Help!

[Guest guest]

Here ya go Susi!

http://www.geocities.com/taebofans/

[Guest guest]

In a message dated 09/19/2000 9:06:04 PM Eastern Daylight Time,

Susiational@... writes:

> Could somebody please post the web address to AmyN's website for me?

> I thought I had it in my favorite places, and I don't. =((

here's both of them

<A HREF= " http://www.geocities.com/taebofans/ " >new Tae Bo Fan's Page</A>

<A HREF= " http://www.geocities.com/amy_newcomb_100 " >Tae Bo Fan's Page</A>

[Guest guest]

Sue,

Have you had her thyroid checked. You can do a preliminary iodine

patch test at home. Just paint a quarter sized circle of iodine

tincture (from any drug store) on the inside of her upper arm or on

her abdomen or inner thigh and see how long it takes to disappear.

She could very well be hypothyroid, as many ASD individuals are.

That might partially explain the inactivity and sluggish metabolism.

> I am at my wits end. Does anyone have ANY idea how to help my 17 year

> old lose weight? Non verbal, and non moving she has gotten up to 230

> pounds. She doesn't over eat terribly, but when she wants to eat

> denial results in....well you know what it results in extreme

> behaviors. She is very difficult to move, walking around the block is

> great...slow and all until she decides half way through she doesn't

> want to do it anymore and then wham...she flips out.I am so tired I

> know this is seriously impacting her health, but her metabolism is so

> slow - any ideas ?

>

> Sue

>

>

>

>

>

[Guest guest]

Has she had her thyroid, lipids, blood sugar, and all that checked? Is she on

any meds,

some of those screw with metabolism (Depakote has been implicated in polycystic

ovarian

syndrome with all that comes with it, and the atypical antipsychotics have been

shown to

cause prediabetes, especially Zyprexa and Seroquel).

Then of course theres making exercise routine. And just not having the really

gorged on

food around. Easier said than done I know. But she might enjoy swimming, if she

doesnt

like walking. Maybe walking hurts. Maybe she likes jumping. Or swinging (yep its

exercise

as long as she self pushes). Who cares what other people think, right? Yay for

choices and

all.

Kassiane

who has the opposite problem of not being able to keep weight ON

> I am at my wits end. Does anyone have ANY idea how to help my 17 year

> old lose weight? Non verbal, and non moving she has gotten up to 230

> pounds. She doesn't over eat terribly, but when she wants to eat

> denial results in....well you know what it results in extreme

> behaviors. She is very difficult to move, walking around the block is

> great...slow and all until she decides half way through she doesn't

> want to do it anymore and then wham...she flips out.I am so tired I

> know this is seriously impacting her health, but her metabolism is so

> slow - any ideas ?

>

> Sue

[Guest guest]

, how does this work again? I've never heard of this. I have hypo and

then hyperthyroid levels that change constantly. Endo is constantly putting

me on and off Synthroid. I feel like hell most of the time because of this.

Curious what this little iodine test is. How fast should it evaporate?

Diane ('s Mom)

Re: Help!

Sue,

Have you had her thyroid checked. You can do a preliminary iodine

patch test at home. Just paint a quarter sized circle of iodine

tincture (from any drug store) on the inside of her upper arm or on

her abdomen or inner thigh and see how long it takes to disappear.

She could very well be hypothyroid, as many ASD individuals are.

That might partially explain the inactivity and sluggish metabolism.

> I am at my wits end. Does anyone have ANY idea how to help my 17 year

> old lose weight? Non verbal, and non moving she has gotten up to 230

> pounds. She doesn't over eat terribly, but when she wants to eat

> denial results in....well you know what it results in extreme

> behaviors. She is very difficult to move, walking around the block is

> great...slow and all until she decides half way through she doesn't

> want to do it anymore and then wham...she flips out.I am so tired I

> know this is seriously impacting her health, but her metabolism is so

> slow - any ideas ?

>

> Sue

>

>

>

>

>

[Guest guest]

This may be one of the most overlooked problems among families with kids on

the Spectrum. As far as your DD, I suspect that as she gets around the

block, she just doesn't have the mitochondrial or adrenal energy to keep

going.Your daughter's temp is probably low, too.

