In So Many Words

I first became aware of Liquid Zeolite in the fall of 2009 through a retired local pediatrician who had used it with several people and seen a good response in regards to health problems related to toxicity. He suggested that it may be helpful for some of the behavioral symptoms of children with autism who had higher toxic levels of substances such as mercury, lead, cadmium and arsenic, and several local families, including us, agreed to give it a try.

I was never really sure whether it made a big difference for Michael, although I can say that it was the easiest supplement we have ever used. It is a tasteless, odorless, clear liquid, and the dosage is only a few drops which can be placed directly on the tongue.

At the time, I did note improvements in a few areas (less spinning and perseveration and better attention and focus) over the first few weeks but cannot say whether these would be accounted for by other factors. However, with the exception of his dramatic positive response to the removal of dairy from his diet and the near-miraculous effect melatonin has had on our entire household, Michael has had milder gains from most of the other nutritional treatments we have done with him, so this is not unusual for him.

Over the last couple of years, I have found that my own health problems have worsened. What was thought to be reflux esophagitis (although it didn’t really fit the standard profile for it) was found last spring to be eosinophilic esophagitis. This resulted in the additional diagnosis of several confirmed food allergies, along with milder reactions to a few other foods and some seasonal allergic symptoms. I also have issues with my weight and with depression and anxiety, so there are a number of factors working together here.

I have thought about trying the supplement for myself but hadn’t followed through on the idea until recently when I spoke with the folks at True Zeolite. They shared with me about the health benefits of zeolite:

Waiora liquid zeolite has a lot of benefits because of its ability to bind and remove heavy metals and toxins. Some of the zeolite benefits include balancing your PH level, helping with diabetes, acid reflex and digestion, headaches, allergies, preventing viruses, and supporting a healthy immune system. Waiora liquid zeolite is also 100% safe to use and natural for long-term use.

So, I am going to be giving this a trial run on myself to see if it helps in any way. I will be keeping track of my progress and will let you know how it goes and what results I see from it. And, if the last several years are any indication, you don’t have to worry about my making any other lifestyle changes in the next month to skew the results!

In the meantime, you can find a lot more information about what Liquid Zeolite is and how it works on the True Zeolite website.

Disclaimer: I was provided with a one-month supply of Liquid Zeolite at the suggested detox dosage. True Zeolite has also purchased a quarterly ad space on this blog.

We got our results from the visit to the DAN! doc who we started seeing through Pfeiffer Treatment Center (I wrote about our first visit earlier). They were very interesting and supported the fact that there are a couple of areas out of balance.

THE RESULTS
First of all, his kryptopyrroles were quite high and his zinc levels were below the normal range, indicating the presence of pyroluria as suspected. His zinc/copper ratio and the amount of unbound copper were both somewhat high, and the amount of copper-binding protein was lower than normal.

A couple of things I wasn’t expecting to hear were that his vitamin D level is deficient and that his histamine level is elevated. He also had low ferritin, indicating that his iron stores are low, which isn’t so surprising given his diet.

The organic acids test showed insignificant amounts of yeast and normal bacteria, although he did have a somewhat high arabinose level. And finally, the X-ray showed mild to moderate fecal retention.

THE PLAN
So, we have started the compounded supplements along with a variety of other items that were recommended by the doctor. We haven’t gotten to the full plan yet, but most everything has been started. Here’s a breakdown of what we are giving:

With breakfast

• Compounded supplement including Vitamin C, B6, P5P, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Citrate and Vitamn D
• Inositol and Taurine (for calming and aggression)
• Zeolite (which we have been using for several months for detox)
• L-Carnitine (for motility)
• Probiotics

With supper

• Compounded supplement including Vitamin C, Vitamin E, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Picolinate, Iron Gluconate and Vitamn D
• Inositol and Taurine
• Zeolite
• L-Carnitine
• Probiotics

At bedtime:

• Melatonin

We were using GABA for calming but the nurse had us discontinue it since we were seeing any changes. That is when we introduced the inositol and taurine. I can’t say that I have seen a difference, but they are both safe and helpful in other ways, so I’m going to give them some more time.

