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natsmum
Butterfly
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Joined: Aug 05, 2008
Age: 31
Posts: 11
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 Posted: Tue Aug 05, 2008 1:01 pm Post subject: What inclusive medical testing should be done? |
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Hello everyone, I'm new here. I'll get around to making the traditional hello I'm here thread in a few. 
I have a roundabout AS diagnosis for my 9 year old son from our psychiatrist, but I would like more done. I am having problems finding places that will do what I'd like, so I'm having to get all my information first before I go back to my insurance company for the referral. Please let me know if I'm missing anything.
Food Allergy testing
Inhalant allergy testing
Yeast testing
heavy metals, including mercury testing
chromosone testing
brain SPECT
I have to have a firm diagnosis before our insurance will allow for more therapy, cognitive wise and psychology wise. My son already sees a psychologist and a psychiatrist.
We have an appt for an EEG already scheduled, but that's only because I had no idea who I needed to talk to for anything. Thanks for your help, I am new to all of this and it's overwhelming sometimes to find someone who understand and can point me in the right directions. |
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donkey
we have met the enemy, he is us.
Joined: May 22, 2006
Age: 38
Posts: 1483
Location: ireland
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| Posted: Tue Aug 05, 2008 2:13 pm Post subject: |
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woah woah and woah........there are no definitive diagnostic tests forAS. yes there is DSM-IV criteria but it is all subjective.
there is also a burgeoning scary cottage industry booming around intervention aids and getting a diagnosis for AS.
they will charge you for all tests that are not necessary.
you need one psychologist and diagnostic testing. based on what the psychologist suggests. psychiatrists do not normally diagnose AS.
you are being ripped off by scam atrists who are profiteering by the new "disease" of AS.
be carefull. |
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Emen
Tufted Titmouse
Joined: Jul 19, 2008
Posts: 39
Location: New Zealand
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| Posted: Tue Aug 05, 2008 5:41 pm Post subject: |
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Hi Natsmum and welcome,
I absolutely agree with donkey - what an astounding list of MEDICAL tests.
I'm no expert but I would have thought your money would be better spent on finding a psychologist who specialises in ASD and having your son thoroughly evaluated by that person.
Really - do be careful. |
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leechbabe
Sea Gull
Joined: Jul 26, 2008
Age: 34
Posts: 209
Location: Melbourne, Australia
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| Posted: Tue Aug 05, 2008 8:57 pm Post subject: |
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We are on the wait list to get a formal diagnosis for our daughter and here in Victoria, Australia the standard test is by a team
Psychologist
Speech Therapist
Paediatrician
Occupational Therapist (optional)
We've already had the ADOS test but it was done through a university study so we have to go do it all again. Bureaucracy and red tape 
As others have said, watch out for the scam artists wanting to profit over your concern for your child. |
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natsmum
Butterfly
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Joined: Aug 05, 2008
Age: 31
Posts: 11
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| Posted: Tue Aug 05, 2008 9:49 pm Post subject: |
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Thank you for your help. While I understand there is no definite diagnostic testing, some of the testing on the list I wanted done for my own peace of mind. Like the food allergy testing and the heavy metals, if he is sensitive to something we have in our diet and if there is something that I can cut out then I'd like to know. I do not believe that it will have a huge impact overall, but I do believe that every little thing can possibly count.
I ask because I'm in a sticky situation with insurance. My son has had meltdowns before, but they weren't as serious as they have become. He was just recently released from a psychiatric ward where he stayed for a week because he tried to commit suicide. While I do think he has AS, (the initial ADHD diagnosis just didn't fit as he got older) as does his psychologist and psychiatrist, I have no formal testing period. The waiting list is 12 months at Children's Mercy Hospital in Kansas City, and we are on that wait list.
The list is what I have compiled based off of all the reading I have done on the subject. Once I have some sort of diagnosis then my insurance will pay for the occupational therapy and the extra needed psychologist therapy appts, and we need all the help we can get right now. Until I can get us into the Children's Hospital, I'm trying to figure out what all medical tests I can try to order through his pediatrician.
That's not saying that my insurance will cover it all, but it's worth a try. |
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Emen
Tufted Titmouse
Joined: Jul 19, 2008
Posts: 39
Location: New Zealand
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| Posted: Tue Aug 05, 2008 11:30 pm Post subject: |
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You must be desperately worried about your child and I can understand you trying anything that might help. I do hope you manage to get a diagnosis that allows you to access the help you need, and quickly.
