RathyKay
10-03-2006, 01:55 AM
Well, I started to post this on BT2 last night, and then found out that OBT was coming back. So, I've debated where I should post this and decided here. I may yet go back and post on BT2.
For those of you who are curious, I just wanted to share our DAN! doctor experience. DAN! is Defeat Autism Now! While Tom is not technically autistic, he does have some autistic characteristics and has responded positively to the “autistic diet” – casein-free and gluten-free. Our DAN! doctor recommended we read “Children with Starving Brains” by Jacquelyn McCandless. The book describes the type of treatment he does. While our library didn’t have it, they borrowed it from another local library (and I decided to buy it after reading it).
For starters, our DAN! doctor began his career as a pediatrician. Some DAN! practitioners are nutritionists, nurses, and I don’t know what else. Mr. Kay wanted an MD, and I liked the idea of a former pediatrician. We were sent a 7 (?) page questionnaire to fill out before our appointment with request for copies of vaccinations, latest EEG and MRI reports, any genetic test results and any other relevant information. The detailed questionnaire covered my pregnancy (which was normal), as well as how many times he’s been on antibiotics and how old he was the first time he had them (less than a week), poop questions (constipated? yes diarrhea? rarely consistency? how often?), drugs he’s been on, drugs he’s currently on (none! Yay!.... and yes, I put “Yay!” on the form), supplements past and current, communication level (non-verbal or one word or two words, etc. Tom does speak in sentences, if you didn’t know. But, he talks like 3-to-4 year old, not an almost 6 year old.) and I don’t remember what else. I decided the format didn’t get across Tom’s story (history) very well, so I typed up a page detailing brain damage from severe hypoglycemia, epilepsy and the dairy connection, to where we are now.
At the end of the questionnaire was space for a prioritized list of 5 items of what I hope to accomplish. Really kind of a hard question. I can’t remember if I actually put “a normal kid” or not. But, constipation has ALWAYS been an issue (never bad enough for prescriptive help, but he has that distended stomach) and I’d like it “fixed.” I’ve wondered about yeast overgrowth (and if it’s related to his constipation), if he has any heavy metal excretion problems (they talk about that sometimes with autistic kids), what other food sensitivities he has (so we can avoid seizures). And boosting his immune system so that he doesn’t catch EVERY cold (and risk having a febrile seizure or getting another ear infection with antibiotics and yeast issues and it lasting forever).
We had a two hour appt and the time flew. I brought all of our current vitamin supplements (5 plastic bottles and 1 glass jar. Tom managed to build a tower with all 5 plastic bottles while we were there. His coordination has gotten much better since going GF.) The doctor had obviously read through our application and had two pages of things he wanted us to do. Mostly supplements and recommended levels of vitamins / minerals. I feel much better increasing some of these vitamins with a professional’s input than this study / mull it over / think some more approach I’ve been doing. He also offers the supplements at a discount (I checked online), as he wants parents to put their kids on them.
A lot of what we talked about I was familiar with (made me feel good). He told me I’ve been doing a good job, and was pleased with the food / seizure connections I’ve made. (It was nice to hear it from a professional.) We’re going to do what we can to get Tom’s digestive track back to “normal” from all the antibiotics and probable yeast overgrowth. After his blood draw this week, we’ll start him on digestive enzymes and increase his acidopholus as well as increasing vitamins and minerals. He mentioned that yeast can inflame the gut (which I had read), and it can also inflame the brain (which I hadn’t). He told me to quit cooking with Teflon (which I was pretty sure I should…. just hadn’t gotten around to throwing my pans away, but now they’re gone). And then he said to get rid of my aluminum pans! That caught me off guard. All my good bakeware is aluminum. He recommends cast iron and stainless steel and if you have the money… Le Creuset. I’ve been using cupcake liners in my aluminum muffin pans for now. Anyone have an opinion on stainless steel versus stoneware versus pyrex for baking breads and cakes and cupcakes?
He gave me a list of produce and pesticide content. He recommended buying organic for the top 12 or so high-pesticide produce and non-organic for the bottom 12 or so low-pesticide produce. (Peaches beat out strawberries for worst pesticide content. Corn has the least.) The ones in the middle… depend on the price difference. He also said NO FISH – mercury issue. (But, he wants Tom taking fish oil, recommending Nordic Naturals. I actually started him on it right before the appointment.)