Check out www.canaryclub.com <http://www.canaryclub.com> get her Free T3,

Free T4, TPO (Thyroid Peroxidase Antibodies), and TGA (Thryoglobulin

Antibodies) checked. While you're at it get a 4 times in one day saliva

cortisol test (Adrenal Stress Index or ASI test), too.

It took me a long time (almost a year) to get my 11 DD (now 12y/o) to take

her temperature with a digital basal body temp thermometer. Her dad (dad's

are so adored by middle school daughters, LOL) finally made charts on graph

paper and they both take their temps and write them down. You can go to

www.drrind.com <http://www.drrind.com> and look at the temp charts and how

to interpret them.

Then there are some lists where those of us who treat ourselves AND our

children get, and share, information. You can also get excellent information

on a number of other lists/sites about the connection between low iodine,

low selenium, low thyroid, low adrenal function, and autism. There many

overlapping factors and we are very fortunate to have the internet to

network

to find ideas and anwers for us and our kids.

Sorry this is such a quick, jumpy, email. Both of my folks have been in the

hospital this week. I'm really glad that DD, DH and I are on thyroid and

adrenal support as we would not be able to cope well with all the extra

demands of two homes and homeschooling.

If you can believe it, DD who has NLD/Asperger's has actually been a

gracious helper/ " nurse " this week. Quite an improvement from regular

meltdowns. She and I were talking today about how sensory stuff regularly

plays out and gets mistaken for bad behaviour.

We are in California, and we homeschool. If I can help, please let me know.

HTH,

....

>

> I am at my wits end. Does anyone have ANY idea how to help my 17 year

> old lose weight? Non verbal, and non moving she has gotten up to 230

> pounds. She doesn't over eat terribly, but when she wants to eat

> denial results in....well you know what it results in extreme

> behaviors. She is very difficult to move, walking around the block is

> great...slow and all until she decides half way through she doesn't

> want to do it anymore and then wham...she flips out.I am so tired I

> know this is seriously impacting her health, but her metabolism is so

> slow - any ideas ?

>

> Sue

>

>

>

[Guest guest]

I be to have been to have biomeridian testing done in past that

shows me high/toxic in mercury, selinium and zinc and much into

yeast. I to be almost a too active person in many ways and wondered

if the low selinium is found in hypothyroid does it play opposite

effect in high level or toxic of selinium creating hyperthyroid. I

to know when my doctor test my thyroid appears fine. the mercury is

felt to be bound in my kidneys and bladder so how can one rid of

them in those organs and what damage is associated with this. And

when a body is toxic of things such as zinc how do you fix the level

to make it normal.

Sondra

In Autism_in_Girls , Mateosian

<cjoibm@g...> wrote:

> This may be one of the most overlooked problems among families

with kids on

> the Spectrum. As far as your DD, I suspect that as she gets around

the

> block, she just doesn't have the mitochondrial or adrenal energy

to keep

> going.Your daughter's temp is probably low, too.

> Check out www.canaryclub.com <http://www.canaryclub.com> get her

Free T3,

> Free T4, TPO (Thyroid Peroxidase Antibodies), and TGA

(Thryoglobulin

> Antibodies) checked. While you're at it get a 4 times in one day

saliva

> cortisol test (Adrenal Stress Index or ASI test), too.

> It took me a long time (almost a year) to get my 11 DD (now

12y/o) to take

> her temperature with a digital basal body temp thermometer. Her

dad (dad's

> are so adored by middle school daughters, LOL) finally made charts

on graph

> paper and they both take their temps and write them down. You can

go to

> www.drrind.com <http://www.drrind.com> and look at the temp charts

and how

> to interpret them.

> Then there are some lists where those of us who treat ourselves

AND our

> children get, and share, information. You can also get excellent

information

> on a number of other lists/sites about the connection between low

iodine,

> low selenium, low thyroid, low adrenal function, and autism. There

many

> overlapping factors and we are very fortunate to have the internet

to

> network

> to find ideas and anwers for us and our kids.

