response to the thermasol threadThanks for the post Ruth. It isn't fair that people slam the DAN protocol w/o having any direct knoweldge in it. The fact remains that it does improve the lives of so many asd children and their families. It is so important for everyone to understand that there are different biomedical treatments out there and that many people do the biomed stuff outside of the DAN protocol. The DAN protocol incorporates several of the biomed treatments in a fashion that can make postive improvements in children. The DAN protocol is not the same for every child. It varies depending on the child's ASD, lab work and response to the treatments. Both of my kids are doing the DAN protocol through a DAN doctor and their treatments are different, even though some aspects were the same. Both of my kids have made significant improvement, and like Ruth said I will know if there has been a diet infraction or one of their supplements or probiotics have not been given because of their behavior changes or physical reactions. Also, not all DAN docs do chelation. Some will be conservative and only to the transdermal chelation, instead of the IV.
 e.Ruth, I really appreciate your post. Often the discussions work their way into all-or-nothing on both sides and you rightly point out that it's possible to choose from a smorgasbord of options, perhaps leaning in one direction or the other. I agree that the treatments and philosophies are not all-encompassing, even though they are often portrayed as such in the discussions. Ruth, I am curious....what kind of vitamins does your child take? We haven't given any to Emily yet but I am very interested, just don't really know where to begin. She's only seen a dev. peid once and that was in Dec when she was evaluated and diagnosed with Autism. She is scheduled finally for a follow up in November. Emily's regular dr doesn't really know anything about Autism so I haven't really asked him about vitamins and such. I've thought about possibly seeing a DAN dr but I haven't contacted any yet, the nearest one I've found so far is about 2 1/2 hrs away. What kind of questions would I ask them over the phone before deciding to go see them? I don't think I'm interested in chelation and all that, but definantly interested in the vitamins, and thanks for sharing because I didn't know that a DAN dr would just do vitamins and stuff. Any info you can offer will be appreciated!!! Thanks ~~ THANK YOU ALL so much. I will delve into all of these links and all the links those will lead me to soon. I have a huge job interview tomorrow and Mason starts at his new sitters house too, so I have to make myself sleep some tonight.I want to add a couple of things, Mason gets little to no sugar. No candy, no juice, etc. He gets little amounts from bannanas and nilla wafers but I am pretty militant about his sugar intake. Besides his stool issues, I don't need any more energy fueling his behaviors...... I like the idea of the enzymes and the testing as a first step before delving into the lifestyle change the GFCF diet would require. I know it would be a big, big change for us and I want to check everything I can prior to making that difficult decision. But I will do whatever it takes to get Mason where he needs to be.... I also think that it is a shame that I have been without the support of so many like minded moms for so long. I became so busy just getting through each day, trying to "survive" that I neglected being more proactive. I am actually kind of ashamed, but I think with one DX then the other and all the educational woes, I just didn't have enough left to pursue everything I should. You all inspire me to do more than I thought I could. I KNOW A KID WITH DELAYS IN DEVELOPMENT WHO SEE A NEUROLOGIST IN MEXICO. HE IS GETTING STUFF TO GROW NEW NEURONS HE IS RECOVERING. 10 YRS OF THERAPY DID LITTLE FOR HIM. ENZYMES/PRBIOTICS WE ALL COULD BENEFIT FROM. Jill, neither has mine. I suspect any "cured" autistic kids were never autistitic. 97 out of 100 kids on the spectrum need a certain degree of help as adults, so it's wise to plan. This doesn't mean constant babysitting or institutions, but I can see, having a high functioning 13 year old, why they still need some NT direction. And he can "pass" easily. In fact, I have trouble convincing teachers he HAS ASD. Even so, it's a struggle without a little help, and I don't think it's a failure on the part of the adult if he needs a little prompting. I'm wondering if most on THIS board have classically autistic kids. Maybe that's the difference. My son is very verbal, fairly able to "pass" surface socially, and is aware of others enough not to stim, act 'weird' or seem ASD in public (he saves that for home in his room). If anything helped ASD kids not be ASD, the whole world would know by now. Once, if ever, it is discovered, it will be headlines and all of us will know. It will not be a secret.[QUOTE=MasonsMom] Michele and momtomathew offered some great info. There is a very very good possibility that your son has yeast overgrowth issues. A typical lab can not test for yeast overgrowth and even many of the bacterial problems in the gut. Michele suggested Great Smokies, there is also Great Plains Lab and Doctor's Data Inc. As Michele suggested, you could definately start with a good probiotic, which is also known as the "good bacteria." Probiotics natrually occur in the gut, but when a child has yeast or bacteria overgrowth the numbers for good bacteria to yeast and bacteria are not equal. It is so important for the body to have equal # of each to maintain good gut flora. The good bacteria kills yeast and bad bacteria. Other things you can do is try to reduce sugar in his diet. Yeast feed on sugar, as well as many carbs. I could never do the specific carbohydrate diet w/ my kids, but I have reduced the sugar intake and that made a word of difference. Here is info on how probiotics work: http://www.customprobiotics.com/about_probiotics_a.htm http://www.candidasupport.org/childrenandcandi.html (info about candida overgrowth in kids) info about testing for yeast overgrowth: http://www.candidasupport.org/candidatests.html Labs that test for yeast/ bacteria overgrowth: http://www.greatplainslaboratory.com/home.htm http://www.gdx.net/home/ http://www.doctorsdata.com/home.asp Something else to consider is the use of digestive enzymes. There a bunch of different kinds out there and they contain various enzymes, each serving a purpose, ie breaking down protiens, carbs, etc. Here is an informative site about the digestive enxymes and their purpose: http://www.enzymestuff.com/ The same site also provides the benefits of enzymes in getting rid of yeast and bacteria: http://www.enzymestuff.com/conditionbacteria.htm