STILL TO BE ADDED
We still need to add cod liver oil to the regimen. My husband has actually been taking the CLO that I had. When I ordered more, I tried a different brand and he remarked on how much better it tasted. When I looked at the bottle, I realized that it was just fish oil with the essential fatty acids and no vitamin A or D, so that’s probably why it tastes so good! I need to order the regular CLO and then start giving that to Michael.

I also have a calcium/magnesium liquid that he is supposed to take, along with a third dose of L-carnitine, at bedtime, but he hates it due to the creamy texture. We are also supposed to do a bowel massage each night to help with motility.

The other thing that I did faithfully at the beginning and have slacked off on is applying Evening Primrose Oil to his skin at bedtime. This is an omega 6 which has been shown to be helpful in treating pyroluria, along with the high doses of B6 and zinc.

I have been reading so many great posts by bloggers lately, and whenever I see something that really speaks to me in some way, I feel an urge to share it. Rather than flood Twitter or Facebook with links that may or may not be seen by anyone, I decided to list a few of them here.

So here are some things that caught my eye in the past week:

On Advocacy – a subject that is near and dear to my heart:
What Is Advocacy? An Inside Scoop From Pathfinders For Autism from The Gift: A Blog for Caregivers of Sensational Children

An Amazing Moment When a Kid is Just a Kid
The Power of You and I from Welcome to Normal, Population 0

Insights Regarding the Division Between Biomed Moms and Neurodiversity
Desperate, huh? and Bridging the Gulf from Life as the mother of 4

Practical Tips
Simple Accommodations to Help Your Autistic Employee Excel from Spectrum Siblings

Autism Treatment – How to Use Supplements to Treat Autism, Part 1 and Part 2 from Dr. Kurt Woeller’s Autism Recovery Treatment Blog

And on a separate, somewhat superficial note, did you know that you can now put a Facebook “Like” button on your web site? It allows you to see how your Facebook friends are interacting with sites around the web. I put one on Another Piece of the Puzzle just for kicks, so feel free to pop over and “like” me (and let me know if you add one to your site)!

I last posted about my son’s biomedical treatment last October, when I was fed up with the DAN! doctor we were trying to see and decided to cancel our follow-up appointment (that had been rescheduled more than once due to testing delays).

Well, since then, we were able to go to the outreach clinic held by Pfeiffer Treatment Center, which is a non-profit center specializing in treating biochemical imbalances. They are located in Warrenville, IL, but hold an outreach clinic twice a year in Annapolis, MD.

I took Michael down there on March 9th, the day after his first chair-throwing incident and the day before his 8th birthday, and I was very impressed with the whole operation. They basically take over a floor of a hotel and you see the nurse and the doctor, who is a DAN! doctor by the way, and also give a urine sample there. The blood draw was done at a LabCorp literally two blocks away.

The doctor told us that he suspected pyroluria based on Michael’s symptoms, but that we would know more once the testing was done. He gave me a starter supplement and a short list of other supplements to use until we heard back from them. He also had us do an OAT (organic acid test) to check for yeast or bacteria and get a X-ray to check for fecal retention.

Here are the supplements we started/continued after the first visit:

• Pfeiffer starter supplement (includes Vitamin C, Vitamin E, B6, Magnesium and Zinc)
• Evening Primrose Oil (we did transdermal, this oil is an Omega 6 and recommended with pyroluria)
• GABA for calming (we didn’t really see any effect from this one)
• Continue the Zeolite
• Continue probiotics once the OAT sample collected
• Continue melatonin for going to sleep
• We added L-Carnitine after the Xray showed mild to moderate fecal retention as it is supposed to help with motility

I started very slowly with the supplements, just juice at first and then mixing in a little bit at a time until I got to the dosage. He has been surprisingly compliant, for which I am very thankful. Hopefully that will continue as we start his customized plan. I’ll post more about his results later.

Well, I didn’t get much checked off my list this last week – too many other things kept popping up that needed to be done. After going round and round with the DAN! doctor’s office, I have decided to get copies of all the test results we haven’t met to review yet and then cancel the follow-up appointment. It is just not worth the hassles I am dealing with every single time I need insurance paperwork done properly or even to talk to someone at the office. The office manager has been very helpful, but even she can’t make up for the other frustrations I have experienced.

