New Member

Posted September 23, 2007 · September 23, 2007

Hi all,

My name is Bea, I live in Los Angeles, and I am so excited to have

found this forum. I'm a retired grandmother who raised two daughters. I

am curious about the differences between boys and girls who are on the

autism spectrum. I am very involved with my grandchildren (both

male). One of them has ADHD and he is on a GFCF diet. I have joined

several forums, including this one. I am trying to learn from the

experiences of others who do and do not use the diet. I look forward to

chatting with you all.

Regards,

Bea

Posted September 24, 2007 · September 24, 2007

Hi Bea,

We have limited experience with the GFCF diet. When our youngest dd was about 3

we gave it a try. We were already pretty sure she was allergic to milk anyway.

We started by removing milk first. We didn't expect to see anything for a few

weeks (as it takes time to get it out of your system.) But she began singing in

just a few days. She'd never hummed or sung or anything. (This btw was the

direct opposite of our other daughter on the spectrum. She sang long before she

could ever speak.) Within days of that she began following the first directions

she'd ever followed. It was a dramatic change. We kept her off of milk for

about 2 years. Then we had a slip that led to falling off the diet. We didn't

see any immediate downside so we allowed milk back into her world. Within a few

days we got a note from her teacher telling us she wasn't " herself " . We didn't

really see this at home, but I guess at school she just was hazy. After a few

months we decided to put her back on the diet and a few days later got a note

from the teacher telling us we'd gotten " our old girl " back. She remained off

milk until she was about 6. We started letting her have cheese, etc. She'd

probably still be better off without it, but we don't see a huge difference at

this point.

As far as GF goes, after she'd been CF for a while we started the GF part of the

diet. We didn't go as drastic as removing all appliances that had ever had

gluten on them. But we were pretty strict. After a few months of that we saw

no changes so we gave it up.

During this time we were seeing Dr. Goldberg in Tarzana. His theories about the

immune system seemed to fit our girl. He ran tests and was able to explain why

the GF part of the diet was that important for her, as it is for some. With him

we went through a regiment to deal with yeast overgrowth and immune system

deficiencies. This treatment helped her as much as the CF diet did. We

discontinued treatment with him when we got to a point where we thought he'd

cured as much as could be.

Hope some of this gives you ideas.

New Member

Hi all,

My name is Bea, I live in Los Angeles, and I am so excited to have

found this forum. I'm a retired grandmother who raised two daughters. I

am curious about the differences between boys and girls who are on the

autism spectrum. I am very involved with my grandchildren (both

male). One of them has ADHD and he is on a GFCF diet. I have joined

several forums, including this one. I am trying to learn from the

experiences of others who do and do not use the diet. I look forward to

chatting with you all.

Regards,

Bea

Posted August 13, 2010 · August 13, 2010

Louise, oh my. Making a choice is almost impossible for my son. It drives us

nuts! He can't make any decisions at all. Should I sleep in my pajamas or my

underwear? Should I sleep with just the sheet or use the blanket, too? Should

I sleep with this stuffed animal? Should I listen to music? It goes on and on.

I say, " What do YOU want? " He can't tell me. So frustrating. BTW, I am in a

brain tumor support group where most of the members are from the UK. It's nice

to see you here!

Steffanie

> To:

> From: lcfrancis@...

> Date: Fri, 13 Aug 2010 13:31:25 +0100

> Subject: Re: Re: New member

>

> Hi,

>

> I'm new here too. It seems that many of you are in the US. I'm in the UK and

> treatments here appear to be very different. My son who is 12 has OCD and

> is currently being assessed for Aspergers. My son too appeared to develop

> these symptoms overnight, however looking back there were always traits -

> once when we were telling him off when he was 4 he shouted 'stop it - I'm

> having a heart attack!' It was funny then, but looking back it was not.

> There were other things too.

