Monday, January 26, 2009

My "SCD Success Story" post

sent to the two main SCD groups I'm on after a newbie posted asking for success stories....

"When my dd first started the SC diet, I found success stories very helpful, so here is ours:

My dd was dx'ed at age 8.5 w. a very severe case of Crohn's disease. It took us three months to get a proper dx, and, by that time, her SED rate was 95, which was so off-the-charts that, if the GI consult didn't pan out, our next stop was the cancer docs, b/c it was most likely to be lymphoma.....

She was hospitalized a week and we started the SC diet two days after she was discharged. It's been (and I can't believe I can say this)
2 1/2 years.

Everyone has their trials and challenges when they start the diet. Ours were that dh and I had been vegetarians since we were teens and we felt that it was really impossible to eat only dairy and eggs and have a complete diet on SCD. So we added some fish, chicken and meat to our diets. Since we are Jewish and keep kosher, this meant adding an entirely new set of dishes, pots, cabinets, etc, and re-learning how to keep a kosher kitchen with two sets of dishes in it, something I had not done since I was a child.

Our other big challenges were that we had a newborn baby (dd got sick when I was 7 months pregnant), and one of our four children has an anaphylactic allergy to nuts [editor's note: for those of you not familiar w. the SC diet: no grains of any kind are allowed. Nut flours are used instead of grains). Whee!

If we could make it through 2 1/2 years with this @#$^@#!$ against us, I hope I have given some inspiration that, whatever challenges you are facing in implementing the diet, it CAN be done.

We also had lots of good things to help us: very supportive family (including my mother and brother-in-law who cooked all off dd's nut products at their house so I wouldn't risk "dosing" the nut-allergic child), a GI doc who STRONGLY supports the SC diet and tries to get all his IBD patients to follow it, parents who came to help with the baby [my dad] and help me figure out what the heck to cook [my mom], and the financial ability (for a little while, at least!) to hire someone to come 3 hours 3x/week to clean the kitchen that I repeatedly and continually trashed cooking for six people.....It was also a big help that dd has always been homeschooled so we didn't have to deal with packing her lunches for school and dealing with tons of parties.

dd left the hospital on a ton of meds and has weaned off of prednisone, flagyl, prevacid, and (the last one to go) Imuran. She's been over 5 months totally med-free (no supplements either) with only the SC diet for treatment. We have begun experimenting with her having a few bites of things that aren't SCD, and she's had two complete meals off for major family events (one was a year ago and her GI doc gave approval since she had been symptom-free for quite a while).

I am starting to use some ingredients that are not completely SCD (I bought my first package of pre-shredded cheese in three years recently!).

The way that I've presented it to my dd is that it's great we have the SC diet "in our pocket" for the future. I picture her eating mostly SCD but without the diet-recommended fanaticism. Like how I heard that Elaine Gotschall's daughter ate/eats 80% SCD and 20% SAD (Standard American Diet). Maybe/probably there will be times in her life where she'll have to go back to it (for women, notably hormonal changes of adolescence and pregnancy/postpartum seem to induce bad flares), but how great we know something other than meds and surgery.

Wishing everyone on this list good health,

11 y/o dd scd since 5/06 for Crohn's
med-free since 9/08"

Thursday, January 22, 2009

Ilana Makes Soup

Ilana is pretending to make me dinner.

She hands me a soup bowl and pours something from her little pot into it.

"Yum, Ilana! What kind of soup is it?"

"it's chicken....pox soup".

I don't know why I didn't want seconds!

Sweet Words

There are words that are so sweet to hear.....


"I love you"

"Harei at mekudeshet....." (the "I do" line of a Jewish wedding)

but I am still, two days later, so unbelievably happy at the words "former president George W. Bush"

Sunday, January 18, 2009

posting again

What can one say after writing about the worst thing that can happen to a parent?


A few weeks back, a small group of us went with Jodi, Jon and Jake to scatter Katie's ashes in the woods near Jodi's childhood home (they also scattered ashes near Jon's parents, and brought some back to Malaysia). This was the home where Heidi, Jodi and I spent so many hours together, and the woods that we knew like the backs of our hands when we were younger. How unbearably sad, utterly surreal, and, in a small way, comforting, to be there scattering Katie's ashes....

Jodi read a beautiful and moving farewell to Katie, telling her she would be with her grandfather Joe there, in the woods where Papa Joe had so delighted in taking Jodi and her brother and sisters to play pirates after making paper pirate hats with them. Jon read a prayer that had been said at the funeral. They asked Jake (who is 5) if he wanted to say something. He had been playing with sticks and said he had found one that looked like a "7", which was good because Katie was 7. He had a pile of them and said something like it was his pile of "loving sticks". G-d bless him. So we all started collecting loving sticks for the pile.

Jodi showed him and her great-nephew the "fairy ring" of rocks there. Her sister went way back into the woods to see if something she remembered was still there. We all marveled over how easily the house they grew up in could be seen (having mostly played there in spring and summer, it was usually impossible to see the house at all through the trees, and, since it was a whole block away, felt rather far!).

Shabbat was fast approaching. Heidi and I were emotional wrecks. So glad I could go, though.

Jodi, Jon and Jake are back in Malaysia again. Miss them....