> Sorry this is such a quick, jumpy, email. Both of my folks have

been in the

> hospital this week. I'm really glad that DD, DH and I are on

thyroid and

> adrenal support as we would not be able to cope well with all the

extra

> demands of two homes and homeschooling.

> If you can believe it, DD who has NLD/Asperger's has actually

been a

> gracious helper/ " nurse " this week. Quite an improvement from

regular

> meltdowns. She and I were talking today about how sensory stuff

regularly

> plays out and gets mistaken for bad behaviour.

> We are in California, and we homeschool. If I can help, please

let me know.

> HTH,

> ...

>

> >

> > I am at my wits end. Does anyone have ANY idea how to help my 17

year

> > old lose weight? Non verbal, and non moving she has gotten up to

230

> > pounds. She doesn't over eat terribly, but when she wants to eat

> > denial results in....well you know what it results in extreme

> > behaviors. She is very difficult to move, walking around the

block is

> > great...slow and all until she decides half way through she

doesn't

> > want to do it anymore and then wham...she flips out.I am so

tired I

> > know this is seriously impacting her health, but her metabolism

is so

> > slow - any ideas ?

> >

> > Sue

> >

> >

> >

>

>

>

[Guest guest]

Donna! How are you? Long time no see, I was thinking about you the other

day. Hope all is well, nice to see you post.

Pennie

Abby's Mom

[Guest guest]

I take synthyroid and have been taking it since I was dxed at age

3ish because I wasn't growing in length but in width. Today, I am

5'6 and weigh in the 130's and have maintained this weight the last

2-3 decades.

When I skip or forget to take the med during busy times of the years

like Christmas or summer, I get tired and sleepy mostly and not

motivated and don't really go on food binges.

I have blood drawn twice a year to check thyroid levels which do

fluctuate but have never once stopped taking synthyroid all together

under a doctors care. Having blood drawn and tested is the most

effective way of treating hypothyroid and of course taking and not

forgetting to take my medicine.

Hypothryroid doesn't go away and is for life so the synthyroid

medication is for life.

Hope everyone is doing well. My is up now and watching TV so

I am reading some forums I belong to. I haven't really been keeping

up with any of the lists I belong to regularly in a long time.

is doing pretty good and is going to be 9 on New Year's Eve.

Take Care All...

Donna

>

> > I am at my wits end. Does anyone have ANY idea how to help my 17

year

> > old lose weight? Non verbal, and non moving she has gotten up to

230

> > pounds. She doesn't over eat terribly, but when she wants to eat

> > denial results in....well you know what it results in extreme

> > behaviors. She is very difficult to move, walking around the

block is

> > great...slow and all until she decides half way through she

doesn't

> > want to do it anymore and then wham...she flips out.I am so

tired I

> > know this is seriously impacting her health, but her metabolism

is so

> > slow - any ideas ?

> >

> > Sue

> >

> >

> >

> >

> >

[Guest guest]

I would agree with Kass!!!!! = ) Exercise in whatever form it takes

is always a good thing.

How's Montana?

Why aren't you online now for an IM??? Pam is in Vegas!!!!

Donna

> > I am at my wits end. Does anyone have ANY idea how to help my 17

year

> > old lose weight? Non verbal, and non moving she has gotten up to

230

> > pounds. She doesn't over eat terribly, but when she wants to eat

> > denial results in....well you know what it results in extreme

> > behaviors. She is very difficult to move, walking around the

block is

> > great...slow and all until she decides half way through she

doesn't

> > want to do it anymore and then wham...she flips out.I am so

tired I

> > know this is seriously impacting her health, but her metabolism

is so

> > slow - any ideas ?

> >

> > Sue

[Guest guest]

Hi! Sondra-

Usually when doctors say thyroid is " normal " they mean that they tested the

Thyroid Stimulating Hormone (TSH) which is produced by the pituitary gland.

Most all doctors are ignorant to the fact that the Free T3, Free T4, TPO and

TGA tests give a better idea of actual thyroid function and the body's

ability to use thyroid hormones on the cellular level.

Those same medical morons usually prescribe synthetic T4 only rather than

Natural Thyroid Hormone such as Armour Thyroid.

You ask very good questions about how to get rid of toxins such as mercury.

