For those of you I haven't talked to yet, our Texas trip went very well!! The boys did great during the long drive and we had lots of fun in Texas! And, we LOVE Dr. Stewart.
This is going to be long, so I will get right to the summary of the visit (I'll do the best I can to be as accurate and thorough as possible...it was a lot of info):
Dr. Stewart reviewed a thorough history of Ben's development and current symptoms. They also ran several tests on him that record information about his auditory processing and vestibular systems and give a nice pretty computer read out. From this, he said he believes something "went wrong" in Ben's development somewhere between 6 & 9 months of age. He said that he does not believe that the cause of autism is always vaccines, but that it often is and that it appears to be the trigger in Ben's case. (I have since looked up Ben's vaccination record and realize that he had 7+ vaccines all in one day when he was almost 7 months old.) :o(
Anyway, the significance here is that Ben's nervous system incurred a major hiccup somewhere between the time his visual and vestibular (balance) systems were developing...which is why he is such a visual stimmer. (His vestibular system does not work properly, so he tries to compensate with his visual system.)
So, what went wrong? From his research, he has found that 95% of the autistic kids he's treated have abnormalities in two genes that he has identified. He found this after realizing that almost all of the kids have abnormal homocysteine levels which indicates a problem in the body's methylation (detox) process. In other words, these kids have a predisposition for trouble. It seems that the live viruses from the vaccinations attach themselves to these kids' nerves and cause (among other things) chronic inflammation and problems with the immune system. (Hmmm...this is why he is happier when he takes Motrin!)
There was talk about dopamine levels and inflammation and all that...but I'm just gonna leave it here for now!
So, what do we do to fix the problem?? First, a three month course of antivirals to get those little buggers off my baby's nerves. He also gave a small dose steroid to help with the increased inflammation this will cause.
Next, folate! He said that this is where the DAN! doctors have it wrong. B-12 is not the magic maker. It's the folate. Your nerves need folate to regenerate and heal themselves. He said that the B-12 is nice to have in there, but not as important. He also said that you have to start very slow adding folate and B-12 gradually. Flooding a system that has been deficient in these could be very overwhelming for the child (which is why Ben got so crazy on the 3 courses of B-12 we have tried in the past.) So, he prescribed a compounded trans-dermal (topical) lotion (NO SHOTS! YAY!) that is comprised of a special form of folate, B-12 and vitamin D. He will slowly increase the levels at a rate Ben can hopefully tolerate.
Finally, he recommended a multi-vitamin/mineral/etc. that has EVERYTHING Ben takes in it (even the digestive enzymes) and then some. This was formulated by him and is sold by Neurobiologix at his cost. (I totally believe this...it is going to save us hundreds of dollars...so cheap for what it is.) He also recommended we use a stronger probiotic (also available from Neurobiologix and very inexpensive). Finally, he suggested that we keep Ben on carnitine as his muscle tone is very low.
Unfortunately, he said that up until this point, Ben's supplements probably haven't been doing much good. He said that while his body can now digest them, it is unlikely that his cells have been able to absorb and use them correctly. Hopefully, the folate/B-12 will help with this! He also said that when we come back to see him in October, he will decide if Ben may need some mitochondrial support (mitochondria are the part of the cell that convert nutrients to energy, if I remember correctly from my Anatomy & Physiology days!)
So, in a nutshell, we are getting rid of the viruses that are damaging the cells, and then we are going to help repair the cells. He told me to expect Ben's behavior to be "up and down" for the next 6-8 weeks while on the antivirals. (Lucky he isn't in school this summer!) He said that gross motor improvement usually comes around 4-5 months, followed by fine motor improvement, then language. (He said it is like we are restarting the nervous system back to day one...which is why it'll take at least 9 months for meaningful language development to begin.) He said that typically at that point, progress comes fast! We are praying this will be the case for Ben!
We start the new protocol this week. After October, if it seems to be working, he said he will stretch out the time between visits since we are coming so far to see him.
Another thing I talked to him about was having future children. He told me (and yes, my eyes welled up) that I do not need to be afraid of having more children. He said that while he is not anti-vaccines, he does not believe all children's bodies can handle them. (Especially when there is a family history!) He recommends waiting to a child is 6 months old before considering vaccinations. At that point, he said that he orders a simple blood test to see if their immune system can handle the live viruses (I think this has to do with the homo cysteine levels). If it can, then great...start the shots. If not, then he puts the child on his protocol and retests until his body is ready to fight off the viruses like it is meant to.
Big breath...it's a lot to take in, isn't it? And, I feel like I barely covered it!
If you want to hear more (I really encourage it), here is a link to several podcasts in which he explains his research to another mom:
Unfortunately, I think this website is down right now. I was able to access from my sister's computer while we were in Texas, but have not been able to get on since we've been home. I urge you to keep trying if you have problems with it...very worth it!
Also, here is Dr. Stewart's bio and direct website. http://www.drkendalstewart.com
Now, I want to tell you about my personal impression of Dr. Stewart. He is amazing. He is a warm, generous man who gave God the glory for all he is doing. He did not for a moment seem arrogant or like he was selling me snake oil. He did seem confident that he can help my son. He took his time to explain everything to me in a way that was easy to understand, while joking and telling me how beautiful my son is. He is a world renowned neurosurgeon and immunologist/ENT, and you know what? I LIKED him! :o) There were many times during the appointment that Jenny and I both teared up. It was sad to hear how my poor little guy experiences the world (off kilter because his body doesn't know where his brain's midline is), but it was so comforting to speak to a doctor who understood what it going on in his body and has a course of action to fix it! I finally feel like Ben is in good hands.
So, time will tell if this all works. But, I really feel that it will. I can't yet say for sure that I believe Ben will be completely recovered, but I'm hopeful that this protocol will make a tremendous difference in his life. Please pray with us that this will be true!!
Anyway, here is a link to Neurobiologix website. (The B-12/folate lotion will be OTC within the next few months...but I recommend seeing a doctor before trying it...there are other things involved.) We will be starting the Biotic Boost and the Nutrition Pro Complete Liquid when it arrives this week. Also, I will be taking the vitamin D softgels. (He gave me a month's worth free after I mentioned I was D deficient. He said that taking a powder based D is useless and that it should always be in an oil form.)
www.neurobiologix.com
I will put all the links on my sidebar as well.
Please, if you want more info than what I've shared here, email me! I would be happy to discuss with anyone!! julie0674@yahoo.com
If I think of anything else, I will post. But, now I have to go get Ben ready for his blood draw. Yuck! [Dr. Stewart ordered the following: homocysteine levels, immunoglobulin, Vit D, and total T cells. He guesstimated Ben's homocysteine level to be around 5 (low.) When we had it tested 2 years ago, it was around 3.5.]
Please keep praying for us!
Love to you all!
Julie, Jer & Ben
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