Re: The Hunt for an Autism Drug

[Guest guest]

Hi Bev,

It was nice to see a picture of you and Jen. It sounds like things are going a

little better. How much Fish oil do you give Jen? I was just wondering, because

that has been one of the biggest helps of all for my children. I found some

gummi fish that have fish oil in them and have been letting the kids have about

4-6 of them a day and they are suddenly all learning to read and all kinds of

good things. By the way how has the book been helping? Any more success on the

Potty Training? Did I ever send you the CD or DVD? I can't remember? Let me

know... it is very helpful to play again and again.

Congrats on the Article, Esther

Subject: The Hunt for an Autism Drug

To: Autism_in_Girls_and_Women

Date: Friday, January 15, 2010, 2:08 PM

 

Do you want to see Jen and my picture, we are in the magazine BusinessWeek

and on the website at

http://www.business week.com/ magazine/ content/10_ 04/b416404050052 4.htm

Bev

[Guest guest]

Bev it was of a much good story and picture and will pass this link along if

okay with you.

sondra

[Guest guest]

Bev,

I also enjoyed reading the story. I felt for your daughter's frustration at not

being able to communicate. Have you tried Proloquo2go? It may help. Here's

the link to their web page. It's an ap for the iPhone or iPod touch.

http://www.proloquo2go.com/

Take care,

>

> Do you want to see Jen and my picture, we are in the magazine BusinessWeek

>

> and on the website at

> http://www.businessweek.com/magazine/content/10_04/b4164040500524.htm

>

> Bev

>

[Guest guest]

Hi Esther,

Jen is using the flip picture, that are on a key ring, she seem to really like

them. I've been reading the book to her, you sent a CD. Jen's attention span had

been short when she is siting on the potty, so I've been reading parts of the

book to her. The next time she goes to the potty, I start reading in a different

part of the book. She seems to like the short readings.

Jen has been taking fish oil from Kirkmanlab.com every day, this has been going

on for years.

Yes she is improving, she is learning the order of what to do when going to the

potty, they are working at it at school and I'm trying to the same at home. If

asked if she is wet or dry, she is getting very good at tell if she is one or

the other. She has a tantrum with a wet diaper, she hates wet diapers most of

the time, almost all the time! I love it!

She saying new words at school almost everyday that they did not even know she

knew. The school is reevaluating her again. This her senior year, so I will have

find another way for her to be evaluated.

Jen is working very hard at potty training! I wish, I knew how long it will

take, but I have no idea.

Bev

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> Subject: The Hunt for an Autism Drug

> To: Autism_in_Girls_and_Women

> Date: Friday, January 15, 2010, 2:08 PM

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> Do you want to see Jen and my picture, we are in the magazine BusinessWeek

>

> and on the website at

> http://www.business week.com/ magazine/ content/10_ 04/b416404050052 4.htm

>

> Bev

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[Guest guest]

Hi Sondra,

Please pass it along, this drug, Namenda is making a big difference for Jen. For

the longest time she kept saying " I'm here " and " Mom, I'm here! " I think she was

trying to let me the drug was helping her. I think she was trying to let me know

that it was important that I did not give up on the drug and her! I'm so proud

of her!

Take care,

Bev

>

>

>

> Bev it was of a much good story and picture and will pass this link along if

okay with you.

> sondra

>

[Guest guest]

Hi ,

They have been working with similar devices in school, but she is talking in

short sentences and she does her best to answer questions. Examples, " I want my

Grandma " , " I want my Mom " and so many more. She still has trouble talking

exactly when she chooses, that or she has not gained total confidence in her

language. She does seem to still have problems pronouncing some words, and many

times she is using one the fronts of some words. The two examples I gave, " I

want my Grandma " , " I want my Mom " were pronounce completely clear in front of

her class, aides, teacher and myself, the auditorium just before the Holiday

sing along at her school. She still spends a lot of time watching TV/VCR tapes.

I think she is learn a lot of language by watching.

Ellen Gibson, the author, visited us a while back, Jen has improve since Ellen

seen her.

Jen spent last night potty training and learning how to pour water from a gallon

water jug into a plastic cup. she had water on the table, floor her pants. But

she was doing it herself. She was also watching her TV/VCR tapes. She is doing

the small tonight. We were also playing with a few toys, it was fun.

Bev

> >

> > Do you want to see Jen and my picture, we are in the magazine BusinessWeek

> >

> > and on the website at

> > http://www.businessweek.com/magazine/content/10_04/b4164040500524.htm

> >

> > Bev

> >

>

[Guest guest]

Hi Bev,

I am so glad to hear that things are starting to work for her. That is so very

wonderful!!! How much fish oil are you giving her? Have you tried the GFCF diet?

I am sure you have, but are you still on it? I was wondering, because for my

kids, I can't entirely seem to do the GFCF diet... but I have switched all my

grain products to Oats and Spelt flour and that has made a HUGE difference in my

kiddos ability to concentrate and focus and that is when the eye contact came

back. I have also taken them 100% off milk. They still eat cheese and yogurt and

sour cream and cottage cheese, but NEVER milk. If there was any food or drink

that made the most difference with my kids it has been MILK. To this day, even

though it has been 3 years since they have been on milk, if someone else has

given it to them, they go balistic and turn night and day difference. They go

from reading, writing, playing well, having conversations, all the improvements

that they have gotten

to now, and they go within 24 hours to drooling, biting, tantruming, kicking,

screaming, and breaking things. I have never seen anything like the reaction, it

is nearly like a dog with rabies. When they have any form of wheat (aside from

Spelt) they can get to this point that I am describing that the milk does to

them, but it takes a week or two of me slacking on the diet for them to get back

to that point. But man, if they have milk, wheat and forget their fish oil I am

in serious trouble!!!