Now I am trying to figure out what route we are going to go. I do have Michael taking a small amount of Essential Fatty Acids as well as Melatonin at bedtime and Liquid Zeolite, which we are trying out with a few other local parents. We are going to be tracking the zeolite on a weekly basis, so I can’t add the other supplements I was holding until the organic acid test was sent in (which is now on hold anyway!).

We have a behavior plan meeting Thursday morning with the school – very excited about that – and our wraparound agency is working on getting a new TSS b/c the current one is just not up to par with what we need.

With everything going on, I think reorganizing my to do list into more of a schedule would make sense and help me to feel less like I am trying to do too many things at once. Hopefully, this will move me closer to a routine like the one that was working so well last summer.

This is where the To-Do List normally goes, but I just still haven’t really figured out how to organize my schedule. So I guess this is really just a Biomed Update!

The behavior plan meeting went well. I’ll post more about that soon. Right now, we’re super excited about going to see They Might Be Giants on Saturday for a kids’ show – although it is supposed to be yucky and rainy. My sister-in-law and her family are planning to come. Two of their girls haven’t been feeling well, so we are hoping they will be better by the weekend.

For more To-Do Tuesday, visit Crazy Adventures in Parenting.

Yesterday I shared how some of our Little Guy’s sleep issues (and some other problems) went away after modifying his diet.  But that wasn’t the whole story for him – as he became preschool age, it started taking him a long time to fall asleep, often at least 45 minutes and sometimes up to 90 minutes.  He just couldn’t relax enough to close his eyes, and it sometimes seemed that he was reliving his day or a video he had watched earlier.

He also began to wake up in the middle of the night and have a lot of trouble getting back to sleep.  He wasn’t evidencing any pain and was very quiet and groggy, not hyper and alert like some kids are when that happens.  Again, we were looking at 45-90 minutes to go back to sleep, and he would get very upset at either time if I tried to leave his room.  You could argue that was my fault, and you could be right, but that’s where we were at the time.

After implementing the suggestions offered by some sleep experts related to consistent routines, physical activity and slowing things down in the evening, etc, we still weren’t seeing any improvement and both mom and son were not functioning as well as they should be during the day due to the lack of quality sleep.

In my research on various supplements and treatments that could be helpful with autistic kids, I learned about melatonin, which is a hormone secreted in the body to help regulate sleep cycles, among other things.  Although it is an over-the-counter product, we did consult with his doctor before starting it.  Since then, my husband has started taking it, and I use it on occasion as well.

There are different opinions as to a proper dosage and every person is different, so I am not making any recommendations for other people, but I will share that we use Kirkman’s 1 mg chewable melatonin tablets.  They have a slight mint-flavor and are not very expensive compared to many of the other supplements you may be using.

Without question, melatonin has been a lifesaver for us in terms of sleep.  Now he can fall asleep within about 20 minutes and rarely wakes up in the middle of the night, or, if he does, falls asleep immediately after being ushered back to his bed. (Melatonin doesn’t technically help you stay asleep as it only enhances the natural melatonin present at bedtime, but perhaps the sleep quality is better, allowing him to not wake up so easily as before.)

If you are thinking of trying it, I would recommend reading more about it – the Autism Research Institute has a good article on melatonin – and talking to your supportive health care professional.

This list includes four top resources for learning about biomedical treatments that are used with children (and adults) on the autism spectrum. For info specifically related to diet, see this post, and you can see my general comments here.

Autism: Effective Biomedical Treatments by Jon Pangborn, PhD and Sidney MacDonald Baker, MD. This is commonly referred to as the “DAN! manual” (DAN! stands for Defeat Autism Now!), and it is one of the best resources out there for detailed information about these interventions. The DAN! website also has lists of practitioners and free access to videos of past conferences.

Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder by Jaquelyn McCandless, MD. Written by a practicing physician and a grandmother of a child with autism, this book is “designed to help parents get their children started on effective treatments faster.” The third edition includes updates on some of the more recent developments in the science and available treatments.

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies by Kenneth Bock, MD and Cameron Stauth. This is a great book with lots of case studies and an opportunity to see how he goes through the decision-making process for each child’s treatment. More information is available at 4-A Healing.

Changing the Course of Autism: A Scientific Approach for Parents and Physicians by Bryan Jepson, MD with Jane Johnson. This is the book to give to your mainstream physician, as it covers much of the medical research that has been done on autism.