var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-25522671-1’]);
_gaq.push([‘_trackPageview’]);
(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();
(originally written & published on June 12, 2011)
Many have asked, so here is a list of things we’ve tried with Kyle with little or no success over the past 4 years… This is all I remember off the top of my head. If I think of any others, I will add them and repost this note… All of these were tried based on the recommendation of a DAN Doctor
—GFCF DIET for almost a year and a half.
— HBOT, (Hyperbaric Oxygen Chamber)… rented one, had it in my house for a month. Kyle and I would go in there for a few hours each night. He would fall asleep in there. I felt no different. Kyle didn’t appear to get anything out of it. Cost me over $2k
–Treated him for yeast with the diet of antifungals, Nystatin, probiotics and alot of other supplements in this category.
–Vitamin B12 injections
— Treated him as if he had Lyme diease with a round of Valtrex & other supplements…
— Secretin injections.
— Prescription Meds we’ve tried based on the recommendation of a DAN Doctor include…
Ability.
Aricept
Ritalin
Intuniv/ Tenex
–Things that are in my cabinet that I can’t remember what they are for or what they were supposed to help with…
Folic acid
Oil of oregano
Charcoal capsules
That’s all I can think of right now. The only thing that ever truly worked was good ol Melatonin for sleep and good ol’ Senokot for helping loosen stools and making him more regular. Everything else did little… or nothing… or helped a bit but came with a new side effect that we thought wasn’t worth it… or made things worse.
Right now our biggest challenge is tackling Kyle’s ADD & ADHD. He is so hyper, stimmy, cant sit still that we feel it gets in the way of him making ANY progress / learning. If we can get some of that out of the way… without making him a zombie / stripping his personality maybe we can see some real progress for the first time in several years…
That being said, this may be controversial, but right now I’d try another prescription med (that didn’t have decreased appetite as a possible side effect) over any new biomedical treatment or supplement. At least I know what to expect and my insurance covers it (minus a copay) vs spending $30+ on bottles of
NOSITOL ~4000 mg/day
5-HTP 150 mg/day
TAURINE 2000 mg/day
GABA 2000 mg/day
ZEN (L-Theanine) 400 mg/day
which were the next 5 things my DAN doctor was suggesting we try. One at a time for 2 weeks….
Anyway, that’s my note for today. I will add more things when I remember them.
Thanks,
Autism Daddy
ADDED 12/12/11
Listen guys. We went to 2 of the most well respected Dan doctors in the US. They both do speaking engagements around the country and at Dan conferences. So we went by what these 2 experts suggested.
Also as I said in my note about what weve tried. Those were listed “in no particular order” and were stretched out over a 5 year period.
We tried each thing by itself in the order that they suggested for the length they suggested.
So I’m not going to start second guessing the doctors. That’ll drive me even crazier!!!
———————————-
amzn_assoc_ad_type = “search_box”; amzn_assoc_tracking_id = “a050ef-20”; amzn_assoc_marketplace = “amazon”; amzn_assoc_region = “US”; amzn_assoc_width = “120”; amzn_assoc_height = “90”;
If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above? This way I can make a little money. This blogging thing has been awesome & life changing for me… but I must admit that it’s taking up a lot more time than I ever thought… so if I can make a few bucks it’ll make it easier for me to justify….Love you all! Thanks!!
062514
var _gaq = _gaq || []; _gaq.push([‘_setAccount’, ‘UA-25522671-1’]); _gaq.push([‘_trackPageview’]); (function() { var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true; ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’; var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s); })();
Prologue by Autism Daddy: Howdy folks! Long time no blog! I hope y'all are well! …
Howdy folks! As many of you know I work at Sesame Street, and was proud…
Intro: Jim lives in Pittsburgh where he works as a Project Manager by day…
GUEST POST Almost 10 years ago, my then 2 -year old son, Devin, was…
GUEST POST -Ellie Whetzel is a Wife, Mom, and blogger who writes about the ups,…
I've taken my son to Sesame Place many times! He's 14 years old, but he'll…
View Comments
OMG I this sounds crazy to me! I am very much into biomedical and I even think the Dr's coarse of action was off. Personall I try to stay away from anything to do with western medicine when it comes to Biomedical. I know the supplements you were given, Gaba, 5-htp, and Zen are very high doses to start in conjunction of each other. Most of what you need to know about Biomedical you cab find in a book or with Google. I personally would steer away from prescriptions with biomedical, there are to many side effects. If you ever choose to do anything biomedical or diet related I would be more then welcome to try and explain more what I found worked for us and others I know. Best of luck ~Nicole aka The Autism Puzzle (alternative medicine)
I noticed you did a round of Valtrex for Lyme Disease. Was Kyle actually diagnosed with Lyme disease? Lyme disease treatments especially in chronic form take a long time to treat, at least a year or so. Our son was dx'd with Lyme disease and so was I and his father. We did 13 months of abx (Doxycycline for adults and Keflex for our son). He is a much improved child and we are recovering every day. He also had Plagiocephaly as a baby which cut off proper blood flow to parts of his brain in which Cranial Manipulation treatment has been the most beneficial for him. He's at the point where his school has now dropped his autism diagnosis. My advice would be do proper testing for Lyme Disease with a Lyme Literate doctor. Plenty in the northeast. Many use Igenex labs which has the most accurate and reliable results of any lab. I wouldn't play guessing games with Lymes..its best to test accurately and know for sure if this is indeed the case to properly treat it. BTW, we did biomed too with very little benefits (Vitamin C and Nystatin were the real winners for us). Good luck with everything!