I really appreciate this thread. It is difficult for me when people bash what I am doing to HELP my child. I am not at all saying that anyone here has done that. I just don't like to be made out to be some Frankenstein-loving freak who performs scientific experiments on my daughter and that is what the majority of the media portrays followers of the DAN! protocol to be. For the record, I am following the DAN! protocol (including DMSA Oral Chelation) as well as behavioral therapies with much success. A lot of people read things in the media that simply aren't true. It's like the Atkins diet. (Actually, I prefer to call it a WOL ~way of life~ not DIET). The media puts such a spin on things that uninformed people have no clue what it is about. Only through thorough research can one become informed. Autism is not solely a neurological disorder, it also affects the immune system as well as the gastrointestinal system. Our DAN! professional does nothing that I don't approve of. We paid over $2k out of pocket to have medical tests done on our daughter in the month of January alone. I don't understand how one can deny vitamin/mineral/etc deficiencies or overages in my Lauren's body. I don't understand how one can deny the levels of tin, lead and mercury that are in her body. I don't understand how one can deny the food allergies that are revealed by antibodies in her body. Heck, we didn't even know she was allergic to anything. All I know is that after going GFCFSF, getting rid of the excess levels of C-diff in her gut which were generating toxins, supplementing with quality, additive-free vitamins and minerals and lowering the levels of toxic metals in her body via chelation, she is 1000% better than she was a year ago. I'm sorry to come across this way and I hope to not offend anyone, but I am not some lunatic grappling at straws or hopping on a bandwagon to help my daughter. I have spent hard earned money to discover what is physically wrong with her. I am treating what is discovered via medical tests. That is all. I'm not giving her XYZ because it has worked with other parents. I am giving her what her body needs. And, a big and, it is helping her. That is what the DAN! protocol is all about. This subject is hard for me, I did alot of research about the gfcf diets when Mason was first dxd. After reading a book (not the source of my research) where the boy went from severe behaviors to NT after taking milk and dairy out of his diet, I tried this....with no results. I spoke with educators I respected and belonged to another Autsim online community, I found that the sucess with gfcf IS true, but for a very, very small percentage of individuals with Autism.Then I went to support group meetings in FL. I was the only non DAN! mother there and they looked at me like a criminal for not adhearing to their routines and beliefs, actually, nasy comments were made to me. I listened to a mother tell how her child was "CONTAMINATED" from an animal cracker (just one) and it took 3 weeks to get him back to where he had been.......this same mother early had described a child that didn't sound as though he was making great strides with behaviors. And whatever, it made me really push away from the DAN! stuff. I am ?fortunate? to have a medical explanation for my son's Autism, I know that diet or supplements can't "cure" him. I am all for ANYTHING that either helps or gives any other parent help or hope. It just wasn't something that seemed to apply to my family. Having said all of that, we have on going gastrio issues. Any fruit or juice and many foods (the few he loves) give him very loose stool. He is always starving, I just think it is time to re examine some of the dietary issues. Maybe I can look at it again, I just got such a bad taste in my mouth from my experience.....but I would love to conquer the diareaha issues. All I can get from his peds is that he has no parasites in his stool, I wouldn't even know what else to tell them to look for......... Anyone have any suggestions for a hesistant mom looking for non gfcf dietary alterations to try? Masonsmom... those mothers should be ashamed of themselves. I am so sorry you had such a horrible experience. Even though I am an avid believer in DAN!, I honor anyone's right to their own decisions. Only you know your child and what is best for him. We all have plenty on our plates and being made to feel as if we are not putting our child's well being as top priority is appalling. In regards to Mason's gastro problems, you may want to check into a good probiotic. They supply the gut with good bacteria to populate and rid the body of any "bad" ones in there. Acidophilus and lactobacillus are common ones. When you look at them, look for ones that have levels in the billions, not millions. A good one that is available virtually at any drug store is Culturelle. Google it and you'll see what people are saying. I use Kirkman's Ultra Flora Plus DF as well as the culturelle on occasion. Anyone could use a good probiotic! Also, you asked about what to do to find out what is going with Mason's GI tract and loose stools. We had some testing done through the Great Smokies Lab. They've changed names but here's the link... http://www.gdx.net/home/assessments/findsystems/gastro.html They