The best Yahoo lists -IMO- are Autism-Mercury and Frequent Dose Chelation.

Andy Cutler, PhD., has written two books, the first one is Amalgam Illness,

and the second, if I recall in my semi-dream-state, is Hair Test

Interpretation. His protocols are the safest.

If you have amalgam anywhere in your mouth, you must not chelate until 3

months after a safe removal protocol to remove all amalgam and root canals

that contain cadmium.

Back to sleep, now...

HTH,

....

>

> I be to have been to have biomeridian testing done in past that

> shows me high/toxic in mercury, selinium and zinc and much into

> yeast. I to be almost a too active person in many ways and wondered

> if the low selinium is found in hypothyroid does it play opposite

> effect in high level or toxic of selinium creating hyperthyroid. I

> to know when my doctor test my thyroid appears fine. the mercury is

> felt to be bound in my kidneys and bladder so how can one rid of

> them in those organs and what damage is associated with this. And

> when a body is toxic of things such as zinc how do you fix the level

> to make it normal.

> Sondra

>

> In Autism_in_Girls , Mateosian

> <cjoibm@g...> wrote:

> > This may be one of the most overlooked problems among families

> with kids on

> > the Spectrum. As far as your DD, I suspect that as she gets around

> the

> > block, she just doesn't have the mitochondrial or adrenal energy

> to keep

> > going.Your daughter's temp is probably low, too.

> > Check out www.canaryclub.com <http://www.canaryclub.com> <

> http://www.canaryclub.com> get her

> Free T3,

> > Free T4, TPO (Thyroid Peroxidase Antibodies), and TGA

> (Thryoglobulin

> > Antibodies) checked. While you're at it get a 4 times in one day

> saliva

> > cortisol test (Adrenal Stress Index or ASI test), too.

> > It took me a long time (almost a year) to get my 11 DD (now

> 12y/o) to take

> > her temperature with a digital basal body temp thermometer. Her

> dad (dad's

> > are so adored by middle school daughters, LOL) finally made charts

> on graph

> > paper and they both take their temps and write them down. You can

> go to

> > www.drrind.com <http://www.drrind.com> <http://www.drrind.com> and look

> at the temp charts

> and how

> > to interpret them.

> > Then there are some lists where those of us who treat ourselves

> AND our

> > children get, and share, information. You can also get excellent

> information

> > on a number of other lists/sites about the connection between low

> iodine,

> > low selenium, low thyroid, low adrenal function, and autism. There

> many

> > overlapping factors and we are very fortunate to have the internet

> to

> > network

> > to find ideas and anwers for us and our kids.

> > Sorry this is such a quick, jumpy, email. Both of my folks have

> been in the

> > hospital this week. I'm really glad that DD, DH and I are on

> thyroid and

> > adrenal support as we would not be able to cope well with all the

> extra

> > demands of two homes and homeschooling.

> > If you can believe it, DD who has NLD/Asperger's has actually

> been a

> > gracious helper/ " nurse " this week. Quite an improvement from

> regular

> > meltdowns. She and I were talking today about how sensory stuff

> regularly

> > plays out and gets mistaken for bad behaviour.

> > We are in California, and we homeschool. If I can help, please

> let me know.

> > HTH,

> > ...

> >

> > >

> > > I am at my wits end. Does anyone have ANY idea how to help my 17

> year

> > > old lose weight? Non verbal, and non moving she has gotten up to

> 230

> > > pounds. She doesn't over eat terribly, but when she wants to eat

> > > denial results in....well you know what it results in extreme

> > > behaviors. She is very difficult to move, walking around the

> block is

> > > great...slow and all until she decides half way through she

> doesn't

> > > want to do it anymore and then wham...she flips out.I am so

> tired I

> > > know this is seriously impacting her health, but her metabolism

> is so

> > > slow - any ideas ?

> > >

> > > Sue

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

> I would agree with Kass!!!!! = ) Exercise in whatever form it takes

> is always a good thing.

>

> How's Montana?

>

> Why aren't you online now for an IM??? Pam is in Vegas!!!!

>

> Donna

>

Montana's good, still sick. Thats why Im not online.

