Re: Child in crisis

[Guest guest]

Sara, I forgot to mrntion essential fatty acids or cod liver oil. Efalex

worked for my son and he started to talk in three days. R

[Guest guest]

>>Without intervention he still sleeps from

> midnight to 4am.

Here is what I did for my son until I identified what was causing his

sleep issues. Maybe something here might help you.

http://www.danasview.net/sleep.htm

> He is taking 800mg calcium, 400mg magnesium,

Try adding more magnesium.

>>1g vit C,

This would have caused major hyper for my son until about round 70 of

ALA chelation.

>>50mg B6,

Same comment as above.

>>probiotic,

Yeast can cause sleep problems. But my son never tolerated probiotics.

>>I ordered some Mb & No-Fenol. He has

> a very restricted diet & most of the foods he will eat are high in

phenols.

No-Fenol worked for my son for most high phenol foods, but not all.

So you might want to rotate thru your high phenol foods, to determine

which one/s the No-Fenol will work with.

> With this he will sleep up to 12 hours if I let him. However, he is

up all

> night and wants to sleep during the day.

For my son, this would have meant he needed his supplements [and high

phenol foods] moved to the early morning. Nothing high phenol after

about 11am.

>>The stars

> just all lined up right or something and he fell asleep at 10pm & slept

> until 10am. The next night he fell asleep at 8:45pm & was up at

midnight --

> a nap.

Even now, I always wake up my son at the same time of the morning,

every morning unless there is a special reason to let him sleep longer

[like if he is sick], and if there is a special reason, I give him an

extra 30 minutes but no longer.

No matter how much sleep my son has had during the night, I wake him

up at 7:30am, or 8am if there are special circumstances. This was

VERY helpful, especially in the beginning.

>>The sleep issues always come up before the mania,

> and I do know that sleep deprivation can cause mania by itself. So

I don't

> know if he's bipolar & that's why he stops sleeping, or if he stops

sleeping

> & the deprivation makes him appear bipolar.

For my son, phenol intolerance caused both.

Good luck.

Dana

[Guest guest]

I have tried Xango, an all natural fruit juice with mangosteen fruit.

My child had gotten to be a nonsleeper, waking up at three am for good.

I give him 2 oz morning and night, and he finally is sleeping through

the night without drugs or anything. He is becoming more sociable. He

has only been on it a few weeks, so hopefully there will be more

changes, esp. with his language. He has not had a tantrum on it

either. It might take longer with your son, but it is worth a try. If

you are interested, I can give you the email of a lady who knows all

about it and would be happy to put you in contact with the right

people. Best wishes, Kristy

On Aug 2, 2004, at 7:35 AM, The Byk Family wrote:

> has reached the manic, aggressive, self-injurious stage of

> sleep

> deprivation.  I don't know what to do.  He is dx'd with severe autism

> & is

> nonverbal.  He will be 5.

>

> He has had sleep issues at birth which worsened suddenly at age 2

> when he

> went down to 4 hours a night.  Without intervention he still sleeps

> from

> midnight to 4am.  He does not nap.  We have tried chloral hydrate,

> valium,

> adderall, clonidine, trazadone, risperdal, & probably others I'm not

> remembering right now.  They either don't work at all, or work for a

> few

> months & then stop.  That process repeats until we max out on the

> dosage.

>

> He is taking 800mg calcium, 400mg magnesium, 1g vit C, 50mg B6,

> probiotic,

> 300mcg melatonin, and epsom salt baths at bedtime.  He is almost 5 &

> weighs

> over 50lbs.  He is GFCFSF & Feingold.  I ordered some Mb & No-Fenol. 

> He has

> a very restricted diet & most of the foods he will eat are high in

> phenols.

> He has yeast & we are treating that with diet & probiotics.

>

> With this he will sleep up to 12 hours if I let him.  However, he is

> up all

> night and wants to sleep during the day.  I do not let him sleep

> during the

> day but he is still up all night.  He has had one good night in the

> last

> week and we didn't do anything different to make that happen.  The

> stars

> just all lined up right or something and he fell asleep at 10pm &

> slept

> until 10am.  The next night he fell asleep at 8:45pm & was up at

> midnight --

> a nap.

>

> I don't have a DAN-type dr here.  I'm in Columbus Ohio.  I was

> referred to a

> Dr. Pinkham but she is on vacation until Aug 10.

>

> If I call my ped I'm afraid she'll want to put him on haldol or

> something.

> She's out of ideas.  We have an appt with a neuro who specializes in

> sleep

> disorders for special needs kids but that is not until the end of

> August and

> again I'm afraid we'll just be given another script that won't work,

> or will

> stop working in a few months.

>

> I am really at a loss.  I don't want him on any more meds but we

> cannot deal

> with his mania & aggression.  I think we are on the right track with

> keeping

> him up & trying to readjust his sleep cycle so he is sleeping at

> night, and

> the supplements he is on, but this process is going to take time and

> in the

> meantime we are all...well, in crisis.

