Re: infraction-suggestions needed

June 13, 2006

I have a backpack cooler filled with food at all times, and go everywhere, plop

right down outside a libary, eat in a health food store, go to a movie theatre,

go to a restaurant and order water...no one hassles me. Extra enzymes.

marrazzo5 wrote:

Hi All, I am so upset tonight a family member was watching my son and

gave him crackers-4 wheat thins--She is upset also. Do I give my son

anything? I remeber reading to just go on with the diet as usual. What

do I do about feeling so alone with this diet obviously people are not

listening to me. Sometimes with the diet I feel like I can't do

anything,going places and having to leave my son is never easy. Sorry I

am frustrated and tired of feeling alone with my son and the diet.

Thanks to all for listening ,it brings some comfort to know there are

others out there who understand. Toni mom to Matteo ASD 4 yrs old SCD

since Oct/05

Summer's Family, SCD 08/04 http://health.groups.yahoo.com/group/openblooms/

__________________________________________________

June 13, 2006

The first time one of my kids ate illegals I was told to just go

on. We had a day of not so fun but other than that it was ok.

I totally understand the felling alone. The adults in our home are

in support but don't always understand the importance of NO

infractions. I battle twice a week with Church people almost

without fail and that gets pretty old. Last Sunday my kids class

was fed pop tarts for their snack. I had sent snacks for my two and

they ate them but the teacher later told me that h was

lamenting not being able to eat pop tarts as it is her favorite(not

even in the old days). The teacher very sympatheticly told her that

she would be able to have them again soon. GRRRRRRRRRRRR I don't

know, there may be a day when we will feel that we can reintroduce

some things BUT IT WON'T BE POP TARTS!!!!!

Well, that is my rant for the day.

Sandy M.

>

> Hi All, I am so upset tonight a family member was watching my son

and

> gave him crackers-4 wheat thins--She is upset also. Do I give my

son

> anything? I remeber reading to just go on with the diet as usual.

What

> do I do about feeling so alone with this diet obviously people are

not

> listening to me. Sometimes with the diet I feel like I can't do

> anything,going places and having to leave my son is never easy.

Sorry I

> am frustrated and tired of feeling alone with my son and the diet.

> Thanks to all for listening ,it brings some comfort to know there

are

> others out there who understand. Toni mom to Matteo ASD 4 yrs old

SCD

> since Oct/05

>

June 13, 2006

Hi Toni:

I know exactly how you feel as I felt the same way on Sunday when my son,

Clay, 4, had his first gluten infraction with a quarter of a plain bagel! I

panicked and tried to make him throw up--almost losing a finger in the process.

Then thought to give him an enzyme I had but never used before, though it was

1hr and 15 min after the infraction before I did so. Then I waited for the

worst.

I got lucky. Clay had no noticeable reaction. I expected behavioral and

pooping problems. Maybe the enzyme worked after all. Maybe he had healed

enough to withstand the infraction, though not enough of course to stop scd. I

did hear from others who came to my rescue that often a gluten infraction takes

about 6 hours to " hit " behaviorally and can take up to 6 weeks for the bowel to

recover. As my son is not too verbal, I can't discuss how he feels and only

hope that he's okay inside. You've been doing the diet awhile, so there's been

some real healing already and 4 wheat thins are less that the quarter bagel, so

I hope you have the same luck.

No one will ever understand this diet and how hard our lives are unless

they are living it with you 24/7. I get frustrated too, but its just wasted

emotion. No amount of lecturing or teaching will make people understand.

That's why we so rarely leave

the kids and we rarely go out as a family too. Its sad, and I just hope and

believe that it will change and get better as Clay grows and recovers on scd and

that this period of imprisonment is temporary.

What I do to help reduce the chance of an infraction is write up very

detailed instructions for sitters when we do have one, even if its family. You

know how confusing the diet can be to those of us who are most motivated to make

it work, so imagine how mind-boggling it is to others? (Most people think wheat

is healthy!) Write everything down! Label all legal foods, drinks, and snacks

that Matteo can have and put them in one location so there is no confusion. Do

not allow any sitters to eat illegal things in his presence if it is your house

or get the stuff out of the house while you're not there. If its someone else's

house, see if its ok if you provide scd legal snacks for all other kids there,

so everyone eats the same legal stuff.

Without being rude, be firm with anyone you entrust Matteo to about the

need to strictly adhere to this diet. Its hard to read " tone " over the

internet, but it almost sounds like you are so thankful for the help from the

family member who babysat (and that's understanable since we all need help and

many rarely get it!) that maybe you are afraid to assert yourself regarding the

diet's importance? If I'm off base, I apologize. But,if you tell them that he

will have 6 weeks of diarrhea and days of behavioral issues if they allow him to

eat anything illegal, maybe they will resist the " helpful " urge they have to

sneek ice cream or cake in to him.

I hope Matteo is ok tonight. Keep us posted. (Hugs to you)

Tracey, mom of Clay, 4, asd, scd 8/05