Opinions on Autistic treatment...

bssage

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Oct 20, 2008
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Looking for opinions more than advice on this. And I promise just to listen. If I don't agree I wont go into "attack mode" I promise.

Chloe's new Doctor is a D.A.N trained MD. She is not part of their program but has the training. She was a "primary care Physician who gave that up to pursue "internal medicine". Bottom line She is a MD but has a Homeopathic practice.

I am going to use Common terms because thats how I think and its easier for me to explain like that.

The program appears to based on the belief that DD is not properly processing the nutrients. The foods that are supposed to turn into brain & body nutrients are lacking some steps in the process. Effectively stalling out the entire process of cognitive thought. Its really fairly common belief in the Autistic community. The thing you have to keep in mind about Autistic parents and the people who work with Autism. Is we are confident that the information/knowledge is inside the Autistic person. The problem is constructing ways to let them out and to express them in ways others understand. You almost have to spend a little time with a Autistic person to get a complete picture.

The first step which we have completed is building a base. Trying to purge chemicals in her body that have the potential to disrupt the process. And trying to strengthen the bridges (for lack of a better word) that do exist.

Step two seems to be increase the nutrients she lacks (vitamins/minerals) to the point that she is receiving the proper levels of these things. Example: if she is processing vitamin C we give 100%of whats needed and she only processes 50% We give 200% trying to achieve 100% of whats needed. If that make sense. Its just stupid simple to try help you understand what I'm talking about.

Seems like good basic logic to be. I don't think anything harmful can come from this course of action.

My DW and I dont disagree that she has made some major progress during the time since we started the program. DW however attributes all or most of the recent success to the program. I am not sure how much is directly related to the program and how much would have occurred naturally as part of the ongoing education on the part of her teachers and aids who are getting continuing education concerning Autism. And the behavior work done both at school and home. And the simple fact that she is maturing as time goes on.

Yes of course I have asked the Doctor if she had studies or similar to back up her program. She says since it new. And a tailoring of successful programs to date, there are no studies. She also has mentioned the ethics that would be involved in withholding treatment in order to conduct a study. We do have questionnaires that we (teachers/aids/family) at specific intervals of the program.

The Doctor charges $250 per hour. She sells the nutrients and all of the things that go along with the program. We have roughly 8 to 900$ of expenses each visit. Non-covered expenses. Its about a 4 hr drive to see her. We could buy the items at a homeopathic store but of course there is not one in rural Iowa.

I am not sure where step 3 takes us but we are currently beginning step 2.

I tried to keep this short and simple hoping I didn't oversimplify. I am just wondering what you all think

I should also mention the Doctor has a Autistic son and (from looking in her office) has some published books on the subject.
 

Jeremy+3

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Apr 18, 2009
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Where I work we closely monitor autistic children's nutritional needs, in the UK it is common practice to carry out educational and dietary therapy, we find that the dietary side doesn't make that much difference, but we can't complain that our charges are eating properly. We do find if we say something works the parents notice more changes, sometimes when they aren't too sure of the success of a treatment they don't notice the little changes, they focus on what isn't improving. We only do the nutritional side because it provides us with more funding and free food!

Where education is concerned (and I don't just mean academic schooling) obviously it is different for every child, depending on their personality, age and severity of autism.

(13-3 to England, oh yes! screw you wales)

I guess when a lot of people think of treatment they think a lot of talking, forcing certain exercises etc, we try to make everyone work together. Obviously sometimes it ends with upset and shouting, but it does slowly show them how to diffuse a situation and that sometimes doing something differently is okay.

A lot of the time we let a group do what they want for an hour or so, there is one condition, they do everything together, we try to do this when parents are around, because they are more vulnerable it is harder to see them upset and struggling, but when you allow them to work things out together, most improve a lot socially. We allow autistic traits to carry on as well, if you want to line everything up so it is straight with the edge of the table then go ahead, after all it isn't hurting anyone.

The big improvement is around 7-8 for us, but that is for children who are with us from the start, age four, the ones who start older take a lot longer to progress as learning when you are older is more difficult.

Everyone has responsibility as well, whether that is making sure the rats have water, picking up litter, or handing cutlery out at dinner time. As they improve and become older they are given more responsibility if we think they can cope with it, our 15/16 year olds often take care of the younger children, with things such as using scissors for making things, helping them write their name etc. Little things that help them to understand other people's feelings.

While there isn't treatment (as treatment means cure), you can improve somethings, a lot of which is altering your own view more than the child's, which is a stumbling block for a lot of parents as they see it as enabling and giving in.

I've probably repeated myself about four times :)
 

bssage

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Oct 20, 2008
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You hit on some points I plan to look into. The system in the states at least where I live is very diffenent. DD special need teacher and class changed from pre and K to a first grade class. The same will occur as she ages. I think it both good and bad. While its nice to have someone who is close to the situation that we have built a working relationship with. I believe it is also productive to have a fresh set of eyes and idea's from time to time.

To say <I>nutrition</I> is oversimplifying what we are doing. Its more about how that nutrition is processed. Broken down into amino's, fats. and such. I used the Vitamin C as an example. But what we are doing is much more involved than that.