And I miss my exercise. Waaaaaaah. Therefore everyone else must exercise for me

*nods*

TinyKassi

[Guest guest]

Hi Staci,

I'm sorry you are going through all this right now.

In my opinion, if your child is exhibiting these kinds of severe type behaviors

,I personally would try another SSRI. I'm sure the doctor would agree. Everyone

has different affects form all the SSRI'S. They are all different.

What is she raging over? Do you know?

Keep us posted

Hugs

judy

________________________________

To:

Sent: Saturday, April 25, 2009 4:00:46 AM

Subject: Help!

Any advice? What would you do?

My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/ high-pitch/ top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

She was diagnosed in Oct., went on Lexapro with ERP therapy right away. Lexapro

took the anxiety edge off at first allowing her to learn ERP, but then kinda

stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5 ft.

tall) and started losing lots of hair. It didn't seem to be helping the OCD and

only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed down

some. I hear that can take 4 months to come back??

So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But we

can't live like this anymore. It feels like torture for her and for us and it's

making me physically ill as well.

Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately? ? Or do I let her suffer longer to see if the Inositol will

work?

I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

When is the suffering just too much?

We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

By the way, we ran out of $ (self-employed/ straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes =).

Thanks from currently a very weary Mom,

staci

[Guest guest]

Hi Staci,

When you stopped giving her the Lexapro, did you taper it down slowly?

There is a pretty good chance, in my experience, that her raging could be caused

by Lexapro withdrawal.

My non-OCD daughter took Lexapro for a while and if we forgot to give it to her,

she was so angry, it was scary. When we tapered her off, on the advice of her

psychiatrist, we decreased the dose by 5 mg at a time, starting from 20 mg, and

waited 2 months or more, depending on how she was acting. When we got down to

the last 5 mg, we went even slower. Her withdrawal was pretty smooth this way

but we would always see an increase in her anger the first few weeks or month

after dropping her dose.

My daughter didn't have any side effects to the Lexapro. We just thought she

didn't need it any more, so we were able to go slowly. My OCD daughter's

psychiatrist starts and stops meds much more quickly (3 days at a time) but I am

not sure that is the way to go.

Since the natural supplements take longer to work, even when they are effective,

it might be that she needs some Lexapro or another SSRI, at least for right now.

I have seen Prozac mentioned as an SSRI to take when weaning off another one

because it has a long half life and has some effect for a long time.

Supposedly, it is one that is easy to discontinue.

If you haven't already done it, do a search on Lexapro withdrawal and see what

you think.

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

>

> She was diagnosed in Oct., went on Lexapro with ERP therapy right away.

Lexapro took the anxiety edge off at first allowing her to learn ERP, but then

kinda stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5

ft. tall) and started losing lots of hair. It didn't seem to be helping the OCD

and only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed

down some. I hear that can take 4 months to come back??

>

> So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But

we can't live like this anymore. It feels like torture for her and for us and

it's making me physically ill as well.

>

> Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately?? Or do I let her suffer longer to see if the Inositol will

work?

>

> I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

>

> When is the suffering just too much?

>

> We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

>

> Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

>

> By the way, we ran out of $ (self-employed/straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

>

> Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes

=).

>

> Thanks from currently a very weary Mom,

> staci

>

[Guest guest]

Staci-

I understand what you are going through. I also have a sweat beautiful and kind

dd who has had rages at times. I know the suffering that they go through and

the suffering that the other family members feel. I am so sorry you are going

through this. I also understand the financial hardship that this can be. Our

family has a $6000 deductible and my daughters meds cost me $500 a month out of

pocket. (not including other dr appt and counseling) I strongly encourage you to

seek help from a medical professional. I believe at this time it would be a

good idea to try another medication. Medication can take some time to get it

right but your daughter should not have to suffer. My heart just aches for

these kids...they should not have to deal with such a big thing at such a young

age.

If there is anything I can help you with, let me know

All shall be well

Robin

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

>

> She was diagnosed in Oct., went on Lexapro with ERP therapy right away.

Lexapro took the anxiety edge off at first allowing her to learn ERP, but then

kinda stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5

ft. tall) and started losing lots of hair. It didn't seem to be helping the OCD

and only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed

down some. I hear that can take 4 months to come back??

