How we're doing

I think we are almost ready to move into stage 3. I am excited.

I am still concerned about my son. I wish he could tolerate more foods. But Clark is doing very well now in school. His teachers have seen so much progress with him since we started the diet. He's more focused, more engaged, and less likely to be acting out. He's acting like such a little boy and finally asking WHY. Why, why, why. What a great thing to hear.

My son is five years old. He has taught himself to tell time -- like, on a real clock. My mouth fell open when I realized this.

The problem with Clark will never be academics. It will be boredom, it will be social skills, but it won't be academics. His teachers are trying to give him special tasks and responsibilities to keep him engaged and occupied, because otherwise Clark will act out. See, Clark doesn't put too much stock in what other people think of him. At first it was because he wasn't aware of what the other children were doing. Now, it's because he really doesn't care.

I have to admit, I admire that quality in him. Haven't we all wished at one time or another that we could act without worrying about what others will think of us? And here my son does it, effortlessly.

However, Clark is still battling constant illnesses. He's still not healed enough to handle many foods. Squash is no good. Asparagus loosens up his stools. Spinach does the same thing. All he really tolerates well is the green beans and carrots.

I need to make more yogurt and try it with him, but I was battling the flu and I'm still not completely better, so there was no way I could wake up at 2 a.m. and check the temperature. At least Clark didn't catch THAT. But he caught a cold and was out sick yesterday. Again. It's so frustrating.

I am hoping we can try the yogurt again. It's probably been at least six weeks since we tried it last. I'm going to try the casein first by making an SCD cheesecake and we'll see how it goes again.

As for me, I just started trying legal cheese. I am eating avocados, which we haven't tried with Clark yet, even though I know I should. With the cheese, I am wary. I have been eating it now for two days, and each morning as I wake up, I wonder if it isn't just a little harder to get out of bed, if my fingers aren't a little more swelled up, if my right wrist hurts a little more than the previous day. It should become obvious over the next two days. If I start sliding into true flare territory, then I'll know.

I feel very lucky right now that my son is getting better. He helped me plant flowers on the balcony yesterday. We planted petunias, verbena, and asters. He called them asterisks. :) He still is very literal and loves learning the names of things. Clark and I were in his room the other day. I was sitting on his bed, and Clark had shoved everything out from under his bed with no explanation. He then started to go under the bed. Daddy came in and lay down on the floor, and asked what Clark was doing.

Clark: "I'm pretending it's a parking garage."

Daddy: "Oh."

Clark: "Daddy, what's that?"

Daddy: "What's what?"

Clark: "Come under here."

Daddy: "I won't fit."

But Daddy gamely shimmied a bit under the bed. Clark was looking at the wood slats under his Ikea bed.

Daddy: "Oh. Those are knots in the wood."

Clark: "It's broken!"

Daddy: "No it's not, they're part of the wood."

Clark: "There's another one! And there's a knot. And there. And there!"

Daddy: "Yes, there's a lot of them.

Too cute. :)

Pecanbread

About a month ago, I was offered moderator status on the Pecanbread Yahoo! group. I knew they needed the help, and I accepted.

Each day, there are new people joining that list, asking for answers, desperate for someone to listen to them, to help them on their way. Every day there are more people who have noticed that digestive dysfunction seems to go hand in hand with their child's autism, or ADHD, or that there must be a way to help their child with ulcerative colitis or Crohn's disease.

We even get adults with fibromyalgia and CFS, and still others with rheumatoid arthritis. There are other moms with RA who have autistic kids, and we wonder together about this relationship.

There are about 3300 subscribers to this list. There are about 100 messages a day.

Most of the messages are not easy ones. Some ask how to start the diet. Some post lists of supplements, asking which are in line with the diet and which are not. Some post asking for alternatives to their child's current regimen. Some are confused as to how to implement the diet in the face of unsupportive family, friends, and schools; some just need a shoulder to cry on. Some challenge us to explain how the diet works. We do our best.

I would be lying if I said that being involved as a moderator hasn't been draining in some ways. There are some days when I just have to let go and let the other mods handle it. Fortunately we have several.

But I do take responsibility when I feel I am able, and I do my best to answer the questions that I can, because when I was confused, lost and alone, with only my own research and beliefs to guide me, they were there for me. And now I'm not alone anymore.

Lunch on the run

So, last week, I forgot my lunch. What's an SCD girl to do? I took a trip to the local grocery store and this is what I came up with.



The avocado was the most costly part, since the cheap avocados weren't ripe (naturally). So I had to get either a GIANT costly avocado, or a smaller organic one, and I went with the smaller organic one.

The whole lunch ended up costing me about $4.75, so it was not bank breaking. The tiny cans of Dole pineapple are the only ones I've found that say, "In its own juice," which means they are the only legal ones.

Pretty yummy.

Sorry for the lack of actual content as of late. I am a busy girl. I'm also now a moderator on the Pecanbread list, so that is kind of cool!

