You may remember that I gave Clark goat yogurt way back when, and it didn't go so well. Later I found out my thermometer was off on top of it, so that might have had something to do with it. Or it might not.
Anyway, I waited a long time to try it again. I meant to wait three months, but time slipped a bit past that mark.
I am happy to say that Clark handled the introduction of the goat yogurt MUCH better this time, and he is doing very well. Prior to the trial in late January, he had probably been entirely casein free for six months or so.
Remember that this is goat milk yogurt, which is entirely different from cow milk. Autistic kids cannot handle cow dairy. OK, maybe some can, but it's more the exception than the rule.
I also found out that cow dairy will make my arthritis flare. It's slow but I inevitably decline in my condition. Good to know.
So. Clark is up to about a teaspoon of the goat yogurt and he's doing great. When I increase, he does get a little stimmy for a couple days, but then he settles down. It's great!
Also, the last two nights, Clark has woken up at 5:30 a.m.! It's amazing. I am hoping the yogurt has something to do with that.
We have also had trouble getting out of stage 2. Clark doesn't tolerate many of the stage 2 veggies really well. But I thought I would try peas on stage 3. So far, no issues! I am really happy.
So, what's the lesson here? Everybody heals at their own pace. Just keep going. It's been six months on SCD and we're just barely getting into stage 3. A lot of people can move faster, but we just couldn't. So hang in there! :)
Tuesday, May 27, 2008
Tuesday, May 20, 2008
Doctor update, part two
I wrote this back on May 6. I apologize for not posting it sooner!
***************
Last night was my first appointment with Dr. Franco, who is the head of the Arthritis Center in Riverside, California. I had been to the center six weeks before and I had seen Dr. Franco's partner doctor, Dr. Lallande, who took lots of blood and asked lots of questions. This was my follow up.
I was of course nervous, as I always am. I was first scheduled for x-rays. They took about 20 of my neck, elbows, hands, wrists, and feet in varying poses. I then became extremely nervous and wished I had called my insurance company ahead of time to get assurance that they'd pay for all of these. And I hadn't met Dr. Franco before. I had a great appointment with Dr. Lallande last time, but who was to say Dr. Franco would be as cool as Dr. Lallande?
Then, sitting on the table while the tech was messing with the x-rays, I had a brief moment where I imagined the doctor saying something like, "Madam, I do not AT ALL agree with my colleague's methods or theories about diet or vaccines; however, I tolerate him because he is an excellent physician. You will not find a sympathetic ear for your hippie theories in this office!" This made me smile in an entirely goofy way.
Next was blood work. I complained that I had blood work last time to no avail, naturally.
Then FINALLY I saw the doctor, an hour after my original appointment time. Apparently he had gotten hung up by another patient. At least one of the assistants came in to apologize while I was waiting.
Dr. Franco was rather exclamatory. He exclaimed about everything. He told me I had an extraordinary capacity to make red blood cells! He told me my adrenal glands were quite amazing, and that he had never seen anyone with such naturally strong adrenals!He also exclaimed on the softness of my skin! Amazing! He saw the x-ray of me bending my head back as far as it could go, and he raised an eyebrow and said I was more flexible than most. He then asked if I had ever been a dancer. Um, NO.
He asked me about the diet changes I'd made. I told him I and my son were on SCD. He asked me to explain SCD, and I started to, and he instantly understood the purpose and the implications. He asked me to bring the book for next time and said, "I think I should read more about this diet."
He spent a few minutes lambasting the insurance companies, and how the pharmaceutical companies are in the business of keeping people sick, and he works to make people well, and if his patients are in pain he can't sleep at night.
He thoroughly explained all of the x-rays and showed me the bone damage that was apparent within my right wrist (a couple of eroded spots and holes). My earliest joints affected showed compression, so you could see that there wasn't really much space between the bones. He showed me a joint in my foot that was also severely affected and I was honestly surprised, and told him it didn't cause me any discomfort at all. He said that was great.
Apparently though I have muscle spasms through my neck, which has caused those vertebrae to curve out of place a little bit. He then exclaimed on my vertebrae, that I had "amazing windows" where the nerves exit the spine.
He then examined me, and pointed out to the assistant that my rib cage has an interesting shape, which makes me a natural variant of...something. The assistant
feigned polite interest.
And then...the verdict. "I want you to take S. boulardii," he said.
I blinked. "Actually, I have some in my fridge, I just haven't started taking it yet."
He told me they have one that is put together specifically for the Arthritis Center. I asked if I could read the label. It had potato starch and I told him I couldn't have that, and he was fine with me using what I had. He said he didn't want to mess up what I was already doing. He figured out a dosage for me from what I told him about my bottle.
Then he asked if I took glucosamine/chondroitin. I told him I had wanted to, but they contain shellfish, and I tested allergic as a child, so I was a little leery. He thought about this at length,and then said I should try a small amount and work up to the appropriate dosage. I checked the ingredients on the supplement bottle and it looked OK, so I agreed that I would buy that particular one.
Next he suggested a supplement to relax the muscles in my neck, but that one also contained SCD illegal ingredients. I told him I would look for something similar.
