I'm wondering, as I've been awake for some time...has anyone experienced complete sleeplessness?
Our son is 5 (almost 6). He has cerebral palsy (mild-moderate physically, but global effects cognitively). He literally did not sleep through the night until he was 5. I'm not talking about going to sleep at 8 and waking at 5 like some parents call not sleeping...I'm saying he did not sleep. He would go to bed at 7 or 7:30, wake at 11 to 2, sleep until 4 and then be up again... OR he would stay awake for up to 48 hours at a time! Yes, 48 hours! He started taking Risperdal at night and he was finally able to sleep through. We changed the Risperdal from only at night to split between day and night. This worked for a while, but now we're cycling with sleep again, though the most he's stayed awake this time is 24 hours. This is what he'll do:
He won't have TV before he goes to bed. He has big motor activities during the day or other SI diet input. We have a night routine. He'll get to bed at 7:30-8:00 pm. Sometimes he can't shut off and stays awake crying for us for up to 2 hours. Then he sleeps until about 3:30 am and wakes up. He screams (playfully and happily) at the top of his lungs. Bounces on his bed, bangs his head on his pillow, laughs, talks, re-sights movies, yells, screams, fake cries, bangs on the wall, or makes general noises. He does the exuberately, loudly and constantly! He zooms from one of these to the next. If we go in and try to calm him and remind him how to shut off and go to sleep ("close your eyes, no moving, no noises" while laying with him) he will try to calm himself, but ultimately he doesn't. He does hand-ringing and then sometime can't contain the energy and yells out at us. When we leave, he's right back to the activities within 2 minutes.
We can't keep doing this. We're not getting any sleep and he's starting to wake his little brother and sister. We've tried some homeopathic remedies in the past that didn't work. I'm wondering if it's time for that again, if his Risperdal should be resplit so the majority is in the evening...if we should sound proof his room and let him go at it? Oh..he does take naps in the afternoon after school (1/2 day school). His meds make him so tired he can't really stay awake (plus not sleeping at night) and becomes cranky without them. We only let him sleep 1-2 hours max....
THANK YOU FOR ANY HELP!
Thank you to everyone who responded to this request. I think we're going to work on the medications that he's taking now and reconfigure them. We've been testing a new configuration and it seems to be working better for him, though we still have a lot of tiredness during the day. Time will tell.
Thank you all again!
I'd go back to the Risperdal. He seems to be over-stimulating. He needs help calming down. Has he ever been DX with ADHD. He sounds exactly like my oldest son, who does have ADHD and Autism. Good luck. Oh and we use Visteral and Seroquel for sleeping.
I know that cutting out the naps seems almost impossible, but I think you may need to give it a try. It is very hard the first week of removing naps, lets face it we enjoy that time, but it may really help get his night's straightned out, also give the meds at night. My brother used to be on it also, different issue.
That is the best I've got at the moment I hope you can get it straightened out!
Well dont have much exsperiance, but maybe if you cut out the afternoon nap, it could help him sleep longer at night. also may try not giving him any stimulants at least an hour before bed. this are things like caffiene or sugar.
Hi G.,
I see that you have already updated but I wanted to offer my thoughts. You are in a hard place. You are a good parent who is looking for the best way to deal with a very difficult situation. My suggestion to you would be to work closely with your doctor/your son's doctor and see if there is a sleeping medication you can give him. A good friend of mine has a disabled 14 year old. She has given him a sleeping pill each night for years. This gives him a full night of sleep and the rest of the family some sanity as well since they are all able to sleep. I know he is already taking so many things but sleep is a critical piece to overall well-being (for all of you).
Personally I think you are right to let him nap. Even kids who are not on medications get tired in the afternoon at age 5. Children who are over tired don't sleep better at night. They actually have a harder time calming into a deep sleep. You know how you feel when you are overly exhausted. It is so much worse for a 5 year old who doesn't yet have good coping skills.
I hope you find a solution. Don't wait!!! Seek some professional help for this now. You need your sleep!!!
Take care,
B.
G., I don't have experience with your exact situation but I DO have a lot of sleep problems myself. It looks like your son is sleeping at least 7-8 hours at night by 3:30 am. If you are putting him to bed at 7:30-8:00 pm he may not be ready to settle down at that time. I am a night person by nature and so are two of my three daughters. Trying to go to bed at that hour makes me restless and up all night. If I wait and go to bed later I have better rest and am able to sleep through the night.
I know this doesn't make it easier or give you the break you need, we all need from our kids, at some time during the day. You may be able to find some help, even temporarily to get you through this time.
Bless you and your family!
Hi G.-
My friend's child has cerebral palsy. Her's actually came from her dad shaking her when she was a baby. So, she has had more problems than just this. Her daughter is younger (just turned two) but she takes her to many classes each week to work out her problems and learn how to help her teach her different from her other children. She is constantly at work on it.
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I can also give you a name of a good doctor that will listen. He does not work at the clinic.
J.
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hi..i remembered seeing a 20/20 show on a boy who couldnt sleep...so i just googled in 20/20 programs. when it came up i typed in boy who couldnt sleep and up poped the clip of the show..it sounds like your letter..a long shot but worth you looking at..good luck. i hope you find an answer..J.
