Gus had an appointment with the Developmental Specialist on Wednesday, which of course through my new found sense of relative equanimity out the window. He seems to think that we should consider trying Gus on ADHD medication in the fall. He'd start with a low dose of Ritalin and see what happens. One thing I'm pretty well convinced of is that I don't want my son on drugs. I've got two major concerns, just about the physical impact of those drugs:
Increased heart rate
Decreased appetite
My child already has a pretty speedy heart rate; I can't imagine giving him something that would speed it up even more. That seems ludicrous to me. And he's skinny as a rail, despite eating as much as he can get his hands on. He certainly does NOT need to lose his appetite.
These are just the immediate physical problems that I'd worry about. Then there's the long range effects, which I refuse to believe don't exist as the doctor keeps trying to assure me. And do I really want to start a seven-year-old on the road to a drug dependency? I just can't see my way clear to that right now. Also, my husband was put on Ritalin as a kid for a short time; all it did was zonk him out. He didn't focus any better. This suggests to me that Gus might have the same result.
In my panic, I suggested to my husband that maybe we should try gluten free, just to be sure. Why should it be easier to consider drugs than dietary change? He said he'd go along with it, but was clearly not pleased. That night I started thinking, again.
If I look at each of Gus's 'issues' individually, I can trace every one back to myself or my husband. His biggest problem (academically) by far is attention span and difficulty with sustained attention. Both his parents continue to live with that. I don't have ADHD, but I've always had a wandering mind. No one ever thought twice about it because I was a straight-A student. I also talked incessantly in school; Gus talks incessantly all the time. Most of the hyperactivity and attention stuff, not to mention the fine motor skills are things that my husband still struggles with. I've had loads of sensory issues forever, including trouble with noise, cold and physical contact (getting a massage is like torture most times). But for all those difficulties Gus seems to have inherited from us, he's also picked up an incredible memory, a high level of intelligence and a lovely affinity for music (perfect pitch, even though he can't play an instrument or read music). So I'm not trying to make excuses or diminish his successes, just making the point that as far as I'm concerned his weaknesses are genetic, and it's not unreasonable to note that some genetic conditions worsen with each generation.
Does any of this mean that he wasn't effected by mercury? No. I double checked with the specialist and apparently, they DID NOT test for mercury a s I thought. Only lead. And, we realized this morning that last summer, my father-in-law had broken one of those new lightbulbs - the ones with the mercury in them (which I didn't know at the time). Hm...interesting to note. I wonder what they would have found if they DID do the mercury screen after that. The medical field amazes me sometimes. I think I will pursue this, just out of curiosity, but that doesn't mean I'm heading towards chelation - let's be clear on that for now.
I tried an experiment last night. We had taken the kids out for MM's birthday. I tried to steer her towards a Japanese hibachi place, but she was set on a steak house. So I decided to ease up on the dairy ban for a night, just to see what happened. Gus had a cheeseburger and mashed potatoes. By the time we got home, he was very gassy and his use of words slipped. He was still talking, don't get me wrong - the difference was very subtle. But he wasn't being as clear or lucid as I've come to expect. The past two nights, he's been exhausted to the point of tears. The first night he curled up in my lap and clearly told me what was upsetting him. Last night, he did the same thing, but part of what he was trying to tell me came out mumbled and garbled. Even this morning, my husband was trying to talk to him and had to remind him to use his words. Gus was talking like a Pokemon more than using his words. Was this in response to dairy? Maybe, maybe not. But I think I'll stick to casein-free for a while longer because if nothing else, the air in the house will be more breathable without it.
Showing posts with label casein-free. Show all posts
Showing posts with label casein-free. Show all posts
Friday, May 2, 2008
Wednesday, April 30, 2008
Straddling that Yellow Line in the Middle of the Road
I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.
I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.
I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.
There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.
My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.
All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.
Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.
I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.
When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?
I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.
I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.
I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.
I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.
There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.
My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.
All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.
Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.
I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.
When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?
