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Hi :

I wonder if I could bother you to send me

the latest version of the schedule for get “togethers” in the Bay

Area for the Brain Gym work.

Thanks so much

Ann Farris

Author: The Other Side of Dyslexia

www.dyslexiadiscovery.com

415-552-6330

From:

[mailto: ] On Behalf Of Freitas

Sent: Monday, February 27, 2006

6:36 PM

Children with Challenges

Subject:

welcome new member

Welcome a new member who

writes:

" I have almost 5 year old, ex-25 weeker

preemie twins and would like to

learn and try reflex integration for them. "

Val

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Guest guest

Hi :

I wonder if I could bother you to send me

the latest version of the schedule for get “togethers” in the Bay

Area for the Brain Gym work.

Thanks so much

Ann Farris

Author: The Other Side of Dyslexia

www.dyslexiadiscovery.com

415-552-6330

From:

[mailto: ] On Behalf Of Freitas

Sent: Monday, February 27, 2006

6:36 PM

Children with Challenges

Subject:

welcome new member

Welcome a new member who

writes:

" I have almost 5 year old, ex-25 weeker

preemie twins and would like to

learn and try reflex integration for them. "

Val

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Guest guest

, thank you so much for that warm welcome.

It all started about less than a year ago when a speach therapist

evaluated my grandaughter and said she had a speach delay. Then 2

months afterwards there was another evaluation and she said that she

thought she had some kind of seizure; like petit mal. This was in

October. We immediatelly took her to a Child Neurologist and tests

began. Epiliepsy was ruled out but her Lactic Acid and Piruvates

levels (together) were high. 45 total when they should be 30. Again

they were repeated. It took almost a month for those results to get

back here. I live in Puerto Rico. This time the combined total was

100. Very high. There she said that the child had a

Genetic/Metabolic

Disorder and referred us to a Genetecist with two other tests.

Carnitine and another about creatinine. These came out ok.

We went to see the Genetecists and he did an extensive examination on

her. There he showed us about her hypotonia and repeated movements

around something or someone. We had never observed that. I almost

fainted when he pulled her thumb all the way to her arm. She has as

I understand soft muscles. That is in her mouth also and does not

let her be able to speak well. She is a very active 3 year old. Her

skin is real clear (white), but since my mother, I and my daughter

and all our families are white, (though not as white as her) we saw

nothing wrong. On her father's side some members do have darker skin

and they have noticed how white she is. I do notice that after a

while the sun really bothers her unles we are at the beach, which she

loves.

Let me be very sincere and a little personal here; I personally love

people of all skin colors. To me there is no difference. Every

human being is unique, special, beautiful and wonderful. I do not

work In Human Resources since I was disabled (1997) due to back

problems. But when I'm feeling better my goal in life in helping

others in any way that I can. I help Victims of Domestic Violence

and as an Environmentalist. I wanted you to know a little about me

personally.

He started her on two suplements: Biotine and Thiamine. Ordered the

Urine Acylglicide profile and Plasma Acylcarnitine (C-2/C-18)and as

soon as those results are in to bring her in immediatelly. I asked

him about a possible diagnosis and he said at the moment he is more

inclined to Oxidative Metabolic Disorder till the new results came

in.

I had done so much research on the Internet and had all those papers

with me. He told us to watch out for any symptoms related to low

sugar. I am a diabetic. And studied Nursing even though I never

worked but have always kept updated on most fields.

I would love to hear from the members on any feedback that you can

give me and on your experiences. I will read the Boards and get as

much information as I can.

Thank you so much for acepting me in your group and may God Bless you

and your loved ones forever and always!

Yoly Perea

>

> Please welcome a new member who writes:

>

> I'm the grandmother of a 3 y/o girl.Presents speach delay &

hypotonia.

> The Genetecists, has given a tentative DX of Oxidative Metabolic

> Disorder. I want to know as much as I can to help them.

>

> Val

>

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  • 2 months later...
Guest guest

Hello everyone I would like to correct this our newest member is Char

and her husband who suffers from pain is Terry. Sorry for the mistake.

Sharon Group Owner

>

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Guest guest

WELCOME TERRY

I HOPE WE CAN ANSWER ANY QUESTIONS THAT YOU AND YOUR HUSBAND MIGHT HAVE.