God bless you, your life sounds so busy I can't believe it is real! Do you ever get to take a nap? When your son is in school get someone to babysit your other two so that you can have a nap, and do it on a regular basis. Also, you are strictly forbidden from doing any chores whatsoever during your nap time (if I could acctually enforce that I would). I am not sure that it would help much, but it may be a good idea to try massage. Get a licenced (and preferably nationally certified by the NCTMB) massage therapist to come to your home and show you how to give you son a relaxing massage. (and while you're at it, make an appointment for yourself to get a massage!) Massage is very good for relaxing and it stimulates the parasympatheic nervous system, some people call it the "rest and digest" part of your nervous system, so it can be very helpful for insomnia. Even if it doesn't work for the insomnia, it will be a good way to spend time bonding with your son so it is worth a shot! I haven't checked to see where you live, but if it is anywhere near Pocatello, Idaho I would love to help you out for free, God knows you deserve it. I am a LMT, NCTMB (fancy initials for massage therapist). Write me a message if you are interested ____@____.com
Hey G. it sounds like you are super mom!! I know that you are struggling now but i believe that if you stay consistant that it will pay off. A great distraction for no more naps is bath time. Even if that means giving him two . I also have used my kids favorite things like ice cream and cake. You are truly heaven sent. God has blessed you with what he knows that you can handle. And god will continue to bless you with the stregnth and power to go on . Good luck and god bless!!
G. -
Your son's behavior, and what can be expected of him, are very different that what many of us have experience with. I have to adire you for your patience in dealing with your son.
The only suggestion I can give is to speak with your son's doctor. I am assuming you have a pediatrician who is familiar with cerebal palsy and your son's other challenges. (If not, find one.) Explain the situation to the doctor; my guess is that he will probably need his medication adjusted (especially if it makes him sleepy in the day but doesn't help him at night).
I would be very careful about any 'natural' medicines, herbs, etc. Children metabolize things differently than adults, and your son's special circumstances may even affect that more, so that what is safe and effective for an adult may not be a good idea for your son. If you want to try something, talk to your doctor. Most good doctors have an open mind to natural remedies, and he can guide you in what is safe for your son.
Good luck! Hang in there - God knows you can do it. That's why he sent you this special spirit.
Oh G.! I have no advice, but you are an inspiration! I cannot imagine....my heart goes out to you.
Hi G.:
So good to hear from you. We have a developmentally delayed three year old. She has a rare genetic syndrome called Potocki-Lupski Syndrome (extra genetic material on chromosome 17). She wasn't nearly as extreme as your child (in terms of sleep) but she did have the 2 hour getting to sleep at night problem. She also woke up a lot at night and would wake up so tired the next day. We learned that sleep disorders are pretty common with PTLS kids. I was opposed to use Rx drugs to get her to sleep but needed to do something. I asked our geneticist, several of the moms on the yahoo group for PTLS and doctors at TX Children's Hospital and many recommended melatonin. Perhaps this is one of the homeopathic things you have tried.
Risperdal is not indicated for sleep disorders (you probably know that) and in one study 26% of patients experienced insomnia. This was a short-term study. I wonder if drug build up could happen making this worse.
The melatonin has VERY few side effects, even in children. It is made for helping with sleep. I give Chloe (she weighs about 33lbs), 1mg per evening (about 20 minutes before bed). I use a liquid formulation and would be happy to tell you more if you want more information. We had to cut out naps and put her to bed by 6:30pm or 7:00pm.
Have you checked to see if his other meds could interact with the Risperdal? If you decide to take him off, it looks like you may need to slowly wean him. I just briefly skimmed the information I googled so definitely check with your doctor before you take him off.
I wish I could do more for you as I cannot imagine what life is like!
Maybe he needs to burn more energy :) - we own My Gym Children's Fitness Center and we have a special needs open gym every Tuesday. Check it out. Maybe we could meet.
A.
G.,
Your post put me in tears. You are one of the strongest mothers I've ever "met" (and I am a peds nurse). What a blessing you are to so many people. With patience, love and strength like yours...there is a special place for you in heaven (sorry if that was too much a Christian reference).
Anyhow, as a mom and nurse, I would definitely go back on the Risperdal. If it worked so well for you, I wouldn't give it a second thought. For the health of your son, and every other member of your family. Again, this is just my opinion. This will all be especially an issue when your younger babies start school.
Anyhow, best of luck to you. YOU ARE AMAZING!
Hi G.! Sounds like things are really tough and you sound like a loving, wonderful mom! Although I don't have children with special needs, I think it might help you if you had some help. Maybe a night nurse, or a CNA. Getting some help might help the whole family get some real sleep as well as your son too. Sometimes all you need is a little sleep and some TLC. :) Hope this helps!
T
Have you checked into getting a night nurse? And sound proofing his room might be a good idea so the other kids can get the rest they need not to mention yourself. A baby monitor for you to hear him at a lower level would still allow you to hear what is going on. Good luck and God bless sounds like you have your plate full. :)
Not that I am an expert but give him all the sleepy meds at night and don't let him nap during the day. See if that helps.
C. B