I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.
I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.
Monday, March 3, 2008
Two Weeks Later
We've been able to maintain our dairy-free diet for two weeks now. Gus still won't touch any of the other milks, not even the chocolates or vanillas. But otherwise, it's gone fairly well. I think that I'm having to redirect a little less in general, more so when he's kind of tired.
The real test for me was what his teacher was going to say. I didn't tell her that we had made any changes and I spoke to her on Friday. Now, during the week, there hadn't been any negative reports. But when I asked her if she'd noticed any difference in him, she said she hadn't. The only difference was that he wasn't taking things off of the aide's desk. I've asked her to let me know if she does see any changes.
Even if there isn't a significant difference in his ability to focus, I definitely feel that he's more 'with it' and more conversational. Maybe the other part will come in time. It's only been two weeks after all. So we're sticking with this plan at least for a while longer.
We're getting as much calcium supplementation into the kids as possible: fortified juices, multivitamins with calcium and calcium gummies (those are a huge hit). Those things as many calcium rich foods as I can get my kids to eat seem to be working out fine. I was very excited to find that Apple & Eve now offers calcium fortified juice boxes. If I could find a decent non-dairy mozzarella or ricotta cheese, we'd be golden!
If you're trying a dairy-free diet, please share your experiences! We'd love to hear them!
The real test for me was what his teacher was going to say. I didn't tell her that we had made any changes and I spoke to her on Friday. Now, during the week, there hadn't been any negative reports. But when I asked her if she'd noticed any difference in him, she said she hadn't. The only difference was that he wasn't taking things off of the aide's desk. I've asked her to let me know if she does see any changes.
Even if there isn't a significant difference in his ability to focus, I definitely feel that he's more 'with it' and more conversational. Maybe the other part will come in time. It's only been two weeks after all. So we're sticking with this plan at least for a while longer.
We're getting as much calcium supplementation into the kids as possible: fortified juices, multivitamins with calcium and calcium gummies (those are a huge hit). Those things as many calcium rich foods as I can get my kids to eat seem to be working out fine. I was very excited to find that Apple & Eve now offers calcium fortified juice boxes. If I could find a decent non-dairy mozzarella or ricotta cheese, we'd be golden!
If you're trying a dairy-free diet, please share your experiences! We'd love to hear them!
Sunday, February 17, 2008
Trying Dairy-free
We've tried all-natural and low sugar diets with the slightest success and a big increase in our grocery bill. So they've more or less stuck. We tried gluten-free for a week and it was just too hard at the time and not cost effective. It wasn't a long enough trial run to have seen any results, but I'm not inclined to go there again until finances are much better.
So we're going to give dairy-free a go. Just for a week. From what I've heard if Gus has any kind of dairy allergy or sensitivity or allergy, we should start to see a reaction within a week. Also, since my daughter and husband refuse to drink milk, we're a good portion of the way toward being dairy-free anyway. I've had to find ways to get her an appropriate level of calcium without drinking milk. Cheese is going to be the real challenge. And mayonnaise. My kids both consume cheese in huge quantities. And I have tried to slip in dairy free or soy cheeses before to see how viable a dairy-free diet might be if we ever decided to try it. They hate that stuff. I may be able to get Gus to drink rice milk if I go for the unflavored kind. He's gotten accustomed to drinking skim milk and the consistency is close.
We're doing it this week because he's off from school so I'll have a chance to really see if there's any change.
I've also been doing some looking into this theory of yeast overgrowth in connection to spectrum disorders. While I'm not sure I totally buy it, I'm doing some research. I need to have a chat with our dietitian this week. So I'll have some more info on that shortly, I hope.
In the meantime, if anyone out there has advice on how to make picky little cheese lovers dairy free, I'd sure appreciate the input!
