Further Along the Road

Lib and I are just recovering from a bout of bronchitis or I would have posted earlier about our meeting with our new doctor for the results of all of the lab tests. If you recall, we basically are starting all over again. Our new doctor is a neurologist and a DAN doctor. I was hoping by our second meeting I would still like him and guess what? I really do! He is a God-send to say the least.

He spent over an hour with me going over test results, handing me copies for me to keep, and only charged me for about a 20 minute visit. The old doctor in NY? Would have charged 4 times as much for 20 minutes and we'd still be in the same old place doing the same old thing.

First, the results of the stool tests showed that Lib has a Pseudomonas bacterial infection. He is on garlic extract for that. That stuff is powerful, if you've never tried it.

Second, he had absolutely no Lactobacillus, the good bacteria, growing in his gut. He had two strains of other non-pathogenic bacteria, but the lack of Lactobacillus blew my mind because I have been faithfully giving a probiotic twice a day that is loaded with Lactobacillus. I was stunned. How did this happen?

I showed NEW DOC the $50 bottle of NuFerm that our OLD DOC put us on that was supposed to be so fabulous. He looked at it and just said, "No." He prescribed a different probiotic twice a day on an empty stomach, added in a Saccharomyces boulardii, (actually a friendly non-pathogenic yeast) twice a day in non-chilled water, and added FOS powder, which basically is food for the good bacteria to make them stay in the gut. He prescribed Diflucan for 15 days at a much lower dose than the one that the former doc put us on last year when we went through so much hell with die-off. Do you remember Lib being on Diflucan for five months in preparation for a trial of Valtrex? Crazy. I see it all now as CRAZY.

Guess what? No OAT (organic acids test) was ever done. God, I'm learning the hard way at the expense of my precious child.

This yeast Lib has I am convinced got kicked up because the former doc did not bother to do labs before giving us a strong dose of DMSA chelation suppositories( I asked for half the dose, thank God) nor did he give us proper probiotics to help the good bugs stick around. He simply told me to double up on the probiotic. For this, we paid how much money for how long?? To say that I was put out about this is the understatement of the year. Here we are having to start all over again. That was too much money and too much hell to be put through to have to start all over again. I need to write a letter to him telling him exactly how I feel. By the way, I cancelled an appointment with OLD DOC because I could not afford $300 and it was after I saw the NEW DOC. Guess when the next appointment for Lib would have been? J U L Y. That's right. And this child, they knew, was undergoing chelation.

Lib also had very little enzymes in his gut to digest his food, so we added some new enzymes, a different brand that is targeted to exactly what Lib needs according to the labs and not just the standard Kirkman DDP-IV with Isogest. He was on that, although sporadically.

If the other doc in NY would have spent more time with me, maybe if I had had labs where I could actually see what was going on with my child and understood it better, I would have been more vigilant with enzymes with every meal. I also was never told the proper way to give the enzymes and probiotics (enzymes with every meal, probiotics in between meals with unchilled water - important). The doc in NY would prescribe something, jot it down, then hand me off to the nurse so quickly it would make your head spin, and suddenly, you're talking to the Nutrient Room where they are packing up a box to ship to you. The Nutrient Room? I remember them telling me to just take everything at once and dump it in some liquid to give to Lib. This is something you should never, ever do.

So much fell through the cracks in Lib's treatment. So many people who I thought were experts, were not.

So, NEW DOC said, the gut must be cleaned up, that it is the foundation of every other treatment we will ever do. Get the bowels moving to remove toxins. No hyperbaric chamber treatment and no chelation until the gut is in balance. Period.

So, in addition to the probiotics and enzymes, the diet had to be cleaned up, too. I was so proud of how far we had come, and still am, but had to do even more so in addition to our two-year stint of being gluten- and casein-free and our one-month period of being MSG-free. So, in the course of one-week's time, we are now soy-free, yeast-free, and sugar-free with the exception of a little agave syrup in a cracker which is eaten less frequently or not all.