>

> I am considering that he may be bipolar but it doesn't quite seem to

> fit.  I

> don't see " down " swings.  As long as he sleeps he does well; when he

> stops

> sleeping he get manic.  The sleep issues always come up before the

> mania,

> and I do know that sleep deprivation can cause mania by itself.  So I

> don't

> know if he's bipolar & that's why he stops sleeping, or if he stops

> sleeping

> & the deprivation makes him appear bipolar.  His father has had

> clinical

> depression since childhood and his aunt is bipolar.

>

> We are to the point that I would take him to the ER, but again,

> they're just

> going to give us drugs that won't work and send us home.

>

> Any suggestions would be most appreciated.

>

> -Sara.

>

>

>

> =======================================================

>

[Guest guest]

Dear Sara,

You've gotten lots of responses - just wanted to add to the list and

reinforce a few:

1) I'm assuming that you are using B6 (50 mg is a reasonable dose)

and not the P5P version (in which case the dose might be a bit high).

2) Given the family history and his lack of speech, I would

definitely add some sort of EFA's - my boys take 2 teaspoons daily

of Nordic Naturals Cod Liver Oil which is flavored and deodorized so

it's pretty palatable.

3) I agree that you could try increasing the melatonin a bit - maybe

up to a gram - or maybe you could keep the 300mcg and give him a

second dose if he wakes up at midnight.

4)You can help shift his rhythm by loading protein in the morning

and carbs in the evening as much as possible.

Good luck,

> has reached the manic, aggressive, self-injurious stage of

sleep

> deprivation. I don't know what to do. He is dx'd with severe

autism & is

> nonverbal. He will be 5.

>

> He has had sleep issues at birth which worsened suddenly at age 2

when he

> went down to 4 hours a night. Without intervention he still

sleeps from

> midnight to 4am. He does not nap. We have tried chloral hydrate,

valium,

> adderall, clonidine, trazadone, risperdal, & probably others I'm

not

> remembering right now. They either don't work at all, or work for

a few

> months & then stop. That process repeats until we max out on the

dosage.

>

> He is taking 800mg calcium, 400mg magnesium, 1g vit C, 50mg B6,

probiotic,

> 300mcg melatonin, and epsom salt baths at bedtime. He is almost 5

& weighs

> over 50lbs. He is GFCFSF & Feingold. I ordered some Mb & No-

Fenol. He has

> a very restricted diet & most of the foods he will eat are high in

phenols.

> He has yeast & we are treating that with diet & probiotics.

>

> With this he will sleep up to 12 hours if I let him. However, he

is up all

> night and wants to sleep during the day. I do not let him sleep

during the

> day but he is still up all night. He has had one good night in

the last

> week and we didn't do anything different to make that happen. The

stars

> just all lined up right or something and he fell asleep at 10pm &

slept

> until 10am. The next night he fell asleep at 8:45pm & was up at

midnight --

> a nap.

>

> I don't have a DAN-type dr here. I'm in Columbus Ohio. I was

referred to a

> Dr. Pinkham but she is on vacation until Aug 10.

>

> If I call my ped I'm afraid she'll want to put him on haldol or

something.

> She's out of ideas. We have an appt with a neuro who specializes

in sleep

> disorders for special needs kids but that is not until the end of

August and

> again I'm afraid we'll just be given another script that won't

work, or will

> stop working in a few months.

>

> I am really at a loss. I don't want him on any more meds but we

cannot deal

> with his mania & aggression. I think we are on the right track

with keeping

> him up & trying to readjust his sleep cycle so he is sleeping at

night, and

> the supplements he is on, but this process is going to take time

and in the

> meantime we are all...well, in crisis.

>

> I am considering that he may be bipolar but it doesn't quite seem

to fit. I

> don't see " down " swings. As long as he sleeps he does well; when

he stops

> sleeping he get manic. The sleep issues always come up before the

mania,

> and I do know that sleep deprivation can cause mania by itself.

So I don't

> know if he's bipolar & that's why he stops sleeping, or if he

stops sleeping

> & the deprivation makes him appear bipolar. His father has had

clinical

> depression since childhood and his aunt is bipolar.

>

> We are to the point that I would take him to the ER, but again,

they're just

> going to give us drugs that won't work and send us home.

>

> Any suggestions would be most appreciated.

>

> -Sara.

