Re: Newbie looking for help

[Guest guest]

Dear Sara,

I can't help with the doctor in your area and I assume that you've

tried melatonin because that's pretty standard - but wanted to

mention something that may be relevant. It's becoming clear that a

lot of spectrum kids have major issues with methyl pathways being

deficient/blocked and melatonin is produced when your body

methylates serotonin so it's possible that his problem lies in that

area. There are some science papers on the ARI website/DAN section

that give some background on this.

I wouldn't mess around by yourself because I have no idea how they

would interact with risperdal, but the following supplements may

help - either alone or in combination - Methyl Cobalamin (Methyl B-

12), Trimethylglycine, Folinic Acid, Methionine and/or SAMe (S-

adenosyl methionine). I understand it can be tough getting kids to

take things, but I thought you should know this if you don't already.

Best of luck,

> Hi all,

>

> My name is Sara. I have a 4.75 year old with autism, dyspraxia,

food

> allergies, chemical sensitivities, and a severe sleep disorder.

He is off

> all dairy and all grains (not just gluten), preservatives,

artificial colors

> & flavors, etc. etc. etc. (ok at least in theory he is; we're not

100% with

> it but we do try). It's very difficult to get supplements into

him but I

> try to give him calcium, magnesium, vit C, & freshly ground flax

seed (mixed

> into peanut butter). I know there are other supplements he should

be taking

> but those are what we can do right now.

>

> He also takes nightly medication (risperdal) to help him sleep &

help

> control his aggression. Without medication averages 3

hours of

> sleep per 24, typically midnight-3am. With it he goes to sleep

around

> 9-10pm but is regukarly up at 4:30am. We'll tweak his meds &

supplements,

> get him sleeping again, it lasts a few months, and then the 4:30am

wakings

> begin. clearly NEEDS the sleep; without it we have all

kidns of

> behavioral difficulties and he stops making progress. We've done

all the

> behavioral interventions anyone's been able to think of with no

results and

> I truly believe this sleep disorder has a physiological basis.

>

> We started risperdal when he (without malice) kicked me in the

head and gave

> me a concussion during a tantrum. We felt we had no choice. I

also

> received a disabling back injury while coping with one of his

tantrums, but

> that was not directly his fault (i.e. he didn't kick me etc.); it

was

> situational. The risperdal has brought about some wonderful

changes - he

> sleeps, his language has improved, he has more coping skills, and

it doesn't

> sedate him or cause weight gain - but after two dosage increases

over the

> months, he has once again been up at 4:30am the last few nights,

and I know

> the behavioral changes due to sleep deprivation are on their way.

We've

> been through the same thing with clonidine (and we tried so many

meds before

> that I can't remember them all, but none of them worked) and I am

ready to

> get OFF this hamster wheel.

>

> I have explored chiropracty, homeopathy, and Traditional Chinese

Medicine

> with little result. Most of them have been unable to work with

him due to

> extreme sensory defensiveness. I've had excellent results with my

homeopath

> for myself and my two younger children but I just don't see it

having any

> effect on . And they never have - the teething remedies,

earache

> remedies - have never worked for him. We're on a waiting list to

do a sleep

> study but I don't see what good that's going to do beyond showing

people he

> won't sleep in an unfamiliar environment, and if they think

they're going to

> get an EEG etc. they're insane. (Or, to give them proper credit,

they've

> never met my .

>

> I need help finding a doctor who can help me get my son off

medication and

> treat the underlying issues. I don't know if mercury is the issue

or not

> but did have all his vaccines, and he reacted to every

single one of

> them. I'm pretty much willing to try anything at this point.

>

> We live in Columbus OH. Can anyone tell me if they've used a

doctor here or

> nearby that they liked? The DAN directory doesn't have anyone

close to us

> but I will call the Ohio listings & ask if they can recommend

someone local.

> It doesn't have to be a DAN doc of course but they seem to be in

sync with

> what I'm looking for. Any other suggestions on how to find

someone who can

> help us would be so very much appreciated.

>

> I hope this letter isn't seen as being too negative. My kids are

the center

> of my world; I love them more than anything. is a sweet,

brilliant,

> playful, determined, energetic, loving child. He amazes me every

day. But

> I don't need your help with those things. I hope you

understand.

>

> -Sara.

[Guest guest]

, thank you so much for your reply. I do'nt know anything about

anything you posted. Can you point me to the papers you mentioned? I have

another list where I can ask for more info about these supplements, and I

can also talk to my homeopath and his ped has some limited knowledge but

should at least be able to tell me if they're safe to give with the med, but

anything you can offer would be most appreciated. But if it's not going to

keep him sleeping I'm debating taking him off the med & seeing what happens.

That's the purpose of giving it to him after all.

Please feel free to write me privately if you prefer.

Thank you very much.

-Sara.

>>>>>

I wouldn't mess around by yourself because I have no idea how they

would interact with risperdal, but the following supplements may

help - either alone or in combination - Methyl Cobalamin (Methyl B-

12), Trimethylglycine, Folinic Acid, Methionine and/or SAMe (S-

adenosyl methionine). I understand it can be tough getting kids to

take things, but I thought you should know this if you don't already.

>>>>>

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[Guest guest]

Hi Sara,

The website is autism.com/ari/. On the left, click on Defeat Autism

Now. About the 4th Header down is the Science Papers - the ones by

Deth, and Pangborn are the most relevant although they are

pretty heavy on the chemistry. This is relatively new territory but

does tie into the mercury issue logically. Basically, the

supplements I listed are various parts of the

methionine/homocysteine cycle and are given to push the cycle along

and supply more raw material. A nutritionist should also be able to

help you with this because it also relates to heart disease.

