Re: Need prayers KiKi update/immuno depressed.

[Guest guest]

Antoinette,

I am sorry to hear about Kiki being so ill. We have had a lot of experience

with hospitalization and SCD--both short and long term stays, so maybe I can

offer some things that have worked for us.

1. I found that during this stressful time, Stage I of the diet worked best

for me and my family. Easier to digest foods are so much gentler to our

already over-taxed and stressed-out bodies. Simple soups and broths, cooked

fruit, very cooked veggies, and water was about all I lived on for six

weeks--but I had the energy to take on the job of taking care of our son.

2. Most hospitals have microwaves for use by the general population. I

realize that many people on this list do not use microwaves, but for a short

time and to stay SCD compliant, they worked for us. Cook fruit, veggies,

etc. in them with a little water, warm up soup, whatever you like.

3. Hotpots and crockpots are a life saver in the hospital. Boil

water/juice for gelatin or tea. Keep soup in a crockpot nice and warm and

ready to eat when you have a minute. Cook nutflour with diluted juice and a

bit of honey in the crockpot for a nice hot " cereal. " I found both for less

than $20 total at Wal-Mart.

4. Mac Houses (or comparable settings) will typically allow

people to use their kitchens to prepare specialized diets if you have a

hospitalized child that you are staying with. Call and explain the

situation, and during off-peak hours, you can run over and cook there. You

may be able to get a crockpot or hotpot from them to borrow--a little harder

to do, but it is possible. They bill you outrageously if you fail to return

it.

5. Ask your nurse for a visit from the social worker on staff. Explain the

diet, and they can help with organic places that will deliver fresh foods or

SCD foods. They can assist with the hospital dietician, as well.

6. Unfortunately, much of the hospital foods is not SCD compliant--beef

patties have additives, scrambled eggs maybe powdered with additives, and

cooked fruitsauces will often have sugar. However, ask the dietician if

they have frozen, rather than canned, veggies. Ask for boiled eggs. Fresh

fruit can be a little less ripe if you cook it in the crockpot.

By keeping it simple, it is possible to keep SCD away from home. Remember

to eat to keep up your much needed strength. Our room became the hot

spot---hot water for tea and hot soup, and I made a few life long friends

over the soup while sharing our stories. :-) Now this never would have

happened without SCD!!!

Hang in there! We will be thinking about you.

whole family SCD 2 years

Mom to Dakota (8--NF, CDD, seizures)

and (6--happy, healthy little brother)

[Guest guest]

Antoinette,

Keep the bananas for later and they will ripen up. Just make it very clear

that all food needs to be approved by you. When I was in the hospital I

requested a boiled egg every morning and they would also put little

individual packages of cheese on the tray too.

There was a fridge in the nurses lounge they let me use too. In there I had

soup broth, grape gelatin and yogurt. I would make a trip there(if I could

walk) every morning for breakfast and then later for snacks etc.

They would put on my tray meat and veggies and after a few days figured out

not to send the rice. They also put toast and cream of wheat on my tray in

the mornings but I just wouldn't eat it.

I am assuming she has an IV in. No worries about that hurting her as it is

bypassing her gut.

Hang in there. There are many of us that have survived the hospital. The

only thing you need to wary of is getting Clostridia. It is virulent in

hospitals.

Charlene

UC 8 years

SCD 5 1/2 years

> Dear List mates and SCD pals,

>

> We need your prayers right now. Little 2 year old KiKi, our daughter, is

> in the hospital...again. She caught a GI virus that has caused

> complications with her intestinal condition and already vulnerable state.

> As many already know, we are just 4 months out SCD. making great strides

> in her recovery from celiac/damaged intestines and ASD status. Although

> we have made much progress, she was still vulnerable and still very immuno

> depressed. Proof that it takes time to heal.

>

> She couldn't fight it on her own at home. We are going on day three

> tomorrow. It has not been easy being SCD in the hospital. Hubby is

> helping much, bringing in much of what we eat. We truly do not know when

> we will be going home. Had a horrible night full of many set backs much

> pain. I am very tired.

>

> How did others survive the hospital?

>

> Is the bacon in the cafeteria safe...it looks crispy...do we dare trust

> it?

>

> How long did it take other kiddos to build up their immune systems? It

> seems like if a bug walks by, she catches it, and not only catches

> it...gets HIT BY A TRUCK. Others experience with this very much

> appreciated at this time.

>

> None of the Bananas are SCD legal (arrive green to the room!)...so much

> for the banana baby!...bringing most everything from home. Some how

> staying 100% adhered to SCD....God help us. Not all Doctors get it, but

> they are cooperating.

>

> My family would appreciate ANY suggestions, strength, encouragement, hope.