>

> So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But

we can't live like this anymore. It feels like torture for her and for us and

it's making me physically ill as well.

>

> Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately?? Or do I let her suffer longer to see if the Inositol will

work?

>

> I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

>

> When is the suffering just too much?

>

> We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

>

> Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

>

> By the way, we ran out of $ (self-employed/straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

>

> Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes

=).

>

> Thanks from currently a very weary Mom,

> staci

>

[Guest guest]

Hi Staci, so she went off Lexapro and then started inositol. And started the

Native Remedy products at same time.

My first thought is to back down on the inositol and see if that helps. Maybe

cut it down to 6 or 7 grams first for 3 days, then stop it. Or you could just

stop it at once but I'm one who hates to just suddenly stop things they've been

getting daily.

MindSoothe has St 's Wort in it, so am wondering if the 2 together (inositol

and SJW) might be too much, which is why I'd try stopping one or reducing the

inositol and see if that helps. I couldn't tell from the product info how much

SJW she's getting each day, but both work on serotonin (probably in different

ways) so I would try stopping one.

Or it could just be that inositol alone aggravates her in some way. Never know

how a person will react to things. I remember the first time we tried 5HTP on

, he was already on inositol and doing better but when I added the 5HTP -

which I'd read can make people sleepy - was so " wired " he couldn't

sleep, like he had insomnia or something. So I quit that after about 3 days.

So - I would pick one supplement to withdraw and see if a change. Then pick a

2nd to stop if no change after 3 days or something. Just sounds like she may be

reacting to a particular one or the combination of some, could be that 2

supplements together is too high a " dose " for her, etc.

So sorry she (and family) is going thru this. And throw in teenage/pre-teen

hormones, it can add to emotional stuff!

Keep us updated!!!!

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is

[Guest guest]

It may be the SSRI - I would call the pdoc ASAP.

Bonnie

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

>

> She was diagnosed in Oct., went on Lexapro with ERP therapy right away.

Lexapro took the anxiety edge off at first allowing her to learn ERP, but then

kinda stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5

ft. tall) and started losing lots of hair. It didn't seem to be helping the OCD

and only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed

down some. I hear that can take 4 months to come back??

>

> So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But

we can't live like this anymore. It feels like torture for her and for us and

it's making me physically ill as well.

>

> Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately?? Or do I let her suffer longer to see if the Inositol will

work?

>

> I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

>

> When is the suffering just too much?

>

> We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

>

> Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

>

> By the way, we ran out of $ (self-employed/straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

>

> Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes

=).

>

> Thanks from currently a very weary Mom,

> staci

>

[Guest guest]

((((((((Staci))))))))))

Love, prayers, and hugs,

BJ

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

>

> She was diagnosed in Oct., went on Lexapro with ERP therapy right away.

Lexapro took the anxiety edge off at first allowing her to learn ERP, but then

kinda stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5

ft. tall) and started losing lots of hair. It didn't seem to be helping the OCD

and only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed

down some. I hear that can take 4 months to come back??

>

> So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But

we can't live like this anymore. It feels like torture for her and for us and

it's making me physically ill as well.

>

> Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately?? Or do I let her suffer longer to see if the Inositol will

work?

>

> I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

>

> When is the suffering just too much?

>

> We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

>

> Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

>

> By the way, we ran out of $ (self-employed/straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

>

> Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes

=).

>

> Thanks from currently a very weary Mom,

> staci

>

[Guest guest]

Hi ,

I'm so sorry that you're having a hard time. When I read your post, I thought

I remembered other mom's saying that fish oil made some kids feel that way. I'll

keep hunting for that info. My daughter is VERY sensitive to drugs and we found

that Inositol is the only thing that has helped, but not till we got to 18

grams. She is 17 and 5'6 " . The data I read at the national Institute of health's

" Pub Med " says it was ineffective at a lower dose. It also said there have been

no reports of side effects, so I'm not sure that's the problem. Also she takes

3-4 St 's Wort a day, and just those two things. No problems

I'm thinking back and the combos of herbs bothered her a lot, also the doctor

said to add BI for anxiety and sub lingual B12, I've read B6 helps too. I know

many people who have cured lots of big time illness with vitamins. One woman

Bonnie Grimaldi cured her son's Tourette's. Her medical research found it is

related to low B6 levels.

