DAN doctors/alternative meds/vitamins

[KirstenB]

My fellow ASD parents, have any of you been to a DAN (Defeat Autism Now) doctor? What was involved? Did they do blood tests? Would you recommend going to one? Would a regular pediatrician be aware of tests that would help identify any biological differences in our kids? I'm not expressing myself very well, but I go back and forth on this topic. Some people post about how their DAN doctor is amazing, and others post about how the DAN doctor was a quack.

Our younger dd Zoe is 3, and mildly autistic. She doesn't have any eating issues, nor digestive, nor any difficult behaviors. On the other hand, she has eczema, so she's obviously allergic to something. I haven't tried any vitamins, like the omegas on her yet, but I probably will be trying them soon. Unfortunately, science never was my strong suit, so I get lost in trying to read up on biomed therapies.

I've learned a lot from you guys, and consider you my friends.

 

[BeckyScott]

Science was never my "thing" either.

We've been to two different DANs, for one appointment each. They were both problematic in their own way, not having so much to do with their ability, but other factors. Mostly the cost and distance.

They will probably want to run labs, no matter what DAN you go to. And that's not cheap, but it's informative. It will also involve a blood draw, which is bad, but having said that it's probably easier with a smaller child. (we all know the physical capabilities of a peeved child with autism)

I must say I don't know that the DAN stuff helped with DS's autism, per se. But it did help his asthma, and it did help his eczema for a while. I have collected all info I could and am sort of winging it, in a careful way. The omega-3's have helped the stimming, but it's not completely gone. The de-yeasting helped the eczema, but either it figured out a way around or just came back when we stopped medding.

I believe either the TACA website or their Yahoo group has information about how to do DAN on your own, if you can't afford to see a DAN or live somewhere where there's not one.

I must say, our regular ped is a little more open-minded than most. She was pretty interested in the bio-med approach. And when I presented her with the laundry list of supplements the second DAN recommended, she said she didn't see anything wrong with any of them, they were all perfectly fine things to suggest. Some doctors will play along and some want nothing to do with it. Probably a D.O. is going to have a more holistic approach, but I've read stories of D.O.'s that didn't play nice with the bio-med.

DS also didn't have any tantrum behaviors, although he did stim quite a bit, no digestive issues that we knew of (apparantly it's pretty common for our kids to have diarrhea etc), and he'd eat plenty although he was pretty picky. The IgE and IgG allergy tests were a real eye-opener. He came back very high, like off-the-chart high, on several things, and indeed the gluten and all the dairy came back medium-high. I mean, those tests I understood. Not much science involved to interpret.

I would suggest joining the TACA yahoo group, and just hanging quiet and reading. It's a very active group though, set it up on daily digest. They're pretty good about explaining things in plain English.

 

[KirstenB]

Becky, thanks for being so informative! I've been thinking about going to an allergist for testing for Zoe. It sounds like your DAN doctor did the allergy-type testing. On the plus side, it would be great to have allergy testing, but with a doctor who specialized in autism.

The doctor in Richmond I'm considering is Dr. Mary Megson. I googled her, and came up with a lot of vaccine-related articles. It sounds like she specializes in treating the regressive form of autism, which is not what Zoe has.

When your testing for gluten and casein came back high, did you guys do the GF/CF diet? Even though Zoe will eat/drink anything, and almost never has even diarrhea, we did start limiting her dairy a year ago. We saw a great difference in her ability to focus and pay attention. Ironically our 10 yr old is the insanely picky eater, not Zoe.

Thanks for the info about TACA. I haven't visited that site, but I will now.

 

[mechurchlady]

Definitely go to an allergist for allergy testing. Kids cannot tell parents the little signs of an allergy sometimes. One key to good health is to avoid toxins from allergies. World wide kids live on vegan diets, religious diets, etc. It will be easier to start now a child on an allergy regime.

A food diet is another thing you can do. Look for behavior changes like a sweet little boy turns into a monster until just before lunch then back to angel then at dinner it is the monster coming out. One monster child was due to foods in breakfast and dinner but when removed he became a sweet child all day long. Pica is another sign and I have read about kids craving something they are allergic to and myself (SID) loves melted cheese and ice cream. I cannot get enough dairy and chocolates despite my sensitivities. Look for changes such as a trip to grandmother for a week and the kid has changes in mood, personality, or health. Every Christmas the pine tree comes in the house and the family starts getting sick is an example.

