Re: Sleeping or lack thereof

[Guest guest]

--

Oy vey. I'm right there with you, intermittently, at least.

Occasionally, mine will sleep up to 8 hours. The more typical night,

however, begins with the boy nursing to sleep (what will I do when he

weans?) at about 11:15pm, then sleeping until around 2 am, whereupon he

wakes again, wants to nurse, at least a little, at least until he

settles in again. Often, if he can just burp, he'll go back down for

at least a couple of hours more. As was the case with your little guy,

mine was originally not so bad a sleeper, typical for a newborn, doing

really pretty well as an infant.

Last summer, after a weekend in which he slept just under 6.5 hours

over the space of about 38 hours, I called the neuro first thing Monday

morning and told him we had to do something different because I was

about to lose my mind. We'd discussed melatonin, but the neuro doc had

been reluctant to use it with a child under two, so we got instead a

scrip for Clonazepam (Klonipin). While I'm still not over the idea of

having my toddler on a big, bad benzodiazipine drug, things are

generally much better around here, sleep-wise. At least, it's been

awhile since I just felt echo-y because I'd had so many nights in a row

of about three hours each, or my arms seemed to have lost feeling

because sleep wasn't happening, or my eyes were just perpetually

bloodshot.

I don't know if you've tried anything like this or if there's anything

else you might want to look into (reflux or an inability to reposition

himself comfortably play heavily into successful sleep here), but the

Clonazepam has truly saved us both (as well as the older sibs). Two

nights this week have been pretty rough and I'm not yet recovered. But

it's nowhere near what it used to be...

I'm sorry it's so crummy. And you may want to take the above with a

grain or two of salt, since I'm just coming back to finish this post at

1 am and the boy is still up. Argh. At least we haven't had this in

awhile. (Monty Python's " Always Look on the Bright Side of Life " is

running through my head.)

Hope things are better at your house tonight.

Blessings,

mom to 5

[Guest guest]

Hi ,

(11) was a horrible sleeper from birth to age 3. When he was sleep

deprived he had seizures so his Neurologist put him on Chloral Hydrate. What a

blessing that was. I had to learn to sleep again because I was used to no sleep

for 's first three years. After a couple of years on Chloral Hydrate

started waking again and I would go and 'turn him' but then it started

happening more and more frequently. Hubby sent me away for 4 days and by the

time I got home.......... was back sleeping through the night again. I

cannot say enough good things about how well Chloral Hydrate has worked on

for the last 8 years. We only had to increase the dosage as has

grown. Lack of sleep takes a toll on your health as well.

Sharon

[Guest guest]

I just wondered if you have checked if the sleep issue could be

seizure related?

My son's seizures are sleep triggered!! so he wouldn't sleep, a

normal night for him would be to fall asleep at 11pm or there abouts

sleep for 15 mins then be awake until 3-4am, after 4 yrs of a

serious lack of sleep we decided that enough was enough and did a

sleep diary which we took to his neuro and he put him on melatonin, i

have to say this was a god send!! we had to muck around with the dose

until we found one that suits but after that it was heaven!!

If there is a issue with seizures you just need to watch out for any

increase (because of the melatonin), apart from that i found no side

effects.

Now he is 7yrs(8 next month) and because of the lack of sleep it is

me who's the insomniac(sorry can't spell) and i only get 4 hrs a

night if i'm lucky.Typical!!lol

Hugs To all our Angels

mum to 7rs PMG/Liss, seizures G-tube and breathing issues

[Guest guest]

My poor Beth is beside herself. Torin does not sleep well either. She has

spent so much time with him in her bed she now just sleeps on the floor in

his room. her back has given up now as he is a big 2 year old now and very

heavy. I am finding it difficult to deal with as well now. He has had a

sleep study, no help. He has been on various sleeping meds, these have left

him zombi next day. the present velergan Fort which is used as sedation in

hospital is now not doing much. The sleep specialist suggests a queensize

matress on the floor and share with him and slowly get him used to not being

able to touch her in the hope he will get over it. He too slept well as a

baby. The little monkey sleeps through all night when he is at my house, in

a cot next to my bed. It is at home he is a devil.

On the bright side he took a step himself all by himself till he realised

what he had done and sat down, still he is crusing along the furniture so

hopefully walking is not far off. It will be a relief to everyone including

himself when he is off.

Grandma Carol, Beth and Torin 2 PMG hemiplagia and profoundly deaf with a

cochlear implant and a little redhaired devil.