Moving on, he said not to buy flame-retardant pajamas. When they get wet, some of the retardant can be ingested / inhaled (think slobber or an accident at night). He also said they do make “organic” mattresses (non-flame retardant), but you need a prescription to buy one. He’s happy to write one. Tom is currently in a toddler bed and I’ve been meaning to buy a twin-size mattress for the floor for him. I need to look into this more.
I think that was all we discussed. We left with a shopping bag of test kits, and instructions on what to do with them. There was a hair analysis kit for heavy metal toxins. Two urinalysis tests and lots of blood tests and even a stool test. I took Tom to Stanford for the blood draw and they sent away the urinalysis tests (as well as the blood). I shipped the stool sample via DHL (included in the kit). They’re testing for food sensitivities (delayed reaction IgG as opposed to “true allergy” IgE reactions… IgG reaction being a seizure or migraine or diarrhea or… and IgE being the peanut “I can’t breathe, get me to a hospital” allergy), malabsorption, vitamin/mineral levels, whether his immune system is actively fighting any viruses, and I forget whatelse. Tom is too small, so we have to go back this week for another blood draw. (He did very well with the last one, but this time he’ll know what’s going on beforehand.)
We go back in November for our test results (I know the food sensitivities test takes 5 – 6 weeks) and new recommendations based on those results. Depending on the hair analysis results, for instance, we may try chelation in the future. Vitamin / mineral recommendations may increase again. And we may have new foods to avoid. And for those of you who know about the SCD diet, he said he doesn’t recommend it unless the child’s progress seems to plateau… more of a last resort type intervention. I told him I wondered about trying it. He said to keep it in the back of my mind. And anti-virals if results warrant it
If you’re curious, we’re paying for this (doctor visit and tests) out of pocket and will submit to our insurance afterwards.
Wow! Is this long! If you made it this far… I guess I’m thinking that all of this is kind of related: food sensitivities, distended stomach, constipation, weakened immune system and hopefully (is that the right word?) his brain development (vision, cognition, balance, self-awareness). The removal of dairy and gluten definitely helped his awareness and development and I want more!
For those of you who are curious, I just wanted to share our DAN! doctor experience. DAN! is Defeat Autism Now! While Tom is not technically autistic, he does have some autistic characteristics and has responded positively to the “autistic diet” – casein-free and gluten-free. Our DAN! doctor recommended we read “Children with Starving Brains” by Jacquelyn McCandless. The book describes the type of treatment he does. While our library didn’t have it, they borrowed it from another local library (and I decided to buy it after reading it).
For starters, our DAN! doctor began his career as a pediatrician. Some DAN! practitioners are nutritionists, nurses, and I don’t know what else. Mr. Kay wanted an MD, and I liked the idea of a former pediatrician. We were sent a 7 (?) page questionnaire to fill out before our appointment with request for copies of vaccinations, latest EEG and MRI reports, any genetic test results and any other relevant information. The detailed questionnaire covered my pregnancy (which was normal), as well as how many times he’s been on antibiotics and how old he was the first time he had them (less than a week), poop questions (constipated? yes diarrhea? rarely consistency? how often?), drugs he’s been on, drugs he’s currently on (none! Yay!.... and yes, I put “Yay!” on the form), supplements past and current, communication level (non-verbal or one word or two words, etc. Tom does speak in sentences, if you didn’t know. But, he talks like 3-to-4 year old, not an almost 6 year old.) and I don’t remember what else. I decided the format didn’t get across Tom’s story (history) very well, so I typed up a page detailing brain damage from severe hypoglycemia, epilepsy and the dairy connection, to where we are now.
At the end of the questionnaire was space for a prioritized list of 5 items of what I hope to accomplish. Really kind of a hard question. I can’t remember if I actually put “a normal kid” or not. But, constipation has ALWAYS been an issue (never bad enough for prescriptive help, but he has that distended stomach) and I’d like it “fixed.” I’ve wondered about yeast overgrowth (and if it’s related to his constipation), if he has any heavy metal excretion problems (they talk about that sometimes with autistic kids), what other food sensitivities he has (so we can avoid seizures). And boosting his immune system so that he doesn’t catch EVERY cold (and risk having a febrile seizure or getting another ear infection with antibiotics and yeast issues and it lasting forever).