I would say go with vitamins as they cannot hurt unless you are allergic to them. If you do not see improvements anything then you might quit. I would do a multivitamin daily to make sure the kid gets all the vitamins even if you do not go into the current autism related vitamin regime that are out there.

 

[DizneyGurly]

My dd is 4 and has ASD. We saw a DAN doc for about 1.5 years. I was very pleased but it was very expensive. I found a clinical nutrionist in-state (our Dan was 600 miles away in NJ) who did lots of the same test and supplements but for a lower price. He does the allergy testing, metals testing and so on. His phone consult fee is $50 for 30 minutes when our DAN charged $250 for 30 minutes. He also has my daughter on a yeast protocol because she has gut issues. Just wanted to let you know about the nutrionist.

 

[KirstenB]

Mechurchlady, thanks for the advice on allergies. Our older dd has ADD, and the world's worst diet. I often wonder if a change in foods would change her ability to focus. She is very picky and already underweight. If I try to get her to eat anything outside of her narrow preferences, she'll readily go to bed hungry. Our little girl, Zoe probably does need allergy testing.

Angie, how do you locate nutritionists? Are they the same thing as a dietician?

Again, thanks everyone for your help. I sometimes frequent autism-related sites like Autismspeaks.org, but frankly, so often things escalate into fighting matches, I get worn out if I spend more than a couple of minutes on those sites. I really feel a special bond with y'all, and appreciate the calm and helpful nature I find here.

 

[mechurchlady]

KristenB:
You need to find out why she won't eat. It could be sensory issues. I love onions but hate slimy foods and any food that is wet and watery. Some sensory issues are the shape of the food, colour of food, texture of food, crunchiness, slimyness, smells, tastes, sounds of the food being eaten, and the feel in the mouth and throat. Sometimes it can be medical problems like a weak set of jaws, difficulty swallowing or gag reflexes.

Having a person with sensory issues or weird diets means being creative. For me I just now was not happy over oil peanut butter but I added some cashew pieces and now will probably eat most of the jar. I read on this board about some of the limited things kids eat and you are not alone. There was a long thread on the topic of picky eaters. I cannot find it right now as I got hiccups from the peanut butter, lol.

 

[DizneyGurly]

Angie, how do you locate nutritionists? Are they the same thing as a dietician?

What a hack job I did on the word nutritionist!

I think that a dietician mainly devises a food plan to help with your health condition. I would say that a dietician and a nutritionist aren't the same.

I was lucky and met a mom who was bringing her son to speech therapy right before us and we would be in the waiting room at the same time. She told me about the nutritionist. Her son was seeing him as well.

We have been on the GF/CF diet for 2 years now. Dd was born with a milk problem and had to be on specialty formula. The mainstream doctors never did call it an allergy but I can tell a huge difference in her being off of the milk. A message board that I liked was at autismweb.com. Just click on message board. They have one board just for biomed and diet and the parents there are very helpful. Autismspeaks.org is a scary messageboard. People tend to enjoy jumping the new parents who are just looking for information.

 

[DisDreaminMom]

What's the deal with all these treatments being so god-awful expensive? I mean, really, who has the money to do this? I can barely keep up with the deductibles from regular dr.'s and dentists, let alone add in paying full price for something that isn't even an exact science. My DH makes a 6 figure income and we still can't afford this stuff. I called about Vision Therapy because it would most likely help DS (6) with dysgraphia, but it was going to be almost $5,000 for the "treatment". Are only rich people the parents of ASD kids? What about the rest of the world? I can't even stomach the thought of paying for the DAN dr's. We are letting them use our kids as guinea pigs for their own research and paying them for it!

BTW- to charge so much for labs is INSANE. It cost mere dollars (maybe) to run these labs. I just choke at the idea of paying $100's of dollars for something they have marked up five thousand times. I just don't get it. I might try some of this stuff if I felt like I didn't have "sucker" written on my forehead. There is a new storefront place that just opened up called "Any Labs Now" or something to that effect, but I have seriously contemplated having DS get a full workup and figuring it out from there. And the mere fact that there is a retail store for this kind of thing should make you super suspicious about how much these DAN dr's are charging. Can you say $ machine?