_____

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[Guest guest]

Hi,

I can sympathize with your situation. My son (11months) is all

over the map with his sleep, especially at night. Finally, in May

through the recommendation of one our therapists at Children's hospital

in st. Louis. I went and spoke to this woman at the Sleep Institute. I

now have on 2 naps per day with a specific number of hours he

needs to sleep during the day. Our biggest challenge has been at

night.He'll go to sleep but then he wakes up 2-3 hours later, and stays

awake for 2-4 hours! AHHHH! So, to make a long story short she told me

his cicadian rhythm is all messed up. She gave me specific times to

wake him up in the morning(which apparently dicatates the rest of the

day), and a very specific time he needs to go to bed at night. This is

night two, and I have to say last night was not bad... He was not up

for hours...Anyway, maybe you can seek out someone from a sleep

institute that deals with special needs children that can guide you!

I hope this helps you!

Sincerely,

(mother to 11months) R sided Polymicrogyria.

Trach due to vocal cord paralysis, and no more g-button!

>

> Has anyone suggested doing a sleep study! there may be something

goign on that no one

> know about - my friend son had one and it turned out he had sleep

apnea so everytime his

> oxegen levels dropped he would startle awake (his bodies reflex to

get him breathing

> properly again.)

> ~carrie

>

[Guest guest]

Hi . Torin is still a bad sleeper. This going to sleep then waking 2

hrs later seems to be a patter for our kids. Would you be willing to share

this timetable for sleep and waking that the sleep person gave you. I has to

be better than sedation( which does not really work well).

Thanks Grandma Carol, Torin 2 Left side PMG hemiplagia Deaf.

_____

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[Guest guest]

Hello everyone who has replied to this post......a while back we

posted almost the same questions (archive laurafreeman05) My child

WILL NOT SLEEP THROUGH THE NIGHT either! We thought it may have

something to do with his PMG (right sided PMG) but, after waiting

patiently for his appt with the neurologist (and pediatrician) they

claim that is not the case. My son, , finally started sleeping

through the night at 9 months for about 2 weeks, then since then, he

wakes up any where from 2 to 9 times every night! AHHHHHH! We

have tried Melatonin, on the 'over the fence' advice of the

neurologist, and cannot really say that it helps. Getting him to

sleep is not the problem, keeping him asleep is! We have tried a

homeopathic product called " Quietude " and in a 10 day span actually

had 3 nights of uninterrupted sleep, but the directions indicate not

to use past 10 days...well, we were at the end of ten days, and

since discontinued it. That was the most success we have had. His

first EEG at 5 months indicated eplipetic type seizuers but the

second EEG at 1 yrs showed no indication of them, so we were told

that night-time seizures were not the issue..... WHAT IS GOING

ON?!?!?!? You cannot tell me that it is something that is " typical "

because this is truly not! I am SO TIRED! And if affects absolutely

every aspect of our lives...every family member! has one nap

during the day which is on average 1.5 hours long. If he is awake

all day or sleeps all day has NO effect on the quality of sleep he

has at night. I can relate to the comments posted about

the 'sleeping with the child' comments, we have a 6 foot foamy we

drag into his room on really bad nights so that we can sleep on

because he seems to derive comfort from our presence. My husband

works out of town Mon - Thurs so the day-to-day grind falls to me!

Looking on the bright sde, I can change a diaper with my eyes

closed!

Freeman (Mom to , right sided PMG and CMTC; our little

blue-eyed, blonde, charming, loveable little sunshine - who does not

SLEEP!!!)

>

>

> My son Evan does not sleep through the night at all. I usually put

him into his own bed and he stays there until about 2 hours later.

He takes a nap during the day and is really cranky if he does not,

plus it is a great " break " for him and me. Once he wakes up at

night he just cries and cries until I come and get him, his door is

open and he is able to walk to my room if he wants but he just

cries, it is almost like he is still an infant, he usually wakes up

from sleeping crying like a baby usually does. So I try to lay down

with him in his bed, he sometimes falls asleep but is up again an

hour or two later. So in the name of us both getting better sleep I

just pick him up and take him to bed with me. He usually has to hold

tightly to me in my bed and if I turn my back he cries but I try to

just ignore him because I need him to go to sleep. He even wakes up

when he is in my bed but not as many times as in his own bed. He

also asks for a drink when he

> wakes up also.

>  

> We have had a 72hr EEG and it shows spikes that have the potential

to be seizures but that was year and 3 months ago and the

neurologist said that it should not be waking him up at night.

>  

> We have tried different medications as well, Trazadone, Clonidine,

Melatonin, Ativan. Nothing helps him stay asleep, I have no problem

getting him to go to sleep but it is the staying asleep that is the

problem. Ativan is no longer an option because I gave it to him a

couple weeks ago when he was doing serial casting and his cast was

bugging him and keeping him up at night, I thought it would help him

relax and get to sleep. He ended up having hallucinations and I took

him to the ER because it freaked me out. I also think he had about

20 small  3-5 second complex partial seizures while at the ER also.

