take it every night, but if I’ve had a few restless nights and really need the sleep, it does the trick.

      Wishing you both sweet dreams … soon!

    • Anonymous
      August 20, 2007 at 3:21 pm

      I’m lucky if I sleep 2 hours in a row at night. Nothing helps. I get up, watch tv and try again. I take Neurontin and have sleeping pills. The sleeping pills turn me into a zombie who can’t sleep! I contracted GBS in May 2007. Maybe this will go away; I don’t know. But for now, I take the 2 hours sleep whenever I can. And I still have the night terrors and emotional meltdowns. I just try to roll with them. It’s not easy but I refuse to be a GBS victim; I aim to be a GBS survivor.

    • Anonymous
      August 20, 2007 at 3:23 pm

      Just some thoughts for you…thinking of you & K!

    • Anonymous
      August 20, 2007 at 3:30 pm

      I too have the anxiety attacks but for no apparent reason. thye only happen a couple of times a month. I do take muscle relaxers that help me relax and sleep too. my muscle spasms are becoming more frequent and constant. so the muscle relaxers are a double bonus for me. just letting you know what has worked for me. plus I am having bowel problems that are bringing the anxiety on again. I went to the ER and I am FUll of stool event hough I have a bowel movement everyday. so might be a blockage. good luck to you hope you find something that works for you soon….

    • Anonymous
      August 20, 2007 at 3:42 pm

      Hello Dawn,
      First off, don’t ever be afraid to talk to us through your threads and posts. We’re a BIG supporting family. Now about sleep. If Kevie just started with a sleep problem recently, then it caused by anxiety about something. But if he’s had a problem sleeping since the first day of the syndrome, it’s either both or the physical feelings you get when you try to find a comfortable sleeping position. I have terrible problems trying to sleep, ever since the first day of CIDP because my comfortable sleeping positions were taken away. I never could, even before CIDP, lay on my back. I used to sleep best laying on my stomach, but can’t anymore because I lose all sense of perception, can’t feel how my legs are placed. I feel like I’m twisted like a pretzel! The only way I can “try” to sleep is on either side, with a pillow between my legs. Since I’m on my side, my arms get placed one on top of the other and I feel like I have bone pressing against bone. That bone to bone feeling is why I need to put a pillow between legs. This is the ONLY way I can sleep though. Ever since the syndrome happened to me, it now takes me two to three hours to finally fall asleep. I think the dark circles under my eyes have just become a part of me so that no-one else notices.

      I also have anxiety/stress reasons why I can’t sleep, so even if it wasn’t for the physical reasons, I still wouldn’t get a good nights sleep. I think we’d all agree that this alone can cause lack of sleep. The reasons for my anxiety/stress is a long story, so I won’t go into that. A sleep specialist might be able to control the anxiety/stress reasons, but not the physical feelings these syndromes give us.

      I wish I had an answer for you, but I don’t. I just wanted you to know that I understand. Is Kevie able to tell you exactly what he feels when he tries to sleep?
      From my heart,

      I’ll be back with a hug.

    • Anonymous
      August 20, 2007 at 3:50 pm


    • August 20, 2007 at 5:29 pm

      Hi guys,
      Thanks again for the replies. Kevin has had this sleeping issue since this all started a year ago. We do all of the relaxing techniques, back rubs, baby bath lavendar scented bubble bath, heating pads, benadryl. Even if he goes to a friends for a sleep over he can’t sleep. I even bought that Tide simple Pleasures lavendar vanilla, lavendar is supposed to make you sleep?!

      I agree about the anti depressants, that is why I am fighting the pediatrician on the shrink. I think medicating a child just puts the problems away temporarily. There has to be some sort of Ambien for kids!!

      I am waiting for the neuro to call, hopefully he will help us out.

      Regarding sleep apnea, Kevin had his tonsils and adnenoids removed two years ago. I really do suspect it is the anxiety of the whole situation. I just expected the good news regarding the re dx of aidp from cidp to change his frame of mind. Hopefully one of our docs will call back with some info regarding sleep meds just to get him on a schedule.

      Dawn Kevies mom 😮

    • Anonymous
      August 20, 2007 at 5:56 pm

      Hi Dawn,

      Your son is about 10 years younger than my daughter, but mabe something in our experiences can be of benefit – our experiences with anti-depressants and anti-anxiety drugs.