I am tired. I have been off my RA meds for a couple months now, and it's starting to catch up with me. I had moderate to severe disease activity from the start, so it's not entirely unsurprising. I should be getting meds from my new doc in early May. I am still optimistic that I will achieve remission eventually. Just not quite yet.

Cooking marathon this weekend was a bit low key. There was a lot of laundry to do, so less cooking got done. But I did make soup, ketchup, meatloaves with spinach, egg bread, yogurt, and my darling hubby made hardboiled eggs and boiled carrots to help me out. Also I have supplies up the wazoo, including ground turkey! Huzzah! Carolina brand ground turkey comes frozen in a five pound tube and it is legal. I found it at Smart and Final but they are always out of it. This time they had a bunch so we bought two and one is thawing in the fridge right now. I really like making sausage out of it, and this time I am going to make sausage and then fry it up with eggs for yummy breakfast food.

I think I am going to attempt to cook more during the week in the hopes that my weekends aren't wall-to-wall running errands and cooking. Egg bread freezes great, so every week now I make a bunch and toss it in the freezer. We toss a package in with Clark's lunch and it's thawed and ready to eat by lunchtime.

Clark is doing OK but he is sick AGAIN. I am so frustrated with his constant illnesses. It makes it hard to try new foods, because every time he gets sick his digestion goes all to hell too. Argh. His behavior is usually horrible on top of his illness which doesn't help either.

I have a lot of columns planned for this space. This month is bad though because I have a lot of scripts to do for Pendant Audio. And I get tired typing because of the RA too. So don't despair. I'm trying and I'll get there eventually! :)

Argh and wow

OK, so I know that it is hard to do SCD when your kid is attending a public school. I know it's especially challenging when at least 80 percent of the kids qualify for free breakfast and lunch.

But how hard is it to understand that our son is to have NO FOOD that is not from home?

Apparently a teacher gave Clark three Skittles. He explained that he thought they were OK because they were a different color than regular Skittles.

And this person is allowed to educate children? Next time I'm going to ask him what color of sugar doesn't have sugar in it. *growl*

The interesting thing though is...it didn't really mess Clark up much at all. This is a kid who spiraled out of control for TWO WEEKS after getting a mini candy cane at Christmas.

Clark told us he ate three Skittles after we asked. But apparently he is bouncing back from it fast. Yes, he had behavior and sleep issues for about four days, but he would have those same issues from eating a vegetable that didn't agree with him previously.

So I think he is definitely healing.

And today was a conversation EXPLOSION!

"I have a grizzly bear on my shirt! Dinosaurs eat snacks sometimes, if they're hungry. Can I have a snack? Oh hey guess what guys, did you know I'm going to the aquarium tomorrow? It's nice and they have fish."

I am stunned. Literally stunned.

Yay Clark!

A new rheumatologist who listens!

So yesterday I made the trek out to the Arthritis Center of Riverside to see a new rheumatologist.

I've been waiting for quite a while until I got my new insurance specifically so I could go to these people. They are very interested in finding the causes of inflammation, and they've done a lot of research on infectious agents and their role in RA. They've written some interesting stuff about mycoplasmas, which are tiny little organisms that seem to be found in much greater numbers in people with RA, specifically within the joints.

They are NOT holistic. I want to make that clear. They will write prescriptions for DMARDs when necessary, but they also have a very cool low dose antibiotic protocol treatment that seems to be very effective. Many patients actually achieve remission this way.

This was my initial appointment, and I was nervous at first. All new patients see Dr. Lallande at first, an osteopath, which means he has D.O. after his name instead of M.D. Osteopaths are capable doctors in this country, so don't confuse them with the osteopaths in the U.K., who are in fact naturopaths and not medical doctors. My own general practitioner is an osteopath and Dr. Lallande seems to follow the same functional medicine philosophy. Dr. Lallande is a cheerful man with a salt and pepper crew cut, very animated and completely interested in what I was saying. I've never felt more at ease.

I started telling him about the dietary changes I'd made and the progress I'd found due to it. I told him I was now following the specific carbohydrate diet.

I paused when he seemed to continue to be friendly, instead of clamming up. I then asked him if he'd heard of the diet.

He had!

O_O

He then specifically wanted to hear about my autistic son, and what I thought caused his autism. His own son had received a bunch of vaccines at once, and had experienced some extreme OCD-like behaviors for a few years, so he was curious to know if I thought vaccines triggered his autism. He had also changed his son's diet and done interventions that helped him. Personally I don't think vaccines triggered Clark's problems, but to have a doctor acknowledge the experience of many, many parents over the current medical studies was really something. He thought it was great that my research had helped me and my son so much.

He said, "Keep doing your research! We don't know everything!" Then he smiled, and said, "If somebody had told you, 'You're going to get this disease, and it's a really serious disease, but in getting it, you're going to learn how to help your son,' would you have signed up?"

I said, "Absolutely."

He said, "Of course you would. Every mother would."