>

> Antoinette and parents (both celiac) to:

> KiKi-2 celiac mild autism, -4 celiac/adhd, Bubbles-1 hyperekplexia

> SCD 2/06

>

>

[Guest guest]

its not necessarily immunodepression as this virus has been going

around world wide and has some nasty ongoing nuerological

repercussions and is part of a new wave of viruses having some bird

flu genes in

undiluted freshly squeezed lemon juice from decent lemons helps,

would some mycellised vitamin a

you are under the weather and things are difficult but you may get a

sense of how you have wasted time on this board with posts that have

little to do with your real needs and instead of putting in place

well recognised supplements like mycel a and reading across several

message boards to see how parents cope with various issues like

this................

your posts hurt to read, i wish i could put it another way.

3 days can be quite normal for the severe phase of this gastro, where

there is immuno deficency it can go on for quite a bit longer

one of the reasons i put so much trouble into supplementation is to

avoid medicine, hospitals and doctors cause they lack finesse and

thier treatements are too coarse and inflict too much damage

>

> Dear List mates and SCD pals,

>

> We need your prayers right now. Little 2 year old KiKi, our

daughter, is in the hospital...again. She caught a GI virus that has

caused complications with her intestinal condition and already

vulnerable state. As many already know, we are just 4 months out

SCD. making great strides in her recovery from celiac/damaged

intestines and ASD status. Although we have made much progress, she

was still vulnerable and still very immuno depressed. Proof that it

takes time to heal.

>

> She couldn't fight it on her own at home. We are going on day

three tomorrow. It has not been easy being SCD in the hospital.

Hubby is helping much, bringing in much of what we eat. We truly do

not know when we will be going home. Had a horrible night full of

many set backs much pain. I am very tired.

>

> How did others survive the hospital?

>

> Is the bacon in the cafeteria safe...it looks crispy...do we dare

trust it?

>

> How long did it take other kiddos to build up their immune

systems? It seems like if a bug walks by, she catches it, and not

only catches it...gets HIT BY A TRUCK. Others experience with this

very much appreciated at this time.

>

> None of the Bananas are SCD legal (arrive green to the room!)...so

much for the banana baby!...bringing most everything from home. Some

how staying 100% adhered to SCD....God help us. Not all Doctors get

it, but they are cooperating.

>

> My family would appreciate ANY suggestions, strength,

encouragement, hope.

>

> Antoinette and parents (both celiac) to:

> KiKi-2 celiac mild autism, -4 celiac/adhd, Bubbles-1

hyperekplexia SCD 2/06

>

>

[Guest guest]

Dear Antoinette and ,

I have learned very recently how powerful the combination of prayer and fasting

can be to bring about healing. The most preferred fasting is on bread and water

on Wednesdays and Fridays. It takes time to work up to both days and you should

eat nutritious bread. I make quinoa flour bread with spinach.

I'll pray for you!

God bless!

tte

Re: Need prayers KiKi update/immuno depressed.

its not necessarily immunodepression as this virus has been going

around world wide and has some nasty ongoing nuerological

repercussions and is part of a new wave of viruses having some bird

flu genes in

undiluted freshly squeezed lemon juice from decent lemons helps,

would some mycellised vitamin a

you are under the weather and things are difficult but you may get a

sense of how you have wasted time on this board with posts that have

little to do with your real needs and instead of putting in place

well recognised supplements like mycel a and reading across several

message boards to see how parents cope with various issues like

this................

your posts hurt to read, i wish i could put it another way.

3 days can be quite normal for the severe phase of this gastro, where

there is immuno deficency it can go on for quite a bit longer

one of the reasons i put so much trouble into supplementation is to

avoid medicine, hospitals and doctors cause they lack finesse and

thier treatements are too coarse and inflict too much damage

>

> Dear List mates and SCD pals,

>

> We need your prayers right now. Little 2 year old KiKi, our

daughter, is in the hospital...again. She caught a GI virus that has

caused complications with her intestinal condition and already

vulnerable state. As many already know, we are just 4 months out

SCD. making great strides in her recovery from celiac/damaged

intestines and ASD status. Although we have made much progress, she

was still vulnerable and still very immuno depressed. Proof that it

takes time to heal.

>

> She couldn't fight it on her own at home. We are going on day

three tomorrow. It has not been easy being SCD in the hospital.

Hubby is helping much, bringing in much of what we eat. We truly do

not know when we will be going home. Had a horrible night full of

many set backs much pain. I am very tired.

>

> How did others survive the hospital?

>

> Is the bacon in the cafeteria safe...it looks crispy...do we dare

trust it?

>

> How long did it take other kiddos to build up their immune

systems? It seems like if a bug walks by, she catches it, and not

only catches it...gets HIT BY A TRUCK. Others experience with this

very much appreciated at this time.

>

> None of the Bananas are SCD legal (arrive green to the room!)...so

much for the banana baby!...bringing most everything from home. Some

how staying 100% adhered to SCD....God help us. Not all Doctors get

it, but they are cooperating.

>

> My family would appreciate ANY suggestions, strength,

encouragement, hope.