I am so proud of Jen and her improvements, but maybe consider some of the things

I mentioned if you haven't already. BTW I use Almond Milk now... I have tried

Soy and Rice and had very negative effects with those as well. Certainly not the

same effects, but they still were not happy on those. It is worth a try. I had

to give up milk too though just to let you know, because it wasn't fair for me

to drink it and expect them to give it up. So I have not had milk in almost 3

years either. I do sneak it when I am at my moms house and the kids aren't there

to see me drink it but it usually gives me an upset stomach now that I

haven't had it in so long. It has been a sacrifice, but it is soooooooooooooo

worth it!

Regarding the Videos that Jen is watching. Have you ever tried Brainy Baby (NOT

baby einstien... very different) videos with her? That was the main one that

seemed to get my kids talking. Also, the Signing Time Series is AMAZING. My kids

really showed me their amazing memorization skills when they learned both sign

language and verbal language from those movies. In one time of watching those

videos they all know all the signs and speak to eachother, but here I am lost

watching the video about 15 times before I know the signs. They learned the

vocabulary from each video though about the 15th time when I finally got the

sign language. So these videos are great for both. They are totally worth

buying, but you can get them from most libraries too. I just let the kids watch

both of those videos and they have learned way more from those than from me

sometimes. In fact they are learning more from the Leap Frog Reading videos that

teach kids to read, way more

than they learn from me or any of their teachers. I know that I am a pretty

good teacher and have lots of teachers in both sides of our family, but they

just learn better from repetition. I hope that this can help you!!! So, glad to

hear that things are going better. Do you think that any of this could be from

something aside from the Namenda though? I am not trying to knock the Namenda,

but I am just leary of medications and am wondering if maybe a change in your

life (like didn't you split up with your hubby) or maybe you guys moved to a

new area, or got a new teacher ora combination of things??? I am only wondering,

because of some of the negative experiences that I, my husband, and children

have had with medication. Plus I have a cousin who has 3 children with autism

as well. One of his is on Namenda and has not had any posative results, but they

haven't done anything else with him different as far as change. Just something

to think about. I

would really like to know though, even if you want to post offline, but I

really am wondering if it is for sure the Namenda, or maybe you have been able

to spend more time on her and show her you care etc. Please let me know! Either

way the results that you are having are fantastic! Keep up the good work!

Sincerely, Esther 

Subject: Re: The Hunt for an Autism Drug

To: Autism_in_Girls_and_Women

Date: Monday, January 18, 2010, 4:36 PM

 

Hi ,

They have been working with similar devices in school, but she is talking in

short sentences and she does her best to answer questions. Examples, " I want my

Grandma " , " I want my Mom " and so many more. She still has trouble talking

exactly when she chooses, that or she has not gained total confidence in her

language. She does seem to still have problems pronouncing some words, and many

times she is using one the fronts of some words. The two examples I gave, " I

want my Grandma " , " I want my Mom " were pronounce completely clear in front of

her class, aides, teacher and myself, the auditorium just before the Holiday

sing along at her school. She still spends a lot of time watching TV/VCR tapes.

I think she is learn a lot of language by watching.

Ellen Gibson, the author, visited us a while back, Jen has improve since Ellen

seen her.

Jen spent last night potty training and learning how to pour water from a gallon

water jug into a plastic cup. she had water on the table, floor her pants. But

she was doing it herself. She was also watching her TV/VCR tapes. She is doing

the small tonight. We were also playing with a few toys, it was fun.

Bev

> >

> > Do you want to see Jen and my picture, we are in the magazine BusinessWeek

> >

> > and on the website at

> > http://www.business week.com/ magazine/ content/10_ 04/b416404050052 4.htm

> >

> > Bev

> >

>

[Guest guest]

Hi Ester,

The Cod

1 gel capsule, liver oil with Vitamins A & D (Kirtman), the bottle does not say

the amount on the bottle, just that we 1 to 4 per day. DR Brenner seem OK with

the amount.

Jen is now on a regular diet, but no seafood, we did the GFCF diet and much more

for years, her gut problem is gone, so it was stopped. She doing great in that

respect.

Milk, cheese it is all the same, when I avoided it for Jen, again she is not

longer on a diet. I do not do artificial sweeter with her, poison for her I

believe.

I believe what affect both Kim and Jen was Thimerosal.

Kim, what chelated for heavy metal, she is doing great, she was never as severe

as Jen. Kim was on the diet, supplements and vitamins too! Kim could not read by

third grade, math not good at that either! KIm was having real trouble, then Dr

Arnold Brenner chelated her. I would not allow my daughter to have any more

Thimerosal Shots. Oh, Kim does not eat any seafood, it can be contaminated with

Mercury sometimes. Kim is now in College, she graduated from High School just

like a normal girl, as if she was never had a problem. She is going to be a

Graphic Designer! I'm so proud of her!

By the way how did you get book published? I think about someday do some thing

on the same line, not a potty training book. I have another idea.

I wish you the best!

Bev

> > >

> > > Do you want to see Jen and my picture, we are in the magazine BusinessWeek

> > >

> > > and on the website at

> > > http://www.business week.com/ magazine/ content/10_ 04/b416404050052 4.htm

> > >

> > > Bev

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