Jenny,

Well, you asked what a sample meal looks like on the SCD for Tom, and here it is. It's going to look pretty weird to most people, but if you knew what food has been like in our house the past 3 years, it's not weird anymore. We rotate foods every two days, so it changes.  Each rotation has only 3 or 4 foods right now, we had to eliminate several foods for the SCD (all his BED grains, like quinoa and millet), and several starchy root veggies (parsnip and turnip). I was terrified at the thought of restricting his diet even more than the 15 foods he isn't allergic to, but when I got back the awful results from his recent Comprehensive Digestive Stool Analysis, I decided to bite the bullet, because he's not getting any better. He's gotten much worse over the last year as I keep having to pull foods out of his diet as he becomes allergic to them, and after 7 months on the BED with a LOT of probiotic foods, we weren't making any apparent progress. His diet is VERY restricted, and unless I did something drastic, it was going to get more so.

Tom eats his meals from a 3-section plate that we learned to use in his feeding therapy. He gets 3 foods each meal. In the big section and the second small section there are vegetables, and in the third compartmant (where the favorite food goes) is a ground meat patty.

So, for example, on days 1 and 2, these are the foods he eats:

-buffalo patties

-butternut squash (pureed, diced & boiled, baked spears, chips)

-asparagus (well-cooked spears, diced & boiled)

-squash soup (buffalo and asparagus broth with squash puree)

-asparagus soup (buffalo and asparagus broth with asparagus puree)

- canola oil

*Breakfast:

Squash dices

asparagus dices with canola oil and sea salt

buffalo patty

*Snack:

squash soup

asparagus spears

squash chips

*Lunch:

asparagus dices

squash spears

buffalo patty

*Snack:

squash soup

buffalo patty

squash chips

*Dinner:

Same as breakfast

As you can see, I am really stretching to make as much variety as possible with essentially 3 foods and 1 oil. We rotate everything, so I have to stretch all his "safe" foods out over 7 days or 4 rotations. It is tough. Even these foods are probably causing some level of inflammation and irritation.  Many of the foods he does eat he is mildly allergic to, or they are supposed to be reserved to a more advanced stage of the SCD than he's at. But we don't really have a choice, I don't want to feed him only spinach for 2 days, KWIM?

But he's doing so well, even his poops show signs of improiving. We saw a huge yeast die-off at the start, and Dr. Mumper has him on a rotating yeast treatment, since he has 3 different varieties of yeast. It may be permanent, for the foreseeable future.  But this is the best thing yet we've done for him, I just wish we'd started sooner.

We've also added glutamine, which has helped, and zinc and glutathione and nasal B12. I think all those contributed.  We recently started Lauricidin, and he is swallowing the little waxy pellets out of his hand, just like little pills!  He's a weird kid, he thinks medicine is "special".  He got a Bacillin shot last week for his second case of strep in  2 weeks, and after screaming bloody murder (it was a huge needle), he calmed right down and marched around thanking the nurses for the shot: "Tom feels better" "Tom got a shot" "It was a nice shot." I think he meant that he was a brave boy and did a good job getting the shot. Every day since then he's woken up in the morning to tell me he feels better. He asks for his medicine to help him feel better, and he takes it eagerly. Maybe, just maybe, I'll be able to start convincing him he can't eat the food that other kids eat. He's started to notice and ask. Today we were at Target and he said "I want to eat dinner at Target!" as we passed the food court. I don't think he ever noticed before that people eat there.

Meals at school would be hard if Tom wasn't in private school where he has a 1:1 teacher. They manage his meals using the feeding protocol. We're lucky to have a protocol that was customized for him at our feeding clinic. We could put that into an IEP, theoretically, but I've heard of our school system refusing to accomodate the same type of protocol for another ASD girl ("What do you mean, she needs to watch TV to eat?! No other kid gets that!" ... Tom no longer needs TV as a reinforcer, but he does need prompts, toy reinforcers, and a distraction-free environment). He's gradually though slowly improving his eating, and I hope increasing his zinc will make food more appealing to him. We hope to get him eating semi-independently before he mainstreams ... if that's in the cards, which looks increasingly likely on the SCD.

Crunchy foods and finger foods are difficult. I make squash chips and am going to try beet chips and celery root chips and zucchini chips.  Terra makes a beet and sweet potato chip, and I can pick out the beet chips for him. He goes crazy for anything crunchy. I know other people make chips from carrots.

He still doesn't tolerate any fruits. We tried pear sauce and apple sauce and cooked banana on the intro SCD diet, and by the end of 4 days his eczema was horribly flared.

