I'd read a lot on AutismNCD about using ALA as a natural, gentle chelator to get to metals in the brain. I read about some people using it in conjunction with DMSA, others with NCD. I read about the Cutler protocol, which calls for frequent low doses given on a strict schedule every three hours (4 hrs at night) around the clock for three days (then 4 days off). Apparently, the reason behind the strict dosing is that ALA can release metals from the brain, but, if more ALA (or some other chelator?) is not given regularly, those metals might redistribute elsewhere in the body, which we obviously don't want.
I initally started Demi on ALA in conjunction with NCD in early November. Since I'm confident that NCD (she's on 10 drops/3x/day) will mop up anything that ALA breaks loose, I didn't worry about the strict dosing. Plus, I'm not that great with strict dosing anyway. I'm very good about giving supplements at breakfast and supper, but anything in between (that can't be put in a lunch drink) would likely get forgotten.
So, initially, her doses of ALA were anything but regular, typically a couple doses each evening after school and haphazardly on the weekend. Not great, I know. Shame on me. Even so, I thought it helped her a little - nothing dramatic, could have been the rose-colored glasses effect.
Eventually, it got so haphazard that I stopped it completely until I could get a better schedule together. Once Christmas break came around, I decided to stick to a regular schedule for the ALA - during the day, that is. My plan was 5 doses (25mg/dose)/day. I had to set alarms to go off so I'd remember!
So, that's what we've been doing for the last 10 days. I can't really tell yet if it's working. I've read it usually takes 100 rounds (two years) to "work" so I'm not sure what to expect short term.
Monday, December 31, 2007
Thursday, December 27, 2007
Supplements and More Supplements
Although I started slow, I have built up quite a cadre of supplements for Demi. It seems like a lot, but it's really not. I've read of autistic kids getting close to 50 supplements a day. Now, THAT's a lot!
What I give her and why:
1. Natural Cellular Defense from Waiora - liquid zeolite - for general detoxification, including mopping up any toxins/metals knocked loose by other supplements. For continuing maintenance as well as continued improvement. Demi saw gains on NCD alone for quite a while, but then plateaued. I continue to give it so that she gets the most out of the other supplements she takes as well.
2. Fish Oil - EPA/DHA - for general brain function, omega fatty acids. There's a theory of decreased myelination with Kabuki syndrome, which means the sheath around the nerves is not properly formed. I think additional fatty acids could assist in building up that sheath (which would improve neurological function in general), and they certainly won't hurt!
3. Juice Plus - for general wholefood nutritional support of fruits and vegetables. She does pretty well with vegetables, but she usually won't touch fruit.
4. Essential Daily Nutrients from Waiora - general nutritional support plus several beneficial trace minerals, additional wholefood goodness.
5. ALA - Alpha Lipoic Acid - antioxidant which acts as a gentle chelator, supposedly crossing the blood brain barrier. NCD picks up the metals knocked loose by ALA (hopefully). We've been using this on aggressively since she's been out on school break for the last week. It seems to be doing some good. She seemed to pick up more easily on her latest round of sight words - not nearly as much drilling as the last round. Could be my rose-colored glasses again...
6. ProCulture Gold probiotic - for improved intestinal flora and digestive support
7. SaccB - for fighting yeast, which sometimes increases when getting rid of metals
8. ThreeLac - for fighting yeast
9. GABA - for calming and slowing the brain down. Kind of the opposite of glutathione (which did not test well for Demi). Just started this one today - we'll see how it goes.
10. Zinc - Good to supplements with NCD, plus she tested at 100% for it, which supposedly means that her body needs it.
11. Digestive Enzymes - for digestive support
12. Homeopathic Insecticides - to get rid of insecticide toxins
13. L. Acidophillus - I haven't started this yet, but I have it on hand in case she has to get another round of antibiotics (which I try to avoid). It helps restore the good bacteria in the gut to maintain digestive health.