You might want to join the chelatingkids2 group - lots of

people there are using these supplements and you could do an archive

search.

> , thank you so much for your reply. I do'nt know anything

about

> anything you posted. Can you point me to the papers you

mentioned? I have

> another list where I can ask for more info about these

supplements, and I

> can also talk to my homeopath and his ped has some limited

knowledge but

> should at least be able to tell me if they're safe to give with

the med, but

> anything you can offer would be most appreciated. But if it's not

going to

> keep him sleeping I'm debating taking him off the med & seeing

what happens.

> That's the purpose of giving it to him after all.

>

> Please feel free to write me privately if you prefer.

>

> Thank you very much.

>

> -Sara.

>

> >>>>>

> I wouldn't mess around by yourself because I have no idea how they

> would interact with risperdal, but the following supplements may

> help - either alone or in combination - Methyl Cobalamin (Methyl B-

> 12), Trimethylglycine, Folinic Acid, Methionine and/or SAMe (S-

> adenosyl methionine). I understand it can be tough getting kids to

> take things, but I thought you should know this if you don't

already.

> >>>>>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.711 / Virus Database: 467 - Release Date: 6/25/2004

[Guest guest]

> Hi all,

>

> My name is Sara. I have a 4.75 year old with autism, dyspraxia,

food

> allergies, chemical sensitivities, and a severe sleep disorder.

He is off

> all dairy and all grains (not just gluten), preservatives,

artificial colors

> & flavors, etc. etc. etc. (ok at least in theory he is; we're not

100% with

> it but we do try). It's very difficult to get supplements into

him but I

> try to give him calcium, magnesium, vit C, & freshly ground flax

seed (mixed

> into peanut butter). I know there are other supplements he should

be taking

> but those are what we can do right now.

Mixed in peanut butter sounds good. If you want to read about

things other people have tried (to get supplements down) see

here:

http://home.earthlink.net/~moriam/HOW_TO_buy_DMSA.html

(see sections toward the end)

There are a lot of different approaches (not that this makes

it easy!)

>

> He also takes nightly medication (risperdal) to help him sleep &

help

> control his aggression. Without medication averages 3

hours of

> sleep per 24, typically midnight-3am. With it he goes to sleep

around

> 9-10pm but is regukarly up at 4:30am. We'll tweak his meds &

supplements,

> get him sleeping again, it lasts a few months, and then the 4:30am

wakings

> begin. clearly NEEDS the sleep; without it we have all

kidns of

> behavioral difficulties and he stops making progress. We've done

all the

> behavioral interventions anyone's been able to think of with no

results and

> I truly believe this sleep disorder has a physiological basis.

Have you tried melatonin and/or time release melatonin?

That can be very helpful.

>

> We started risperdal when he (without malice) kicked me in the

head and gave

> me a concussion during a tantrum. We felt we had no choice. I

also

> received a disabling back injury while coping with one of his

tantrums, but

> that was not directly his fault (i.e. he didn't kick me etc.); it

was

> situational. The risperdal has brought about some wonderful

changes - he

> sleeps, his language has improved, he has more coping skills, and

it doesn't

> sedate him or cause weight gain - but after two dosage increases

over the

> months, he has once again been up at 4:30am the last few nights,

and I know

> the behavioral changes due to sleep deprivation are on their way.

We've

> been through the same thing with clonidine (and we tried so many

meds before

> that I can't remember them all, but none of them worked) and I am

ready to

> get OFF this hamster wheel.

>

> I have explored chiropracty, homeopathy, and Traditional Chinese

Medicine

> with little result. Most of them have been unable to work with

him due to

> extreme sensory defensiveness. I've had excellent results with my

homeopath

> for myself and my two younger children but I just don't see it

having any

> effect on . And they never have - the teething remedies,

earache

> remedies - have never worked for him. We're on a waiting list to

do a sleep

> study but I don't see what good that's going to do beyond showing

people he

> won't sleep in an unfamiliar environment, and if they think

they're going to

> get an EEG etc. they're insane. (Or, to give them proper credit,

they've

> never met my .

>

> I need help finding a doctor who can help me get my son off

medication and

> treat the underlying issues. I don't know if mercury is the issue

or not

> but did have all his vaccines, and he reacted to every

single one of

> them. I'm pretty much willing to try anything at this point.

Here are comments on finding a doctor, and also links to some

lists of doctors who ***might*** be helpful:

http://home.earthlink.net/~moriam/HOW_TO_find_doctor.html

>

> We live in Columbus OH. Can anyone tell me if they've used a

doctor here or

> nearby that they liked? The DAN directory doesn't have anyone

close to us

> but I will call the Ohio listings & ask if they can recommend

someone local.

that is a good idea!

> It doesn't have to be a DAN doc of course but they seem to be in

sync with

> what I'm looking for. Any other suggestions on how to find

someone who can

> help us would be so very much appreciated.

see URL above.

>

> I hope this letter isn't seen as being too negative.

It doesn't seem AT ALL negative to me! I note that you have

been persistent in trying lots of things (which is positive)

and are still trying to do more. Seems very hopeful and

dedicated and positive. I must have " missed " the negative parts!

> My kids are the center

> of my world; I love them more than anything. is a sweet,

brilliant,

> playful, determined, energetic, loving child. He amazes me every

day. But

> I don't need your help with those things. I hope you

understand.

>

good wishes,

Moria

(not a mom)