Chloe is a puzzle. What does Megson say about her? The SCD does have an infant formula, but I have no idea how nutritionally complete it is. I wonder if you could try Chloe on it for a few days just to see how she'd do? If you mixed it in with her Neocate gradually, she might tolerate the taste.  I think you need a top-notch DAN! nutritionist for her, but I don't know who to suggest. I wonder what someone like Bradstreet would make of her?

Tom is taking all his zinc transdermally, but when his gut heals I hope to start giving it to him orally. Most kids who can tolerate that absorb it more that way, but I know a lot of kids on TD.

If you do go to the DAN! conference, you'll have to stop by Richmond to say howdy! I imagine your route would take you  right through Richmond. Still, I hope we can go too. We don't have anybody to take care of Tom, so we'll take turns driving up if we go.  It would be terrific to meet you!
Suzanne 

-------------- Original message from Jenny Kalis <j_kalis@...>: --------------

Suzanne,  That is great news about Tom!  I am so happy
for you.  Sounds like awsome progress.  Could you give
a sampling of what his diet is like?  Breakfast, lunch
dinner? Parker is in a slump.  I feel like we need to
start over and get rid of all the supplements and just
do the B-6 and zinc and Intestimend like we did in the
beginning and he got a lot better doing that.  We
start our Diflucan tomorrow and his diet isn't good.
Today he had a fruit smoothie and sushi rice and both
of those are horrible for him, but I feel like he is
sooooo way too restricted.  I really want to give the
Diflucan the best chance at working to its highest
potential.  I am really depressed that he is going to
have to buckle down an d be so restricted.  I am almost
wondering if I shouldn't yank him out of school and
homeschool the rest of the year.  As his awareness has
increased he now realizes what the other kids are
eating- all things he wishes he could eat.  This was
never a problem in preschool as he didn't have the
awareness.  I want him to have crunchy snacks like the
other kids so I often end up sending him popcorn or
fritos for the afternoon snack.  For lunch I send
either a salad or carrots, some olives, and some kind
of meat.  All was well in the beginning of the year,
but now I am getting complete lunches uneaten coming
home!  Not having a non-animal source of protein in
the diet makes things difficult.  He's allergic to all
the seeds now too.  It's just crazy.

I'm so torn on this formula thing.  Chloe does so much
better on it.  I would put him on it too, but I think
it is a yeast feeder and obviously isn't optimal as
the cost is ridiculous and it isn't real food.  I
can't imagine it is good long term.  I think it is
really messing up Chloe's blood sugar as well.  I
guess diabetes is a risk factor with it, but now I
can't figure out how to get her off of it.  She's a
mess even when she eats foods I think are safe like
veggies and meats.

In reguards to the zinc we rub a zinc cream on his
back every day in addition to what he gets in his
multivitamin, but I am wondering if we need to take a
separate zinc supplement.  Is this what most people
do?  What did Dr. Mumper suggest? 

We are also still deciding on the DAN!  conference.  I
think it would be really bad to miss it, but we aren't
sure how to fit it in.  We are travelling to Indiana
the end of March/beg. of April and will just be
getting back to NC and then turning around and going
up there.  Not s ure we can swing it with TJ's work,
but am going to try.  It would be great if we could
meet up there!

Have a good week!

Jenny

--- szmidford@... wrote:

> We are going to try to go, taking turns so someone
> can stay home with Tom. My husband may have a
> commitment that weekend, so I'm not sure. I'll be
> sick if we have to miss it. Dr. Boris is going to be
> talking about hyper-allergic kids - the ones like
> ours who can only tolerate a few foods. I sure hope
> i can see that one.
>
> I saw Liz Mumper speak Friday night. Mostly on gut
> issues. One thing she stressed was the role of zinc
> in many cellular functions. According to one study,
> zinc "tightens the gut" of Crohn's patients and
> improves their leaky gut. She will also be one to
> see at the conference.
>
> I haven't posted much recently, we've been sick a
> lot, but Tom is d oing awesomely on the Specific
> Carbohydrate Diet and targeted yeast treatment. We
> still aren't chelating, but focusing on the basics
> has brought tremendous improvement. He's mastering
> things in his ABA program that they've been
> struggling with for a year. He's truly becoming
> conversational and he even understands "silly"!
>
> Suzanne
>
>
> I am going to post
>
> -------------- Original message from "j_kalis"
> <j_kalis@...>: --------------
>
> I am just wondering if any of you will be going to
> the DAN!
> conference? 
>
>
>
>
>
>
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