D.A.N treatment with no luckHi Jamie, I agree that this is not something you can put a time limit on, for some kids there are treatments that work very quickly, and others just get better little by little with some of everything. We have been doing the protocol for almost a year now and we have not gotten speech yet. Our son however was not walking when we started and he did start walking a couple months in, so there is improvement even though it is slower than we had hoped. Mainly you just have to believe and never give up hope, there are so many things out there that you can try and so many tests that will need to be done but if you hang in there you can help him to have the best life possible. It's hard and it's expensive, but what keeps me going is visiting the message boards and hearing about the recovery and gains of others - Hang in there!
Jamie, just a tip here on website stuff. They are probably about to move this post and you may not know where it went. Go to the Autism-PDD Message Board wording, top left and click it. Do you see all the various sections? There is one or more areas for alternative treatments, and that's where you should start any DAN threads...it'll end up there anyway. Some newer folks get confused as to why their posts disappear. News articles also go into their own area, as do off topic items into Hangout with Friends. Hope this helps - its in the rules, but nobody ever reads them! Hello, I wanted to get some consensus from other parents who have spent the hours and $$ dong the DAN treatments? I have a 7yo autistic boy who is very happy, but has no "English" type speech and has many obsessive compulsive disorders. Well, we went to a DAN doctor about 3 months ago and we are giving him everything "Which is alot" that the doctor asked.. heck i think my 7yo is healthier than anyone in the fam now days with all the supplements we are giving. Anyways, its been 3 months and still no improvements in speech, or the obsessive behavior. The only thing i could say has been positive, is that i dont think his appitite is there are much. My questions is.. when do i know this isnt working and move on to the next thing? I know some people have had wonderful results, but have any of you not seen any change after doing the DAN recommendations? Am i just not waiting long enough? Any thought or advice would really help.. Thanks Jamie DAN protocol is something you might expect to give at least a year before giving up. If not longer. Our childrens bodies did not break down in a matter of a couple months and they can not be expected to be rebuilt or healed in that amount of time. Also, the older a child when interventions are started the longer (sometimes) you can conceivably expect to see results. Generally you start with diet, then add supplements in order to heal the system and prepare for more in depth treatments. This could take months and months to accomplish depending on the child, their age and the particular ailments they are suffering from. Also, consider researching your DAN!. Is he experienced? When is the last time he attended a DAN! conference and how often does he go? How well recommended is he on biomed sites and with local biomed parents (if there are any in your area). All DAN docs are not created equal..... there are many that have not attended a conference in a while and new treatments and protocols are constantly being pioneered by the DAN think tanks. I have talked to many parents whose DAN docs had no idea what kind of tests my son had done or what kind of meds/supplements he was on for brain inflammation etc., or even where to get certain testing done. Our DAN is cutting edge, and charges no more than any other doc out there. This is one instance where you definitely want to get the most bang for your buck and a doc who doesn't keep up with the latest treatments and protocols does not cut it. After a little over a year of DAN my 4 year old is pretty darn close to being recovered. We couldn't be happier or want any more at this point besides to see where he will be after a couple more years of development... Hope I was able to help a little and I'm sure you'll get more advice. Good Luck! I'd definitely give it longer. We haven't started seeing a DAN yet, but my son is on the GFCF diet and a few supplements with some success already. I know one child personally who has gone through the whole protocol with huge improvements, several who have seen enough improvement to keep it up, and one who didn't see any improvement at all. To some extent, it's just luck of the draw, but the DANs are getting good enough results to stick with it for a while.I agree w/ Julie.MissPickwickian - I love your BAP plan - makes lots of sense and now I don't feel so left out in regard to this treatment mess. I'm am not a fan of DAN. We tried because it is "the thing to do" and felt that if we didn't, we would always wonder what if. Tons of money, time, heartache (both family and affected child) later, no results. We actually had negative effects. Zecio - someone posted almost the exact same story/questions here last week. There were lots of responses, you could search it. Best of luck whatever you decide. I don't know if DAN! is the right thing for autistic children, personally. It seems like shots in the dark: if we give the kid enough weird pills, statistically speaking, one or two will end up helping. Plus, chelation therapy can be dangerous in excess*. Vitamins are good for everyone, of course, but make sure you're not paying hundreds or even thousands of dollars for stuff you can get at the drug store. I am an advocate of the cutting-edge BAP (Be A Parent) treatment for autism. It has five basic tenants: -education that suits the child's needs (I shall shamelessly plug ABA here) -discipline -healthy diet -medication in moderation -love But if this DAN! thing starts to work in a month, you have my blessings**. * I am not disparaging chelation as a whole, but it is a newish, expensive, and risky (kids can get yeast infections in the stomach, or even stranger side effects. One British kid died during improperly administered chelation therapy) treatment. ** I hope this post was not condescending. I don't agree. I have tried DAN and wasted thousands of dollars. It imposed stress on our family. There are both positive AND negative reviews on pretty much all treatments that are shown out there but this one I give a thumbs up. I could not agree more. http://www.dailymail.co.uk/health/article-1023351/The-great- autism- rip---How-huge-industry-feeds-parents-desperate-cure-childre n.html I think treatments work for some and not for others, no matter what alternative medicines you are using to treat ANY disease or condition. There will be positive and negative. However, just reading on here, I see more positive than I do negative, which has me thinking a lot more on just trying treatments. I can't afford a DAN