question I wish I didn't have to ask...

[Guest guest]

Has anyone here ever had a medical practitioner turn them into CPS for doing

this diet? I feel like we need the help of the doctors right now, but we had a

neighbor turn us into CPS last year because she felt my kids were too thin and

she heard I had them " on a diet. " This was pre-SCD and we were feeding the 2

with GI problems a GF/CF (etc.) diet.

We were investigated by CPS to determine if our kids were being

neglected/abused. Everything was dropped when the investigator saw the medical

records and interviewed us, but I'm sure we would really be in jepardy if a

medical person were to now report us.

I get nervous when I take my kids to their doctors (many upcoming visits). I

am honest with them about the dietary changes and I am concerned that they will

think there is a problem with this diet since they did not prescribe it, and no

medical person who is knowledgable about it is supervising the outcome. My

reasons for staying on SCD when it has been less than successful is that it

seems to have unearthed some underlying problems that could possibly be

diagnosed based on how they have responded to SCD.

At this point, I am considering traveling out of state to work with an SCD

doctor so one can help figure out the missing pieces for us, but in the meantime

I have local doctors who are providing care. Do any of you that have to work

with a doctor have any advice for speaking with them about this diet so that

they will not suspect an abusive/neglectful intent behind it when it is not

going smoothly?

-

---------------------------------

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[Guest guest]

Hi ,

The best way is to provide doctors with scientific articles that

support the SCD diet. I have quite a collection of such articles. How

soon do you need them? I am sorry that a dedicated mother like you had

to suffer.

I will do my best to get it all together.

Mimi

>Do any of you that have to work with a doctor have any advice for

speaking with them about this diet so that they will not suspect an

abusive/neglectful intent behind it when it is not going smoothly?

> Has anyone here ever had a medical practitioner turn them into CPS for doing

> this diet? I feel like we need the help of the doctors right now, but we

> had a neighbor turn us into CPS last year because she felt my kids were too

> thin and she heard I had them " on a diet. " This was pre-SCD and we were

> feeding the 2 with GI problems a GF/CF (etc.) diet.

>

> We were investigated by CPS to determine if our kids were being

> neglected/abused. Everything was dropped when the investigator saw the

> medical records and interviewed us, but I'm sure we would really be in

> jepardy if a medical person were to now report us.

>

> I get nervous when I take my kids to their doctors (many upcoming visits).

> I am honest with them about the dietary changes and I am concerned that

> they will think there is a problem with this diet since they did not

> prescribe it, and no medical person who is knowledgable about it is

> supervising the outcome. My reasons for staying on SCD when it has been

> less than successful is that it seems to have unearthed some underlying

> problems that could possibly be diagnosed based on how they have responded

> to SCD.

>

> At this point, I am considering traveling out of state to work with an SCD

> doctor so one can help figure out the missing pieces for us, but in the

> meantime I have local doctors who are providing care. Do any of you that

> have to work with a doctor have any advice for speaking with them about this

> diet so that they will not suspect an abusive/neglectful intent behind it

> when it is not going smoothly?

>

> -

>

>

> ---------------------------------

> It's here! Your new message!

> Get new email alerts with the free Yahoo! Toolbar.

>

>

[Guest guest]

Dear list,

I would like to have such list of articles or/and

doctors (preferably european doctors) My daughter's

gastroenterologist said he knew about the diet and he

thinks that the fact she is finally without symptoms

is due to medicines and not diet even if she has been

on the same immunesuppressants for 5 years. This

gastroenterologist has not even mentioned the fact

that if things keep going well in the future she could

get rid of the drugs, he only said that she can start

introducing SCD " illegal foods " in September. This

after all my hard work on my daughter. I would not be

surprised if next time he told her that she is getting

too slim because of my wrong dietary choices. She is

very well now, we only need some encouragement and

medical guidance for the future.

We also need to know if somebody after the due time on

the diet has gone back to the normal diet ( I mean

cereals, some milk and potatoes, not junk food) and

remained healthy.

Looking forward to your answers

Stefania mother to (16 y old, UC 7 years, SCD 10

weeks)

> Hi ,

>

> The best way is to provide doctors with scientific

> articles that

> support the SCD diet. I have quite a collection of

> such articles. How

> soon do you need them? I am sorry that a dedicated

> mother like you had

> to suffer.

>

> I will do my best to get it all together.

>

> Mimi

> >Do any of you that have to work with a doctor have

> any advice for

> speaking with them about this diet so that they will

> not suspect an

> abusive/neglectful intent behind it when it is not

> going smoothly?

>

>

>

> On 7/12/07, Rob or Sunseri

> wrote:

> > Has anyone here ever had a medical practitioner

> turn them into CPS for doing

> > this diet? I feel like we need the help of the

> doctors right now, but we

> > had a neighbor turn us into CPS last year because

> she felt my kids were too

> > thin and she heard I had them " on a diet. " This

> was pre-SCD and we were

> > feeding the 2 with GI problems a GF/CF (etc.)

> diet.

> >

> > We were investigated by CPS to determine if our

> kids were being

> > neglected/abused. Everything was dropped when the

> investigator saw the

> > medical records and interviewed us, but I'm sure

> we would really be in

> > jepardy if a medical person were to now report us.