I think that's all. That's enough for me to keep track of right now!
What I give her and why:
1. Natural Cellular Defense from Waiora - liquid zeolite - for general detoxification, including mopping up any toxins/metals knocked loose by other supplements. For continuing maintenance as well as continued improvement. Demi saw gains on NCD alone for quite a while, but then plateaued. I continue to give it so that she gets the most out of the other supplements she takes as well.
2. Fish Oil - EPA/DHA - for general brain function, omega fatty acids. There's a theory of decreased myelination with Kabuki syndrome, which means the sheath around the nerves is not properly formed. I think additional fatty acids could assist in building up that sheath (which would improve neurological function in general), and they certainly won't hurt!
3. Juice Plus - for general wholefood nutritional support of fruits and vegetables. She does pretty well with vegetables, but she usually won't touch fruit.
4. Essential Daily Nutrients from Waiora - general nutritional support plus several beneficial trace minerals, additional wholefood goodness.
5. ALA - Alpha Lipoic Acid - antioxidant which acts as a gentle chelator, supposedly crossing the blood brain barrier. NCD picks up the metals knocked loose by ALA (hopefully). We've been using this on aggressively since she's been out on school break for the last week. It seems to be doing some good. She seemed to pick up more easily on her latest round of sight words - not nearly as much drilling as the last round. Could be my rose-colored glasses again...
6. ProCulture Gold probiotic - for improved intestinal flora and digestive support
7. SaccB - for fighting yeast, which sometimes increases when getting rid of metals
8. ThreeLac - for fighting yeast
9. GABA - for calming and slowing the brain down. Kind of the opposite of glutathione (which did not test well for Demi). Just started this one today - we'll see how it goes.
10. Zinc - Good to supplements with NCD, plus she tested at 100% for it, which supposedly means that her body needs it.
11. Digestive Enzymes - for digestive support
12. Homeopathic Insecticides - to get rid of insecticide toxins
13. L. Acidophillus - I haven't started this yet, but I have it on hand in case she has to get another round of antibiotics (which I try to avoid). It helps restore the good bacteria in the gut to maintain digestive health.
I think that's all. That's enough for me to keep track of right now!
Alternative Medicine
Close to a month ago, I took Demi to a local alternative health practitioner. A super nice lady. She explained everything about the machine she was using and answered all my questions. I had no misconceptions of what she might be able to do.
I went because I'm open to alternative methods of attaining health. I don't believe conventional medicine knows everything about the energy of life within each human being.
The testing revealed some interesting possibilities that might be going within Demi's various systems. Over the course of the testing, she "treated" Demi periodically with the machine, a process similar to "reverse biofeedback." Perhaps it sounds hokey, but, like I said, I'm open to the possibilities.
Among other things, the testing revealed insecticides contributing to her toxic load. It did not show specific heavy metal toxicity. It also revealed consistent stomach problems which can often contribute to imbalances in other organs. The insecticides and stomach issues showed up as part of every organ analysis, so I elected to start a homeopathic remedy for the insecticides and digestive enzymes for the stomach issues.
Interestingly, the test also hinted at possible blood sugar regulation issues, something she has never shown signs of. She has even had a normal fasting blood sugar analysis. The test indicated that the pancreas might be under stress.
That's interesting to me because kids with Kabuki sometimes have blood sugar issues, largely masked until a crisis arises. One child even had undiagnosed hypoglycemia which subsequently led to her death following a routine surgery.
Just recently, I learned that another Kabuki kid (18yo, I think) was recently diagnosed with Type I Diabetes, where the pancreas shuts down insulin production, possibly caused by a virus. Could this test be indicating the very beginning of a problem where I could head off the onset of diabetes? That's a stretch, but a possibility.
Although the treatment could have positively impacted Demi's learning abilities and attention span, I have to say that I have not seen that (even through my rose-colored glasses). But I still believe the supplements we're giving her are helping, although very slowly.