I'm new to WP too and I'm blown away by all the insightful, practical advice and support that so many posters offer. Who better to discuss AS than the articulate and intelligent contributors to WP who actually have it, or deal with it as parents?
I wonder, do you think it might be helpful to be more specific about your son's behaviours, perhaps in a different post? There are probably people out there who've been through similar situations and who can offer you valuable advice and understanding. |
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Callista
Phoenix
Joined: Feb 04, 2006
Age: 26
Posts: 3847
Location: Central USA
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| Posted: Tue Aug 05, 2008 11:36 pm Post subject: |
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Suicide doesn't really correlate with Asperger's--not unless you have bipolar or depression, too. (Getting bullied or abused is a risk factor for suicide, and Asperger's is a risk factor for bullying, so there's an indirect connection.) But I'm glad you got him home after a week; the hospital's the worst place to recover from something like that. In kids, depression often looks like 'bad behavior'... in autistic people (or anyway, autistic me), losing interest in your obsessions is a big red flag. So when I was a kid and had my first depression, I was nine years old... basically acted like nothing mattered, stopped being interested in anything, got skipped back to first grade math, irritable, anything could just put me over the edge of a meltdown. My mom thought she was going to go nuts. Thankfully it's episodic, and even without treatment it goes away on its own, eventually, which it did in this case.
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Reports from a Resident Alien:
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2ukenkerl
Phoenix
Joined: Jul 20, 2007
Posts: 6391
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| Posted: Wed Aug 06, 2008 12:06 am Post subject: |
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natsmum,
First of all, WOW! There is a person called natesmom! Talk about SIMILAR!
Here is MY opinion:
Food Allergy testing
Isn't he old enough that you have determined that? Frankly, doctors said I have TWO alergies I DON'T!
Inhalant allergy testing
See above.
Yeast testing
Boys seem especially unlikely to have such problems.
heavy metals, including mercury testing
It makes more sense to test the home, prevent exposure, etc... FORGET chelation therapy! It will NOT turn back the clock, the chemicals may also create MORE problems!
chromosome testing
brain SPECT
How would either of those two help?
Ironically, a cat scan or FMRI is probably likely to tell you more than the last 2 put together concerning his brain and possible neurological differences! And it may actually cost less than the brainspect! |
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natsmum
Butterfly
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Joined: Aug 05, 2008
Age: 31
Posts: 11
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| Posted: Wed Aug 06, 2008 12:25 am Post subject: |
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Yes, he is being treated for depression.
To describe him:
He has a hard time fitting in with his peers, which makes him feel left out and hurts his feelings even more. He doesn't understand why no one wants to talk about Pokemon with him 24/7 and thinks that's what everyone should do all the time because it's what he likes to do. He knows every single Pokemon and their abilities. In fact, he's going to be a Pokemon trainer when he gets older. Now, I'm a gamer myself, but I can't comprehend this stuff the way he does.
We move more then he would like, but we have no control over that. The military puts us where they put us. So not only does he have a hard time keeping friends, then he has to try all over again to make new ones and feels more rejected at each new school. His father is deployed a lot, and I know that doesn't help the situation.
Meltdowns happen when things don't go the way they have been planned in his mind. He knows that mom makes breakfast for him every morning before he goes to school. He knows that breakfast stops being served at 8 am if you eat at school. Yet one random morning he decides he's going to have pancakes for breakfast at the school cafeteria. This same said morning we didn't even get up until 8. He insisted upon looking for change to have pancakes at school for breakfast. He couldn't grasp the reality of the situation in his mind that pancakes were not going to happen that morning at school because we just woke up when they stopped serving breakfast. Thus a meltdown. Said situation happens, just different days in different ways.
I could go on in explaining him but I'm sure everyone here has heard of or knows of "my" son, I don't need a test to tell me he has AS because I know he does have it. I just need something to show the insurance company so we can get him more help that he needs and to know that I'm not alone with everything we have to go through on a daily basis. Thus why I found this awesome, informative board.  |
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DW_a_mom
Phoenix
Joined: Feb 23, 2008
Posts: 3190
Location: Northern California
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| Posted: Wed Aug 06, 2008 2:04 pm Post subject: |
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This is my question about heavy metals testing: has anyone, ANYONE, ever been tested for heavy metals poisoning and been reported NEGATIVE?