>

> At the moment it is school summer hols and he is at home all day andhis

> symptoms are driving me spare! He has to supervise cooking, choose a plate

> from a selection of about 6, spends about 15mins choosing cutlery and if he

> even suspects that the food has been 'contaminated' in any way then he

> refuses to eat. He seems to be constantly demanding attention, even through

> the night, waking me up throughout the night and telling me to sanitise my

> hands. There is a ritual he has to go through to brush his teeth and that

> takes about half an hour. I know he cant help it and I feel really angry

> and guilty about resenting his constant demands. The OCD seems to be ruling

> the house at the moment. He has a sister of 15 also with Aspergers and she

> is finding it really hard to cope with him and is increasingly withdrawing

> into her room and blames him for the way things are at the moment. Their

> dad is a lorry driver and is often away. When he returns he finds it

> difficult as we have sort of settled into a routine at meal times and

> doesn't realise or forgets the lengths to which we have to go to ensure he

> eats.

>

> At this very moment he is using disinfecting wipes and 'sanitising' every

> single page in a magazine he wants to read! LOL.

>

> I'm wondering if he will ever let me go back to work in September!!!!

>

> Louise

Posted August 13, 2010 · August 13, 2010

Hi there and welcome. I'm new within the last couple days. I can't say enough

how helpful it is to know you're not alone. My degree is in Human Development,

so I have some understanding of this stuff. I also have anxiety and depression

myself. It's easy to " get " and understand and want to help someone else. When

it's your family, it's horrible. You think, " I know this. How can this happen

to MY kid? " We have many sleepless nights, too. Bedtime and through the night

are so difficult. Going to sleep is torturous, and insomnia creeps in in the

middle of the night. I'm sorry you're dealing with this, too.

Steffanie

To:

From: anneogilvy@...

Date: Thu, 12 Aug 2010 23:39:50 +0000

Subject: New member

My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a

counselor who works with K-5 and I've noticed signed of anxiety since she was a

toddler as well as a few OCD behaviors. None of these behaviors have ever

effected her outside of the home and no one noticed but me. Then suddenly she

was hit with these panic attacks of worrying that something would happened to

our family and herself. We have now evolved into physical symptoms that are just

out of control. We saw a psychiatrist 2 weeks ago as the panic attacks turned

into rages that last 4-6 hours. After several trips to urgent care, the ER and

her pediatrician we went to a counselor who referred us to a psy. We started

antidepressants but are having a hard time getting her calm enough to actually

get a full nights sleep. She is taking something to help her sleep but one night

it works and then one night it doesn't. I am so at my wits end!! I know I

shouldn't be angry at her and it's the OCD that's doing this but some of the

behaviors seem so minipulative that I can't help but feel like she is putting on

a bit of a show at times. I just sent my husband out to buy the 2 books that

were recommended. That alone was hlpeful but also to know I'm not the only

mother that has become the target for there child's anger. My husband just

returned from Iraq and he seems to be the only one who can calm her down. (by

the way the psy. doen't think his absence or return have anything to do with

this) I know there is a light at the end but I too feel like I have lost my

sweet, happy fun daughter. The psy.said it she continues to have these rages

that we might have to put her in the hospital to get this under control. Have

any of you had to get control of this by putting them in the hospital?????

Posted August 13, 2010 · August 13, 2010

Thanks,

It is good to know there are others out there. Having spent the last few

days reading the posts I have realised that there are many people who are

having to deal with situations worse than mine. It is the sleepless nights

that I find the most difficult, especially if I have to get up for work in

the morning. I work 40 miles away from my home which means getting up at

5.30 and leaving at 7am. We have a retired priest who lives with us, he's

kinda like my dad and he used to look after iel and take him to school

but at the moment he really cannot cope with the OCD behaviour and gets very

frustrated. How do others cope with OCD kids and working full time? Do

other kids get depressed with their symptoms, nathaniel does, the more the

OCD gets the better of him the more frustrated and depressed he gets, it's

very painful and distressing to watch. I try to take him away from the

situation but it doesn't always work, any ideas?

