Re: Update 2/ Need prayers KiKi update/immuno depressed.

[Guest guest]

Guys, I want to thank you for all the wonderful support and suggestions,

especially you who took the most time to give us ideas on surviving....we

are utilizing them. The Prayers brought tears to my eyes. It truly helps to

know that others care. God is good.

We thought at one time, thanks to witnessing a miracle the first four months

of strict SCdiet, that we where " set free " from little KiKi having problems.

Call it a " pink cloud " , call it " excitement', call it

" rejoicing " ... " denial " ....witch ever. A little of all to be honest. SCD has

done such a good job thus far, but now like many on this serve we now realize

that her condition is much more complicated. I am fallible and human, and I

trust that others have forgiveness for past " cockiness " . Life has humbled me

again.

It takes time to heal on SCD. Like I said in past posts, if we ever HAD TO,

look out side the BTVC book we would. WE now do. We are still 100% compliant

to SCD and thanks to our initial 4 month jump start with success, will remain

true. But KiKi is obviously having other things going on....related or not...it

is to be determined....regardless she still eats the same healing diet: SCD.

Mimi, Jody and those others who knew Elaine, plus many doctors, have been

helping us greatly. KiKi is truly having set back. Celiac crises, VIRUS,

Deliriums, rages, stimming, all back. They tell us to hang in there that she

will be back to normal...I trust those who walked before us, and will not stray,

from what has worked for 60 years.

At this time we are having to do interventions that are all SCD " legal " , but

definitely would be OT, so I don't mention them right now.

The hardest thing thus far in this hospital is trying to find a spotted

Banana and a REAL EGG! lol!

God Bless all, Antoinette and (celiac), parents to -4 celaic/adhd

KiKi-2 celiac/asd Bubbles-hyperekplexia All SCD 2/06

[Guest guest]

You are welcome, Antoinette.

I hope that your enthusiasm persists and that you do not get burned out.

Take care of yourself, as well--you have your hands full. But, one of my

favorite slogans from a national autism association is: If you think my

hands are full, you should see my heart!

In response to a former post regarding exercise--have you consulted the

school district for evaluation and testing for KiKi? She would fall under

the Birth to Three category, but if she does have true hypotonia, then she

might be elligible for physical and occupational therapy from the school

district. Maybe speech, if this is a concern.

I mention this only because the earlier the intervention, the better the

results. Also, our Speech Path, PT and OT have done wonders for helping us

with sensory issues and defending our diet choices (GFCF first and then

SCD). They have more experience and exposure to alternative therapies than

many gen. ed. teachers, and ours became true advocates. Also, the earlier

you work with them, the better they get to know you. Having a solid team

behind you when you hit the school system is a Godsend!

You have a lot to think about and time to do it--just a suggestion to

consider while you are rocking KiKi! :-)

SCD 2 years

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

and (happy and healthy)

[Guest guest]

Dearest and all, thank you again for your continued support. We need

all the support we can get right now. People like you are helping us to " not

burn out " . Those who preferred to respond off serve have been a great help too.

You said it best: " If you think my hands are full, you should see my heart! "

These kids are sick, I wish more realized it. Thank God Elaine realized it.

SCD takes time. I didn't truly realize what that meant until now.

We did get her evaluated by district. She was to start speech/PECS already,

became sick...hospital. We wait for her to heal again, before we can even do

the other therapies, like PT. I agree early intervention makes KiKI as very

lucky girl.

Kiki, has a strange problem, she never liked to be rocked in the rocking chair.

A matter of fact she is the opposite of some ASD kids. Movement does not

comfort her, such as rocking or swinging. The docs think that her vestibular

system is " over active " instead of like with most ASD kids, under active.

So...no rocking...I hold her in bed, she refused the crib....I am allowed to

" sleep " with her. What sleep I am getting lol!

****We are in the midst of a true Celiac Crises on top of the VIRUS, trying to

figure out if she has had an SCD infraction, or what is going on. Anybody with

help, or ideas fire away. Testing has not been helpful.

Thanks, Antoinette (celiac) mother to KiKi -2 celiac/asd

[Guest guest]

Antoinette,

Everytime I am really sick, I use bone marrow broth. I think this would be

easy for Kiki to digest and absorb nutrients from, and once you have made a

batch, you can keep it going in a crockpot in the room.

Also, a good room purifier is to load a bunch of sliced ginger with water into

a crockpot and cook. The steam from the simmering ginger helps to kill some

germs in the air.