Have you ever researched this coarse of action treatment from this DAN? I can see why you didn't see improvement. Things that are listed her counteract each other. I am sure much of this made his gut issues worse. I have no medical degree and see this DAN is way off (just my opinion). Maybe you should Google these treatments.. you will find not only the side effects but why you will find the activated charcoal was stripping the body of EVERYTHING you put in it!
https://www.facebook.com/pages/The-Autism-Puzzle-alternative-medicine/181753411835420
~Nicole
After reading this I can see why you don't have faith in the DAN's Dr's anymore. The ones you went to just messed your son up even more. To give your son all them meds. just more less doped him up then the antibiotic which got rid of all the bad bacteria also strip all the good bacteria away to even with the probiotic was not going to do any good for him at all. So the way a waste of money right there. With the folic acid is very good for the body.Which we all need. That is your vitamin B. You will find that in alot of the foods you eat. That is also in the good fatty acids. Oregano oil is antifungal that help fights candida. Charcoal capsules helps with the upset stomach. When you go to detox the body it will go through with drawls that will help in the beginning stages not to be use all the time only in the beginning of all this. The more I have read off your blog I see how your son got worse then even to think of getting better. It was not the diet it was every thing that you were told to give him was not good at all. Almost all of it worked against each other then to think of doing any good. I can't believe that Doctor gave you guys all that stuff. I am still saying WOW!! There is so much more into to the Bio Medical field then that. I am so happy that I have invested my time into doing my own homework off all this. To trust a DAN Dr. That would prescribe them meds just blows my mind.
Listen guys. We went to 2 of the most well respected Dan doctors in the US. They both do speaking engagements around the country and at Dan conferences. So we went by what these 2 experts suggested.
Also as I said in my note about what weve tried. Those were listed "in no particular order" and were stretched out over a 5 year period.
We tried each thing by itself in the order that they suggested for the length they suggested.
So I'm not going to start second guessing the doctors. That'll drive me even crazier!!!
Hi there....wow...your son sounds so much like mine....super stimmy, hyper, always on the go, poor diet.....we were against medication....I was terrified to try any antipsychotic.....as a mental health social worker I had witnessed the side effects first hand......but, as my son reached 10 years old, and his behaviors were becoming more and more maladaptive, to the point of losing his school placement, and us being isolated at home, we decided we HAD to try it....we started him on risperdal....and I tell you, I saw a change after the first day....his behaviors decreased dramatically, and he slowed down.....he still is pretty much non verbal, and he does stim, but there was a change for the better....it's almost as if HE feels better without being fully charged ALL the time....he did gain weight, but he was super skinny, soi didn't mind......of course, everyone reacts differently, but just wanted ton give you a good story
Hi. Just a comment and sharing. I am the Mom of three sons all labelled classically autistic.They are young adults now. We have done many things with them mainly complementary and all non-invasive and drug free. My identical twins are now 23. My eldest twin Sean is artistic,studied weavery, a very clever nguy but still struggles with language and is considered non-verbal. His twin Eoin has a degree in journalism, runs a website http://www.multimediamouth.com
and is looking for a job or freelance work. My youngest Micheal has a degree in War Studies and has just started a Masters in IT. Never plan for the future let them show you where they are going! I was told they would still be in diapers at 15 and would need to be sent to a residential home! They told me otherwise when I learned how to listen. One approach which has made a difference to all our family( older sisters labelled dyslexic, dyspraxic and semantic pragmatic disorder!) is HANDLE(Holisitc Approach to NeuroDevelopment and Learning Efficiency). Please look at the website http://www.handle.org. It confirm a lot I knew but taught me so much more. In fact I am now a HANDLE Practitioner and Instructor. Best Wishes to you all.ps please feel free to contact me with any questions. rosemarie.mason@ntlwworld.com
My son is an older version of Kyle. He is now 17 and little to no progress in all areas. Age 15 brought another challenge; Seizure Disorder. Getting meds to keep grand mal seizures under control has been difficult, but, we have him on 2 now that are working. At age 7 we started him on Risperidal as he was self-injurious and we knew if we didn't do something soon he would be in the hospital. He recently has begun to put on some weight, but that can be age related as well as a poor diet....not just the meds. The Risperidal is also for aggressive behaviors. We have tried to take him off the med, but, behaviors due come back quickly. He has Kyles stims as well as one that drives me crazy: feces smearing on himself and things in the room. This comes and goes...thankfully. I love your posts and your honesty and how much it helps those of us with the severe kids and their problems.
HI. My son is super stimmy, also, and it is tied into his poop stuff. I don't have any real answers for that, so far, except lots of Chamomile. That calms his guy. I won't bore you with the ten page list of stuff we have tried, but we are positive his stimmy stuff has to do with SIBO/IBS, and his SIBs are tied into reflux, constipation and the lack of sleep that results from these things
HI. My son is super stimmy, also, and it is tied into his poop stuff. I don't have any real answers for that, so far, except lots of Chamomile. That calms his gut. I won't bore you with the ten page list of stuff we have tried, but we are positive his stimmy stuff has to do with SIBO/IBS, and his SIBs are tied into reflux, constipation and the lack of sleep that results from these things
If you are trying anything else in the future, check out Judy Chinitz, New Star Nutrition http://www.newstarnutrition.com Her own son is severely autistic and mid teens. She is amazing. If nothing else read her book "We Band of Mothers: Autism, My Son and the Specific Carbohydrate Diet"
Want to know if you all have tested for heavy metals? We are doing treatment for removal now. My child had extreme amounts of aluminum in his body. Antimony and Arsenic are now showing up.