Shock and Awe from 2006

Hi!

I wrote the below email in 2006 when I first started to work on my co morbid conditions project in Phoenix.  I am posting it so that you can all see how far we have come.  I had forgot how bad it was just 3 years ago.

*First, let me start with apologizing in the beginning for the length of this email. But I feel that there is a lot to learn today and want to share as much information as possible so that all of you can benefit from what we are doing with Phoenix Children's Hospital.   The first child to see all the doctor's from Phoenix Children's hospital has completed all of his tests. I think this has been an incredible learning experience for all involved in the project. In the beginning most did not know what they had to offer him or if they could help. This child is incredible ill and now everyone believes his mother and is saddened by the facts. This child has been diagnosed with SCAD a very rare metabolic disorder that is often misdiagnosed. There is actually a study in Britain that demonstrated that a subset of children diagnosed with autism never had it but had SCAD. This child has experienced developmental delays and possible permanent brain damage because of not having SCAD diagnosed in a timely manner. This child was also diagnosed this week with Primary Immune Dysfunction and will be receiving IVIG. The immunologist believes there is a good chance that the IVIG will help put his colitis in remission and could eliminate his seizures. These would be side benefits and we hope that it will do this but of course there is no guarantee. We also pray that the IVIG will help him developmentally but there really is no guarantee that it will work. I hope that all of you will keep this family and this child in your prayers.  

Now to the larger issues....  

1. We hope this fall to put out a newsletter to PCH that will then be forwarded to all pediatricians. We have several studies that we believe will educate the physicians so they can do a better job of helping our kids. I personally know that very good pediatricians do not believe that our kids have seizures, gastrointestinal disorders or metabolic disorders-They just have autism. We want to educate them to look beyond the autism and see the co-factors that could and are making some of our kids ill.   How you can help? If you suspect that your child has seizures or gastrointestinal issues you need to present a compelling case. This means having studies that demonstrate that these kids can and do have these problems and a list of reasons why you think your child may have it. You need to be respectful. You need to explain that you are not looking for them to cure the autism but want to make sure your child's medical care is being managed appropriately.   What not to do? Do not be emotional and do not go into long stories about your child. You need to be concise and you need to give bullet point reasons why you need their help. They do not need the whole store they just need enough facts to make a decision in your favor to run the tests. 

*My letter about co morbid conditions of autism was sent by the Arizona American Academy of Pediatrics to every pediatrician in the state.

2. Designer Labs-Okay this poor child had thousands of dollars of labs run but a DAN doctor. These were useless for this child for a variety of reasons including the doctor's inability to read them correctly, to order additional tests and to order basic tests paid by for regular insurance. These DAN lab tests may be useful for the nuance of supplements and autism biomedical treatment but they do not do a great job of screening for real medical disorders and issues not to mention they are expensive.   What do I recommend? Make sure you have really reviewed your child's medical care and ran every medical test that needs to be run through a FDA approved lab. If you suspect immune issues, see an immunologist for an immune panel. Take the supportive literature to your doctor and ask for a thyroid panel including TSH. Now I know personally that my pediatrician who is not the easiest to work with would even do this test. If you have lethargy or hypotonia ask for an organic acid test or better yet see a geneticist to rule out metabolic orders. You do not even have to pay for an organic acid test from a designer lab. Make the rounds. See  every specialist you can to rule out your child's issues.   What you need to do? Please Please be educated about what you are asking for and why. Please come to the appointment with all of your information and research about what you want and why. Try to bring an extra pair of hands to help with the child to you can really listen to what the doctor is saying and can actively participate in the discussion.   What not to do? Please do not bring designer labs to these doctors. They do not know how to read them or what they are used for and we look like weirdo's. PLEASE DO NOT BRING DESIGNER LABS IN AND ASK YOUR DOCTOR TO ORDER THEM. If you really want the Premier Autism Panel run, run it through your DAN doctor. If you go to the pediatrician or a specialist and demand that they treat the autism you will alienate them. YOU ARE THERE TO HAVE THEM INVESTIGATE AND TREAT THE CO-FACTORS OF AUTISM NOT AUTISM ITSELF. It is your obligation to be educated and know why and what you want. There is a place for DAN and a place for traditional medical care.   WHAT REALLY NOT TO DO? When Susan and I first looked for other chiropractic neurologists to recommend we really ran into trouble. Our original point was to make sure that you all had choice and were not forced to see Dr. George. Not because Dr. George was bad or not a good doctor. He certainly is a good doctor but because we believe that choice does a variety of things. Choice controls price, allows you to work with someone who makes you feel comfortable, allows you to pick someone who might take yourinsurance, etc. If you have a thyroid problem you have a choice of hundreds of endocrinologists not just one. We want to create this for our community. Anyway, within a week I received a phone call from Dr. Barry who was very upset. Many of you called him and trashed Dr. George and were very unprofessional as parents. This made it very difficult and put me and Susan in a very bad position. Dr. Barry ended up having a conversation with Dr. George and making the decision not to see our kids. We alienated a good doctor. This ruined a lot of work we had done. We do not want this to happen with PCH. You all have to be educated and knowledgeable and careful when you work with these doctors because your behavior impacts everyone else. Please do not misuse this project because all of you have to potential to alienate these doctors by your behavior.  

*Parents are now routinely able to get an organic acid test and other metabolic tests from their pediatrician or neurologist and immune panels from a immunologist. 

3. DAN Doctors. I am very pro DAN and pro alternative health. You all know this about me. However, the point of this project and this email to to educate you all. You need to manage your child's care. You need to do the research. You need to NOT BE LOYAL TO ANY DOCTOR DAN OR OTHERWISE. You need to make sure that you are ruling out all other issues. You can choose to do this with a DAN doctor but I recommend using a variety of doctors and take advantage of specialists. Knowledge is important and DAN doctors and not experts in anything other than DAN. Also, DAN doctors only need to attend one conference to be a DAN doctor. I am not saying that they can notbe helpful but there is a place for every doctor on your child's team. Some of your children are not complicated and some of them are and only you can decide what path you must follow. Please just make sure that your have done the research and know what you are doing.  Back to this child. This child was failed by a pediatrician, a developmental pediatrician and a DAN doctor. This child could have been diagnosed with this disorder by simply doing an organic acid test. A simply and inexpensive test could have stopped the damage to his little body and brain years ago. But no one wanted to look beyond the autism to see the sick little boy and now he has been permanently damaged. I want to use his story to educate all of you and all of the doctors in this valley.   Thank you for your time.    

Cynthia Macluskie

*Three years ago it was almost impossible to get a scope, a 24 hour EEG, IVIG paid for by insurance, and to get a mitochondrial screening.  Now all of these things are common place and easy to access in the valley.  I was at dinner the other night and 6 out of the 8 parents children are on IVIG paid for by insurance.  Phoenix Children's Hospital believes a 24 hour EEG is the minimum screening tool for our kids and acknowledges that our kids have seizure disorder.  We need to appreciate how far we have come.  We still have a way to go but we are so close and the momentum is moving in our direction. 

Thanks to all the parents who helped Susan and I on this project and to create change in the valley.  Now we are taking it on the road.  We are filming a documentary on co morbid conditions.  Can't wait to show you all.

Gotta run and film for our documentary.  Stay tuned!

Cynthia

Comments

[Roseann]

So much to be proud of! Job well done!

[Gina]

Hard to believe that 3 years ago this was the scenario.
Thanks to you & Susan for the hard work in making it easier to get proper medical care for our kids!