Re: Desperately need help....

November 10, 2004

Robbie,

My heart goes out to you! 7.8 is a number to be concerned about,

though, it's definitely low and requires quick supplementation -

start with whatever you've got (that's SCD legal). Right now, any

SCD legal iron will be good for him, and iron is not a wimpy mineral

(chelated or not), you can sneak it into a smoothie or hamburger if

you need to and it doesn't break down very easily (just crush the

pill and mix it in, but avoid high heat cooking if you can). Iron is

best absorbed with Vitamin C, so make sure he drinks some juice of

some kind every time he takes it. Iron can be irritating to a

healing gut (iron supplements looked at under a microscope are

actually little metal filings), so frequent small doses with food

and juice will be easier for him. Little things will help, too, like

cooking with cast iron cookware. Food sources of iron include red

meats, organ meats, beans (can he eat these yet?), oranges (not so

much in the juice), etc. and are better absorbed than any

supplement, but in smaller amounts.

Once his hemoglobin is above 9 you can start breathing a little

easier, and above 10.5 many practitioners will back off on treatment

and you can start to rely more on food sources and less on

supplements.

Good for you for catching it! You are a good Mom, Robbie, remember

that...

Namaste,

Anne Rhody

> is my UC 4 yr old who has been SCD almost 5 months. He had

some illegals recently in the form of supplements because his UC got

out of control after weaning off prednisone and I was desperate

(long story). He then got a nasty intestinal virus and I took him

off all the illegals, so he's been legal again for about 3 wks.

>

> Well, he had a followup with his gi doctor and had bloodwork -

he's very anemic. 7.8 and is supposed to be an 11 - he wants him to

take 700mg of Iron FE a DAY. What should I do? I have a chelated

chewable iron but it's got sorbitol in it - I really need a good

iron that won't tear his gut up and I don't want him on illegals

again... any suggestions? I have water oz, too, but I know many

think a chelated would be better.

>

> By the way, his GI upped his sulfa drug to 2000mg a day and it's

helped a lot, from 15x a day to 3-4.

>

> Thank you... you can email direct if you want robbie@

littlebritchesboutique.com (delete space).

>

> Robbie

>

November 10, 2004

Thank you so much. Sometimes I feel so helpless - and everyone seems to have

'the answer' from the GI, SCD, the alternative practitioner, and all contradict

each other. I feel like I have to 2nd guess them all - except SCD but by itself

it wasn't getting better and he will only do the intro diet for 2 days -

he's only 4 and limiting so much food (no this type of fruit, no amond flour, no

cheese, no this no that) is just too much for him - he gets really depressed and

I'm afraid he will sneak food from friend's moms. He's so good about his diet

and so good to refuse food he knows isn't on the diet - and he's happy with SCD

as it is, but the intro and other limitations to it just make him really sad,

and me, too.

So, I really only went to the alternative practitioner because she said she

could determine if he has c.diff. He tested negative, but she says she can

really help him if I will just give her two months, that's all. Wow, that seems

too good to pass up - BUT is it ruining all the work I've put in to SCD? Will

it make him worse? What if it doesn't work? Well, he was flaring so badly I

decided to try what she says - mainly illegal supplements and a homeopathic

concoction, and he gets this intestinal virus (I know it was viral because the

baby got it, too). I cringed at the thought of him being on illegals but just

for two months, right? He seemed to respond positively to the treatment at

first, but then he got the virus...

The GI then wants him to take toxic drugs, but what choice do I have? I finally

got his meds legal during the virus attack - the compounding pharmacy couldn't

figure out a way to make them legal in a syrup - so since he can now take pills,

I had them compound his medicine in 100mg capsules, which he takes 10 at a time.

So, now he's completely legal again - tho he's really never been completely

legal because his meds weren't legal.

So, really, I guess he's never been completely SCD. Maybe I should say we're on

day one because I forgot about water oz before I gave the chelated chewable

yesterday, which has sorbitol in it... but after the call from the GI doc about

his anemia, I just paniced and gave him one. I don't really feel like a good

mom - I feel desperate, alone, and very helpless and not even really sure what

the right decision is for .

SCD worked so well at first - I just don't know what happened unless the illegal

syrup in the meds just kept him from getting better. And through it all it

almost landed him in the hospital again.

Ok, I didn't get on here to ramble on but I did anyway. Thank you for letting

me vent... I'm also not being very objective because confusion and desperation

are clouding my judgement so any encouragement or testimonials are welcome as

I'm teetering on the edge.

Robbie