Have you had her hormones checked? Thyroid or cortisol levels being way too low

can cause very high out of control emotions. We need to find doctors who think

outside the box though, one who wants to cure not just stop symptoms. They are

very hard to find, but thinking inside the box just isn't working. Here is a

link to doctors who use a more precise saliva test for hormone levels.

http://www.diagnostechs.com/main.htm We found that our " regular " doctor would

do a plain TSH blood test saying she was normal, but the normal range is huge.

She was at the very lowest allowed amount, and that test doesn't begin to tell

if your thyroid is off./My daughter was close to zero for her FREE T4. Here is a

list of the exact lab tests you need, DON " T let the doctor vary!!! They will

try! http://www.stopthethyroidmadness.com/recommended-labwork/ If your thyroid

is off you can't function and usually what throws off the thyroid is cortisol

levels being either too high or too low. The standard thyroid test, does not

tell the whole picture. Often it doesn't show Hashimoto's ( a big thyroid

problem) Or tell many other things. One good indicator is if she has a low body

temperature. Below 98.6, does it fluctuate? Is she loosing hair? Is she pale? Al

are symptoms of messed up hormones. There is a site called Stop the Thyroid

madness http://www.stopthethyroidmadness.com by a quite vocal woman who went

from doctor to doctor with all saying her levels were normal when they didn't

know how to read them. Very good reading there. Here are the tests we have back

so far, my daughters levels and the " normal ranges "

serotonin S 137

TSH 0.55 reference range 0.30-4.80

Dehydroepiandrosterone, S 4.9 reference range 0.0-6.5

TSH W REFLEX FT4 0.80 reference range 0.30-4.80

Cortisol AM 6.4 reference range 5.0-25.00

Free T4 0.6 reference range 0.6-1.6

Glucose 88 reference range 70-110

You can see the standard TSH says in normal range, but the range is huge and

she's on the very low side of normal. Same with TSH W REFLEX FT$ 4 and the

cortisol, although cortisol varies through the day being highest in the AM, this

was the AM, But the FREE T4 is the one really telling. These test results so far

indicate someone with a problem! As soon as I get the rest of the results back,

I'll post them.

Here's a good example of doctors not knowing but relying on labs to tell them

what was normal. I had 4 miscarriages (a sign of low cortisol btw) when I asked

for my progesterone to be tested it came back normal. When I went to the high

risk pregnancy doc he said Whoa, low progesterone. It was normal for an

un-pregnant woman on day 6 of her cycle, not for a pregnant woman. He gave me

progesterone and I have a son now. I learned then, if the doctor is not helping

in a timely manner, it's time to find a new doctor. Most standard ones don't

begin to know. Try digging deep in the hormones, with one of the doctors on that

link. I think it will really help.

Also at Stop the thyroid madness site, there are tests you can order yourself,

without a doctor... Good luck

We are waiting for the saliva tests to come in for my daughter, should be in a

week, but her labs (The right labs!) told she's very hypothyroid, with low

cortisol from a blood cortisol test. No wonder she's having such a hard time.

Sorry so long..............

>

> Any advice? What would you do?

>

> My usually incredibly sweet 12yo OCD dd is raging uncontrollably almost every

day 2-4 hrs. long (blood-curdling/high-pitch/top-of-lungs screaming while

throwing things, trying to rip towel bars off the wall, knock the t.v. out of

the armoire etc. It's ripping our family apart and she is suffering immensely.

She currently is titering up with Inositol and Native Remedy products (about 20

days so far). She is at 12-14 grams of Inositol, MindSoothe, PureCalm, Nerve

Tonic & Coromega Fish Oil daily. It seems to help at times and then " it " hits.

It's like she's Dr. Jekyl/Mr. Hyde.

>

> She was diagnosed in Oct., went on Lexapro with ERP therapy right away.