My OP more than anything, is questioning our(my) choice and validations of the treatment. I like charts, numbers, something quantifiable. DW is more feeling oriented. I know it's a tough post to comment on.

It could have been a poll. No, uncomfortable with methods. Yes go with your gut. ect.
 

mom2many

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Jul 3, 2008
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How long has she been on this nutrition program?

The problem with autism is that there is no real way to study the "disease" it is not the same in any two people and varies greatly from one child to another. Nutriction has lomg been supected of playing a role in autism, so families find that thier is a huge impact on thier child because of thier choice to follow a certian nutrtion program. Hell others find that medical marijuana helps.

So where does that leave you? Going with your gut...following your insticnts....I know that isn't what you want to here, but that really is all the info out there at the moment.
 

bssage

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Oct 20, 2008
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mom2many said:
How long has she been on this nutrition program?


So where does that leave you? Going with your gut...following your insticnts....I know that isn't what you want to here, but that really is all the info out there at the moment.
4 months.

That is what I want to hear. My gut is saying "go, go". My brain is saying "your getting ripped off"

I'm conflicted.
 

IADad

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Feb 23, 2009
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bssage said:
We could buy the items at a homeopathic store but of course there is not one in rural Iowa.
Have you checked out Thymely Solutions in Fairfeild? That's not so awful far away from you....

Wish I had an opinion to help you. Seems like you are first doing no harm, and second it seems to make some logical sense, but how far it can take her? Who knows, I guess if I were in your shoes and thought this could make a 50% or heck even a 20% improvement, I'd probably do anything I could too.

It seems like your gut and your head are collectively keeping you in a good place, keep questioning, keep hoping and keep trying.
 

fallon

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Jul 19, 2007
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I don't have any medical info to back up what I'm going to say here so please bear with me...this is my personal opinion, not science.

I've worked with a number of autistic children over the years. I have great love for these kids and a great appreciation for the struggles of their parents to just do the "right" thing for them. I will tell you from what I have seen personally the kids who are special diets like you talked about seem to really come out of their shells. I've seen kids who were barely speaking, and wouldn't look you in the eye ever become different kids simply by controlling what is going into their bodies. I personally am huge believer in this....BUT in the end you know her best. Follow your heart and trust the instincts inside your wife as well. Together you guys are going to do only the best for that little girl...it's clear as can be that you love her with all your heart
 

bssage

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Oct 20, 2008
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Update.

As you all know I am very skeptical about this program.

I cant think of the correct word maybe someone can help me out. (I want to say "Impherical" I means something like evidence with out data support)

The circumstantial evidence at this point is beginning to mount to a point where I am going to have to change my tune.

She only arm flaps and might tap her chin with her hands rarely. She was hitting herself in the head with her fists. Banging her head on the wall, and windows (yes very scary) frequently. Her self stemming behavior has been reduced by at least 80 to 90 percent. And its severity has been reduced by as much also.

She is speaking in sentences (poorly constructed) at least 3 times a week and of those days a couple of times a day. This is a improvement from Not at all. or possibly once every couple of months.

She is using the toilet all the time (part of this is due to removing her carpet) And is making bowel movements daily without prompting.

While she is still a picky eater to say the least. But she is not craving odd things in extremes. She was licking the inside of the popcorn bag, Licking butter off vegetables ect.

She is not without issues and sometimes extreme. But in regard to the two biggest symptoms of autism (Self stemming &amp; communication) she has made major improvements. To the extent that her teacher called a couple of nights ago. (Oh crap what happened) to tell us that Chloe had the teacher and aids in tears by talking in full sentences for most of the day (they just let her keep talking until she wore herself out.)

I have absolutely no way of proving any of this is a direct result of the program she is on. And I like numbers, real proof i can read. But I really can no longer argue this is not making major differences in her life.

I want you to know I have nothing to gain from posting this. I am only sharing what is happening as it happening. I really cant prove what I am saying because she still only speaks or does things on her own accord. You cant say "take this test." Or tell her to "show them". Because she may or may not do it depending what she wants to do. The only proof I can offer is talking to people who are close all have noticed significant/major improvement.

I wish I could remember that word its driving me crazy.
 

ElliottCarasDad

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Sep 10, 2008
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I believe you are thinking of empirical.

Sounds to me like something is working for her so that is good. I work in a science field, so I'm like you, I generally need data and facts to back things up. Sometimes you can throw 10 things at a problem and fix it but then you don't know if it was only one of the 10, or a certain combination of the 10 that actually did it. Sometimes though in the real-world you just have to be happy with the end result. :)
 

mom2many

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Jul 3, 2008
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I am really happy for you bssage, sometimes we just have to rely on what we see, and let the scientific proof sit on the shelf.

It sounds like she is making amazing progress, I know how good that feels, and the why right now isn't important just the fact that she is making progress is a huge deal.
I want you to know I have nothing to gain from posting this.
We know this, other then the occasional you-tube video we know you are not trying to push anything.
 

imstig

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Apr 23, 2010
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I feel for you too. It is really hard to make such decision specially when some one dear to you is at stake. Sometimes, we just need a few time to think about it and give it a thought. If she is making huge progress I am happy for you then.