Sophie’s Progress and Autism testing
Date: Thursday October 29, 2009Posted in: Chelation, GF/CF Diet, Personal Stories, Recovery Stories, Supplements, Testing and Test Results
Sophie has been improving but it is hard to measure the change. I use an online test to help me gain perspective, (links below). It is scored 1-100, 100 being more severely effected. Sophie’s score was 67. She had scored 74 in June 2008. The test is divided into sections:
Speech/Language/Communication,
Sociability
Sensory/Cognitive Awareness
Health/Physical/Behavior
Sophie made gains in all areas except for health where there was a bit of decline, mainly because she is now some what destructive, biting objects when frustrated. Also the constant constipation issues brought down her score in that area.
I want to share her improvements. Sophie seems much more present. She isn’t off in her own world anymore. She will look at us, almost always, when we say her name or ask her to look at us. Her singing is back! I hear her precious little voice singing again. She is also counting again and she is back up to 20 where she was when autism took her away from us. She plays with her sisters a lot, granted, she doesn’t share and she controls the game, her sisters adore her and don’t mind a bit. She has relationships with people. We have moved into our parents house and she spends time with different members of the family.
I attribute the improvements to chelation. I am using ALA and DMSA, 100mg, 3 times a day 3 days a week. I also have her on probiotics, tmg, folonic acid, mb12, biotin, vitamin c and miralax daily. I use GSE and Milk thistle when chelating, the GSE for yeast control and the milk thistle to support her liver. You can find most of these things here http://astore.amazon.com/autishar-20
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I have been swamped and definitely not posting as much as I would like. I have so much to talk about. The last time I posted, I had just started doing the 3 times a day chelation. Here is how that has progressed. I started with very low doses of ALA and DMSA, well I ran out of ALA, so I continued increasing DMSA. I worked up to 100mg 3x a day. Sophie was doing fine, I can’t say that I am seeing the big gains that I saw when we were doing the cutler’s protocol. I have also heard that they go through a time where they stopped making gains for a while even though the metals are still leaving their systems.
Well eventually I purchased some ALA at my local health food store, I have used Kirkman’s up to now, but things are tight here, both in time and money, so I am being very basic. I then worked up to 100mg of ALA. Of course I ran out now of the DMSA so she is just getting ALA.
So here is my summary:
Cons- I am not seeing the huge gains I saw before, none of those “knock me out of my socks” moments. It wouldn’t be fair not to mention that Sophie has left the gf/cf diet with enzymes now and she is only getting a few supplements so this could also account for the lack of huge gains. I will probably ease back into the diet sometime in the near future.
Pros- CONSISTENCY ! I have been able to chelate every week like I have always wanted. It is sooooo much easier only giving this to her 3 times a day that I can actually do it without having it be a major ordeal. Also she doesn’t have the extreme yeast flare ups that she had with the other protocol. Huge plus!
I actually doesn’t seem as hard on her as the other protocol. My theory on this is that she is in the time when it stalls, or this protocol isn’t removing as much metal. The fact that the yeast isn’t as bad also make me think it may not remove as much mercury.
So all this being said, I am very happy with chelating in this manner. I was so afraid to try this for so long because of the threat of harm from metal redistributing between doses, but actually this treatment seems to easier on Sophie.
Life takes funny twists and turns. With my husband being laid off, I have started to freelance web development. I have gone from being a stay at home mom to being an extremely busy work at home mom. My house is messy, homeschool is challenging but we have food and a home.
For quite some time now I have been considering trying a different chelation schedule. I have used the Cutler protocol since I began chelation, which calls for dosing all night long(every 4 hours) and every 3 hours during the day. I wanted to be as cautious as possible and I do believe that is the safest protocol. That being said, many people that have healed children, have done a 3 times a day schedule. Most DAN doctors recommend a 3 times a day schedule, including mine. So finally, because of this busy time, I gave it a try.