Lexapro took the anxiety edge off at first allowing her to learn ERP, but then

kinda stopped working and she lost 15 pounds (from 90 to 75lbs. and she's over 5

ft. tall) and started losing lots of hair. It didn't seem to be helping the OCD

and only taking the edge of anxiety (no rages before or while on Lexapro) and we

decided her severe side effects weren't worth it. By the way, she is gaining

weight back since off the Lexapro. She's still losing hair, but it's slowed

down some. I hear that can take 4 months to come back??

>

> So 30 days ago she was off Lexapro and 20 days ago she started Inositol. But

we can't live like this anymore. It feels like torture for her and for us and

it's making me physically ill as well.

>

> Is this a sign that I should just chuck the natural route and put her on a new

SSRI immediately?? Or do I let her suffer longer to see if the Inositol will

work?

>

> I'm so exhausted and overwhelmed right now that I can't even think and need

any/all advice I can get.

>

> When is the suffering just too much?

>

> We tried Lexapro first because it's supposed to be the new one with the least

amount of side effects and she's sensitive. So wouldn't other SSRI's be worse?

>

> Also, if Zoloft is also known for hair thinning/loss, should I stay away from

that one?

>

> By the way, we ran out of $ (self-employed/straight commission and have a very

high deductible PPO through Anthem - so basically we pay cash for everything.)

and cannot afford the ERP therapy right now (she ended in February). We also

can't afford the regular $145/hr. rate for the Psych. Doc, but we would have to

come up with it to get another SSRI.

>

> Sorry this is so long. If anyone has any words of wisdom, I'm all ears (eyes

=).

>

> Thanks from currently a very weary Mom,

> staci

>

[Guest guest]

Staci:

I SO relate to your experience with the rages and sensory issues.  My son is 13

now, and we've been going through this for over a decade.  One thing that

helped him with the sensory issues was physical therapy.  We learned the

brushing technique, joint compression, and many techniques to help when he was

either too wired or too sluggish, including different foods to eat that would

help adjust his sensory levels.  PT services should be available from the

school district (I realize the school year is almost out) since you are having

insurance issues.  If your daughter already has an IEP, you may be able to get

these services before the year is out, but if not, if you go about requesting

them now, you may have them in place for next fall.  We paid out of pocket to

do this work at a hospital PT during the summer, and it ended up  costing over

$400, but in the end was well worth it.  His sensory issues faded within 6

months or so.  He is now a 13 yr old boy who can put on a whole ice hockey

uniform without troubles!  My non OCD son had sensory issues as well (age 10

now), and never got PT. Though his issues have faded in intensity over time, he

still experiences problems with tags, socks, shoes and blankets not feeling

right.

The raging and property destruction issue is more current for my son.  He takes

generic Celexa 50 mg per day (only $10 for a prescription without insurance).

 We have had to add Abilify as

well (only 2 mg a day) due to the rages.  We attemped to take him off of it at

christmas time, and the rages were right back full force daily - broken glass,

shattered bowls, a cut couch - you name it. He screams things like " its too

much " and you can just see the frustration and conflict going on in his head.

 We are working on trying to get him to verbalize during this, as he often just

moans or screams the same thing over and over. The Abilify seems to slow his

brain down enough to promote some calm, and when he does meltdown (had one last

night!), he is usually now just screaming and crying, rather than self harming

or destructive.  It's almost like he's trying to all out rage but can't quite

get there. The biggest side effect is weight gain, which it sounds like your

daughter could actually use.  Abilify is extremely expensive, but when I told

my pdoc that we had a $3000 deductible, and I couldn't afford the $900

prescription, he gave me 2 months of samples and said he'd keep me supplied as

long as we needed it.  The drug companies give this stuff to drs. like water -

all they have to do is ask for more, so don't be afraid to ask for them.  My

son has tried a lot of different med combos, and all hell broke loose at 11-12

when he hit puberty as well. I think the hormones and metabolism differences

change so much for them.  It took a while to find the most helpful meds and I

know your sufferring very well - I have lived it

...  But don't give up trying!!  It feels like a dark black hole when you are

in the midst of it, but with persistence and time your daughter and your family

will find some relief.  You are a great mom in the worst of circumstances, so

remember to take care of yourself as well!

- in MI