>

> Antoinette and parents (both celiac) to:

> KiKi-2 celiac mild autism, -4 celiac/adhd, Bubbles-1

hyperekplexia SCD 2/06

>

>

[Guest guest]

Please do not spam this list.

tte Pryor wrote: Dear Antoinette and ,

I have learned very recently how powerful the combination of prayer and fasting

can be to bring about healing. The most preferred fasting is on bread and water

on Wednesdays and Fridays. It takes time to work up to both days and you should

eat nutritious bread. I make quinoa flour bread with spinach.

I'll pray for you!

God bless!

tte

[Guest guest]

> Dear Antoinette and ,

>

> I have learned very recently how powerful the combination of prayer

> and fasting can be to bring about healing.  The most preferred fasting

> is on bread and water on Wednesdays and Fridays.  It takes time to

> work up to both days and you should eat nutritious bread.  I make

> quinoa flour bread with spinach.

>

> I'll pray for you!

>

> God bless!

>

> tte

Julitte,

I know Antoinette appreciates your prayers and support but we neither

fast nor eat quinoa on this diet so will pray extra hard instead :-)

>  

Carol F.

Toronto, celiac, SCD 6 years

[Guest guest]

tte,

I am pretty sure quinoa is illegal on SCD although I do agree with your

ideas of prayer and fasting as long as done with the correct motivation.

Charlene

Dear Antoinette and ,

I have learned very recently how powerful the combination of prayer and

fasting can be to bring about healing. The most preferred fasting is on

bread and water on Wednesdays and Fridays. It takes time to work up to both

days and you should eat nutritious bread. I make quinoa flour bread with

spinach.

I'll pray for you!

God bless!

tte

[Guest guest]

Hi Antoinette;

So sorry to hear about your little one! I hope she is feeling better today.

Glad to hear your Husband has been able to supply you with food at the hospital.

Just keep eating stuff prepared from home and you'll make it through this!

We're pulling for you!

Keep us updated on her progress -

Kim

Need prayers KiKi update/immuno depressed.

Dear List mates and SCD pals,

We need your prayers right now. Little 2 year old KiKi, our daughter, is in

the hospital...again.

[Guest guest]

Antoinette and ,

I am praying for you for strength and peace and for KiKi for speedy

recovery.

3:18 He who believes in Him [who clings to, trusts in, relies

on Him] is not judged [he who trusts in Him never comes up for

judgment; for him there is no rejection, no condemnation--he incurs

no damnation];

AMP

Rom 8:1 THEREFORE, [there is] now no condemnation (no adjudging

guilty of wrong) for those who are in Christ Jesus, who live [and]

walk not after the dictates of the flesh, but after the dictates of

the Spirit.

AMP

Be blessed

Sandy M.

>

> Dear List mates and SCD pals,

>

> We need your prayers right now. Little 2 year old KiKi, our

daughter, is in the hospital...again. She caught a GI virus that

has caused complications with her intestinal condition and already

vulnerable state. As many already know, we are just 4 months out

SCD. making great strides in her recovery from celiac/damaged

intestines and ASD status. Although we have made much progress, she

was still vulnerable and still very immuno depressed. Proof that it

takes time to heal.

>

> She couldn't fight it on her own at home. We are going on day

three tomorrow. It has not been easy being SCD in the hospital.

Hubby is helping much, bringing in much of what we eat. We truly do

not know when we will be going home. Had a horrible night full of

many set backs much pain. I am very tired.

>

> How did others survive the hospital?

>

> Is the bacon in the cafeteria safe...it looks crispy...do we dare

trust it?

>

> How long did it take other kiddos to build up their immune

systems? It seems like if a bug walks by, she catches it, and not

only catches it...gets HIT BY A TRUCK. Others experience with this

very much appreciated at this time.

>

> None of the Bananas are SCD legal (arrive green to the room!)...so

much for the banana baby!...bringing most everything from home.

Some how staying 100% adhered to SCD....God help us. Not all

Doctors get it, but they are cooperating.

>

> My family would appreciate ANY suggestions, strength,

encouragement, hope.

>

> Antoinette and parents (both celiac) to:

> KiKi-2 celiac mild autism, -4 celiac/adhd, Bubbles-1

hyperekplexia SCD 2/06

>

>

[Guest guest]

Sorry, Lucy Rosset's breads would be legal. Garlic-Parmesan, Onion-Parmesan,

etc. made with almond flour.

Re: Re: Need prayers KiKi update/immuno depressed.

tte,

I am pretty sure quinoa is illegal on SCD although I do agree with your

ideas of prayer and fasting as long as done with the correct motivation.

Charlene

Dear Antoinette and ,

I have learned very recently how powerful the combination of prayer and

fasting can be to bring about healing. The most preferred fasting is on

bread and water on Wednesdays and Fridays. It takes time to work up to both

days and you should eat nutritious bread. I make quinoa flour bread with

spinach.

I'll pray for you!

God bless!

tte

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info<http://www.breakingtheviciouscycle.info/\

>

and

http://www.pecanbread.com<http://www.pecanbread.com/>