I don't know if you have essential oils, but taking a spray bottle, fill with

water and antimicrobial essential oils...some recommendations are orange, lemon,

cypress, cinnamon, clove, rosemary and thyme are some good ones, and spray the

parameter of the room where germs miss the mop (by the edges). You do not need

all those essential oils, just listing some you can choose from. I also use this

to wipe down things like the railing of the bed, anything you guys touch.

I don't know if there are any SCDers near you who would be able to help with

any of these preparations, you might ask Grammy Bauer if there are.

I think asking the doctors and nurses to wear a face mask when in Kiki's

hospital room is appropriate.

You can dab a little diluted essential oil in a carrier oil such as olive oil

or almond oil, and spread under Kiki's nostrils, your families nostrils too. It

will help a tiny bit with killing microbes one inhales.

Summer

Here is the recipe:

First of all, the bones are best cooked for 24 hours or more! Some

people cook for less time, it will still be healthy. Also, an

amendment, I use a tiny bit of apple cider vinegar, but if this is

problemic for you, better to use distilled white vinegar, or juice

of a lemon. The bones I crack with my bare hands after many cooking

hours, usually for chickens or turkeys, but for bigger bones, get

them sawed open by a butcher to get some of the marrow out.

>>>

I have been using bone broths for years, absolutely amazing

healthfood.

First, I only use the bones from truly free range animals,

preferably organic,

but definitely free range. Bones from weak animals sitting in cages

their whole

lives are not that strong and accumulate lead and other contaminates.

I take these bones and put them in a stockpot. I cover with just

enough water,

add about 1/4 cup apple cidar vinegar, bring to a boil, then gently

simmer for a

number of hours. You don't want to use too much apple cidar vinegar,

because

then you will taste it in the final broth or soup. 1/4 cup seems to

be tasteless

for the final product when I cook. The purpose of the vinegar, it

softens the

bones.

Then, I remove the stockpot from the heat. I remove the bones and

let cool a

tiny bit, then I crack them open. I take one of those scraper

utensils that

comes with a basic nutcracker at the grocery store, and scrape out

all the

marrow. I return broken bones and marrow back to the cooking water,

and simmer

on low heat for many more hours, at least 4, but preferably more.

This soup

takes me a whole day to make.

I then strain out all bone and marrow bits. This is the basic

bone broth. Then

I add whatever stock I have one hand to it, cooking and/or medicenal

herbs,

veggies, whatever you want to make a soup/broth you will eat/drink.

Low heat is

really key, with a long cooking time. I have found this to be an

excellent way

of getting good ratios of bone matrix building minerals into my

body.<<<

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

---------------------------------

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[Guest guest]

Thank you Summer, we mad a batch of the " organic " bone broth ( in honor of you

and all past advice to others), the other day, but did not have your directions.

They are very helpful. I can see where we went wrong. Will need to make more

that is for certain. Putting recipe in my recipe files.

No SCDer's close by accept for Gwen and she is no longer following just SCD...so

not much help there...and she has too much on her plate for me to want to bother

her.

They won't allow a humidifier for some reason or another. She can't even use

her hot water bottle for the cramping!

I want to go home...truly horrible being here. We may get to soon...not

well.... but stabilizing...she can heal the rest of the way at home...they

think. Better off at home when eating this way.

Do you or anybody have any TRICKS to making a very sick toddler drink/eat when

all she wants to do is nurse?????

God Bless all for their prayers, we truly feel them, Antoinette celiac/mother to

KiKi-2 celiac/asd SCD 2/06

[Guest guest]

> Do you or anybody have any TRICKS to making a very sick toddler

drink/eat

> when all she wants to do is nurse?????

I'd just let her nurse as much as possible, if that's what she wants. It

will help keep her hydrated and nourished. Is she getting IV fluids?

Becky

mom to Noah (6, HFA) and (3, NT)

SCD 3 months

[Guest guest]

>

> > Do you or anybody have any TRICKS to making a very sick toddler

> drink/eat

> > when all she wants to do is nurse?????

>

You can make sure that what she's getting is quality. Make sure to

eat well yourself, 'consider' (for you) supplementation while she is

nursing. And leave some of the basic care-stuff to others to conserve

your energy. LOTS of people can help entertain her, clean up, cook,

etc...but only you can make decent breastmilk.

-christine