I have asked that question SO many times in forums where parents follow the DAN protocol and NO ONE has EVER been able to tell me of a case where the test came back negative. They prefer to ignore the question, because they can't answer it.
If the test had real merit, there would be negatives. Many.
Basically, it seems to me, if you test for metals, you are going to find metals poisoning, because it is the foregone conclusion of what really is a test of very dubious accuracy.
As for the rest ...
Where I live, a formal AS diagnosis would come from a Nueropsychologist. The nueropsychologist would decide which tests to perform. We do not have a medical diagnosis, only a school use one, because we have not sought any therapies not provided by the school.
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Avatar copyright DW's Studio |
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leechbabe
Sea Gull
Joined: Jul 26, 2008
Age: 34
Posts: 209
Location: Melbourne, Australia
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| Posted: Wed Aug 06, 2008 5:38 pm Post subject: |
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Allergy Testing:
You can start by initiating an elimination diet at home and do the basic tests yourself without having to pay expensive doctors fees.
We've used the Fed Up With Food Additives elimination diet - http://www.fedupwithfoodadditives.info/
I discussed it with my Dad (who is a doctor) and our Paediatrician in great detail before starting the diet to make sure we wouldn't be depriving her of any essential growth nutrients. The elimination diet is how we found out Heidi was milk intolerant and allergic to nuts and fish. Our paediatrician then agreed to allergy testing and that confirmed what we'd found through the elimination diet. To help the paediatrician I kept a diary of Heidi's daily food intake and her reactions to the food. Extensive documentation always helps
Edited to add - the basic test involves removing all the triggers from a childs diet (diary, gluten etc) then when they are at a stable place you introduce ONE trigger eg very small amount of milk each day and see what happens. |
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Apatura
Phoenix
Joined: Jul 25, 2006
Age: 36
Posts: 1398
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| Posted: Wed Aug 06, 2008 6:26 pm Post subject: |
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| The only therapies I wish I had tried harder to get for my son were OT (for sensory issues) and speech. But be careful, some therapists are more trouble than they're worth, while some are wonderful people. It all depends on the therapist and what kind of person they are. |
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mysterious_misfit
Phoenix
Joined: Apr 25, 2008
Age: 28
Posts: 522
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| Posted: Fri Aug 08, 2008 3:07 pm Post subject: |
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The only way to get an AS diagnosis is from a clinical psychologist. You don't need any of those other tests. They are experimental and are not proven to diagnose AS, and thus will have no meaning to your insurance company. AS is genetic and neurological, and is diagnosed based on behaviors. There is no genetic test for AS, because the genes have not been identified yet.
There are TONS of scammers preying on freaked out parents who want to 'do everything possible to cure their autistic children'. But AS has no cure, and my honest opinion is that it isn't even a disease at all. It's just a different way the brain works. (IMO a better way, LOL)  There is absolutely nothing that an Aspie can't learn how to do, as long as he is sufficiently motivated, is taught a certain way, and perhaps might have to perform it a slightly different way than typical. |
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donkey
we have met the enemy, he is us.
Joined: May 22, 2006
Age: 38
Posts: 1483
Location: ireland
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| Posted: Fri Aug 08, 2008 3:10 pm Post subject: |
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| mysterious_misfit wrote: | The only way to get an AS diagnosis is from a clinical psychologist. You don't need any of those other tests. They are experimental and are not proven to diagnose AS, and thus will have no meaning to your insurance company. AS is genetic and neurological, and is diagnosed based on behaviors. There is no genetic test for AS, because the genes have not been identified yet.
There are TONS of scammers preying on freaked out parents who want to 'do everything possible to cure their autistic children'. But AS has no cure, and my honest opinion is that it isn't even a disease at all. It's just a different way the brain works. (IMO a better way, LOL) There is absolutely nothing that an Aspie can't learn how to do, as long as he is sufficiently motivated, is taught a certain way, and perhaps might have to perform it a slightly different way than typical. |
yes i agree it isnt a disease, it is a different way of being, like midgets, albinos, very tall people, gay people.
its very insightfull what you have said. |
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natesmom
Phoenix
Joined: May 16, 2008
Posts: 611
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| Posted: Fri Aug 08, 2008 7:19 pm Post subject: |
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Similar name but she is a better writer lol
Will respond more later. |
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