RE: Mineral Oil?

February 1, 2004

Hi Carol,

From what I recall mineral oil is pretty strong stuff. When pregnant I was

told Do not take it for constipation because it can induce labour (not that

constipation was my problem).

Also I think that mineral oil can leach vitamins out of your body. Here is a

few links I found that mention this

http://www.vitamin-galore.com/Drug/Mineral_Oil.htm

http://www.home.caregroup.org/clinical/altmed/interactions/Drugs/Mineral_Oil.htm

Have you tried the glycerin suppository as per the constipation protocol?

Not something most kids would let you do but maybe while is asleep

(if she is a sound sleeper)

What is eating these days. She was on antibiotics recently right?

Is she off them now?

Sheila, SCD 35 mos UC 20 yrs

mom of SCD 20 mos

>Searched both sites and can't find if it's legal or not. Got desperate

>with 's constipation- due mostly to pain from the lichen

>Sclerosus-and have been adding it to her food along with lots of prune

>nectar. FINALLY, a soft stool she is not afraid to pass.

>

>So now I hope it's legal???

>

>Carol in IL

>ps127@...

>Mom to 7 blessings including , 3 with DS (SCD8 weeks ) and

>Grandma to Micah and Jonah.

>

> "

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February 1, 2004

Thanks for the reply Sheila...we are on a viscous cycle here and can't

seem to get off the merry-go-round. To say I am getting tired of it all

is a vast understatement ;-)

Our main problem is she keeps needing antibiotics and this past week

Motrin in all it's corn syrup glory too!! Not to mention Oral steroids

7 days in a row along with inhaled ones. She has been really struggling

with a chest cold/flu maybe, and we had to go to the ER because she

turned a ghastly blue/white and couldn't get enough air moving..life was

going good and thought we were over the worst of this bug when she woke

up Friday morning blue tinged again, retracting and struggling for O2

again!! A trip to the Ped to find out she has a real nasty ear

infection with pus oozing and still junky in her lungs. So the motrin

HAD to be given so she could breathe not for pain relief ( a higher

temp makes you breathe faster to cool off, a luxury she could not be

afforded ). And the antibiotics to cover the ears and the lasting junk

in her lungs. Today she is having a serious flare up of the LS and I

had to get out the super potent steroids for her bottom now too. :-( I

also caved to her pain from this and gave her a Tylenol suppository.

And as frosting on the cake... When she gets over all of this, she is

scheduled to go in for an endoscopy, new ear tubes, and upper GI and

some other procedure to check out her airways that I can't spell ;-) and

guess what?? She will need antibiotics!!!!! ARRRRGGGGGG!!!!!

We were JUST recovering from having her teeth cleaned which she needed

antibiotics for too!!!!! Now why did I get her teeth cleaned in the

middle of this mess anyway.. Well they were coated with stomach acid and

NEEDED it desperately or her tooth enamel would suffer. The dentist had

a tough time getting it all off. A toothbrush didn't make a dent.

She was doing perfectly for a long time at the beginning of the diet

with no need for any help in the BM dept. It was Nirvana :-) But she

had a flare of her Lichen Sclerosus right after Christmas which left her

anal area tight and unyielding which caused a small tear with a BM which

then added to the return of the constipation monster. She began actively

holding to avoid possible pain. To give you an idea of how painful this

can be, before the dx of LS she would get shocky and almost pass out

with pain while passing a normal soft stool. She would also bleed quite

a bit because of the tearing. So she has ample cause to be afraid to

'go'. Add holding, to a leaning towards constipation and I have double

trouble!! So I needed to do *something *to make her stools soft and

slippery. We have tried; prune nectar and we use it all the time,

senokot, gives her terrible cramps-lactolouse, makes her LS flare-

Miralax,want to stay FAR away from that stuff-I gave her some mag

citrate last week and she instantly threw up. I want to try again as it

could have been fluke, but we just have too many things going on right

now to give it a fair shot. I have been giving her enema's every other

day over the past couple of weeks... And at the same time added the

mineral oil and upped the prune nectar and the last three days she has

gone on her own. I suspect this is all going to come to a halt again

with the meds she is taking now. I will no doubt be needing enema's

again. I wanted to get off those because I wonder if the sheer act of

the giving these things aren't causing the LS problem around her anus. I

don't know...

It's a mess and I am dizzy with all the stuff going on.

As far as diet, she is eating some chicken, lots of butternut squash,

carrots, strained peas, applesauce with nut butter, coconut oil, cheese

:-( banana :-( and this past week she has been on a yogurt kick, which

who knows.. May have helped. She was eating lots more variety, but she

has started with some gagging on certain things again. She drinks a LOT

of very watered down grape juice and has a wonderful output of urine so

I know fluid intake is not an issue with her. I don't know what else

to do at this point other than maybe just ride this out with the

mineral oil as needed and try to stay as legal as possible.

For supplements grapeseed extract ( powdered nothing added) green tea

extract ( also nothing added) Carlson's Cod Liver ( plain no flavor)

Prilosec and Synthroid along with all the stuff mentioned before to get

her through this cold.

And let me add this.. Though I am very tired of all this, things are

STILL so much BETTER than they ever were before SCD!!!! If they

weren't... I would have given up long time ago. But I am greedy and want

to get back to where we were before she started with all these colds

and meds, cause that was PERFECT!

So for those of you struggling, don't read this as a reason to give up,

no way!! I would not want to go back to the big mess we had before we

went SCD.. There is no comparison.

Carol in IL

ps127@...

Mom to 7 blessings including , 3 with DS (SCD12 weeks? Losing

track now ) and Grandma to Micah and Jonah.

" Unless the Lord builds the house, they labor in vain. " Psalm 127

My problem isn't how I look, is how you see me. "

February 1, 2004

Hi Carol,

I would certainly give the mag citrate a further try. I sprinkle a small amount

into Katera's food at each meal..... I don't know if it has any taste, maybe

that's why threw up?? Katera doesn't notice it at all but she doesn't

have a well developed sense of taste.

I pray you can get rid of the Prilosec somehow, someday..... as I'm sure that

interferes with digestion and the natural functioning of the whole digestive

tract..... but I know the reflux has been a beast for .

Patti, mom to Katera

February 3, 2004

Wow Carol,

That is just...incredible!

Here are a few thoughts:

1.) Have you tried giivng the prune nectar & OJ combo warmed. I think the hot

fluids help with peristalsis.

2.) When giving antibiotics give yogurt or some form of probiotics two hours

before and or after

You probably know this already but just in case you didn't.

I know about passing painful bm's. While in the hospital my husband or a nurse

would have to come with me to make sure I didn't hit my head if I passed out in

the bathroom. Not pleasant.

She maybe gagging because of the cold/flu. It is really hard to swallow if you

have a lot of " gunk " on your lungs and in your throat. I had that awful flu

recently and I am still hacking up goop (sorry for the description). I couldn't

breathe either.

Sorry I couldn't be of more help. Here is a big cyber hug for you and .

Sheila, SCD 36 mos, UC 20 yrs

mom