The first time I gave Sophie what the doctor prescribed, DMSA at 100mg. I thought, “I trust this doctor, this is what she recommends, I will follow her instructions”. About 1/2 an hour after giving the dose I heard Sophie crying, screaming really. She was flush and then I noticed a rash all over her chest and arms. I put her in a bath thinking that would calm her down while I called her doctor’s office. The doctor was out and the nurse didn’t have much experience with DMSA she wanted to call poison control. Sophie was still screaming and I was more than terrified. I should have known better. That dose was more then 10 times the does I was giving her on Cutler’s protocol. The poison control center said the dose I gave was way less then the normal dose so they were not concerned about an overdose. The nurse pulled our doctor out of a conference and she said she thought Sophie had a huge mercury pull and that was why she had such a bad reaction. I gave her 2 capsules of activated charcoal and she was better within an hour.
After that episode I gave it a rest for a while. I did one more round of the cutler method, but I forgot doses on the second day and gave up. My life has been so busy it was just too hard. I realized that I was always putting off doing a round because something was going on. I was too busy and Sophie wasn’t improving anymore.
Finally I decided to try the 3 times a day method, but using my own experience and knowledge as a guide. I decided to start with just ALA 25mg. I just finished the round and here is how it went. I didn’t notice any problems with Sophie. She seemed to do very well. The 3rd day I notice the normal huge yeast flare up. The day after we ended the round she was cranky which is also normal for chelation for her. To me this signals that it is pulling mercury and this is an amount that is tolerable.
My plan I will keep at this rate for at least 2 more rounds before I increase or add DMSA. I also read the story of a woman who did DMSA/ALA every 3 hours during the day and every 8 hours at night. I may consider that down the road.
Right now I feel very good about this round. I will continue to watch for any signs that something is wrong, but I think this method will allow me to actually get the chelation done.
Chelation Station- How I Survive Giving Medicine All Night Long
Date: Friday July 18, 2008Posted in: Chelation
If you have been following my blog, you know that I use low and frequent dosing chelation. That means that I have to get up in the middle of the night to give supplements.
I sleep on the second floor and the last thing I want to do is go up and down the stairs in the middle of the night to mix medicine. My solution, Chelation Station.
I fill a tray with everything I need and keep it by my bed. First I get some of the prefilled capules of ALA/DMSA, then I get small medicine cups that I have saved from children’s medicine and I get the oral syringes that I use to squirt it in her mouth. The last thing I need is juice. I put the juice in a small bottle, the one pictured came from a pharmacy. I then use one of the thermol cups that are used for coffee. I fill it with ice and put the bottle of orange juice in it.
When my alarm clock goes off I pour a small amount of juice, 1/2 teaspoon or less, into the small cups. I open one capsule into the juice and use the syringe to stir. You can also add some other supplements to the juice. I usually add some biotin or a very small amount of GSE. I don’t want to make it taste too bad because the goal is to make this as easy as possible for you and your child, and you don’t want to have to give a chaser to your child.
That is all you need. When it is time to give Sophie her medicine, I say “Sophie it’s time for your medicine,” I put my hand under her chin and put the syringe in her mouth and very slowly start to give her the supplement. I squirt it towards the inside of her cheek not towards the back of her throat. She stirs a little and then goes right back to sleep.
This makes giving medicine at night as easy as it can be.
This is not medical advice. I am not a doctor, just a mom with a child with autism. I am sharing what we do.
I have been writing a series on Chelation and I thought that posting my actual schedule would be helpful to those just starting with Andrew Cutler’s method of chelation. His method calls for small frequent doses of ALA(Alpha Lipoic Acid) and/or DMSA(Dimercapto Succinic Acid). ALA is required DMSA is optional for mercury, but required for some other metals.
Schedule
I do this for 2 weeks and then we take a week off. If I don’t take the week off her yeast gets to bad to handle.
Monday
9am
12pm
3pm
6pm
9pm
1am
5am
Tuesday
9am
12pm
3pm
6pm
9pm
1am
5am
Wednesday
9am
12pm
3pm
6pm
9pm
1am
5am
Dosage
First & Second Round
DMSA Only- DMSA is optional ALA is required, I started with DMSA to remove lead. 1/8mg per pound (in our case that equaled roughly 3mg)
Buying Chelation Agents Without a Doctor’s Prescription
Date: Wednesday June 25, 2008Posted in: Chelation
I choose to chelate my child using Andrew Cutler’s method and I did this without a Doctor. You can buy ALA and DMSA over the counter. The biggest problem I ran into was finding the supplements in a low enough dosage so I could evenly divide them as needed.
