Re: Re: Sleeping or lack thereof

[Guest guest]

Yeah for Torin and his step!!

Hopefully the sleeping will get better.  I'll keep my fingers crossed

 

Spranger

www.danielspranger.com

 

Re: Sleeping or lack thereof

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]

I don't think we have tried the Klonipin yet. Getting Evan to sleep is usually

not a problem, it is j ust the staying to sleep. I nursed him for a long time

also until he was 13 months, longer than my first child who stopped wanting to

nurse at 7 months. I am going to talk with his neuro in July and see what other

meds we can try.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Subject: Re: Sleeping or lack thereof

To: polymicrogyria

Date: Friday, June 20, 2008, 1:00 AM

--

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]

that was the same with .  I could get him to sleep but he wouldnt' stay

asleep.  We have also tried the chloral hydrate, and that seems to work well at

keeping him asleep but our neuro said he doesn't like to use that regularly.  We

also tried Melatonin.

it seems for us it goes in waves..sometimes he sleeps well (only waking up to be

flipped over) and other times where he is up for hours wanting to play.  we only

do the chloral hydrate if hasn't slept well for many nights in a row.  We

basically do it to keep seizures at bay because being excessively tired seemed

to trigger seizures.  (Ok we do it a little for our sanity at that time too!)

We have also used the Klonopin and we HATED that one, but it wasn't prescribed

for his sleeplessness, but for seizure control. It made h im a complete noodle,

that one was horrible for .  But I have heard it works well for others. 

Perhaps was just overly sensitve to it.

Hope this helps.

 

Spranger

www.danielspranger.com

 

Re: Sleeping or lack thereof

To: polymicrogyria@ yahoogroups. com

Date: Friday, June 20, 2008, 1:00 AM

--

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]

Having that type of sleep study done is on my list to talk to the neuro about

and also doing a PH probe to see if reflux is the culprit also. Just have to go

down the list since he can't tell me what is wrong, it is even hard to get him

to point to pain, he will point to an " owie " that he already has such as a

scrape. We see a new neuro on 7-17-08, I am excited for a new perspective.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Subject: Re: Sleeping or lack thereof

To: polymicrogyria

Date: Saturday, June 21, 2008, 6:04 PM

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]

Definitley something to look into. Thanks

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Subject: Re: Sleeping or lack thereof

To: polymicrogyria

Date: Wednesday, June 25, 2008, 8:19 PM

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 Grandma Carol,

I would be more than happy to share his new time table, although I think

everyone is so individual that you probably need to seek someone out that can

specificially help Torin.

I initally spent probably 2-3 hours going over 's medical

history/birth/current sleeping habits, etc with this lady. From the information

I gave her she came up with a summary of waking/nap/bedtime hours.

So, for I wake him at 8a(no later) if he wakes prior to this, and after

6:30a I get him up. Apparently, the morning wake up dictates the rest of the

day??

Naps are a total of 3 hours during the day...They recommend 2.5-3 hours after

waking in the morning that he goes down for a nap, whether he appears tired or

not. Same thing in the afternoon...(That was the first thing I started and it

worked like a charm)

Evening time: no cat naps 3 hours before bedtime!

Bed time is 8:40p at the earliest and as late as 9-9:30p

This is the tricky part, if he wakes up for a feeding. Feed him, place back in

the crib and in my case pat his butt until he falls to sleep. Also, keeping the

lights off and very minimal interaction. i.e. no diaper change (unless

necessary), playing, etc...  

Usually this does not work, but the last 3 nights he seems to be going along

with the program. The biggest thing at night is consistency with routine.  

Anyway, I don't know if this helps you or not? I might have some

information that she gave me for older children that I can try and scan and send

over.

sincerely,

   

  

Re: Sleeping or lack thereof

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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86249 & pa

rtner=spamblockerut ility> Upgrade Your Email - Click here!

[Guest guest]

Dear ,

I am afraid a lot of us have the same problem.

When Finlay was a little baby he was OK for a few weeks, but then started

waking up in hysterics. This period lasted nearly 2 years. By then I had

lost my job, because I was too tired to think straight and I had to stay at

home each time he was ill (which was a lot!!).

Gradually the hysterics subsided and now we only have to get up to help him

turn over in his bed. A good night means once or twice, a bad night (when he

is a bit unwell) 6 to 9 times.

We have tried everything under the sun, but the doctors here will not

prescribe chloral hydrate, so we do not know if that would help.

Finlay will be 7 years old this month and no one has found the answer to his

sleeping problems. The 24-hour EEG showed epileptic activity throughout the

day and night with some spikes at night. No seizures noted and the spikes

did not correspond with the times he woke up..

I believe it actually is a PMG or CP problem. None of my friends with PMG or

CP children have managed to get good nights with medication although we all

keep trying! ;-)

Have courage, keep looking and if you find a solution, please let us know.

Annelies (mum to Finlay 7, Bilateral Fronto-Parietal PMG, Gregor 10 & Rowan

2)

Re: Sleeping or lack thereof

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]

I also think it is a pmg problem, my daughter has often not slept at all for 48

hours, and lies there in bed grinning ear to ear. We have thought possibly that

the " highness " is a type of seizure

Dom, father to Chloe, aged 6 (7 in July) diffuse bilateral pmg, G tube,

rotational osteotomy ops on each hip, epilepsy, cannot sit, walk, talk etc,

however a happy smiley (most of the time) little girl

Re: Sleeping or lack thereof

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]

Your situation sounds so much like mine. My husband works nights so he cannot

really help so I can get some sleep at night. I have no idea what to do short of

putting him on something like ambien or chlorhydrate. I just hate giving him

medication.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Subject: Re: Sleeping or lack thereof

To: polymicrogyria

Date: Monday, June 30, 2008, 9:36 PM

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]

LOL I hear ya all about the sleep.

And guess whose sitting awake at midnight?!!??

Yep you guessed it..my little guy!

- how was vacation?

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of ich

Sent: Saturday, July 05, 2008 11:57 PM

To: polymicrogyria

Subject: Re: Re: Sleeping or lack thereof

Your situation sounds so much like mine. My husband works nights so he

cannot really help so I can get some sleep at night. I have no idea what to

do short of putting him on something like ambien or chlorhydrate. I just

hate giving him medication.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and

SM to 16yrs

www.justinichfamily.blogspot.com

From: laurafreeman05 <laurafreeman05@ <mailto:laurafreeman05%40yahoo.com>

yahoo.com>

Subject: Re: Sleeping or lack thereof

To: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com>

yahoogroups.com

Date: Monday, June 30, 2008, 9:36 PM

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

>

>

>

>

>