gave us a comprehensive analysis. My Lauren didn't have a yeast problem either, but excess levels of clostridia (sp?) otherwise known as C-diff. High levels emit an toxic ammonia and it was severely affecting her. I wish you luck in your search for help! (hugs) MasonsMom, yeah, DAN people that I've met seem to adhere to it like it's a religion and i wonder how they get that way. At our autism group I kinda stay out of the way of the DAN moms--to be honest, and this is only from what *I* see (I don't live with these kids) they don't seem any better than they used to be to me, and my son is a lot higher functioning than almost all the kids there. But, hey, in real life I'm not going to get into it with nice folks who are trying to help their kids, but I'm amazed at the religious ferver of the most DAN members. When I tell them I tried DAN, it didn't help, it cost a fortune, and my son is making great progress without DAN, they act like I'm sacreligious so I no longer do tell them. They can see for themselves that Lucas is making great progress. I feel sorry for anyone who is putting out big bucks and not seeing a huge improvement, but I understand the need to believe. I'm not saying DAN never works. I don't know if it works sometimes. I know that the nature of ASD is that the kids improve, DAN or not, but, as long as kids are still getting regular interventions, I see no harm (except maybe to the pocket book) to taking kids to a DAN doctor, as long as the doctor hasn't convinced the parent that the child will be cured. If he has, sadly, the parent is in for a disappointment. Improvement will happen, DAN or not. Cure won't, DAN or not.Not to get into a p&ssing match or anything, I don't understand how one can say that there is no cure. I have hope. Unless I missed something, I didn't know that anyone here could see into the future. I would hate to be the parent who realizes in 10, 20, or 30 years, that XYZ helped cure this heinous thing called Autism. Until then, I will continue to seek out anything medically possible (provided I can see proof via medical testing) or behavioral intervention. If I declined to do something, irregardless of cost or effort, and it was discovered that this helped ASD kids, I couldn't live with myself. And to clarify, CURE or not, I will love my daughter with EVERYTHING I have. I just want to do whatever humanly possible I can in order for her to be at maximum potential. I know I won't be here for her entire life, God willing, and I want her to be able to function in this cruel world without me.
Right. As of now there is no cure. And accepting our kids, imo, is the best way to help them. They are different, not mentally ill or "poor things." Many ASD adults have no desire to change. I post on a few Aspie adult boards, and they are happy as they are for the most part. Most of their discomfort is with those who expect them to want to change and be typical. Unlike with mental illness, ASD is a neurological different and the people can be perfectly happy not fulfilling NT goals. If interested, go to an adult ASD e-mail site and see. I found it very helpful and hopeful as my son's happiness is my biggest concern. There are a lot of services for ASD adults, including partially assisted living in apartments with or without others. The adults are helped, but not coddled. I want this for my son. He has a sib who would take him in, but I don't envision him sitting around in his grown sib's house as the most fulfilling life for him. There are options in between total independence, which is very hard for ASD adults and being in an institution, which is almost non-existent now (thank God!) I don't see how a neurological hardwiring issue can be cured, but, hey, I'm not an expert for sure. I talk to many ASD adults who can "pass", but it's a big stress for them, sort of like how we'd feel if forced to act autistic 24/7. Most of them just want to be alone after a long day of "playing" NT. Talking to adult ASDers is very telling. Of course, they have varying opinions, but this seems to be the biggest one, at least in the two groups I belong to. My son is definitely autistic and has never had health issues. He's never had the runs, he has no allergies, he rarely even gets a cold, he's always been the absolute picture of physical health. Changing his diet would do absolutely nothing for him other than to deprive him of foods that he loves. Good catch jenni actually I didn't think of that but yes finding out about their DAN doctor is a very good idea and should prevent the unfortunate experiences that pammar describes forker I do truly believe that all interventions can be helpful to some, but in my case-I've exhausted all medications and are now looking into more natural solutions. I do truly believe in what mother earth has given us and provides with the tools to nourish and heal our bodies. We all want a immediate result and when we don't see it right away--we exit out sometimes. I've tried it the doctors way with meds and now I'll go with things{supplements.} that don't have so many terrible side effects. I'm hoping all the meds that I've had my son hasn't caused any permanet damage. There are actually no meds for ASD. Some kids take meds for accompanying behavioral problems or co-morbid disorders, but ASD itself does not change with medication. My son is unmedicated and doesn't need any. I'm not convinced supplements help, but, under a doctor's supervision, I can't see how they would hurt. Fail safe cooking by Sue Dengate:
http://www.fedupwithfoodadditives.info/factsheets/Factsheet. htm It takes a little of practice, but recognising that some fruit and veges have high levels of salicates-that repell insects-can cause some behavioural issues. Donna Williams talks about salicates in one of her many radio interviews found at http://www.adapt.org.au/phpBB2/viewtopic.php?t=262 Interesting read. Also, be very aware of preservatives and colourings and eliminate all from your sons diet. We are at the moment trialing enzymes.