My allergist even recommends just doing an elimination diet before running labs for the most part, because what happens in a tube may not be what happens in you. It's all trial and error. I test positive for every known allergy in the Dr's test tubes, but it turns out that I have hyper sensitive skin and will react to anything they scratch into it. I am really only allergic to about a fourth of what I test for. (How much did that cost me? About $2,000 for several extensive, painful allergy tests all saying the same thing. Free for the dermatologist my husband worked for to look at my arm and tell me I had an overreactive immune system!)

I'd love to try vitamins and such or DS, but do you realize how easy it is to overdose on many vitamins and do extreme harm? My uncle had been going to an alternative medicine DR for the last six years after he had cancer and was doing all his B12 shots and protein drinks and vitamins. A couple of months ago, he thought he had MS because his muscles were very weak (even though he was working out) and he had extreme fatigue. He was always sleeping in late and had very low energy, and the specialist kept giving him more treatments to help him, but he was always miserable.

His lung specialist finally asked him what exactly he was taking- from food to vitamins to IV's to energy drinks. It turns out he was so toxic from OD'ing on so many vitamins, and his thyroid level was through the roof from the dosage he was taking, he was killing himself. He quit taking any of the stuff the Dr. gave him, started eating real food, and feels better than he did before the cancer, even. This guy spent a fortune getting what he thought was the best care (seriously, tens of thousands of dollars a year) and lost his business and most of his social life because he was tired, sick and hopped up on vitamins and slept in until noon every day.

I'm just saying- with small children you can't even be sure of the dosages on these chemicals (they are chemicals!) because it's never been tested. My thought is that if these kids have such extreme sensitivities to so many other chemicals- can you be sure they are not overly sensitive to the "treatments", too?

 

[BeckyScott]

Kirsten, we started the gf/cf a few weeks before the first DAN appt. I figured it was about a 98% chance that he was going to suggest it anyway, so I just went ahead and started it. I do remember reading, if you suspect celiac, not to go gf before the testing. But I guess for a regular allergy tests, it's okay?

As far as the supplements, at this point Justin only takes a calcium supplement (since he's dairy-free and I've never seen a dark green veggie cross his lips), the EFA, and SuperNuThera (which is a multi-vitamin from Kirkman, but porportioned for kids on the spectrum, dosed by weight). I felt okay about the SuperNuThera because it's such a popular vitamin, used by huge amounts of kids, and it's been around for ages.

He was also on soy formula as a baby, couldn't tolerate regular formula. Neither one of my boys could. And looking at it, I am somewhat lactose intolerant myself, so it shouldn't be a surprise.

The DAN website has a directory. Some of the DAN's are allergists, and in our case that was the direction to head. Justin didn't have the regressive thing, but I remember taking him to the doctor at 2 or 3 months because of eczema. He did move to milk later and proceeded to drink it nonstop. If I would have known then what I know now...

And he's always had sensory issues with food. He doesn't like mushy food. Must be harder texture. But we also know he is hypo-sensitive in general, so that makes sense. And I remember as a baby, to begin with there was only one brand of bottle he would take. He really disliked jarred baby food, any of it, but once he was old enough to self-feed cheerios, we were rockin'. And he didn't want to use utensils. And we had a very difficult time weaning to a sippy cup because he wouldn't lock his lips around the spout. I had no idea what was going on at the time, although he was still using the bottle when he started therapy and the OT helped with that, and of course presented challenges to the SLP. He's just very hypo-sensitive, which is both a blessing and a curse. The good side is when his eczema flares, he barely notices, and if it were me I'd be totally crazy with it. Or when we put meds on the eczema and I'm sure it must sting, he doesn't notice. He calls the eczema his "tickle spots" and he'll scratch til they're bleeding. That's some messed-up sensory.