[Guest guest]

Kristy,

I don't remember how much I gave him but I do remember that Efalex came in

a liquid format at the time so I probably just followed the directions on

the bottle.I generally go by the rule of halving the adult dose if its not

printed out for me.My son had echolalia sometime between 3-4 and I am

watching videos now to try to pinpoint when certain signs of autism were

rearing their ugly head. I just watched a video of him at 6 months and he

was already constipated and not turning over, he also had horrible oral

musclular control,short attention span,etc. He was the most beautiful baby I

have ever seen and I am so pained watching what " they " did to him.I can't

believe how much I have aged since his diagnosis.For all you parents of

young ones.......video,video,video.The film says so much as you learn more

and more about autism. Trust me the signs were all there.

R

[Guest guest]

I wonder what effect Traditional Chinese Medicine would have.

I don't particularly think it is crisis oriented, but it seems

like a different approach. I have similar thoughts about other

kinds of body work--- probably because it seems to be a type

of approach that you don't say you have already tried.

Another mom on the list who kindly wrote to me about the

usefulness of TCM for her child tells me she found a

practitioner at http://gancao.net/

You would need to find someone who is experienced working

with children. The listings here (at URL above) seem to

list specialties for some practitioners but not all.

good wishes,

Moria

> has reached the manic, aggressive, self-injurious stage of

sleep

> deprivation. I don't know what to do. He is dx'd with severe

autism & is

> nonverbal. He will be 5.

>

> He has had sleep issues at birth which worsened suddenly at age 2

when he

> went down to 4 hours a night. Without intervention he still

sleeps from

> midnight to 4am. He does not nap. We have tried chloral hydrate,

valium,

> adderall, clonidine, trazadone, risperdal, & probably others I'm

not

> remembering right now. They either don't work at all, or work for

a few

> months & then stop. That process repeats until we max out on the

dosage.

>

> He is taking 800mg calcium, 400mg magnesium, 1g vit C, 50mg B6,

probiotic,

> 300mcg melatonin, and epsom salt baths at bedtime. He is almost 5

& weighs

> over 50lbs. He is GFCFSF & Feingold. I ordered some Mb & No-

Fenol. He has

> a very restricted diet & most of the foods he will eat are high in

phenols.

> He has yeast & we are treating that with diet & probiotics.

>

> With this he will sleep up to 12 hours if I let him. However, he

is up all

> night and wants to sleep during the day. I do not let him sleep

during the

> day but he is still up all night. He has had one good night in

the last

> week and we didn't do anything different to make that happen. The

stars

> just all lined up right or something and he fell asleep at 10pm &

slept

> until 10am. The next night he fell asleep at 8:45pm & was up at

midnight --

> a nap.

>

> I don't have a DAN-type dr here. I'm in Columbus Ohio. I was

referred to a

> Dr. Pinkham but she is on vacation until Aug 10.

>

> If I call my ped I'm afraid she'll want to put him on haldol or

something.

> She's out of ideas. We have an appt with a neuro who specializes

in sleep

> disorders for special needs kids but that is not until the end of

August and

> again I'm afraid we'll just be given another script that won't

work, or will

> stop working in a few months.

>

> I am really at a loss. I don't want him on any more meds but we

cannot deal

> with his mania & aggression. I think we are on the right track

with keeping

> him up & trying to readjust his sleep cycle so he is sleeping at

night, and

> the supplements he is on, but this process is going to take time

and in the

> meantime we are all...well, in crisis.

>

> I am considering that he may be bipolar but it doesn't quite seem

to fit. I

> don't see " down " swings. As long as he sleeps he does well; when

he stops

> sleeping he get manic. The sleep issues always come up before the

mania,

> and I do know that sleep deprivation can cause mania by itself.

So I don't

> know if he's bipolar & that's why he stops sleeping, or if he

stops sleeping

> & the deprivation makes him appear bipolar. His father has had

clinical

> depression since childhood and his aunt is bipolar.

>

> We are to the point that I would take him to the ER, but again,

they're just

> going to give us drugs that won't work and send us home.

>

> Any suggestions would be most appreciated.

>

> -Sara.

[Guest guest]

The Melatonin, this would put my son to sleep and it would almost seem as if it

expires...he would wake up some hours later and then feel

rejuvinated...meanwhile it was the like 4 in the morning. He needed this to

help him settle down for sleep. I discontinued it and put him to bed earlier so

he had more time to settle down at a reasonable hour.

In a message dated 8/2/2004 8:44:28 AM Eastern Daylight Time, " pjand3kids "

<pjand3kids@...> writes:

>

>Oh honey, I feel so bad for you.  This has to be so stressful.

>

>I'm not sure I have any ideas, but I did want to mention not giving him the B6

or any vitamin to close to bedtime.  It often will cause problems with sleep.

 I'm sure this is not the reason you are having problems, but it can add to it.

 Also, how long has he been on melatonin?  I for one can not take it.  It puts

me to sleep, but wakes me up a few hours later, and at that point it becomes

impossible for me to go back to sleep.

>

>Hang in there!

>

>a

>

>-- " The Byk Family " <thebyks@...> wrote:

>

>

>We are to the point that I would take him to the ER, but again, they're just

>going to give us drugs that won't work and send us home.

