Holly - My son was diagnosed with PDD by a developmental pediatrician and her team of 5. That was when he was 2. My son's been in speech and ABA therapy ever since, but I am just now starting down the DAN / biomed path. Figured I should leave no stone unturned since I have access to a DAN at the moment. The allergy clinic was quick to tell me that they don't do the scratch test, but rather the "prick" test. Did your son's scratch test not go well? Do you know what you are looking for with the intradermal testing?
Boo Bear - are you mocking the doctor?
RA
My son's prick test showed he was allergic to the normal--dust, mold, feathers, dog, cat. They wouldn't do the hay fever testing for grasses, trees, weeds at that time.
I want the intradermal because I want him to get the treatment--drops. They will test for EVERYTHING. I would rather start treatment now instead of waiting until my age--40y. I'm allergic to everything they tested for---except Oak and the "bad" black mold. I get shots and they hurt--bad!! 3 shots--every week. So far--it's not working--but it's only been my first "season". I never had allergies when young---started in college.
I believe that since our kids have limited langauge skills and some don't express themselves completely---maybe they are really suffering from allergies and can't tell us. My son never complains--but continually rubs his nose.
Funny you mention railroads...I googled and found toluene poisoning! Haven't spent much time in factories, BUT my house was completely recarpeted when my kids were 4 months old (I have not told the doctor this). Supposedly the chemicals sprayed on new carpets are similar.I MUST JUMP into this topic !!!
TOXIC ENCEPHALOPATHY
TOXIC = any toxins that are may have adverse effects on the body as a whole ENCEPHALO = pertaining to the brain ??? that's why you can have life-threatening illnesses like JE, Japanese Encephalitis... virus as causative agent. PATHY = as in pathology... science of bodily diseases... that brings suffering/grief (pathos)
So your kid must have a VERY SERIOUS CONDITION..... !!??!!
[QUOTE=Cin0516]PS-One of the best descriptions of DAN! tests I heard was from a Great Plains rep- who said it is really a lot like "reading tea leaves".
[/QUOTE]
A CURRENT or former employee?
Kinda reflects my gut feeling on it, but if it helps, it HELPS!
A current employee- they make no bones about it.
Someone else recently reminded me...that is why it is called "PRACTICING medicine".....trial and error, best efforts and all that.
So who dx'd your son with PDD?
I bought the book---"Brain Allergies" and it was really too intense for me to read the whole thing. So maybe your DAN is thinking more on a brain allergy type thing. Alot of ASD kids have allergies and some Drs swear by these allergies effecting the brain and causing ASD behaviors.
Whtever you do---don't do the skin testing. Request 110% for the intradermal testing. The basic "scratch testing" is not very accurate.
My son got it done at 4y. Next week---at 7.5yo---he is getting the full intradermal allergy testing. It takes about 2 hours---for the first day and then about 7-10 later---another 1.5 hours. My reasoning is to start desensitizing drops.
I get the shots. My kids will get the drops.
My son's DAN dr diagnosed him (tentatively?) with toxic encephalopathy and allergies. We are waiting on a round of lab tests and will be doing the allergy prick test next month. Just curious if anyone else got the toxic encephalopathy diagnosis and how their doctors explained it to them. This doctor was pretty tight lipped. I assume he is waiting for the lab tests to show metal toxicity? Anyone else have this on their kid's list of labels?
I tend to be skeptical - but if your child has PDD-NOS, it isn't straight across the board brain damage. They have deficits in the three core areas.We had DAN! tests run and nothing jumped out as an indicator to go in any specific direction for treatment. If you run the tests through Great Plains- you get your own copies of the results and you can get a phone consult about what they mean (in addition to your Dr) Sounds like you may want a second opinion.
PS-One of the best descriptions of DAN! tests I heard was from a Great Plains rep- who said it is really a lot like "reading tea leaves".
I don't find it strange about the brain allergies, or brain inflammation. It is common in many ASD children who are being treated biomedically. I am not sure about the testing, but there are a couple different tests that can help determine if the child has some form of inflammation in the brain. The french lab that does the porphyrin tests also does the pterins tests. This is an indicator of brain inflammation. Of course, this may not just be caused by allergies. It could be caused by heavy metals or immune related issues. The best thing to do is to not speculate, but wait until the results return. Then you can do your research. That was why he said to wait.
As for the codes, I am going to send you a PM about it.
In the meantime, here is some info that might be of interest, even though it is not directly related to the possible diagnosis provided by the DAN doc.
Here are some yahoo groups where you can search for terms and ask questions of other parents who have been doing biomed:
http://health.groups.yahoo.com/group/chelatingkids2/
http://health.groups.yahoo.com/group/autisminfo/
http://www.autismweb.com/forum/viewforum.php?f=4
http://health.groups.yahoo.com/group/abmd/
http://health.groups.yahoo.com/group/Autism-Mercury/
Here are some website re: biomedical interventions (generally):
http://www.autism.com/ (Autism Research Institute - Read the 2005 Consensus Paper – Gives an overview of DAN Methodology)http://www.autism.com/treatable/adams_biomed_summary.pdf http://www.autism.com/ari http://www.tacanow.com/medical.htm http://www.generationrescue.org/
http://www.treatingautism.com/
http://www.danasview.net/parent3.htm
http://www.unlockingautism.org/news.asp?action=5
http://www.icdrc.org/pdf/SimplifiedEvaluationDAN.pdf
www.nationalautismassociation.org
Here are some books re: biomedical interventions:
Books:
Children with Starving Brains (2007) by Jaquelyn McCandless
Biological Treatments for Autism and PDD (Revised 2002 Ed) by William Shaw
Biomedical Assessment Options for Children with Autism and Related Problems (2005) by SM Baker, MD and Jon Pangborn, PhD
Biomedical Assessment Options for Children with Autism and Related Problems SUPPLEMENT (2007) by SM Baker, MD and Jon Pangborn, PhD
Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock (April 2007)
Changing the Course of Autism: A Scientific Approach for Parents and Physicians by Bryan Jepson (2007)
Facing Autism: Giving Parents Reasons for Hope and Guidance for Help (Paperback)
by Lynn Hamilton (2001)
Autism Recovery, A Biomedical Journey (DVD) [if you purchase it from ARI, part of the proceeds will be a donation to the organization]
On a side note, both of my ASD kids are being treated by a DAN doctor and we have seen amazing improvements in their development and health since starting the DAN methodology. You just have to make sure you have a reputable DAN doc w/ alot of experience and regularly attends the DAN conferences to get updated on all the new developments in biomed research and treatments.Good luck,
Jenni
[QUOTE=mom of twins]
Holly - My son was diagnosed with PDD by a developmental pediatrician and her team of 5. That was when he was 2. My son's been in speech and ABA therapy ever since, but I am just now starting down the DAN / biomed path. Figured I should leave no stone unturned since I have access to a DAN at the moment. The allergy clinic was quick to tell me that they don't do the scratch test, but rather the "prick" test. Did your son's scratch test not go well? Do you know what you are looking for with the intradermal testing?
Boo Bear - are you mocking the doctor?
[/QUOTE]
Ahhh !! I see that brain inflammation IS associated with autism as advocated by the DAN doctors. And I can see also A LOT OF YOU also use bio-med approaches to counter such inflammation.
SORRY !!! I must admit that I was mocking the arrival of the diagnosis Toxic Encephalopathy. Back in 1988 - 1991 when I was a medical student, such diagnosis would be reserved for very severe brain conditions.
SORRY AGAIN... if I have offended any one of you... again...