Re: Diet Concerns Pre-Scope/Thinking of Colonoscopy for son

[Guest guest]

Hello,

My 3 year old has been on SCD for 2 months now. He had a test done

by Great Smokey Labs which tested for inflammation in his intestines,

and it came back high, indicating possible inflammatory bowel

disease. We have not been to a gastroentologist, but I am feeling

more and more that maybe we need to, if not just for us, for others

(grandparents) who are having a problem with this diet. It is very

hard to do the diet anyway, but even harder when your parents are so

skeptical and hurtful. I understand it, but it still hurts. Since

my son has not been diagnosed with anything, they just don't

understand. I am thinking maybe we really need this confirmation for

everyone involved, including us.

I am just concerned since Abraham is so young. What would they do?

And how would the gastroentologist react to his being on this diet,

etc. He has not been diagnosed ASD, although a DAN doctor I went to

in Nashville said he would be considered high functioning, whatever

that means.

I know in my heart he needs to be on this diet, it is helping him so

much, but maybe I need to consider finding out what exactly is going

on in inflammatory wise.

Any advice is greatly appreciated. I just spent a horrendous day

with my parents, basically my son going nuts, bringing my dad to the

conclusion that he sees no difference in my son, and that this diet

is a waste of my time. Oh, but I praise God. He is my strength.

And I do see positive changes!

Tina

SCD 2 months now with boys

...

> Hi Mae Lynn,

>

>

>

> > My son Henry, 8, ASD is scheduled for a colonoscopy/endoscopy on

> > Tuesday at Mass General with Dr. Buie. I am very excited about

the

> > potential information that we will be getting. However, I am a

> little

> > nervous about the prep that we have to do. Henry has to have only

> > clear liquids for a whole day before. He has to drink a magnesium

> > citrate product from the pharmacy and take a senna laxative

> > (compounding pharmacy said these look ok). Besides the issue

> > of " bottomless pit boy " not having solid food for that long, and

> > having to explain it to him, I am more concerned because the list

> of

> > allowable foods contains very few things he can have, due to his

> > dietary restrictions. He has been GFCF or SCD for almost 4 years.

> >

> > Here is the list with my comments:

> >

> > Water - OK

> > Soda, Koolade, Sport Drinks - Umm, no for obvious reasons

> > Jello - no, gelatin not OK

> > Italian Ice - are there acceptable brands?

> > Bouillion or fat free broth - ditto, any GFCF brands?

> > apple or white grape juice - Henry does not consume grapes or

> apples

> > due to phenols

> > popsicles, slush - are there any acceptable ones?

> > pedialyte, ricelyte - these have sugar, coloring, etc., right?

>

> When I did my colonoscopy prep I had two oral fleet enemas and was

> allowed clear fluids as long as they were not red or purple. I

made

> my own broth. First I strained it and then I ran it through a

(very

> clean) dishcloth. To clarify the broth you could also run it

> through a few layers of cheesecloth. You want to remove all

> particles so that the remaining fluid is clear, not cloudy.

> Probably why the nurse said the home broth wasn't acceptable most

> people don't do the second step to clarify.

>

> I also used white grape juice because it is clear - but that's not

> any good for you. I haven't tried to clarify pineapple juice or

> pear juice in the same way but it may work. If it does you may be

> able to mix it with club soda for a drink. I can't imagine why

they

> won't let you make your own gelatin if " jello " is acceptable.

> Jello is made with gelatin. If you can find a clear drink you may

> be able to make your own " jello " , popsicles etc.

>

> Sheila

>

> >

> > I had been very comfortable with the idea of it all until I spoke

> to

> > one of the nurses yesterday and she told me that the two main

> things

> > that I had planned on giving him were not OK (pear juice and I

> wanted

> > to make homemade broth with lots of nutritious veggies, strained

> of

> > course).

>

> Sheila

[Guest guest]

Tina,

Where I live it is not easy to get a child scoped. With no blood in

the stools and no chronic D, my kids were not scoped.

I understand the frustration of having family think you are nuts.

What about a completely different approach? Do you have the

type of relationship with them where you could just ask them for

their support even though THEY don't think it is necessary.

Perhaps, you could talk to them about how SCD is a very healthy

diet and show them some of the recipes you will be making for

him (like avocado meatloaf and sneaky veggie pancakes).

Perhaps if they see that he will not be deprived of all treats and

that the food he will be eating will be nutritious, maybe they could

just agree to disagree, but at the same time be supportive and

not pressuring you to change your mind.

Grandparents also go through denial. It is easy to think a child is

willfull or just undisciplined when you don't live with a child 24/7.

They may never buy into the fact that diet can help him, but

maybe they could just agree to not discuss it and to accept your

choice for him (much like they would have to do if you decided to

become a vegetarian or something). Since you are not harming

him, maybe that can just agree to let it be.

Unless you can afford to get in to see one of the Autism GI

doctors (Krigsman, Buie, etc.) I wouldn't waste your time and

energy at a GI office. The majority of them will side with your

parents saying that diet makes no difference whatsoever.

Jody

mom to -5 and -7

SCD 16 months

[Guest guest]

Thanks, Jody for your response. That does help me a lot. I think my

parents are trying, but they just don't understand, as you said. My

father especially is hurtful. Even today, I said, " We just don't

know what Abraham could be like right now without this diet, " and he

said, " Exactly like he is now. " I just broke down and cried. I had

to leave the room, it was painful, more painful than anything else he

has ever said in a long time. He said he was sorry, and I know that

he was, but my, it was devastating to hear that. Oh well. As you

said, they don't live with Abraham and only see him about once a

month or twice a month.

I think you are probably right about the GI doc. I will just

continue on led by the Lord, and trust in Him to do the healing.

God bless you and thanks. Good night.

Tina

SCD 2 months.

> Tina,

>

> Where I live it is not easy to get a child scoped. With no blood

in

> the stools and no chronic D, my kids were not scoped.

>

> I understand the frustration of having family think you are nuts.

> What about a completely different approach? Do you have the

> type of relationship with them where you could just ask them for

> their support even though THEY don't think it is necessary.

> Perhaps, you could talk to them about how SCD is a very healthy

> diet and show them some of the recipes you will be making for

> him (like avocado meatloaf and sneaky veggie pancakes).

> Perhaps if they see that he will not be deprived of all treats and

> that the food he will be eating will be nutritious, maybe they

could

> just agree to disagree, but at the same time be supportive and

> not pressuring you to change your mind.

>

> Grandparents also go through denial. It is easy to think a child

is

> willfull or just undisciplined when you don't live with a child

24/7.

>

> They may never buy into the fact that diet can help him, but

> maybe they could just agree to not discuss it and to accept your

> choice for him (much like they would have to do if you decided to

> become a vegetarian or something). Since you are not harming

> him, maybe that can just agree to let it be.

>

> Unless you can afford to get in to see one of the Autism GI

> doctors (Krigsman, Buie, etc.) I wouldn't waste your time and

> energy at a GI office. The majority of them will side with your

> parents saying that diet makes no difference whatsoever.

>

> Jody

> mom to -5 and -7

> SCD 16 months