> >

> > I get nervous when I take my kids to their

> doctors (many upcoming visits).

> > I am honest with them about the dietary changes

> and I am concerned that

> > they will think there is a problem with this diet

> since they did not

> > prescribe it, and no medical person who is

> knowledgable about it is

> > supervising the outcome. My reasons for staying

> on SCD when it has been

> > less than successful is that it seems to have

> unearthed some underlying

> > problems that could possibly be diagnosed based on

> how they have responded

> > to SCD.

> >

> > At this point, I am considering traveling out of

> state to work with an SCD

> > doctor so one can help figure out the missing

> pieces for us, but in the

> > meantime I have local doctors who are providing

> care. Do any of you that

> > have to work with a doctor have any advice for

> speaking with them about this

> > diet so that they will not suspect an

> abusive/neglectful intent behind it

> > when it is not going smoothly?

> >

> > -

> >

> >

> > ---------------------------------

> > It's here! Your new message!

> > Get new email alerts with the free Yahoo! Toolbar.

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

>

___________________________________

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[Guest guest]

--- Dear Mimi,

Would it be possible for you to send me some of the scientific

evidence so I can show it to my daughters GI, please? Jasmine is NG

tube fed, and we are having a terrible time with weight gain,

behaviours and constipation. I have been trying to cross over from

tube feeds to SCD, but she isn't eating enough yet. Her GI is

concerned about her weight, as she hasn't gained or grown in a year,

but every time we increase her feed, her behaviour and sleep

worsens. When we reduce her feed she improves. The GI has given her

a fructose based modular feed, which we were excited about as I

thought it would be a bit more legal than the others she's tried.

However when it arrived, the vitamin pot(glucose syrup), the protein

pot (hydrolised soya) and potassium (sugar) all contain illegals, and

she is worse on it than the others. I am so angry I could scream!!!

I simply can't believe after all the conversations I've had with the

GI about SCD that she would tell the dietician that this feed is

o.k. If I wasn't concerned about her weight, which is my fault for

not giving her the right amount, I would go cold turkey and ditch the

feed right now. However, I will wait a week or so until she puts a

little bit on, to give her a head start, then do the intro, as best I

can, hopefully she will not lose too much weight, and then fingers

crossed, she may start accepting some of the foods, which is also a

problem at this time. I would like to show the GI the evidence, and

also her paediatrician, to have them more onside (I don't think!).

I feel really nervous when we go to see the GI, as I know she isn't

happy about Jazzies weight issue. BTW Jazzie weighs 17.8kg, is

nearly 105cm, and does not look underweight at all. Its just she

hasn't gained anything. I feel a bit better now I've got it off my

chest LOL! Look forward to hearing from you.

Regards Glynis

mam to Jasmine 7 yrs

Diagnosed with Kabuki Syndrome

NG tube fed.

In pecanbread , " pecan post " wrote:

>

> Hi ,

>

> The best way is to provide doctors with scientific articles that

> support the SCD diet. I have quite a collection of such articles.

How

> soon do you need them? I am sorry that a dedicated mother like you

had

> to suffer.

>

> I will do my best to get it all together.

>

> Mimi

> >Do any of you that have to work with a doctor have any advice for

> speaking with them about this diet so that they will not suspect an

> abusive/neglectful intent behind it when it is not going smoothly?

>

>

>

>

> > Has anyone here ever had a medical practitioner turn them into

CPS for doing

> > this diet? I feel like we need the help of the doctors right

now, but we

> > had a neighbor turn us into CPS last year because she felt my

kids were too

> > thin and she heard I had them " on a diet. " This was pre-SCD and

we were

> > feeding the 2 with GI problems a GF/CF (etc.) diet.

> >

> > We were investigated by CPS to determine if our kids were being

> > neglected/abused. Everything was dropped when the investigator

saw the

> > medical records and interviewed us, but I'm sure we would really

be in

> > jepardy if a medical person were to now report us.

> >

> > I get nervous when I take my kids to their doctors (many

upcoming visits).

> > I am honest with them about the dietary changes and I am

concerned that

> > they will think there is a problem with this diet since they did

not

> > prescribe it, and no medical person who is knowledgable about it

is

> > supervising the outcome. My reasons for staying on SCD when it

has been

> > less than successful is that it seems to have unearthed some

underlying

> > problems that could possibly be diagnosed based on how they have

responded

> > to SCD.

> >

> > At this point, I am considering traveling out of state to work

with an SCD

> > doctor so one can help figure out the missing pieces for us, but

in the

> > meantime I have local doctors who are providing care. Do any of

you that

> > have to work with a doctor have any advice for speaking with them

about this

> > diet so that they will not suspect an abusive/neglectful intent

behind it

> > when it is not going smoothly?

> >

> > -

> >

> >

> > ---------------------------------

> > It's here! Your new message!

> > Get new email alerts with the free Yahoo! Toolbar.

> >

> >

[Guest guest]

Mimi,

I could really use those articles also. My son's pediatrician is a stickler for

proof, but she does listen. Is there any was I could get that too? Are there

websites where I can print it out or do I have to get the hard copy from you?