By the way Pam you did mention DAN! in your posts.. [QUOTE=pammar]I admit I didn't read the entire post, mostly because no matter how many DAN people try to convince me it's not genetic, I know that if you have one kid with it, you have a high probability of having another, plus I don't have faith in DAN doctors.[/QUOTE] and [QUOTE=pammar]I suspect DAN doctors will never admit they aren't sure what causes ASD. It's the same thing. Not being flexible when we don't know yet. I know plenty of parents who were ripped off by DAN doctors (shrug). Kids with ASD improve. The nature of ASD. With or without DAN doctors the kids will get better unless they aren't treated with interventions at all. [/QUOTE]
I think that as long as you find something that works, you should do it, whatever it is!!! We tried a variety of supplements for a long time, and when we started having trouble getting him to take them, we stopped and then realized that it made no difference at all. But if they had worked, you bet we would have kept up with them. Ruth, I'm so glad for you and for Matthew that you've found something that works, and even though it's not something we do, I totally support your decisions!!! momtoMatthew wrote ... only because I feel the need to defend the DAN! protocol. well you shouldn't have to defend the DAN protocol because the protocol is about testing for various problems and then prescribing certain treatments for the problems uncovered DAN is not about prescribing chelation as the first step as unfortunately many people encounter nor should anyone feel bullied by their doctor and pammar's experience ( and others ) is most unfortunate it should not happen we had a traumatic experince with a doctor ( not DAN ) with our autistic son it can certainly leave one bitter towards the medical profession DAN like any specialist area will attract those professionals who have their patients best interests at heart but sadly also attract those who feel they can jump on the bandwagon and rip people off Parents considering DAN should learn as much about the protocol before seeing a DAN doctor so they know what they can expect, I recommend the book "Children with starving brains" by Dr. J McCandless Gleaning experiences from others, even negative ones, should give an honest expectation of what and what not to expect forker [QUOTE=forker]Parents considering DAN I just wanted to add to your post (you probably meant to say this anyway) that aside from learning about the protocol, the parents should do as much research as possible about their DAN doctor. That includes going to various biomed message boards and asking about parents' experiences about the DAN doc. You can also go to www.generationrescue.org and click on "Find a Rescue Angel" in your area. These are parents who are doing the biomed treatments w/ their children. You can at least ask them about their personal experiences and even ask if they know of other parents you can talk to about the doc. If you are lucky, you may find a network of parents doing the biomed treatments in your area. I did go to a DAN doctor. Lucas was the same and the DAN doctor was nasty, saying I didn't do it right. I haven't seen any kids change because of DAN, which is my reference point. However, that isnt' to say some don't. I'm neither pro or anti DAN. As long as the parents continue with other interventions, I don't think it matters. Can't hurt to try. I didn't mention DAN, but maybe somebody else did. I know lots of people going to DAN. Frankly, my son is doing better then their kids, but maybe they were more affected to begin with. I don't really know. Perhaps, if it helps, it helps more severely affected children. Lucas has never responded, good or bad, to supplements. He just makes good progress and continues that way. We've cut out all supplements and he's still progressing very well. In our autism group we have several parents taking kids to DAN doctors. I personally couldn't see a benefit to my son so we stopped going, but, if you think your kid is doing better, hey, I'm for anything that works. I just meant not to stop the other interventions. Bumping the post |
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