So we're going to give dairy-free a go. Just for a week. From what I've heard if Gus has any kind of dairy allergy or sensitivity or allergy, we should start to see a reaction within a week. Also, since my daughter and husband refuse to drink milk, we're a good portion of the way toward being dairy-free anyway. I've had to find ways to get her an appropriate level of calcium without drinking milk. Cheese is going to be the real challenge. And mayonnaise. My kids both consume cheese in huge quantities. And I have tried to slip in dairy free or soy cheeses before to see how viable a dairy-free diet might be if we ever decided to try it. They hate that stuff. I may be able to get Gus to drink rice milk if I go for the unflavored kind. He's gotten accustomed to drinking skim milk and the consistency is close.
We're doing it this week because he's off from school so I'll have a chance to really see if there's any change.
I've also been doing some looking into this theory of yeast overgrowth in connection to spectrum disorders. While I'm not sure I totally buy it, I'm doing some research. I need to have a chat with our dietitian this week. So I'll have some more info on that shortly, I hope.
In the meantime, if anyone out there has advice on how to make picky little cheese lovers dairy free, I'd sure appreciate the input!
Wednesday, August 8, 2007
Dietary interventions
In the past two weeks, I've come across people who have suggested to me that I should try different dietary methods of helping my son. One person, a dietitian, is a strong advocate of the gluten-free/casein-free diet. She also tried to convince me to try enzyme therapy. The other person was a mom with a child who has ADHD. She was advocating enzymes, supplements and an all-organic diet. I had heard about these therapies in the past, but quite frankly, they're very hard to maintain, and when I had first heard of them, our pediatrician couldn't give me the information I was looking for. So I thought that maybe it's time to consider one or all...and there's the problem. Which therapy is right?
Gluten-Free
Gluten is a protein found in certain grains: wheat, rye, barley, and because of contamination issues in processing, sometimes oat. When gluten is removed from the diet, the small intestine can repair itself. The gluten-free diet is recommended for those individuals who suffer from intolerance to gluten that can cause all manner of gastric disturbances (i.e. diarrhea, bloating, gasiness). The success stories sound very hopeful, so what do we have to lose?
The thing is, Gus has never had any gastric problems outside of the occasional virus. So would this diet, which is recommended for 3-6 months, be of any use to him? A good nutritionist may be able to evaluate the situation, but they can be a little pricey. One place I was referred to in Kingston, NY charges about $120 for an initial consultation. I was fortunate enough to be given a referral card, so I may be able to be seen for much less. We'll see how that works out.
On the plus side, it makes perfect sense to me that spectrum kids digest food a little differently than the typical child. I've said for years (to pretty much myself because no one around us likes to listen to me) that Gus can't handle chocolate in even the smallest of doses. A bit of chocolate would usually send him into hyperdrive for at least 48 hours. "But that's crazy...there's not that much sugar in chocolate...the amount of caffeine in chocolate is minuscule..." I don't know what it is in chocolate that has always made him nutty, but the only evidence I need is that when he has it, he's worse, and when he doesn't have it, he's better. So the argument for eliminating gluten from the diet feels right to me. And I'm certainly willing to try it if I can.
Which brings us to the down side. Although many more supermarket chains are starting to carry gluten-free products (locally for us, A&P and Hannaford's) in addition to the Mrs. Green's and health food stores, the fact still remains that these foods are much more expensive. If we were better off financially, hell if we even had 2 full incomes, it might not be such an issue. But when you're consistently having trouble staying out of the red every month, it's a very real issue.
Once we get past the cost, then there's the fact that gluten can be found in almost everything! And what about when we eat away from home? Gus's school doesn't follow a gluten-free program, and he's in a school for special needs children. Our families would certainly have a problem with adapting to a new diet. I've got an Italian mother-in-law who lives to feed her grandchildren pasta and bread, and those things are my kids' favorites. Yes, we can find gluten-free pasta (it's actually pretty good), but if I suggested that MIL try something different, that would be akin to asking her to throw a spitball at the pope.
Snacks are another issue. I tried a few things that I thought my son might like - he didn't. So I am still searching and trying to adapt before going full force into this diet. I'll report my progress.
