The NIDS Protocol

Before I delve a bit more into what Dr. Russell's plans are for Kaylee, I thought it would be good to explain the NIDS Protocol briefly. NIDS stands for Neuro-Immune-Dysfunction Syndrome and the theory is that many kids with autism are physically sick and their immune systems are so "hyped up" that they actually cause the brain to go into "shut-down" mode in order to protect it. They explain it like how you get "brain-fog" when you are sick. It's actually the body's immune response to protect its most prized possession: the brain.

So the NIDS doctors do TONS of blood tests and immune panels on our kiddos to see what exactly is going on so they can prescribe the right regimen. This includes the GFCF low sugar diet, antivirals, antifungals, antibiotics (for recurrent Strep infections that can affect the brain), and very low dose antidepressants.

Dr. Russell explained to me why the NIDS doctors use antidepressants while I was in his office. He said that once the immune system is "cooled down" effectively, it is important to restore blood flow to areas of the brain that have "shut down". According to studies using NeuroSPECT scans, children with autism have specific areas of the brain that are hypoperfused (meaning they don't get much blood flow). In autistic children, these scans reveal a lack of blood flow to the temporal lobes and too much blood flow to the limbic system (the center of emotions in the brain). SSRI's (or antidepressants) like Lexapro, Prozac, etc. are effective at restoring blood flow to the temporal lobes, where autistic children need it.

"So why not hyperbaric oxygen treatments?", I asked Dr. Russell. He told me that that the WHOLE brain gets hyperperfused with HBOT and that is not good for all of the "overactive" areas of the brain. With a very low dose of SSRI's blood flow can be restored to specific areas of the brain while ignoring the unwanted areas.

If you want to find out more about NIDS, please refer to my weblinks to the left and you can find even more in-depth information and research about this yourself. Believe me, I don't do it justice!

Not only am I very impressed with the research, I am impressed by the many children who have been helped by this treatment. Everyone at the NNY Autism Center has a child with autism who has been greatly improved or cured by this treatment. The proof is in the pudding!!

Walking into hope

(Picture is the Black River next to the NNY Autism Center)

Well, it was a week ago we returned from New York after our appointment with Dr. Russell at the NNY Autism Center.

I must say that there is something about having a child with autism that no one else can understand unless they deal with the same struggles, and that is the "shame" we feel when our child acts up or just can't deal with changes or not "getting their way". It hurts when people give you looks at the store...when your child doesn't act like the other kids who can respond when a stranger asks "how old are you" and your child looks at them like they said "ooga booga boo!".

There is something comforting about going somewhere where people accept and understand your child and their limitations. It was wonderful for me to go to a place where I felt like I was walking into hope. I have something I haven't had for a long time: hope.

It's just a glimmer right now. I won't let it burst forth like it wants too. But I am carefully letting a little hope shine on my life right now, and that makes all the difference in my attitude.

With hope, I can deal with just one more tantrum, one more day of autism at a time when I am thinking to myself that this won't last forever, Kaylee will get better someday.

But I digress...I was feeling good when we got to the center, because we would be talking to someone who has been there, and he will help us with our child! (Dr. Russell has a son with autism who has responded greatly to the NIDS protocol. He is mainstreamed and seems to have lost his diagnosis, I believe.)

I was expecting to see some sort of a sterile medical building but I was surprised to see that the autism center was a humble home right on the Black River. Everyone at the office was so kind and patient and it was a relief to me.

After talking to Dan and I, Dr. Russell looked at Kaylee's labs and history and decided that Kaylee was a good candidate for the NIDS Protocol and because of her high HHV-6 titers and other things(more info about this on the next post) he wanted to start Kaylee on an antiviral (Valtrex). He said he expected a "die-off" reaction in 7-10 days.

I will be sharing more soon...
-Jennie

Kaylee today

I am hoping that soon I will be able to share all of the improvements that Kaylee is making. In order to do that, I am going to paint the picture of how things are today and the specific challenges we are facing. Here are some of Kaylee's issues:

- pronoun reversal
- delayed echolalia
- sleep disturbances
- inability to understand most words (especially abstract ones)
- scripting
- hypersensitive audition
- inability to have a conversation
- inability to make choices
- constant low grade fevers
- toewalking
- irritability
- inability to transition to and from activities without tantruming

Kaylee's blood work shows:

- high lymphocyte count
- low neutrophil count (this combination is indicative of a bacterial infection)
- an active HHV-6 infection (although there are no symptoms present)
- an eosinophilic percentage of 3% (there should be none or a small trace, this is evidence for allergies)
- a high IGe level (also allergy mediated antibodies)
- a very high cholesterol count (205) (possible fungal indicator)
- high blood folate level
- high hematocrit and hemoglobin level (the exact opposite of what I expected!)
- a high NK (Natural Killer) Count

Next we will be talking about what treatment route Dr. Russell is planning on taking with her.