Re: Intestinal motility studies

July 9, 2004

Hi ,

We give Jack flax seed oil daily too and it does seem to help a bit. It has

also helped his concentration levels at school.

BTW how is Kennedy doing after her heart surgery? I think of her often.

Take care

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

Hi ,

We give Jack flax seed oil daily too and it does seem to help a bit. It has

also helped his concentration levels at school.

BTW how is Kennedy doing after her heart surgery? I think of her often.

Take care

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

Hi ,

We give Jack flax seed oil daily too and it does seem to help a bit. It has

also helped his concentration levels at school.

BTW how is Kennedy doing after her heart surgery? I think of her often.

Take care

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

Elaine,

Sorry to hear about Jack's ongoing issues with constipation. We've not had

the tests done, things were quite slow with Kennedy but since putting her on

Flax oil, things seem to keep moving, we give her ground flax seed with her

breakfast feeding and flax oil in with the food we make her for lunch &

supper.

Let us know how things go...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Intestinal motility studies

Hi All,

Sorry I've not posted in a while but I do read all the messages and try to

keep up

Jack has had problems with constipation since he was tiny and there is no

improvement. His paed wanted to refer him for intestinal motility studies

but

she has discovered that no-one in Scotland does these studies on children.

Has anyone had these studies done on their child and if so where were they

performed and what did they entail?

Thanks in advance.

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

Elaine,

Sorry to hear about Jack's ongoing issues with constipation. We've not had

the tests done, things were quite slow with Kennedy but since putting her on

Flax oil, things seem to keep moving, we give her ground flax seed with her

breakfast feeding and flax oil in with the food we make her for lunch &

supper.

Let us know how things go...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Intestinal motility studies

Hi All,

Sorry I've not posted in a while but I do read all the messages and try to

keep up

Jack has had problems with constipation since he was tiny and there is no

improvement. His paed wanted to refer him for intestinal motility studies

but

she has discovered that no-one in Scotland does these studies on children.

Has anyone had these studies done on their child and if so where were they

performed and what did they entail?

Thanks in advance.

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

Elaine,

Sorry to hear about Jack's ongoing issues with constipation. We've not had

the tests done, things were quite slow with Kennedy but since putting her on

Flax oil, things seem to keep moving, we give her ground flax seed with her

breakfast feeding and flax oil in with the food we make her for lunch &

supper.

Let us know how things go...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Intestinal motility studies

Hi All,

Sorry I've not posted in a while but I do read all the messages and try to

keep up

Jack has had problems with constipation since he was tiny and there is no

improvement. His paed wanted to refer him for intestinal motility studies

but

she has discovered that no-one in Scotland does these studies on children.

Has anyone had these studies done on their child and if so where were they

performed and what did they entail?

Thanks in advance.

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 9, 2004

As much as I resisted it for years, once we started enulose Dylan did

better. The final touch for us is his cranial sacral therapy that manually

helps move it along. My theory is Dylan does not get strong nerve impulses

from the brain, and it is variable for him; sometimes good impulses, and

sometimes everything just stops.

From what I remember intestinal motility studies, are quite a deal.

Everything has to be done just so, and hard to get good results.

Sorry I don't have specifics.

Kim L

> Hi ,

> We give Jack flax seed oil daily too and it does seem to help a bit. It has

> also helped his concentration levels at school.

> BTW how is Kennedy doing after her heart surgery? I think of her often.

> Take care

>

> Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

> Scotland

>

July 9, 2004

As much as I resisted it for years, once we started enulose Dylan did

better. The final touch for us is his cranial sacral therapy that manually

helps move it along. My theory is Dylan does not get strong nerve impulses

from the brain, and it is variable for him; sometimes good impulses, and

sometimes everything just stops.

From what I remember intestinal motility studies, are quite a deal.

Everything has to be done just so, and hard to get good results.

Sorry I don't have specifics.

Kim L

> Hi ,

> We give Jack flax seed oil daily too and it does seem to help a bit. It has

> also helped his concentration levels at school.

> BTW how is Kennedy doing after her heart surgery? I think of her often.

> Take care

>

> Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

> Scotland

>

July 9, 2004

As much as I resisted it for years, once we started enulose Dylan did

better. The final touch for us is his cranial sacral therapy that manually

helps move it along. My theory is Dylan does not get strong nerve impulses

from the brain, and it is variable for him; sometimes good impulses, and

sometimes everything just stops.

From what I remember intestinal motility studies, are quite a deal.

Everything has to be done just so, and hard to get good results.

Sorry I don't have specifics.

Kim L

> Hi ,

> We give Jack flax seed oil daily too and it does seem to help a bit. It has

> also helped his concentration levels at school.

> BTW how is Kennedy doing after her heart surgery? I think of her often.

> Take care

>

> Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

> Scotland

>

July 9, 2004

Elaine,

Kennedy is doing great! She is anxiously awaiting the return to school

though. We have our own little " school " time every day and work on sheets

and things to keep her in the swing of things. She misses school a lot. We

are going to sign language school for a week in August and are both looking

forward to it.

TTYS<

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Intestinal motility studies

Hi ,

We give Jack flax seed oil daily too and it does seem to help a bit. It

has

also helped his concentration levels at school.

BTW how is Kennedy doing after her heart surgery? I think of her often.