 

[Forevryoung]

If you go to a nutritionist make sure that they are a RD (registered dietician)-

A registered dietician must complete a degree, internship, and pass an exam to get the title (dieticians are all nutritionists)

Anyone can call himself/herself a nutritionist. That does not mean that they have the educational background or are qualified by the board. They are not recognized by insurance companies or the medical profession.

The American Dietetic Association website has a list of providers listed by area.

 

[KirstenB]

Ack...I knew this was going to be complicated, that's why I keep postponing it Becky, Zoe is hypo-sensitive, much like Justin. She didn't have feeding issues, but it's definitely making potty-training an issue. I'm not sure her body can feel when she has to go.

DisDreaminMom, you bring up a good point aabout safety and vitamins. I take them for granted since you can just go out and buy them, but I'll definitely run them by dd's pediatrician. The SuperNuThera that Becky's talking about is something I'm going to talk to the doctor about.

Foreveryoung, and Diznygurly, thanks for the help about nutritional advice, and finding dieticians.

Mechurchlady, yes I need to try to help our older dd with her eating issues. For better or wworse, since she's the "normal" one, I tend to overlook her needs.

 

[mechurchlady]

Kirsten B:
She may be more normal but please make sure each child gets the fullest attention possible. It is hard to be the "normal child" when your needs and wants are left on the road side for other children. My mother was ignored and slapped around as a child because her 13 month older sister was a handful who climbed a feed silo ladder as a toddler. Postponing stuff does not help as you need to get kids trained while their brains are still growing.

Now for a big hug fest for you. You are a great mom as some mom's would not research and find out how to help their kids. Grade A #1 top of the line mom you are, yep yep. Chin up and have a box of chocolates on me.

 

[BeckyScott]

Kirsten, just fyi, the SuperNuThera was not the DAN's idea. The DAN's idea was to do each vitamin individually. That sounded pretty nightmarish to me. So I got the SuperNuThera. The DAN said the SuperNuThera was "okay" but his idea was better. I thought the idea of giving my kid 30 individual vitamins, vs one teaspoon of something... well, seriously... but some parents do that. It makes it easier to adjust the dosing of each vitamin if necessary, you can't do that with a multivitamin.

Also, most DAN's have a preferred brand of supplements, which usually they happen to sell. Even Great Plains lab is hooked in with a supplement company. And trust me, very few of the brands they suggest are available at a typical health food store. I guess it's not so different from most regular doctors, they have the meds they fall back on most of the time, you know? The ones they're most comfortable with. And the supplement companies most of the DAN's deal with are very good quality and very picky about the allergen-free thing. But does your kid need a calcium supplement from a specialty company, or will a good health food store brand do, or just whatever you find at WalMart? That's going to be up to you to decide.

Then you have the problem of going to one DAN, buying everything they suggest in that brand, and then later if you switch DAN's they'll probably want a different protocol using their brand. Ugh.

Also, re: the SuperNuThera, the Kirkman website you can look at the ingredient list for all their stuff. I think if you click on the product it will pull it up. Then you can just print it out to show to your dr before you buy. They also sell "samples" if she's picky about flavor- they're not cheap but better than wasting a big bottle.

 

[KirstenB]

Kirsten, just fyi, the SuperNuThera was not the DAN's idea. The DAN's idea was to do each vitamin individually. That sounded pretty nightmarish to me. So I got the SuperNuThera. The DAN said the SuperNuThera was "okay" but his idea was better. I thought the idea of giving my kid 30 individual vitamins, vs one teaspoon of something... well, seriously... but some parents do that. It makes it easier to adjust the dosing of each vitamin if necessary, you can't do that with a multivitamin.

Also, most DAN's have a preferred brand of supplements, which usually they happen to sell. Even Great Plains lab is hooked in with a supplement company. And trust me, very few of the brands they suggest are available at a typical health food store. I guess it's not so different from most regular doctors, they have the meds they fall back on most of the time, you know? The ones they're most comfortable with. And the supplement companies most of the DAN's deal with are very good quality and very picky about the allergen-free thing. But does your kid need a calcium supplement from a specialty company, or will a good health food store brand do, or just whatever you find at WalMart? That's going to be up to you to decide.

Then you have the problem of going to one DAN, buying everything they suggest in that brand, and then later if you switch DAN's they'll probably want a different protocol using their brand. Ugh.

