Re: Trying to get it together

[Guest guest]

I have not been in this situation, but since the tube feedings still contain

" illegals " , I would start with the intro diet when that time comes.

Since it is common to lose weight in the beginning of SCD, I would want to be

sure she is absolutely stable before changing the plan. She has just gained

weight and is feeling well. I doubt any of her doctors would tolerate any weight

loss if the NG tube comes out.

There is a learning curve with SCD. It takes time to learn to cook and adjust to

new recipes and a new way of eating/shopping/cooking.

Your doctors are trying to transition her back to a regular diet without risking

weight loss. This is why they are doing a partial regular diet with tube

feedings. The reason for a peg is that it is safer than an NG tube in the long

run. A tube in the throat can be irritating and risk aspiration. A peg is also

temporary and can be removed eventually.

One option would be to work with the doctors and transition to SCD with the

night feedings according to their plan. Note that SCD does not work unless

adhered to 100%, so even after the peg comes out, you would have to restart

with intro. But you can transition her to SCD foods while the peg is in- picking

the ones that are easiest on the gut- stage 1 foods. At this time you can be

learning to cook SCD foods, SCD yogurt and so on, and these foods are naturally

easy to digest.

Once her doctors are happy with her progress, and she is eating SCD, you can go

100% SCD. Do intro for only a few days and then progress to stage 1 foods that

at this time you would be used to.

One could say that transitioning to 100% SCD without the tube feedings would be

the quickest healing, but you may backtrack with weight and this may not be the

best thing for her right now after being so sick she needed tube feedings. SCD

was never intended to go against medical recommendations. Many here do SCD and

medication as well.

Pecanbread.com is very helpful and there is a yahoo group as well for parents

with children on SCD. Note that this is for children with ASD and is non dairy.

For GI issues alone, we can have legal cheeses and SCD cows milk yogurt.

PJ

>

> My daughter who is 6 was diagnosed with Crohn's disease in April. She is

currently on an NG feeding tube for 12 weeks. She was very ill, and had lost

almost 10lbs. Right now her symptoms have disappeared, and her energy has

returned. The Doctors want to place a Peg tube in her belly, and continue on

night feeds 4 out of 7 nights a week, with a healthy diet during the day.

>

> She is also seeing a Naturopath, that has started her on some supplements and

pro biotics.I would rather remove the NG tube and try the SCD and see how she

does with just doing that and the supplements.

>

> So my questions are 1.Is there anyone out there who is in or has been in a

similar situation...if so what did you do??

> 2. Because all her symptoms have disappeared but she hasn't had solid food in

3 months, should I start with the beginners diet, or will she be ok to try

everything.

>

[Guest guest]

Thanks PJ for the advice...it makes a lot of sense

>

> My daughter who is 6 was diagnosed with Crohn's disease in April. She is

currently on an NG feeding tube for 12 weeks. She was very ill, and had lost

almost 10lbs. Right now her symptoms have disappeared, and her energy has

returned. The Doctors want to place a Peg tube in her belly, and continue on

night feeds 4 out of 7 nights a week, with a healthy diet during the day.

>

> She is also seeing a Naturopath, that has started her on some supplements and

pro biotics.I would rather remove the NG tube and try the SCD and see how she

does with just doing that and the supplements.

>

> So my questions are 1.Is there anyone out there who is in or has been in a

similar situation...if so what did you do??

> 2. Because all her symptoms have disappeared but she hasn't had solid food in

3 months, should I start with the beginners diet, or will she be ok to try

everything.

>