Cutler’s method calls for 1/8 to 1/2 mg per pound. You always want to start a supplement with a low dose and then work up. So I would take my child’s weight, (30lbs), and divide by 8 and that will give me 1/8 mg per pound, in our case that equaled 3.75mg. The smallest ALA capsule and DMSA capsule that I could find was 25mg and that was difficult to find in itself.
Here are the links to where I purchased these items:
Kirkman’s ALA 25mg
Vitamin Research Products DMSA 25mg
I will discuss how I divide and administer these in a post I am currently writing called Chelation Station.
I have been chelating my child with Andrew Cutler’s protocol for more then a year now. I began without a DAN Doctor and then began seeing one many months later. I choose to pursue Andrew Cutler’s protocol calls for small doses of DMSA and ALA every 3 hours during the day and 4 hours at night for 3 days. You then take 4 or 11 days off. It seemed to be a gentle safe way to chelate.
I began by getting a hair test. I posted about that here Sophie’s Hair Test. I knew that Sophie had mercury exposure, so when I took the test, what I was looking for was other toxic metal exposure. Sophie showed some lead and ALA does not remove lead so I started with 2 rounds of DMSA alone and then added ALA after that. I give equal amounts of DMSA and ALA
Sophie was around 30lbs. Cutler recommends that you use 1/8 to 1/2 mg of ALA or DMSA per pound of body weight, per dose. I started at around 3 mg and slowly worked up to around 8 mg. I found ALA and DMSA in 25mg capsules and divided them up to meet those doses. I will discuss dosing and administering the supplements further in an upcoming post called Chelation Station.
Sophie did not have much of a reaction from chelation for the first 11 rounds. I was told to continue and that sometimes it takes that long or longer to see results. I did notice her yeast seemed to flare up terribly during chelation. I managed her yeast with No Phenol enzymes and GSE.
Doing chelation for 3 days on and 4 days off will only work for us for 2 rounds then we take 11 days off so that we can recuperate. The yeast just gets too hard to control if we go any longer.
My daughter has a slight strabismus (crossed eye) and I noticed during chelation her eye will crossed more. Crossed eyes are a symptom of mercury poisoning. I also noticed she is spacier during chelation days. I then noticed that up to a couple of days after chelation she is spacey and out of it.
After the spacey period passes we see results. Sometimes it will be increase in speech, sometimes an increase in eye contact. The changes we have seen vary, but they are definitely there. It is by far the most effective treatment we have tried. These survey results convinced us to pursue chelation http://www.autism.com/treatable/form34qr.htm
These are Andrew Cutler’s Books on chelating. He also has a yahoo group called Autism-Mercury
Hair Test for Mercury and Counting Rules
Date: Monday June 16, 2008Posted in: Chelation, Testing and Test Results
When a person is exposed to mercury, the mercury only stays present in the blood for a short time, but it stays in some other tissues, like brain tissue for a lifetime. When testing for mercury, blood will only show a recent exposure, so how can you test for it?
The way to test for mercury is to not really test for the mercury itself, but you look for what it does in the body. One thing that mercury does is it impairs the bodies ability to transport minerals effectively. So in testing for mercury toxicity one way is to look for that impairment.
Here is how you do that:
First get a hair element test. Doctors Data Inc. can do this test for you and you do not need Doctor’s order for this, you order it yourself. Make sure you order the Hair Elements and not the Hair Toxic Element Exposure Profile. Here is the link http://www.doctorsdata.com/test_info.asp?id=1
Here is the number to order by phone
800.323.2784 (USA & Canada)
0871.218.0052 (United Kingdom)
630.377.8139 (Elsewhere)
When you order the test, they will send you out a kit with instructions and you collect the sample and send it to them with payment, ($109 last time I checked), and they will email and mail the test results to you. If you are a member of the yahoo group Autism-Mercury and you mention it, by phone, then you can get a discount. You have to ask for it or you will not get it.
Sophie’s Hair Test Results (May 2007) Sophie met the rules for Mercury toxicity by having 4 or more “Essential and other Elements” in the red.
When you get the results you apply these counting rules to them. Hair test counting rules
This method was developed by Andrew Cutler Ph.d.
His books are in depth about how to test for mercury, symptoms of mercury poisoning and how to treat it safely.