Because of circumstances I have had to do alot of research on autism as of late. In particular Asperger Syndrome. It looks as though both my boys will be diagnosed with this differential diagnosis.While going through this research, what amazed me was this term Neuro Immune Dysfunction Syndrome. Then I started to read the works of Dr. Michael Goldberg, a doctor right down the street from me. He connects this to autism as well as CFIDS. I have not really seen Lyme mentioned in any of the papers.
Yet they are approaching dealing with acquired autism in a similar manner as we do with Lyme. I am really actually stunned that I have not come across this earlier and I am equally stunned that Lyme is really not mentioned. I dont know if this is a disconnect or not.
I will tell you though they are getting their act together. They have good test numbers, which in alot of cases read exactly like my sons. I tried searching through Lymenet and could not find any reference, so I apologize in advance if this has already been discussed.
Here is a link to a paper describing NIDS
http://www.nids.net/whynids.pdf
Why NIDS?
Many parents think that the worst time of their lives is when they receive the autism diagnosis on their child, and are told that the future is hopeless because'' nothing can be done.
Most parents will not accept that statement and start looking for anything that might help their child. What they find are a plethora of treatment options all touting their advantages. Vitamin therapy, auditory therapy, elimination diet, numerous behavioral therapies, horseback riding, speech therapy, and on and on!
They all sound like they have something to offer. What's a parent to do? How does one make the best decision? What if you are wrong? How will you pay for it? So begins the second worst period; finding the best therapeutic plan that will result is a normal or more normal child.
You are inquiring into the NIDS protocol and we are sure that you have many questions and concerns. Is NIDS different from the other medical protocols available? Does it work? Why should I try it? These are some of the questions that parents have to have answered in order to make an intelligent choice.
So let us begin and tell you just what makes the NIDS protocol different. The answer is one word...science.
The first issue that has to be discussed is the definition of autism. If you look at any medical textbook you will find that autism is a neurodevelopment disorder that occurs in 1 for every 10,000 live births.
The child is affected from birth and has a poor prognosis. In the last two decades it has become abundantly clear that there are many children being diagnosed with autism that developed normally until the middle of their second year of life.
Moreover in some parts of the country it has already been reported that the numbers of these children are now occurring at 1 for every 500 live births. An increase in numbers like that in just two decades is considered an epidemic and by definition you cannot have an epidemic of a neuro-developmental disease.
It may be that there are children with autism and they do occur in 1 for every 10,000 births but we believe that the rest of the children have something that we call NIDS.
NIDS (Neuroimmune Dysfunction Syndrome) is caused by an immune system that over and under functions. The immune system is perhaps the most exquisitely sensitive of all of the bodily systems, and like the others any long term assault on the immune system will eventually effect the entire body.
Have you ever had that spacey feeling when you had a cold of the flu or allergies? It usually makes you stop what you are doing and take care of yourself so that your body can concentrate on getting rid of the invading germs that are making you ill.
We know that this is a reaction of the body set in motion by the immune system and we think it is triggered in order to protect the brain. Thus we think that what has been called autism is the extreme of what may be a protective mechanism.
By doing a Neurospect examination of the brain we can actually see that there is a decrease in the blood flow to the Temporal lobe of the brain which houses the functions of speech and language and is a significant part of what is called personality.
Why has this happened to your child? There is probably some kind of genetic component involved because studies have shown that children with autism come from families with an increased rate of immune problems.
We also suspect that the autistic symptoms are triggered by an interrelationship between the child and his environment, which may be one of the explanations as to why there is such a range of severity in the disease.
Now that you know what NIDS is how do we determine that a child has it? The first thing that is done is to take a history of the child. While there are many variations some of the most common findings are normal development until the middle of the second year, allergies, numerous minor illnesses, rapid response to minor illness, poor eating history, food intolerance, sensory problems, developmental delays particularly in the area of speech and language.
A physical examination is done with the most common findings being normal with possibly a sallow color, and allergic signs and symptoms. After the history and physical examination is accomplished lab work is taken.
The lab work is extensive and expensive. Some children cannot have all of the blood drawn during one visit. It may be that as the protocol matures and we refine our techniques we will be able to eliminate some of the tests however, at this point that is not the case.
The lab work can be broken up into three general categories; general health, underlying illness, and immune system. The first group of tests is taken to make
sure that your child is healthy and to see what effects, if any, this disease has already had upon him.
The second group of tests will show what underlying infections that your child has, and the third group of tests gives us a snapshot of how your child's immune system is functioning.
It is in interpreting the lab tests in combination with the history, and physical that results in the NIDS diagnosis. Positive tests are important but negative tests in light of a positive history are just as important.
For example, your child may have had a strong history of a particular illness but his lab work does not reflect this, the conclusion is that the immune system is not functioning correctly.
This malfunctioning of the immune system will most likely be confirmed when we interpret the tests that directly look at the immune system.
There are some common trends that we do seem to find with many of the children diagnosed with NIDS. Much research has to be done before we can come up with predictive profiles but that does appear to be in the future.
The next step in the protocol is starting your child on treatment. Treatment is based specifically upon your child's history, physical and lab results. There are some broad groups of drugs that we do use that might be used with your child.
If your child has an indication of an underlying viral infection we will use an anti-viral medication. If he has signs of an underlying fungal infection we will use an anti-fungal medication. If your child has an underlying bacterial infection we would use an anti-bacterial agent.
The purpose of these drugs are to get rid of an infection that your child obviously should not have and allow the immune system to go back to a more normal level of functioning instead of ``overdrive''.
If your child has allergies and food intolerance these would be gotten under control through the use of diet and medications with the goals of symptom relief and again decreasing the stress on the immune system so it can go back to a more normal level of functioning.
As the immune system begins to function on a more normal level increased blood flow to the previously unused parts of your child's brain will begin to occur. In order to enhance this blood flow in the brain medications in the SSRI category may be used in small doses.
At this point a neurospect examination may be requested to assist the Health Care Provider in determining the best choice of SSRI. It may be that your child may have already had a neurospect as a part of the diagnostic work up so another may not be necessary.
Some children may never have to have a neurospect. This decision is a clinical one made on an individual basis. As your child begins to get a more normal blood flow to his brain he will have access to parts that he has perhaps not used in many years. Rehabilitation through school, social, recreational, computer, tutoring, and other programs will now become an all encompassing part of your child's life so that he can catch up on what he has missed.
Other medications may be used depending upon your child's unique situation. You may be saying to yourself at this point that the NIDS protocol doesn't sound very different from any other traditional kind of medical care that you have experienced and it is not.
What is new is the thought that there is a disease process behind the symptoms that are currently called autism. The treatment of the abnormalities found by history, physical, and testing is standard pediatric medicine.
So we are back to the original question; why NIDS? It is a new concept melded with traditional medicine based in science. Doesn't every child deserve that?
[This message has been edited by hwlatin (edited 21 February 2005).]
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