Then we moved on to the actual exam. He thought I was doing pretty well. He even remarked to his assistant, "See, she's good, she learned how to treat herself." He checked me for fibromyalgia as well, so they treat that too! Hey fibro people, you should check these people out!

He then proclaimed me to be in excellent health, except for the RA, which is pretty much what every doctor says. :)

Then it was off for blood work, and I come back in May for X-rays and an appointment with the facility's director. He told me that there will be supplements and possibly the antibiotic protocol once they learn what they can from my tests, but if I feel I need Enbrel to hold me over until the other stuff starts kicking in, then I should call and let them know. He told me it can take up to six months for the protocol to really start working, so they will try to minimize my damage in the meantime while we're waiting.

All in all, I was just so thrilled with the appointment. I wanted to hug him, but since I was wearing one of those gowns, I think it would have been a little awkward.

SCD and the doctor

I don't even know where to begin. I guess at the beginning. That's good, right?

Over the past three weeks or so, Clark has been off again, on again sick. However, about two weeks ago, he went from a sniffly nose to a hacking deep cough in the span of about eight hours. He also spiked a high fever, around 104 degrees.

I don't freak out when my kid gets sick. I don't like taking him to the doctor. Kids get sick; it's what they do, and most of the time there's nothing you can do about it except wait it out. Their school environment is like a virus factory.

But this did worry me, and so we took him in. We found out he had pneumonia (joy) and he had his first chest X-ray. This brought back a lot of memories for me, because as a child, I had pretty bad asthma. I had pneumonia multiple times, and bronchitis more times than I could count. I learned to sleep sitting up, and as a result, I can sleep pretty much anywhere at any time, much to the envy of some of my friends.

When my son's doctor told us she wanted to prescribe antibiotics, I told her that sugar caused huge problems for Clark, so perhaps she could give us something sugar free that we could crush and mix up with something. She prescribed Augmentin, which is a combo of two antibiotics, amoxicillin and clavulanate, and she gave it to us in a tablet form that was OK to crush and mix with applesauce, much to my relief. I knew the pills would likely contain corn starch, but I was OK with that short term.

My pediatrician, who is a really cool lady, did caution that the antibiotic might cause diarrhea, so she suggested we give him L. acidophilus along with the antibiotic. While that was a great suggestion, I can't find any that's SCD legal locally, and the stuff from GI Pro Health is on back order. So we just decided to wait it out and see what would happen.

After the first dose, I had a nightmare where Clark literally turned into a monster and was eating my hand with very sharp teeth. My husband pointed out that I was afraid Clark would go back to the way he was pre-SCD, and my mind interpreted this literally.

Clark was OK with the antibiotic. He did start to regress around day three or four, much to our dismay, but it wasn't severe.

And then, on about day 7, we got Clark up for school and he was covered in a bright red rash.

Guess what? He's allergic to penicillin. *head on desk*

So we took him in to the doctor while the reaction continued to worsen. The doctor noticed Clark was a little short of breath, so he got a breathing treatment of what I assume was albuterol. Once again, I was hit by memories of my childhood while he sat on my lap with a mask over his face, and I chatted with him while we waited for the medicine to run down.

We were instructed to give him Benadryl, and I mentioned the problem with sugar again. We found him a kids chewable version with NutraSweet, and we tried that. We were sent home with instructions to keep an eye on him for the next 4-6 hours to see if his breathing worsened again.

We ended up giving him two doses of the Benadryl, and it really didn't seem to help him much. He was also getting weepy and emotional and I figured I should switch to something without the NutraSweet and artificial colors. I was also worried because the rash seemed to continue to worsen. So I picked up some generic Zyrtec tablets and crushed one for him. The dosage is the same for anyone ages 6 and up, and it lasts for 24 hours. I carefully checked the package and it didn't say you couldn't crush them, so I figured it was OK.

The next morning Clark was definitely more cheerful, even though he didn't look much better. I had looked up the ingredients on the Zyrtec in the meantime and one of them did have an extended release component. Since I was worried, I grabbed the same product at Target and asked their pharmacist if it was extended release -- it wasn't, and she said it was OK to crush. Whew.

So far, so good. The Zyrtec tablets do contain starch and a teensy bit of lactose, but they are very small and I think Clark is doing really well with them.

The interesting thing is, I realized Clark has never had antibiotics until now, and I wonder if that's why he's only mildly autistic instead of much worse. I managed to explain a little bit about SCD to his regular pediatrician and she was slightly mystified but didn't try to dissuade us.

And now it's my turn. I'm leaving work early today to go to an arthritis institute, and I'm a little nervous about it. See, even though my son and I have only been SCD for a little while, I've been tinkering with diet changes for the past three years because cutting out grains has REALLY helped my arthritis. Every time I go to a new rheumatologist I have to be prepared, because every time I tell them the diet changes that have helped me, and every time, I get the silent treatment because they don't believe me. I don't know if it will be different this time, but I am resolved.