>  

> I am just at my wits end with this. I am so tired of him being in

my bed and waking up to his whining or crying. My sleep cycle is so

messed up that I cannot even sleep through the night when he is not

home. It has been since he was about 18 months, he took a little

longer as an infant to sleep through the night but he was doing it.

I specifically remember when my hubby was out of work and I was

working we would take turns getting up with Evan (age 15 months) and

on my nights he would usually not even wake up until at least 5 or

6am and I remember sneaking out of the house with my shoes off so

they would not make noise on the floor. So I truly think something

happened to make him not sleep through the night. I have tried the

cry it out method so many times and his neuro even says that this is

not really something that will work for him.

>  

> I just wonder if this is a Polymicrogyria or Cerebral palsy thing?

What other medications have any of you tried? We almost put him on

Ambien and I am worried that this type of medication is our only

option. I just do not know what to do and I am so tired all the time

even if I can sneak in a nap during the day. I just want him to

sleep through the night in his own bed or at least soothe himself

back to sleep in his own bed.

>

> Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old,

7yrs nda and SM to 16yrs

>

> www.justinichfamily.blogspot.com

>

>

>

>

>

[Guest guest]

Hi All, You will all understand where I am comming from. I am full time at

Uni so have not been able to help with little Torin. They have all had the

flu and so they are all exhausted. I had the day off yesterday so I went

over to see my little boys. I walked in to an exhaustrated daughter and a

screaming Torin, he has been crying for days. he is so frustrated, he wants

thing but still has no language and he throws a tantrum.

I just picked him up and took him home with me and put his mother to bed. He

was not too bad last night, not good, I did get some sleep. Only after I

managed to get him off my arm. He wants to be in contact with you, I think

it is a security thing. It had almost got to a dangereous piont for my

daughter I have never seen her so upset. The flu, no sleep and a screaming

trantrum throwing baby, a sore back from carrying him and a husband who was

being horrible as he was exhausted too.

Oh well at least when i rang when I got home tonight she was back to normal

and Torin had been good as well. How different a nights sleep makes a

household.

Next week I can go back to having him twice a week to give her a break.

Torins legs have tightened up and they are to be botoxed in afew weeks, but

now they are worried about his hips and are talking operations. He is also

in for a 24hr, pH monitor this week and a gastrosophy and a barium swallow

next week. They are trying to see if it has something to do with his sleep.

Can anything else happen in a week. Still on the positive side the

neurologist epects him to walk shortly and to be able to go to a main stream

school with a Deaf unit so all this is so positive.

You all know the 2 steps forward 1 step back life with out kids,

Grandma Carol, Torin PMG, hemiplagia. Deaf and our wonderful little

redhaired deamon.

_____

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[Guest guest]

Just catching up on posts (wow! the list sure has been active

lately!! that is fantastic!) and I wanted to give some of you hope

when it comes to sleep issues.

is 6, has BPP. He also had major sleep issues from the time he

was born. We had every study done to determine the cause, none could

be found. He had trouble settling down to fall asleep and then once

he fell asleep he wouldn't stay asleep longer than 1-2 hours max.

Then he would need to be walked around and comforted until he fell

back asleep and from that point he would need to sleep on someone for

the remainder of the night where he would continue to kick and be

extremely restless, often waking up every 2 hours or so to start the

routine again.

We started giving him melatonin and tofranil when he was appx. 1.5

years old....this definitely helped him fall asleep, but again, would

not keep him asleep for long intervals.

Around the age of 4 he started sleeping for longer intervals but

would still either need someone right next to him or he would need to

be on top of either my husband or myself.

At the age of 5 he started sleeping through the night as long as he

was touching someone, but didn't need to be on top of the person,

just next to them.

Around 5 1/2 he started sleeping on occassion through the night

without someone next to him. Now that he is 6, the number of nights

that he successfully makes it through the night is increasing. He

still will come into our room, but now he will just climb into bed

next to us and go back to sleep! A HUGE change from 2 years ago.

We still give him 1 mg. of Melatonin and 10 mg. of Tofranil

(Imipramine) every night or else he just can't fall asleep. Not sure

why he sleeps better now, but I just wanted to give you hope that it

could possibly get better. I know that up until the age of 4 we

thought we were going to die from all of the sleep deprivation.

Ask your neuro if the combo of Tofranil and Melatonin could be used

for your child......

best,

Krista

>