Louise

On Fri, Aug 13, 2010 at 5:33 PM, Steffanie Flack

wrote:

>

> Hi there and welcome. I'm new within the last couple days. I can't say

> enough how helpful it is to know you're not alone. My degree is in Human

> Development, so I have some understanding of this stuff. I also have

> anxiety and depression myself. It's easy to " get " and understand and want

> to help someone else. When it's your family, it's horrible. You think, " I

> know this. How can this happen to MY kid? " We have many sleepless nights,

> too. Bedtime and through the night are so difficult. Going to sleep is

> torturous, and insomnia creeps in in the middle of the night. I'm sorry

> you're dealing with this, too.

>

> Steffanie

>

> To:

> From: anneogilvy@...

> Date: Thu, 12 Aug 2010 23:39:50 +0000

> Subject: New member

>

> My 10 year old daughter was just diagnosised with OCD 2 weeks ago. I'm a

> counselor who works with K-5 and I've noticed signed of anxiety since she

> was a toddler as well as a few OCD behaviors. None of these behaviors have

> ever effected her outside of the home and no one noticed but me. Then

> suddenly she was hit with these panic attacks of worrying that something

> would happened to our family and herself. We have now evolved into physical

> symptoms that are just out of control. We saw a psychiatrist 2 weeks ago as

> the panic attacks turned into rages that last 4-6 hours. After several trips

> to urgent care, the ER and her pediatrician we went to a counselor who

> referred us to a psy. We started antidepressants but are having a hard time

> getting her calm enough to actually get a full nights sleep. She is taking

> something to help her sleep but one night it works and then one night it

> doesn't. I am so at my wits end!! I know I shouldn't be angry at her and

> it's the OCD that's doing this but some of the behaviors seem so

> minipulative that I can't help but feel like she is putting on a bit of a

> show at times. I just sent my husband out to buy the 2 books that were

> recommended. That alone was hlpeful but also to know I'm not the only mother

> that has become the target for there child's anger. My husband just returned

> from Iraq and he seems to be the only one who can calm her down. (by the way

> the psy. doen't think his absence or return have anything to do with this) I

> know there is a light at the end but I too feel like I have lost my sweet,

> happy fun daughter. The psy.said it she continues to have these rages that

> we might have to put her in the hospital to get this under control. Have any

> of you had to get control of this by putting them in the hospital?????

>

Posted August 13, 2010 · August 13, 2010

M.--Bush brain! Thanks for the laugh. We live in Illinois. Perhaps I should

call my son's Blagojevich brain! I'm sure everyone knows who he is!

Steffanie

To:

From: u028021@...

Date: Fri, 13 Aug 2010 11:40:31 -0700

Subject: Re: New member

Hi Louise- Each child is different. I don't know how old your fhild is, but my

daughter is now 17. She showed signs of OCD at 9, diagnosed at 11. She's been

on 3 different meds (none worked) now on a trial for a different med (the anti

depressants didn't help her). She does get upset and frustrated at times, but

she has always been an upbeat kid, so each kid handles it differently. She

can't do ERP yet, but there are thing she has learned to cope with better.

Tamar Chansky's books helped a lot. We read them together (so I could edit out

some of the OCD types - sometimes the kids are very suggestable) - one thing she

said was to talk about the OCD differently. I used to say that my daughters OCD

was a part of her brain that always lied to her. We called it her Bush brain

(apologies to Republicans), it was our little code. Now that she is older we

just call it her OCD brain.

We have been through 6 therapists, everytime one of them challenges her OCD too

forcefully she shuts down. Frustrating . But I do see glimmers of light that

come with maturity and greater self awareness. This is a marathon not a sprint.

Be sure to get rest and do nuturing things for yourself so you can be the

patient parent she needs. I have always been a single mom, I work 62 miles

from my office on Wall Street (sounds like a make A LOT more money than I do).

I am in technology so I am frequently without work. I decided to let my house

go- no one will die if I don't fold the laundry or vacuum everyday - I need to

keep stress free for her. So find your bottom line.

Hope this helps.

M