I threw out the pretzels for good. All of the Enjoy Life snack bars and cookies had evaporated cane juice, so they had to go. I baked brownies with Xylitol which are wonderful, only in case we have to have a treat. I threw out the apple juice I was using to mix supplements with. I made a batch of Xylitol-sweetened water to use instead.

Xylitol is great. It has some laxative properties to it in larger quantities, it is an antibacterial, and you can substitute it 1:1 for sugar. There is no unpleasant aftertaste. It is purported to kill Candida yeast, too, but I am unsure if this is true or not. The only drawback? The expense. $14 for a 2.5 pound bag.

I think I could teach Gut Health 101 at the junior college now.

The organic acid tests showed high yeast, high oxalates, low vitamin C, and anemia. We are having iron studies done right now. And of course, that low Vitamin D which was practically rickets. And we live in the Sunshine State. That ought to tell you right there, that you cannot get enough Vitamin D in your food or from the sun. There are some people who are positing that autism is caused by Vitamin D deficiency and that Vitamin D deficiency is an epidemic in itself. Did I forget to say that Vitamin D prevents seizures? And, that since being on the Vitamin D I have not seen the absence seizures? Can it really be this simple?

NEW DOC prescribed some new MB12 shots: Methyl-B12 + NAC + folic acid. I am unsure if this is Dr. Neubrander's original cocktail or not (Neubrander is the one who came up with the MB12 protocol). The NAC (N-Acetyl-Cysteine) I am excited about as the organic acid test results said that Lib could benefit from NAC. NAC removes mercury. I am waiting until tomorrow in case there are side-effects, he can hang out at home. You just never know how a child will react to anything.

NEW DOC said he could not give guarantees but he thinks if we get the gut balanced and the lead out, Lib will start talking. I can always hope for that. He wants to talk so badly. I understand...it could be too late. I try not to go there.

So far, so good. Lib is a little trooper. For all we do to him, for all he has been through, he has the sweetest nature of any human being I have ever known.

We only had a brief few-second screaming fit of die-off after starting the Diflucan and the diet, for which I immediately gave some charcoal and now everything is coming along beautifully. I am getting better eye contact and Lib is eating what I am sending to school and what I put out at home. He tries different food more readily. The tactile defensiveness has lessened. I am getting lots of positive comments from everyone.

This will take time to straighten out. TIME. One and a half years ago I started on this path and I thought I had traveled to the right doctor. I could sit and cry over that, but as NEW DOC says, the past is the past, there is nothing you can do about it now except go forward. There will always be that little niggling "what if" in the back of my brain..."what if" I wasted my son's precious time? I didn't waste it, OLD DOC did. And he is rich and famous.

Bottom line is, don't think that just because a doctor writes a best-selling book and is suddenly on the talk show circuit, that this man is the right doctor for you. What happens is, after the doctor "goes Hollywood," the practice goes into crisis. There are then too many patients, not enough staff, not enough time for the doctor to review the records, remember who your child is, and prescribe a protocol tailored to your child. I have learned the hard way. All DAN doctors are not created equal, and just because someone gets published does not mean they are good. Jerry Kartzinel, now famously known as Jenny McCarthy's doctor, said he would turn no child away. No, but that child will probably be waiting three years or more to get in to see him now.

This is probably the hardest part of all, finding a doctor who can serve as a skilled guide to help navigate through this forest of symptoms and treatments. And, finding one who is local or at least nearby where he can actually put his eyes on your child. Remember, NEW DOC took one look at Lib and said, "classic inflammation." He was the one who knew what tests to order, where to begin looking.

This is a long post and I am sure many get tired of reading and give up. I publish details because I get emails from people who ask lots of questions about protocols. I did not want to publish doctor's names too much on this site because the last thing I need is someone suing me for slander. But, I'm not going to keep silent about it either. My husband is completely furious at the old doc. Feels we screwed around for one and a half years.

To end on a more positive note, Lib got into autism camp this summer. His dad is doing the music workshop for the kids so that should be a lot of fun. We have found this wonderful doctor. And, my beloved sister has moved back home to stay! I intend to have a fun summer, spending much time in the pool and at my healing ocean waters and doing all I can to help my little boy mend.

What else can I do?