The treatment did seem to coincide with a sudden onset of fatigue, fever, and general illness. Prior to the test, Demi was already suffering from a cold. Following the treatment, she became exceptionally tired and missed two days of school - lots of congestion and fever. I took her to the Dr during that to make sure her ears weren't infected again.
Even though the machine's treatment did not seem to help Demi's main issues, it seemed to have some very interesting insight into Demi's holistic health. The health practitioner was very sincere and involved during the entire 2.5+hr appt. I value her advice on supplements
I'll be sure to post with any additional developments in this area.
I went because I'm open to alternative methods of attaining health. I don't believe conventional medicine knows everything about the energy of life within each human being.
The testing revealed some interesting possibilities that might be going within Demi's various systems. Over the course of the testing, she "treated" Demi periodically with the machine, a process similar to "reverse biofeedback." Perhaps it sounds hokey, but, like I said, I'm open to the possibilities.
Among other things, the testing revealed insecticides contributing to her toxic load. It did not show specific heavy metal toxicity. It also revealed consistent stomach problems which can often contribute to imbalances in other organs. The insecticides and stomach issues showed up as part of every organ analysis, so I elected to start a homeopathic remedy for the insecticides and digestive enzymes for the stomach issues.
Interestingly, the test also hinted at possible blood sugar regulation issues, something she has never shown signs of. She has even had a normal fasting blood sugar analysis. The test indicated that the pancreas might be under stress.
That's interesting to me because kids with Kabuki sometimes have blood sugar issues, largely masked until a crisis arises. One child even had undiagnosed hypoglycemia which subsequently led to her death following a routine surgery.
Just recently, I learned that another Kabuki kid (18yo, I think) was recently diagnosed with Type I Diabetes, where the pancreas shuts down insulin production, possibly caused by a virus. Could this test be indicating the very beginning of a problem where I could head off the onset of diabetes? That's a stretch, but a possibility.
Although the treatment could have positively impacted Demi's learning abilities and attention span, I have to say that I have not seen that (even through my rose-colored glasses). But I still believe the supplements we're giving her are helping, although very slowly.
The treatment did seem to coincide with a sudden onset of fatigue, fever, and general illness. Prior to the test, Demi was already suffering from a cold. Following the treatment, she became exceptionally tired and missed two days of school - lots of congestion and fever. I took her to the Dr during that to make sure her ears weren't infected again.
Even though the machine's treatment did not seem to help Demi's main issues, it seemed to have some very interesting insight into Demi's holistic health. The health practitioner was very sincere and involved during the entire 2.5+hr appt. I value her advice on supplements
I'll be sure to post with any additional developments in this area.
Continuing Ear Saga
After a week, the infection and perforation seemed to be resolved. I scheduled appts with her audiologist and ENT just to be absolutely sure everything was ok -- these were a few weeks out so we'd know whether the eardrum had healed completely or not. Her hearing seemed significantly affected right after the perforation. Since this was her "good" ear, I hoped no permanent damage had been done.
Early December, Demi saw the audiologist who verified her hearing was "mostly" back to normal. She attributed the mild decrease to a small amount of fluid still in the car. Mid-December, we went to the ENT for a final check. The fluid was worse, but no infection. Because of the worsened fluid, her hearing was pretty bad in that ear.
We have to see someone else in the future to verify the fluid has resolved. I'm looking for a natural decongestant to avoid using prescription or OTC decongestants.
Early December, Demi saw the audiologist who verified her hearing was "mostly" back to normal. She attributed the mild decrease to a small amount of fluid still in the car. Mid-December, we went to the ENT for a final check. The fluid was worse, but no infection. Because of the worsened fluid, her hearing was pretty bad in that ear.
We have to see someone else in the future to verify the fluid has resolved. I'm looking for a natural decongestant to avoid using prescription or OTC decongestants.
Beautiful Moment
I spend so much time trying to "fix" Demi (to HELP her!) that I often lose sight of what a beautiful child she is, regardless of her abilities.