      Nights were horrible for my daughter for the first year – mostly because (I think) she had such frequent and severe relapses. During that time, she still suffered from pain in her legs and burning feet that made it nearly impossible for her to sleep for long periods of time – day or night. She had been prescribed several anti-depressants, all of which had consequences. One actually made her more anxious, and increased her inability to sleep. Another, scared the wits out of me, when she heard voices in the night and would call out to me. Despite these problems, doctors continually wanted to try different types of anti-depressants. We were finally at the point where anti-depressants were just not an option.

      Another problem she had that first year was intense migraines (she had never had a history of headaches before cidp). We needed to find a way to deal with these problems without causing more disturbances. During one hospitalization, she was given ativan by iv – not an anti-depressant, but an anti-anxiety drug. The iv form of ativan is a seriously effective drug – while taking this, she was pretty “trippy”, but it gave her temporary relief, and she was happy, pain-free when awake, and slept long and deep through the night. She continued to take it in tablet form for a few weeks when she went home. Ativan may be too strong of a drug for your 10 yr old, but a milder drug in the same class may be something to inquire about. My daughter did not have the negative side effects that the anti-depressants caused. This is only a short-term solution to use when it becomes absolutely necessary, as these can all be addictive drugs.

      We also knew that it was time for us to start a new beginning, psychologically. Until now, our focus had been on her “loss” and how we could get back that part of her identity. It slowly became clear that we had to let that go and start looking forward instead of back. May I ask (if I’m not being too nosey), does Kevie have expectations that he can run and play – without having to “pay for it”? Do you have any measure of how much he can do (physically) before he has residual problems cropping up? I remember my daughter having more problems falling asleep when she was feeling exhausted – it made her more restless. As so many others here have experienced, it can take a few years to get past the damage done to his nerves. Just knowing that can help calm Kevie’s fears, and give him (and you) incentive to slow down and relax a bit. Easier said than done – I know from personal experience! I hope you find a solution soon.

      best wishes


    • Anonymous
      August 20, 2007 at 10:43 pm

      Hi Dawn: There are many reasons for insomnia-sometimes physical, sometimes psycholoigcal and sometimes both. I would recommend the sleep study for Kevie-it is like staying in a motel room for a night and will reveal physical causes you might not know about-such as restless legs syndrome. I suspect there is an emotional cause here, as going through this disease process is especially traumatic. I doubt you will find a medicine that is going to work as you hope it will but even if you do you should consider insomnia a symptom of emotional distress and getting some psychological treatment would be potentially very positive. While it is tempting and understandable to just want to get rid of the symptom for a while at least, I really believe insomnia in a child is often a response to trauma that has not been worked through. Does he ever have nightmares or strange dreams that he remembers? They can sometimes reveal what is going on. Good luck, Jeff

    • Anonymous
      August 21, 2007 at 3:17 am

      Hi Dawn, are you having problems sleeping also? Maybe Kevie is feeling your anxiety, and it has an effect on his sleep also. I’m not blaming you, I just know how my son is when I’m having problems or stressed out, he has sleep problems also. Obviously I have sleep problems, since its after 3 am, but I have had it for over 18 years. Its just worse sometimes, more so when I’m having residuals flare up. I use to use Ambien, until it just stopped working, the dose kept going up with no effect on me. I’m just to stubborn to fall asleep I guess. I found that if I kept my stress to a low roar my son(who is almost 9) sleeps alittle better, more relaxed. He does have his own night time problems, like night terrors since he was 3 months old, among other things. We had him on meds, they worked good until he got use to them(too much like me) he was on imipramine(sp) it is used for many different uses. Another trigger for him is school, from being bullied in kindergarten, he is better in the summer time, at least for the past 3 years(moved away from the first bully). I would give the child psychologist or a child counselor a try, we did for both of my kids, it has helped alot with both my health problems and their other stressors. I don’t think they would have been able to handle my issues without the help of the counselor. It was a good way for them to talk out their problems and get a different perspective on how to deal with it. Maybe Kevie will be able to sleep after school starts up again. I’m keeping my fingers crossed for him. Hugs to you both!