THIS IS A GREAT GROUP FILLED WITH VERY SUPPORTIVE MEMBERS. TAKE CARE AND

DON'T BE SHY!

rob

<html><div>No greater burden can be borne by an individual than to know no

one cares or understands. </div></html>

>From: " darkstarzz1019 " <darkstarzz1019@...>

>Reply-neck pain

>neck pain

>Subject: Welcome New Member

>Date: Sun, 28 May 2006 10:22:29 -0000

>

>Hello everyonme I would like you to welcome our newest member Terry.

>Her husband suffers from chronic pain. Hopefully soon she will

>introduce them both and we look forward to getting to know you. I am

>sorry that his pain has brought you to this group but you couldn't

>find a nicer more caring bunch of people around. Again a warm welcome

>to both of you. Sharon Group Owner

>

>

>

>

>

>

>

>

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  • 2 years later...
Guest guest

Hi ,

Thanks for letting me join your group. I am 43 years old and have been

dealing with my back issues for 5 years now. I originally hurt my back

working in my yard. I didn't know that I had any underlying conditions

so I never really took care of it the way I should. I was told that I

had degenerative disk disorder and it was way advanced for my age at the

time. The day I hurt my back, I completely destroyed my bottom 3 disk

starting with S1. For about 6 months I tried epidural shots, physical

surgery, pain meds, and didn't get any relief so I decided on the

surgery. One surgery led to another and then another. I've had

infections from them that they had to go in and clean out which was

another surgery. I am fused from L5/S1 - L1/L2 - 5 levels. Above the

fusion, I have developed arthritis which also causes pain.

After suffering for about 3 or so years, my pain Dr. suggested a trial

stimulator. I went for it but it took over a year for my insurance to

approve it. It did help about 65%. I was able to sit through an entire

movie! It has been a year since the trial and I know that I need to get

it done but I am having a very hard time trying to convince myself to

let another Dr touch me with a knife. I have developed a major case of

post traumatic stress disorder from all the pain. I woke up from my 3rd

surgery before I had any pain meds in me and it was the worst experience

in my life! I am still going to a pain Dr. each month and that is as

far as I have gotten in the last year.

Thanks for letting me share,

>

> ,

> Hi my name is . I am one of the moderators of this group. I would

like to welcome you.

> I have had RSD for over 7 years and have had my scs for 1 1/2

years.I get great relief with my scs. Sure I'm not 100 % pain free.. but

it is much better then it was.

> Would you like to tell the group about yourself?

> We have many careing and knowageble people here that can help any

questions or concerns you may have.

> I do understand how bad the fusions can be. My husband is going to be

having his 2nd cervical fusion surgery June 3rd...

> Did you just have the trial so far? When is your surgey scheuled

for?

> Take care and let us know if you have any wuestions.. We are all here

for each other..

> Hope you have a great Memorial Day weekend !!!

> soft hugs

> T

> group moderator

> lisa

>

>

>

>

>

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Guest guest

susan welcome to the group, i am mike group owner here. I started this group

about 7 years ago when i got my stimulator I hurt me back while working with

adults with mental illness a pateint ran his head into my back football tackle

type. his head hit my back hard i have a about 12 steriod injections for 2 years

then a IDET surgery then a Anterior luimbar fusion then a spinal cord

stimulator. anyway im glad your stimulator helped you alot if you need anything

let me know mike2boys@... Mike Maxey Group Owner

> >

> > ,

> > Hi my name is . I am one of the moderators of this group. I would

> like to welcome you.

> > I have had RSD for over 7 years and have had my scs for 1 1/2

> years.I get great relief with my scs. Sure I'm not 100 % pain free.. but

> it is much better then it was.

> > Would you like to tell the group about yourself?

> > We have many careing and knowageble people here that can help any

> questions or concerns you may have.

> > I do understand how bad the fusions can be. My husband is going to be

> having his 2nd cervical fusion surgery June 3rd...

> > Did you just have the trial so far? When is your surgey scheuled

> for?

> > Take care and let us know if you have any wuestions.. We are all here

> for each other..

> > Hope you have a great Memorial Day weekend !!!

> > soft hugs

> > T

> > group moderator

> > lisa

> >

> >

> >

> >

> >

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  • 1 year later...

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