Bonita

Re: question I wish I didn't have to ask...

Hi ,

The best way is to provide doctors with scientific articles that

support the SCD diet. I have quite a collection of such articles. How

soon do you need them? I am sorry that a dedicated mother like you had

to suffer.

I will do my best to get it all together.

Mimi

>Do any of you that have to work with a doctor have any advice for

speaking with them about this diet so that they will not suspect an

abusive/neglectful intent behind it when it is not going smoothly?

> Has anyone here ever had a medical practitioner turn them into CPS for doing

> this diet? I feel like we need the help of the doctors right now, but we

> had a neighbor turn us into CPS last year because she felt my kids were too

> thin and she heard I had them " on a diet. " This was pre-SCD and we were

> feeding the 2 with GI problems a GF/CF (etc.) diet.

>

> We were investigated by CPS to determine if our kids were being

> neglected/abused. Everything was dropped when the investigator saw the

> medical records and interviewed us, but I'm sure we would really be in

> jepardy if a medical person were to now report us.

>

> I get nervous when I take my kids to their doctors (many upcoming visits).

> I am honest with them about the dietary changes and I am concerned that

> they will think there is a problem with this diet since they did not

> prescribe it, and no medical person who is knowledgable about it is

> supervising the outcome. My reasons for staying on SCD when it has been

> less than successful is that it seems to have unearthed some underlying

> problems that could possibly be diagnosed based on how they have responded

> to SCD.

>

> At this point, I am considering traveling out of state to work with an SCD

> doctor so one can help figure out the missing pieces for us, but in the

> meantime I have local doctors who are providing care. Do any of you that

> have to work with a doctor have any advice for speaking with them about this

> diet so that they will not suspect an abusive/neglectful intent behind it

> when it is not going smoothly?

>

> -

>

>

> ---------------------------------

> It's here! Your new message!

> Get new email alerts with the free Yahoo! Toolbar.

>

>

[Guest guest]

I am assembling the research articles inside a website. I hope that it

will be ready soon. I will post the link in a few days.

Mimi

[Guest guest]

,

For a short medical/scientific explanation for the SCD, refer to this link:

http://www.pecanbread.com/scdscience.html

There's an explanation here with pictures for kids (at a kid's level), one for

parents, and one for professionals. Click on the Explanation for Health Care

Professionals to go directly to that one, or scroll down and read them all.

(The kids' explanation is more my speed. ;-)

A pediatrician won't likely read BTVC, but this medical explanation is short

enough and should make sense to an M.D. However, I'll admit that I don't give

any of the specifics of the diet to my daughter's pediatrician. I can tell she

thinks I'm quacky because of all the diets we've been through, so I just keep

quiet about how we're eating now, to not add ammunition to that viewpoint. When

the Dr. compliments us on our daughter's progress, I just say thank you. (My

husband often opens his mouth and starts to mention the diet, because he wants

to share the wisdom and make the world a better place, but I elbow him in the

ribs to shut him up and leave with the doctor's respect.)

Also, know your rights and know that a social worker has no right to enter the

premises or interview your children without a warrant (and I believe a police

officer would need to accompany them to fulfill a warrant). Greet them at the

door with a smile, tell them you'll gladly answer any allegations with paperwork

if there are charges filed. And keep your home neat (on the inside and out) and

your kids smelling as lovely as you can. If you homeschool, join Homeschool

Legal Defense Association(HSLDA). If you don't homeschool, be on good terms

with school teachers and nurse. Mostly, never have a belligerent attitude. If

you're the smiley, friendly neighbor, and it's the belligerent witch down the

street that's making the allegations, your neighbors will step up as character

witnesses against the belligerent neighbor and for the friendly neighbor. And,

again, don't be a zealot about the diet if you truly fear losing your children.

If someone mentions your child being thin, it's okay to white-lie it and say, " I

try to get ny to eat all his dinner, but he just wants to play, play, play,

and I guess he runs off all those calories. " That's an acceptable reason to be

thin in today's society. For validation of the diet, come to this support

group, but don't expect validation from the world of Poptarts. Desiring their

validation is not worth risking your children.

Nannette, SCD 22 months, IBS

daughter, , 15 yo, SCD 22 months, autism

[Guest guest]

Thanks Mimi,

My kids are both being seen next month, although there might be need for a

phone consult prior to then.

-

pecan post wrote:

I am assembling the research articles inside a website. I hope that it

will be ready soon. I will post the link in a few days.

Mimi

---------------------------------

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

tool.

[Guest guest]

Here is the website that I promised:

http://www.microbialinfluence.com/GI/bacteria.html

Please give me any feedback for improvements. Corrections and any

ideas for additional research articles are welcome.

I want to thank Carol F for improving the writing style.

More articles will soon be added. I will soon give the link for

webpages that link the symptoms of ASD to microbial toxins.

Mimi

>

> The best way is to provide doctors with scientific articles that

> support the SCD diet. I have quite a collection of such articles. How

> soon do you need them? I am sorry that a dedicated mother like you had

> to suffer.

>

> I will do my best to get it all together.

..Mimi