We had a two hour appt and the time flew. I brought all of our current vitamin supplements (5 plastic bottles and 1 glass jar. Tom managed to build a tower with all 5 plastic bottles while we were there. His coordination has gotten much better since going GF.) The doctor had obviously read through our application and had two pages of things he wanted us to do. Mostly supplements and recommended levels of vitamins / minerals. I feel much better increasing some of these vitamins with a professional’s input than this study / mull it over / think some more approach I’ve been doing. He also offers the supplements at a discount (I checked online), as he wants parents to put their kids on them.
A lot of what we talked about I was familiar with (made me feel good). He told me I’ve been doing a good job, and was pleased with the food / seizure connections I’ve made. (It was nice to hear it from a professional.) We’re going to do what we can to get Tom’s digestive track back to “normal” from all the antibiotics and probable yeast overgrowth. After his blood draw this week, we’ll start him on digestive enzymes and increase his acidopholus as well as increasing vitamins and minerals. He mentioned that yeast can inflame the gut (which I had read), and it can also inflame the brain (which I hadn’t). He told me to quit cooking with Teflon (which I was pretty sure I should…. just hadn’t gotten around to throwing my pans away, but now they’re gone). And then he said to get rid of my aluminum pans! That caught me off guard. All my good bakeware is aluminum. He recommends cast iron and stainless steel and if you have the money… Le Creuset. I’ve been using cupcake liners in my aluminum muffin pans for now. Anyone have an opinion on stainless steel versus stoneware versus pyrex for baking breads and cakes and cupcakes?
He gave me a list of produce and pesticide content. He recommended buying organic for the top 12 or so high-pesticide produce and non-organic for the bottom 12 or so low-pesticide produce. (Peaches beat out strawberries for worst pesticide content. Corn has the least.) The ones in the middle… depend on the price difference. He also said NO FISH – mercury issue. (But, he wants Tom taking fish oil, recommending Nordic Naturals. I actually started him on it right before the appointment.)
Moving on, he said not to buy flame-retardant pajamas. When they get wet, some of the retardant can be ingested / inhaled (think slobber or an accident at night). He also said they do make “organic” mattresses (non-flame retardant), but you need a prescription to buy one. He’s happy to write one. Tom is currently in a toddler bed and I’ve been meaning to buy a twin-size mattress for the floor for him. I need to look into this more.
I think that was all we discussed. We left with a shopping bag of test kits, and instructions on what to do with them. There was a hair analysis kit for heavy metal toxins. Two urinalysis tests and lots of blood tests and even a stool test. I took Tom to Stanford for the blood draw and they sent away the urinalysis tests (as well as the blood). I shipped the stool sample via DHL (included in the kit). They’re testing for food sensitivities (delayed reaction IgG as opposed to “true allergy” IgE reactions… IgG reaction being a seizure or migraine or diarrhea or… and IgE being the peanut “I can’t breathe, get me to a hospital” allergy), malabsorption, vitamin/mineral levels, whether his immune system is actively fighting any viruses, and I forget whatelse. Tom is too small, so we have to go back this week for another blood draw. (He did very well with the last one, but this time he’ll know what’s going on beforehand.)
We go back in November for our test results (I know the food sensitivities test takes 5 – 6 weeks) and new recommendations based on those results. Depending on the hair analysis results, for instance, we may try chelation in the future. Vitamin / mineral recommendations may increase again. And we may have new foods to avoid. And for those of you who know about the SCD diet, he said he doesn’t recommend it unless the child’s progress seems to plateau… more of a last resort type intervention. I told him I wondered about trying it. He said to keep it in the back of my mind. And anti-virals if results warrant it
If you’re curious, we’re paying for this (doctor visit and tests) out of pocket and will submit to our insurance afterwards.
Wow! Is this long! If you made it this far… I guess I’m thinking that all of this is kind of related: food sensitivities, distended stomach, constipation, weakened immune system and hopefully (is that the right word?) his brain development (vision, cognition, balance, self-awareness). The removal of dairy and gluten definitely helped his awareness and development and I want more!