Also, re: the SuperNuThera, the Kirkman website you can look at the ingredient list for all their stuff. I think if you click on the product it will pull it up. Then you can just print it out to show to your dr before you buy. They also sell "samples" if she's picky about flavor- they're not cheap but better than wasting a big bottle.

Thank you from the bottom of my heart for your experience. I didn't know the DAN doctors sold the supplements/nutrients themselves. I'd always heard these doctors were expensive, and often times, insurance wouldn't cover their treatment. That I understand. But I had no idea that much of the expense could come from the products themselves.

Mechurchlady, thanks for the reminder about looking out for Andi too.

 

[BeckyScott]

My mother was ignored and slapped around as a child because her 13 month older sister was a handful who climbed a feed silo ladder as a toddler.

I know this wasn't supposed to be funny, but I had to . My oldest (the "typical" one, if you will) climbed a ladder onto the roof of our house when he was 18 months. That's when the gray hair started spontaneously sprouting from my head. That was only a 1-story house, a silo I would have probably passed out.

But I do know what you mean. We are just now really investigating some issues with him, and he's 11. And I feel horribly guilty for waiting, for being so focused on one child that the other one started to slip thru the cracks.

I say, if you end up doing labs on one kid, do 'em both. Might as well owe the lab company a ton of money. I still want to do labs on our oldest (ADHD and maybe other stuff too), for food allergies and also metals. Until then I've got the Feingold packet and am sneaking him into that. I mean, once you've got one kid allergic to like 2/3 of the food in the universe, why not throw Feingold in on top of it?

 

[mechurchlady]

Not offended and it runs in my family. I am a joker and my grandmother once put a dead pigeon in my grown-up mother's bed. My mother's half sister in 1929/1930 put a black stocking on her hand and snuck up to the kitchen window and popped her hand in the window. Grandmother had the baby, Johnny in her arm and his head was on her shoulder. She had her back to the window and could not under stand why Johnny went limp as the stocking puppet scared the poor little tyke.

In my family mental quirks are pretty common like my aunt and I and grandmother are pack rats but mom just dont throw things out and her other sister had a stuff house but was in denial, lol. Kissing the ground is another traint. Trick knees or ankles, lol, so that my mother used to trip a lot and others have that trait. Diabetes runs in the family.

Not mad and yep on the silo, grandfather was cussing in portuguese all the way to the top. Come to think of it, them girls got Johnny to jump off a roof into a hay loft where he broke a collar bone. Maybe that is why I have dark hair and no kids, lol.

 

[KirstenB]

The liquid SupraNuThera lemon-lime flavor vitamins I ordered arrived today. On the TACA website, several people cautioned against the Tropical Fruit flavor, but recommended the lemon-lime. OMG, the lemon-lime was so horrible, I don't even want to know what Tropical Fruit tastes like!!

Zoe's only 3, so I don't want to try a pill on her yet. I'll try to think of something I can stir this stuff into, so she won't taste it. I"d envisioned her just drinking it down, because she'll take any liquid medicine I give her. Looks like I'll be the guinea pig tomorrow....I'm thinking maybe Coke, or pudding.

 

[lucigo]

The liquid SupraNuThera lemon-lime flavor vitamins I ordered arrived today. On the TACA website, several people cautioned against the Tropical Fruit flavor, but recommended the lemon-lime. OMG, the lemon-lime was so horrible, I don't even want to know what Tropical Fruit tastes like!!

Zoe's only 3, so I don't want to try a pill on her yet. I'll try to think of something I can stir this stuff into, so she won't taste it. I"d envisioned her just drinking it down, because she'll take any liquid medicine I give her. Looks like I'll be the guinea pig tomorrow....I'm thinking maybe Coke, or pudding.

Just to prepare you, no matter which one you get she will be able to taste and smell from across the room. The stuff is potent! I tried the liquid, the chewables, the powder...finally gave up and eventually got my son to eat disney Cars chewable gummy vitamins, its better than nothing. LOL

 

[bookwormde]

Yes thank goodness for chewable vitamins, just waiting for them to get Vitamins D up top the new recommended levels.

bookwormde