Take care

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 11, 2004

Thanks Jo

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 11, 2004

hi Elaine,

don't apologize, we all now how busy life gets! nice to know you're still

here, i've always enjoyed reading your emails,

regards,

Jo

ds Ben, ds Josh

----- Original Message -----

> Hi All,

> Sorry I've not posted in a while but I do read all the messages and try to

> keep up

July 11, 2004

hi Elaine,

don't apologize, we all now how busy life gets! nice to know you're still

here, i've always enjoyed reading your emails,

regards,

Jo

ds Ben, ds Josh

----- Original Message -----

> Hi All,

> Sorry I've not posted in a while but I do read all the messages and try to

> keep up

July 11, 2004

hi Elaine,

don't apologize, we all now how busy life gets! nice to know you're still

here, i've always enjoyed reading your emails,

regards,

Jo

ds Ben, ds Josh

----- Original Message -----

> Hi All,

> Sorry I've not posted in a while but I do read all the messages and try to

> keep up

July 13, 2004

Hi ,

I only give Jack 5mls a day. I have wondered about giving him more but the

adult dose on the bottle is 10mls so thought that would be too much ??

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

July 13, 2004

Thanks. I am thinking of taking Aubrie to my holistic dr. If I do,

I'll let you know her recommendations as well. I don't think you can go

wrong with what you are doing.

Michele W

July 13, 2004

Thanks. I am thinking of taking Aubrie to my holistic dr. If I do,

I'll let you know her recommendations as well. I don't think you can go

wrong with what you are doing.

Michele W

July 13, 2004

Michele....

Ha ha...I don't measure it " too " exactly. When I'm making Kennedy's food in

the Vitamix, I use 1/4 cup of oil for 2 lunches & 2 suppers. About 1/2 of

that quarter cup is flax oil, the other half, canola. Also, in her

breakfast, I grind up whole flax seeds with a coffee grinder and put

probably about 1-2 tbsp in.

Hope that helps...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Intestinal motility studies

Elaine & -

How much flax seed oil do you give the kids?

Michele W

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

July 13, 2004

Michele....

Ha ha...I don't measure it " too " exactly. When I'm making Kennedy's food in

the Vitamix, I use 1/4 cup of oil for 2 lunches & 2 suppers. About 1/2 of

that quarter cup is flax oil, the other half, canola. Also, in her

breakfast, I grind up whole flax seeds with a coffee grinder and put

probably about 1-2 tbsp in.

Hope that helps...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Intestinal motility studies

Elaine & -

How much flax seed oil do you give the kids?

Michele W

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

July 13, 2004

,

I would be interested to know more about what you feed Kennedy. Is it

through a tube or do you just puree it for her. We got the VitaMix to make

Dylan's food in hopes of getting him off this infant formula, but his

stomach is so sensitive to any change. He is 99% tube fed.

Kim L

> Michele....

> Ha ha...I don't measure it " too " exactly. When I'm making Kennedy's food in

> the Vitamix, I use 1/4 cup of oil for 2 lunches & 2 suppers. About 1/2 of

> that quarter cup is flax oil, the other half, canola. Also, in her

> breakfast, I grind up whole flax seeds with a coffee grinder and put

> probably about 1-2 tbsp in.

> Hope that helps...

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://personal.nbnet.nb.ca/gweir

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Re: Intestinal motility studies

>

> Elaine & -

> How much flax seed oil do you give the kids?

>

> Michele W

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

July 13, 2004

,

I would be interested to know more about what you feed Kennedy. Is it

through a tube or do you just puree it for her. We got the VitaMix to make

Dylan's food in hopes of getting him off this infant formula, but his

stomach is so sensitive to any change. He is 99% tube fed.

Kim L

> Michele....

> Ha ha...I don't measure it " too " exactly. When I'm making Kennedy's food in

> the Vitamix, I use 1/4 cup of oil for 2 lunches & 2 suppers. About 1/2 of

> that quarter cup is flax oil, the other half, canola. Also, in her

> breakfast, I grind up whole flax seeds with a coffee grinder and put

> probably about 1-2 tbsp in.

> Hope that helps...

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://personal.nbnet.nb.ca/gweir

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Re: Intestinal motility studies

>

> Elaine & -

> How much flax seed oil do you give the kids?

>

> Michele W

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

July 13, 2004

,

I would be interested to know more about what you feed Kennedy. Is it

through a tube or do you just puree it for her. We got the VitaMix to make

Dylan's food in hopes of getting him off this infant formula, but his

stomach is so sensitive to any change. He is 99% tube fed.

Kim L

> Michele....

> Ha ha...I don't measure it " too " exactly. When I'm making Kennedy's food in

> the Vitamix, I use 1/4 cup of oil for 2 lunches & 2 suppers. About 1/2 of

> that quarter cup is flax oil, the other half, canola. Also, in her

> breakfast, I grind up whole flax seeds with a coffee grinder and put

> probably about 1-2 tbsp in.

> Hope that helps...

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://personal.nbnet.nb.ca/gweir

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Re: Intestinal motility studies

>

> Elaine & -

> How much flax seed oil do you give the kids?

>

> Michele W

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

July 13, 2004

-

Thanks. I guess it's not the kind of thing that requires careful

measuring. But a ballpark is good. Thanks!

Michele W

July 13, 2004

Hi Elaine,

I too have heard that aloe vera is good for constipation. We have just

started this for although I have to say she does not have bowel

problems as such. We have started it more to increase her immune system

and cleanse her system to help absorb nutrients to help with growth etc.

Can't comment on effect as has only been a couple of days but if any notable

bowel effects, will let you know. There is a children's brand from the

" Forever Living " bunch called " bits and peaches " which tastes quite pleasant

compared to the horrible bitter one for adults. quite likes it but

have to say Elly spits it straight out but that is OK because Elly needs it

even less (being a child with no specific needs but to compete with her

sister!). Hope you find some answers to Jack's problems soon.

Flo

July 13, 2004