>

>Any suggestions would be most appreciated.

>

>-Sara.

>

>

>

>

>=======================================================

>

[Guest guest]

50mg 0f seroquel has worked for my son since age 5. It takes a while

to knock him out but he is always tough to wake up after 8 or 9 hours

of sleep. We use benadryl or waldryl(half the cost) once in a while

to help knock him out sooner. We have now had two years of sleeping

every night after three years of virtually no sleep. Good Luck

[Guest guest]

Dear Sara,

I just wanted to mention that high phenol food s caused insomnia for both of my

ASD boys. Also citrus(orange, tomatoes,pinapple) gave the both of them acid

reflux. This would cause night waking they would jerk in their sleep. Diet

changes and supplementing with lots of magnisum and Taurine made all the

difference in the world.

Bless you and your family in this difficult time..

Aminah

-------------- Original message --------------

> Dear Sara,

> You've gotten lots of responses - just wanted to add to the list and

> reinforce a few:

> 1) I'm assuming that you are using B6 (50 mg is a reasonable dose)

> and not the P5P version (in which case the dose might be a bit high).

> 2) Given the family history and his lack of speech, I would

> definitely add some sort of EFA's - my boys take 2 teaspoons daily

> of Nordic Naturals Cod Liver Oil which is flavored and deodorized so

> it's pretty palatable.

> 3) I agree that you could try increasing the melatonin a bit - maybe

> up to a gram - or maybe you could keep the 300mcg and give him a

> second dose if he wakes up at midnight.

> 4)You can help shift his rhythm by loading protein in the morning

> and carbs in the evening as much as possible.

> Good luck,

>

>

>

>

> > has reached the manic, aggressive, self-injurious stage of

> sleep

> > deprivation. I don't know what to do. He is dx'd with severe

> autism & is

> > nonverbal. He will be 5.

> >

> > He has had sleep issues at birth which worsened suddenly at age 2

> when he

> > went down to 4 hours a night. Without intervention he still

> sleeps from

> > midnight to 4am. He does not nap. We have tried chloral hydrate,

> valium,

> > adderall, clonidine, trazadone, risperdal, & probably others I'm

> not

> > remembering right now. They either don't work at all, or work for

> a few

> > months & then stop. That process repeats until we max out on the

> dosage.

> >

> > He is taking 800mg calcium, 400mg magnesium, 1g vit C, 50mg B6,

> probiotic,

> > 300mcg melatonin, and epsom salt baths at bedtime. He is almost 5

> & weighs

> > over 50lbs. He is GFCFSF & Feingold. I ordered some Mb & No-

> Fenol. He has

> > a very restricted diet & most of the foods he will eat are high in

> phenols.

> > He has yeast & we are treating that with diet & probiotics.

> >

> > With this he will sleep up to 12 hours if I let him. However, he

> is up all

> > night and wants to sleep during the day. I do not let him sleep

> during the

> > day but he is still up all night. He has had one good night in

> the last

> > week and we didn't do anything different to make that happen. The

> stars

> > just all lined up right or something and he fell asleep at 10pm &

> slept

> > until 10am. The next night he fell asleep at 8:45pm & was up at

> midnight --

> > a nap.

> >

> > I don't have a DAN-type dr here. I'm in Columbus Ohio. I was

> referred to a

> > Dr. Pinkham but she is on vacation until Aug 10.

> >

> > If I call my ped I'm afraid she'll want to put him on haldol or

> something.

> > She's out of ideas. We have an appt with a neuro who specializes

> in sleep

> > disorders for special needs kids but that is not until the end of

> August and

> > again I'm afraid we'll just be given another script that won't

> work, or will

> > stop working in a few months.

> >

> > I am really at a loss. I don't want him on any more meds but we

> cannot deal

> > with his mania & aggression. I think we are on the right track

> with keeping

> > him up & trying to readjust his sleep cycle so he is sleeping at

> night, and

> > the supplements he is on, but this process is going to take time

> and in the

> > meantime we are all...well, in crisis.

> >

> > I am considering that he may be bipolar but it doesn't quite seem

> to fit. I

> > don't see " down " swings. As long as he sleeps he does well; when

> he stops

> > sleeping he get manic. The sleep issues always come up before the

> mania,

> > and I do know that sleep deprivation can cause mania by itself.

> So I don't

> > know if he's bipolar & that's why he stops sleeping, or if he

> stops sleeping

> > & the deprivation makes him appear bipolar. His father has had

> clinical

> > depression since childhood and his aunt is bipolar.

> >

> > We are to the point that I would take him to the ER, but again,

> they're just

> > going to give us drugs that won't work and send us home.

> >

> > Any suggestions would be most appreciated.

> >

> > -Sara.

>

>

>

>

> =======================================================

>