The other night, DH and I were watching a movie. Dana was already in bed (voluntarily!). Demi was flitting around the house, talking to herself, usually replaying some sort of fictional dialog, usually related to some recent experience. She seemed totally oblivious to us as she roamed from the living room to the kitchen, dining room, and back to the living room, playing the continuous dialog.
DH muted the TV and we focused on Demi, just watching her. She didn't stop her dialog. She seemed aware that we were watching her, but it didn't bother her. I listened to her dialog and thought it was quite creative and cute. True, a "typical" 6yo would not behave that way, but watching her brought a smile to my face because she was just being Demi. Viewed without the "expectation" filter, she was just enjoying herself, relating an interesting story. Very cute.
She's kind, friendly, happy, funny, cooperative, trusting, without a trace of viciousness or guile or ill will towards anyone, including her sister (despite some occasional underhandedness on the part of her sister). A beautiful person, inside and out. I'm so blessed to be her mom.
The other night, DH and I were watching a movie. Dana was already in bed (voluntarily!). Demi was flitting around the house, talking to herself, usually replaying some sort of fictional dialog, usually related to some recent experience. She seemed totally oblivious to us as she roamed from the living room to the kitchen, dining room, and back to the living room, playing the continuous dialog.
DH muted the TV and we focused on Demi, just watching her. She didn't stop her dialog. She seemed aware that we were watching her, but it didn't bother her. I listened to her dialog and thought it was quite creative and cute. True, a "typical" 6yo would not behave that way, but watching her brought a smile to my face because she was just being Demi. Viewed without the "expectation" filter, she was just enjoying herself, relating an interesting story. Very cute.
She's kind, friendly, happy, funny, cooperative, trusting, without a trace of viciousness or guile or ill will towards anyone, including her sister (despite some occasional underhandedness on the part of her sister). A beautiful person, inside and out. I'm so blessed to be her mom.
Sunday, December 23, 2007
Ear Update
Monday, after Demi's eardrum ruptured on Sunday, I took her in to the doctor. There was so much fluid in her ear canal that he couldn't even see the eardrum to verify any holes. Because of the amount of drainage, he assumed it had perforated and prescribed an oral antibiotic as well as a topical antibiotic for the ear canal (which was the primary source of pain after the perforation).
I accepted the oral antibiotics as a necessity, but I bumped up her probiotics to counter the damage to good intestinal bacteria. She was already battling yeast; I hated to give it an even strong foothold.
I accepted the oral antibiotics as a necessity, but I bumped up her probiotics to counter the damage to good intestinal bacteria. She was already battling yeast; I hated to give it an even strong foothold.
Ear Problems
Various things going on with Demi that I need to update. Following some nasal congestion in late October, Demi's "good" eardrum ruptured. Apparently infected, but the only warning I had was "My ear hurts" once on Thursday evening.
Friday afternoon, she declared she didn't feel good and wanted to go to bed, but no ear complaints.
Saturday morning, a slight trickle of amber fluid from her ear. I had put some drops in her ear on Thursday; I assumed perhaps they'd melted some wax and it was coming out. Lots more complaining Saturday; enough to prompt me to call the on-call doctor, who agreed we should wait and see.
By Sunday morning, amber fluid had matted her hair to the side of her head and crusted her cheek and neck. Not much doubt in my mind that it had ruptured. Poor baby!
Friday afternoon, she declared she didn't feel good and wanted to go to bed, but no ear complaints.
Saturday morning, a slight trickle of amber fluid from her ear. I had put some drops in her ear on Thursday; I assumed perhaps they'd melted some wax and it was coming out. Lots more complaining Saturday; enough to prompt me to call the on-call doctor, who agreed we should wait and see.
By Sunday morning, amber fluid had matted her hair to the side of her head and crusted her cheek and neck. Not much doubt in my mind that it had ruptured. Poor baby!
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