doc, nor will I search one out--but I am ordering some omega 3 and some other products that have been shown to work. I am giving some of the recommended supplements to my kids; particularly Taylor. I appreciate, very much all the information given, both positive and negative. God Bless, Kelly Miss Pickwickian, I was not referring to you. You introduced yourself on the board...we know who you are. I may not agree with you on everything but I certainly respect your opinions. Orthodoc, however, joins the board and with no introduction whatsoever comes straight to the biomed boards and starts bashing away....If I were a troll, I would have thrown in something about your child's autism being all your fault. That's autism-forum-trolling 101. It's just that super-expensive chelation potions and vitamin megadoses are not things to be played around with. Make your own decision, as long as it's careful. I'm sorry....exactly who are you??? A troll, maybe? You join the board just today, and your very first and only posts are all about bashing any biomedical therapies geared towards trying to cure autism??? I believe we may need a moderator please.... I wouldn't worry too much! It is just easier to know *what* is working and what isn't by giving one at a time when introducing meds..For example, also.. if she had a reaction and you started 3 new things, you would have to stop all 3 and reintroduce each one individually to know which one she was reacting too.. Hi Kelly, I just have one word of advice for you. Please only start one supplement at a time and wait 4-7 days to start another one to see if your child is having reaction positive or negative to it. It will be much eaiser to weed out what is working and not working if you do them one by one and not all at once. Good luck OH NO! I didn't know that! I gave her all 3, since none had interactions. Is she gonna be alright? I swear, I looked it all up before I gave them to her. I didn't know. I am gonna go check on her now. I feel so stupid. Thanks so much for letting me know..I will only do omega one tomorrow..but will do the sleep one--just will wait to do it as anti-anxiety during day, as well as doing the same with b6. Thanks so much again! God Bless, Kelly *runs now to Taylor's room*
I started taylor on B6, Coromega3 and the new Sleep Forte that can also be used for anxiety. I gave her 3 to sleep (let's see how that works) of the SF, and one of each of b6 and Coromega3. Will keep ya posted. Next paycheck, I am gonna get some magnesium to add to it. The doc said Taylor needs to stay away from carbs so, I am installing the Tot-Lok magnetic lock tomorrow. Until then, she is getting real oatmeal for brekkie, instead of her usual peanut butter bread. I had to lock 4 loaves of bread and bananas in the fridge--right now, all we have locked is that here. I'm not looking for a miracle. My beliefs know where miracles come from and it ain't pills :) I am looking for something that is something the body needs anyway and may be deficient from. I cant and wont spend thousands on a DAN doc cuz--I just don't have enough proof yet that all those treatments work for most patients. But I am going to follow more of their guidelines than that of the Pharm companies get rich quick schemes. She was so good about taking her pills. I gave them to her and she swalled them right down--colin chews and keeps shivering and saying UCK UCK UCK! Orth--I think maybe you could have worded your post a bit differently. Sometimes, the written word is taken with the readers emotion and strong words come on in a negative way. I like hearing all aspects of this relatively new way of treating autism, pros AND cons. So, I do appreciate your input. Thank you. God Bless, Kelly [QUOTE=MissPickwickian] If I were a troll, I would have thrown insomething about your child's autism being all your fault. That's autism- forum-trolling 101. It's just that super-expensive chelation potions and
vitamin megadoses are not things to be played around with. Make your own decision, as long as it's careful. [/QUOTE] I couldn't agree more. There are so many miracle treatments out there tho what when makign your own decision for you baby you get overwhelmed. I know it sure has been that way for us. [QUOTE=JulieA] I'm sorry....exactly who are you??? A troll, maybe?
I believe we may need a moderator please.... [/QUOTE]Excuse me? for one I don't need to give any explaination to you, and second if I were a troll I would have found a better way to "troll" whatever it is I need to "troll" around. It is all a matter of opinion. DAN is one program I have tried and have always been very skeptic about. My opinion is just as good as any other, thanks for coming. I have not posted much lately but I have to add that 3 months is not a long time. My own son went on the DAN protocol at age 4 after two years of intense ABA (25+ hours a week) and Speech. He made wonderful gains but not enough on just traditional therapies alone. What we did find is that while certain things worked well, others really showed very little effect. We know when we get a "Wow" because we only add one thing at a time. We also have ABA, and Speech at the same time My son just turned 7 last weekand he is in a mainstream 1st grade class with a shadow ABA therapist. The therapist at this point takes data and helps couple of other boys in his class. He went from nonverbal at 2.5yrs to being one of the top students academically. We are pretty close to graduating from the ABA. These are some of the things we have tried or still do. Actos Antifungal Anti viral Chelation DMG Colostrom Enzymes Glutathione (IV) GFCF HBOT (hard) LDN MB12 (injections) Namenda Probiotics Vitamin/mineral supplementaion We are adding OSR in the next couple of weeks and we are considering IVIG (it will be a big fight to have insurance pay for it) I am sure I left out something but I have a list of items that I would like to try for my little guy. It is not a one size fits all. If you feel that the DAN protocol really does not benefit, there are others to try. NIDS/Yasko to name a couple of others. [QUOTE=Kelly4Jesus] OH NO! I didn't know that! I gave her all 3, since none had interactions. Is she gonna be alright? I swear, I looked it all up before I gave them to her. I didn't know. I am gonna go check on her now. I feel so stupid. Thanks so much for letting me know..I will only do omega one tomorrow..but will do the sleep one--just will wait to do it as anti-anxiety during day, as well as doing the same with b6. Thanks so much again! God Bless, Kelly *runs now to Taylor's room*[/QUOTE] She'll be fine! It's not that these things often interact with each other; you just need to know which one is working and which isn't. You especially need to know if you give her one that makes her hyper, more stimmy, etc. so you can take it out of the lineup quickly. |
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