Casein-Free
Casein is a protein found in dairy products. This wouldn't be too difficult to incorporate into our diets (if I could get my in-laws to stop obsessing over feeding my children ice-cream - they've gotten better about it). There are enough ways to get calcium into a diet without dairy, and my daughter already won't drink milk. Even though Gus does drink milk and eats yogurt, no one else in this household does. Soy milk hasn't gone over too well. I attempted rice milk, and I don't think he liked that too much either, but I'll need to try it again before I can say for sure. And even if the kids can't have ice-cream, they can still have ice-pops made with fruit, which they love just as much. Of course, Gus isn't one of those kids with any major food aversions, so it may be easier for me to make this particular transition than some others.
I'm still researching the enzyme therapy route and going all-organic, so that will be a post for another day.
Gluten-Free
Gluten is a protein found in certain grains: wheat, rye, barley, and because of contamination issues in processing, sometimes oat. When gluten is removed from the diet, the small intestine can repair itself. The gluten-free diet is recommended for those individuals who suffer from intolerance to gluten that can cause all manner of gastric disturbances (i.e. diarrhea, bloating, gasiness). The success stories sound very hopeful, so what do we have to lose?
The thing is, Gus has never had any gastric problems outside of the occasional virus. So would this diet, which is recommended for 3-6 months, be of any use to him? A good nutritionist may be able to evaluate the situation, but they can be a little pricey. One place I was referred to in Kingston, NY charges about $120 for an initial consultation. I was fortunate enough to be given a referral card, so I may be able to be seen for much less. We'll see how that works out.
On the plus side, it makes perfect sense to me that spectrum kids digest food a little differently than the typical child. I've said for years (to pretty much myself because no one around us likes to listen to me) that Gus can't handle chocolate in even the smallest of doses. A bit of chocolate would usually send him into hyperdrive for at least 48 hours. "But that's crazy...there's not that much sugar in chocolate...the amount of caffeine in chocolate is minuscule..." I don't know what it is in chocolate that has always made him nutty, but the only evidence I need is that when he has it, he's worse, and when he doesn't have it, he's better. So the argument for eliminating gluten from the diet feels right to me. And I'm certainly willing to try it if I can.
Which brings us to the down side. Although many more supermarket chains are starting to carry gluten-free products (locally for us, A&P and Hannaford's) in addition to the Mrs. Green's and health food stores, the fact still remains that these foods are much more expensive. If we were better off financially, hell if we even had 2 full incomes, it might not be such an issue. But when you're consistently having trouble staying out of the red every month, it's a very real issue.
Once we get past the cost, then there's the fact that gluten can be found in almost everything! And what about when we eat away from home? Gus's school doesn't follow a gluten-free program, and he's in a school for special needs children. Our families would certainly have a problem with adapting to a new diet. I've got an Italian mother-in-law who lives to feed her grandchildren pasta and bread, and those things are my kids' favorites. Yes, we can find gluten-free pasta (it's actually pretty good), but if I suggested that MIL try something different, that would be akin to asking her to throw a spitball at the pope.
Snacks are another issue. I tried a few things that I thought my son might like - he didn't. So I am still searching and trying to adapt before going full force into this diet. I'll report my progress.
Casein-Free
Casein is a protein found in dairy products. This wouldn't be too difficult to incorporate into our diets (if I could get my in-laws to stop obsessing over feeding my children ice-cream - they've gotten better about it). There are enough ways to get calcium into a diet without dairy, and my daughter already won't drink milk. Even though Gus does drink milk and eats yogurt, no one else in this household does. Soy milk hasn't gone over too well. I attempted rice milk, and I don't think he liked that too much either, but I'll need to try it again before I can say for sure. And even if the kids can't have ice-cream, they can still have ice-pops made with fruit, which they love just as much. Of course, Gus isn't one of those kids with any major food aversions, so it may be easier for me to make this particular transition than some others.
I'm still researching the enzyme therapy route and going all-organic, so that will be a post for another day.
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