Intro from new member

[Guest guest]

Hi everyone,

I am new to this list, new to SCD, and feeling a bit overwhelmed

right now! I am familiar with GFCF, but there clearly is much new

to be learned. I have ordered the Breaking the Vicious Cycle book

and the Eat Well, Feel Well recipe book. I am really looking

forward to getting those and preparing to start this diet with my

son.

My son is 5 1/2 years old and is autistic. He was also born

prematurely at 26 weeks gestation and had many medical

complications. He was on antibiotics pretty much monthly for his

first three years, along with many courses of oral prednisone for

his severe lung complications, had a tracheostomy tube for two

years, needed a ventilator for almost three years and supplemental

oxygen for that long as well. He still gets twice daily steroid

nebulizer treatments as well as twice daily albuterol/atrovent

nebulizer treatments. He is also tube fed and was given commercial

formulas for his first five years. Along with his lung disease he

also has had two surgeries for severe reflux. Prior to his second

surgery he was vomiting 15-20 times a day and frequently aspirating

through his tracheostomy tube. I could connect his feeding tube

sometimes up to four hours after his previous feeding and I would

get fresh looking formula flowing back out of his stomach, as if he

hadn't even begun to digest it.

Last fall I switched him to a pureed foods diet. He has been on

this for about six months now and seems much healthier and more

comfortable overall than he ever was with commercial formulas.

Prior to switching to pureed foods he had been on an elemental

formula for kids who have digestive difficulties for over a year.

This was a GF/CF formula, and was mainly corn syrup with some soy

protein and a bunch of amino acids and vitamin/minerals added. He

gained weight very well on this formula but still had many problems

diegestion wise. I have also been giving him probiotics, fish oil

and recently started kombucha and white tea as well.

At this point he is tolerating the pureed foods very well but still

has a lot of bowel difficulty. He will have very large, mushy,

SMELLY stools several times a day for a few days, then have a day or

two where he has very sticky, smaller stools or maybe even skip a

day. He gets very gaggy and uncomfortable if he doesn't get at

least 32 ounces of water a day and will again have those less

frequent, sticky stools. He is non-verbal so is not able to

vocalize how he is feeling, but he has a much harder time with his

feedings and is very gaggy and wretches a lot.

I am very eager to start this diet with our son. It will mean a big

change from his current diet and supplements, so I am a little bit

nervous about it but since he does not eat orally I won't have to

worry about him refusing the foods anyway. One of my biggest

worries is how to keep up with his calorie requirements. He

requires approximately 1,600 calories a day to maintain his weight.

Due to his lung disease he burns a lot of calories doing ordinary

activities since it requires a much higher energy output from him.

He loses weight very quickly and rapidly becomes weak and tired if

he gets too low in his weight. Since pureed foods cannot be put

through the feeding pump for long, slow feedings (with his

commercial formulas we often had to do 24-hour feedings to avoid the

GI discomforts) I have to get his feedings split into approximately

five or six 8-ounce feedings per day, so they need to be fairly

calorie dense to meet his requirements. Is this all part of his

digestive trouble? Will this improve as he gets farther along in

this process? Or will this not really be a problem anyway so I

won't need to worry about it?

I am looking forward to the support this board can offer and having

people to help us along the way. Thanks for letting me join!

Cathy

[Guest guest]

Welcome, Cathy!

Yes, indeed.... there is a lot to learn, but it's pretty simple when you get the

hang of it.

I don't have answers to all of your questions, but it does seem to make logical

sense that he will be able to absorb and utilize his nutrients better as time

goes on, and his gut heals with SCD.

One of your major concerns is calories... and I have a couple of suggestions

there. I think the idea of virgin coconut oil and homemade coconut milk added to

his diet would be great.... a good source of calories and good nutrients.

Avocado is something you'd be able to add fairly early on, too. The nut butters

would be good additions.... and can probably be blended in with pureed foods to

go into the tube, though I'm sure you have to dilute and thin everything so it

will flow properly. I haven't experienced tube feeding myself, so am not

completely familiar with all the ins and outs. Another thing to consider is, if

you're able to include dairy, making the wonderfully healing SCD yogurt. Goat

milk yogurt is what we generally recommend for the kids who've been off all

dairy prior to starting SCD, but if your son can tolerate cow milk yogurt, you

could make SCD yogurt from WHOLE milk, to get more calories in.

It sounds like you've improved his diet quite a lot over the corn syrup laden

formulas and such. Good for you! I'm sure it will be very exciting for you to

read the book and learn more.

Again, welcome to the group!

Patti, list moderator

Intro from new member

One of my biggest

worries is how to keep up with his calorie requirements. He

requires approximately 1,600 calories a day to maintain his weight.

Due to his lung disease he burns a lot of calories doing ordinary

activities since it requires a much higher energy output from him.

He loses weight very quickly and rapidly becomes weak and tired if

he gets too low in his weight. Since pureed foods cannot be put

through the feeding pump for long, slow feedings (with his

commercial formulas we often had to do 24-hour feedings to avoid the

GI discomforts) I have to get his feedings split into approximately

five or six 8-ounce feedings per day, so they need to be fairly

calorie dense to meet his requirements. Is this all part of his

digestive trouble? Will this improve as he gets farther along in

this process? Or will this not really be a problem anyway so I

won't need to worry about it?

I am looking forward to the support this board can offer and having

people to help us along the way. Thanks for letting me join!

Cathy

[Guest guest]

Hi Cathy, I am a new member too, and my 7 year old daughter is fed by

NG tube. I need to increase her calories for weight gain, but have

refused to give her any more elemental feed than she is already on as

it affects her behaviour. Her dietician has given us Calogen, which

is fat. She can have up to 400 calories of this per day. Reading

Patti's reply, I am going to suggest that we try the coconut oil for

her instead of Calogen, as it has more nutrients. If you to to the

Breaking the Vicouse Cycle website, and look up Coconut Oil on the

Knowledge Base, Elaine has put a website, coconut-info.com which has

good info on this, such as its anti-viral, anti-bacterial etc

properties.

With our daughter, I am introducing the SCD to her and will reduce

the amount of elemental feeds as she becomes more used to this diet.

As She has not had the opportunities of a diverse diet due to her NG

tube, she is extremely choosy and retches at new textures and tastes,

so I imagine this will be slow process. I'm using bribery with her

at the moment, and she is making small steps in the right direction.

I hope you continue to make progress, and pray that one day we will

both have kids without feeding tubes that can eat a good SCD.

Good Luck,

Glynis.