And then I asked about drugs. "Do you think I need meds?"
He waved his hand. "I don't think so."
I looked at him, and I started to smile, and the grin eventually took up all of the real estate on my face. He then looked at me curiously. "What?" he said.
I said, "I like you very much right now."
He said, "Oh, thank you."
He then told me he thought I was a great mom (they are both very interested in what I am doing for my autistic son), and a straighforward and honest person, and the world needed more people like me.
So! That was my appointment.
A doctor told me I don't need meds.
A DOCTOR TOLD ME I DON'T NEED MEDS.
Now it's Clark's turn. I've got more work to do.
P.S. And I need to find my copy of BTVC! It's been missing for months now! >_<
***************
Last night was my first appointment with Dr. Franco, who is the head of the Arthritis Center in Riverside, California. I had been to the center six weeks before and I had seen Dr. Franco's partner doctor, Dr. Lallande, who took lots of blood and asked lots of questions. This was my follow up.
I was of course nervous, as I always am. I was first scheduled for x-rays. They took about 20 of my neck, elbows, hands, wrists, and feet in varying poses. I then became extremely nervous and wished I had called my insurance company ahead of time to get assurance that they'd pay for all of these. And I hadn't met Dr. Franco before. I had a great appointment with Dr. Lallande last time, but who was to say Dr. Franco would be as cool as Dr. Lallande?
Then, sitting on the table while the tech was messing with the x-rays, I had a brief moment where I imagined the doctor saying something like, "Madam, I do not AT ALL agree with my colleague's methods or theories about diet or vaccines; however, I tolerate him because he is an excellent physician. You will not find a sympathetic ear for your hippie theories in this office!" This made me smile in an entirely goofy way.
Next was blood work. I complained that I had blood work last time to no avail, naturally.
Then FINALLY I saw the doctor, an hour after my original appointment time. Apparently he had gotten hung up by another patient. At least one of the assistants came in to apologize while I was waiting.
Dr. Franco was rather exclamatory. He exclaimed about everything. He told me I had an extraordinary capacity to make red blood cells! He told me my adrenal glands were quite amazing, and that he had never seen anyone with such naturally strong adrenals!He also exclaimed on the softness of my skin! Amazing! He saw the x-ray of me bending my head back as far as it could go, and he raised an eyebrow and said I was more flexible than most. He then asked if I had ever been a dancer. Um, NO.
He asked me about the diet changes I'd made. I told him I and my son were on SCD. He asked me to explain SCD, and I started to, and he instantly understood the purpose and the implications. He asked me to bring the book for next time and said, "I think I should read more about this diet."
He spent a few minutes lambasting the insurance companies, and how the pharmaceutical companies are in the business of keeping people sick, and he works to make people well, and if his patients are in pain he can't sleep at night.
He thoroughly explained all of the x-rays and showed me the bone damage that was apparent within my right wrist (a couple of eroded spots and holes). My earliest joints affected showed compression, so you could see that there wasn't really much space between the bones. He showed me a joint in my foot that was also severely affected and I was honestly surprised, and told him it didn't cause me any discomfort at all. He said that was great.
Apparently though I have muscle spasms through my neck, which has caused those vertebrae to curve out of place a little bit. He then exclaimed on my vertebrae, that I had "amazing windows" where the nerves exit the spine.
He then examined me, and pointed out to the assistant that my rib cage has an interesting shape, which makes me a natural variant of...something. The assistant
feigned polite interest.
And then...the verdict. "I want you to take S. boulardii," he said.
I blinked. "Actually, I have some in my fridge, I just haven't started taking it yet."
He told me they have one that is put together specifically for the Arthritis Center. I asked if I could read the label. It had potato starch and I told him I couldn't have that, and he was fine with me using what I had. He said he didn't want to mess up what I was already doing. He figured out a dosage for me from what I told him about my bottle.
Then he asked if I took glucosamine/chondroitin. I told him I had wanted to, but they contain shellfish, and I tested allergic as a child, so I was a little leery. He thought about this at length,and then said I should try a small amount and work up to the appropriate dosage. I checked the ingredients on the supplement bottle and it looked OK, so I agreed that I would buy that particular one.
Next he suggested a supplement to relax the muscles in my neck, but that one also contained SCD illegal ingredients. I told him I would look for something similar.
And then I asked about drugs. "Do you think I need meds?"
He waved his hand. "I don't think so."
I looked at him, and I started to smile, and the grin eventually took up all of the real estate on my face. He then looked at me curiously. "What?" he said.
I said, "I like you very much right now."
He said, "Oh, thank you."
He then told me he thought I was a great mom (they are both very interested in what I am doing for my autistic son), and a straighforward and honest person, and the world needed more people like me.
So! That was my appointment.
A doctor told me I don't need meds.
A DOCTOR TOLD ME I DON'T NEED MEDS.
Now it's Clark's turn. I've got more work to do.
P.S. And I need to find my copy of BTVC! It's been missing for months now! >_<
Tuesday, April 29, 2008
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. :)
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. :)
Friday, April 18, 2008
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.
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.
Monday, April 7, 2008
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! :)
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! :)
Wednesday, March 26, 2008
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!
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!
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