Re: Getting desperate

[Guest guest]

Start with this

http://www.scdiet.org/8resources/drycurd_sources.html

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[Guest guest]

Thanks. We've been there. Nothing in our area. Walmart here doesn't sell the Meadow Gold products, no Super-Ks, the California sites are way down south. Whole Foods in Sac doesn't have it. If Farmer's closed down, the only thing I can think of is to order it from So. California.

[Guest guest]

Hey LaRea,

I am going to leave this up to the Moderators and old-timers to guide you.

All I can say is that I had a very similar roller coaster ride with

meds/anemia/remicade/blood transfusions/hospitializations and so on.

A real culprit for me was the IRON supplements. To me it was the kiss

of death. I know Elaine strongly cautioned against them.

I do know some people respond to Iron IV's for me I was given 2 types

of Iron both causing allergies. Iron Dextran being the cheapest and

the worst causing me Anaphylaxisis the other type causing me severe

chest pain. Until I was premedicated with solumedrol and benadryl to

the point I couldn't open my eyelids to get the 3rd type of Iron in

(this was after a couple of units of blood. Should of refused this

iron torture) Since we are all different this might not be anyone

else's experience but Iron destroyed my health.

Just a thought for you.

Jodi

SCD 6 months

Crohn's/Colitis

>

> I am the mother of a 15 year old girl with CD. She was dx'd UC 6/06,

remission with azathioprine & sulfasalazine until 8/07. Since then

it's been a nightmare. She was hospitalized for 2 mo, dx changed to

CD, not responsive to prednisone & regular meds, rx asacol, iron,

mesalamine enemas, finally put on Remicade 10/07. Seemed to work for

about a month, but other complications have caused repeated setbacks -

c-dif 12/07, kidney stones 1/08 , flu 2/08 requiring hospitalization.

>

> We started SCD 2/16/08. Her sed rate dropped from 91 to 58 in a

week. We were so encouraged. Last month I went on a trip with my son.

While I was gone, apparently she ate what she was not supposed to

while her father was out, got really sick. But worse was her

hematocrit/hemoglobin dropped so badly the dr had her given 2 units of

blood. She felt better for a few days, but the day after I returned

from the trip she went back into the hospital 3/28/08, had a PICC line

for total bowel rest for a week, Remicade changed to Humira, seemed to

be doing okay and sent home 4/7.

>

> We have resumed SCD. She was doing okay so we tried the banana cake

with almond flour - too much too soon, I know. She loved it, but 2

days later she started bleeding, watery D. Her diet for the last 3

days has been baked chicken, well cooked ground beef, homemade

chicken/veg soup broth, diluted fruit juice, an occasional scrambled

egg, havarti cheese, and water. The yogurt will be ready today- we've

had a hard time getting that started.

>

> We can't find the DCCC anywhere in our area - just outside of

Sacramento CA. We had previously gotten a brick of " Farmer's Cheese "

from Whole Foods here, but I was told that's not legal. We went back

for the DCCC in the 8 oz tub but they are no longer carrying it &

won't order it.

>

> She is now taking asacol, prednisone (tapering), iron, zantac,

Calcium with Vitamin D, acidophilus probiotic - 4.8 billion twice a

day (dr wanted her on VSL#3 but due to the bifi bacteria we haven't

given that to her since Feb) and now hydrocortisone enemas twice a

day. Nothing seems to be helping. I am at such a loss, we are fighting

so hard to keep her out of the operating room. My brain and prayers

are exhausted.

>

> Does anybody have any other suggestions or advice? Thanks.

>

> LaRae B.

>

>

>

>

>

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