FW: Question I wish I did not have to ask

[Guest guest]

From: Doug and Beate Rapien

Sent: July-13-07 6:55 AM

To: 'pyn1pyn1@...'

Subject: Question I wish I did not have to ask

Dear Glynis,

My daughter has problems gaining weight too. I had been hooked up with sick

Kids in Toronto. Before we started SCD my daughter was off all refined

sugars, gluten and corn and dairy. I told them that she is allergic to all

this and that she will not get this. What they came up with was just like in

your case, no consideration for what the child could or could not tolerate.

I just dropped them, have never gone back to them and kept on looking for

someone or something else.

In your case, they had one year already and have not been able to get her to

gain weight. So I think now it is the mothers turn to go with what you feel

is best for your child.

We are currently going to Philadelphia to the Institutes and what they have

told me is. Yes she is 15 years old and yes she only weighs 49 lbs but she

is also only 136 cm tall and that relationship is just fine. Age is not

important. It is important how tall your child is and how much she weighs.

IF that is in proportion don't worry.

I know some doctors are really good in making you feel bad and guilty in not

looking after your child proper, but they ignore facts that are very

important to your child and that is worse. They think they know it all, but

yet have no clue. We have been able to find some real good health care

practitioners, mainly alternative ones, but also regular doctors, and these

are the ones I will go back to. Nobody can force you to go back to them.

We have been going through this for the past 11 years and I feel for you and

understand.

My daughter is vaccine damaged after her 18 months shot she started with a

seizure disorder and when she was 4 she lost control over everything and is

nonverbal, and needs assistance with all her daily living. The doctors have

labelled her as non defined neurological disorder.

I wish you well, just start this diet and come back and ask questions, they

are really supportive here and can explain things to you.

Good luck

Beate Rapien

[Guest guest]

--- Hi Beate,

Thanks for the kind words and encouragement. You're right of course,

as long as Jazzie isn't hugely underweight, I shouldn't be worried.

Her height and weight ratio is within the limits. The professionals

are so good at making people feel guilty for trying other

alternatives. Our GI said her colleagues often have a chuckle at my

attempts to help Jazzie!! All they can do is shake their heads when

I tell them that Jazzie reacts to so many foods. Until May last

year, I did not know there were any other children in the world that

reacted to food in such a way, I just put it down to Jazzies rare

syndrome, and the fact they don't know too much about it. Thank God

for Elaine, Pecanbread and this list, it has given me so much hope.

I am going to give SCD a proper go in the hollidays. I know without

any doubt this is the right path for us. I hope you and your family

are well, and thanks again, knowing someone is listening and taking

time to write is such a comfort!

Regards

Glynis mam to Jasmine 7 yrs

Diagnosed with Kabuki Syndrome

NG tube fed

In pecanbread , " Doug and Beate Rapien "

wrote:

>

>

>

>

>

> From: Doug and Beate Rapien

> Sent: July-13-07 6:55 AM

> To: 'pyn1pyn1@...'

> Subject: Question I wish I did not have to ask

>

>

>

> Dear Glynis,

>

> My daughter has problems gaining weight too. I had been hooked up

with sick

> Kids in Toronto. Before we started SCD my daughter was off all

refined

> sugars, gluten and corn and dairy. I told them that she is allergic

to all

> this and that she will not get this. What they came up with was

just like in

> your case, no consideration for what the child could or could not

tolerate.

> I just dropped them, have never gone back to them and kept on

looking for

> someone or something else.

>

> In your case, they had one year already and have not been able to

get her to

> gain weight. So I think now it is the mothers turn to go with what

you feel

> is best for your child.

>

> We are currently going to Philadelphia to the Institutes and what

they have

> told me is. Yes she is 15 years old and yes she only weighs 49 lbs

but she

> is also only 136 cm tall and that relationship is just fine. Age is

not

> important. It is important how tall your child is and how much she

weighs.

> IF that is in proportion don't worry.

>

> I know some doctors are really good in making you feel bad and

guilty in not

> looking after your child proper, but they ignore facts that are very

> important to your child and that is worse. They think they know it

all, but

> yet have no clue. We have been able to find some real good health

care

> practitioners, mainly alternative ones, but also regular doctors,

and these

> are the ones I will go back to. Nobody can force you to go back to

them.

>

> We have been going through this for the past 11 years and I feel

for you and

> understand.

>

> My daughter is vaccine damaged after her 18 months shot she started

with a

> seizure disorder and when she was 4 she lost control over

everything and is

> nonverbal, and needs assistance with all her daily living. The

doctors have

> labelled her as non defined neurological disorder.

>

> I wish you well, just start this diet and come back and ask

questions, they

> are really supportive here and can explain things to you.

>

> Good luck

>

> Beate Rapien

>

>

>

>