Jump to content
ACN Latitudes Forums

new and amazed


Recommended Posts

:P I am new to this site and am amazed at what I have found. I have searched many a late night trying to find something to help my 14 year old daughter. She has a head tic which nods like she is agreeing with you. She also has started an eye blink. Her neurologist says that the only thing we can do is wait it out or try the meds. We briefly tried them with no help and almost complete sedation. We have been doing nothing for a year. Her pedi tested for many things including yeast and strep, but found nothing. She has told me many times that screens make her tic worse, and tries to avoid them. When I saw that on your web site as a big stimulant, I knew we were in the right place. I think I will try the bonnie vitamins and see what happens. The only time she has been tic free in two years was when I picked her up from camp last summer. She was only gone a week, but it was amazing.It was back within a day of being with us. Maybe the stress of being with younger sibling? She is also on a gluten free diet, as she has been diganosed with gluten senstivity. Her youngest sister has full blown celiac disease.

Her 12 year old sister has ADHD. Any big advice? Should I try the vitamins and see what happens first? Should I look into all the metal testing and stuff? Should I jump into the elimintion diet? Thanks!

Link to comment
Share on other sites

Money is always an issue in life. If you have the extra money I would suggest having your children tested. Claire and Chemar are the experts with this and if I was you I would give them a private e-mail for information. I have more then once in the past. Once you have the test results you would know what plan of action to take and where not to waste your money as well.

 

Meanwhile these are the tests that I started out with: The FIA Comprehensive Profile 5000, and the Spectrox Total Antioxidant Function, the Food Anitbody Assessment IGE & IgG, as well as prior individual tests for PANDAS and Gluten.

 

Currently we have added chelatin with DMPS and DMSA as well as using gluthione lotion 2x a day. But have had a toxic metal test done first.

Link to comment
Share on other sites

Susanmom,

 

I'm so glad you found this site. I was amazed too, and have learned a lot. Read everything you can here, and you will start to become fimiliar with what is discussed and can start to figure out the best course of action. Ask questions about anything, everyone is here to share info. and help each other.

That head nod seems to be a stubborn tic! Many of our children seem to have a difficult time with it. I find the stress level goes up for my boys when they are home together. I really wondered if it was something in our house. I used to tell them they were allergic alright, to each other. They love each other and are really pretty close, but they can get on each others nerves which adds to the tickiness at times.

 

Andy, I'm wondering if you can tell me how long you have to be off vit/supp before having the FIA 5000. I have read from 3 days to two weeks for various tests. Also, did you use Immuno for the food sensitivity testing?

 

Kim

Link to comment
Share on other sites

Sue's mom. I re-read your post and saw the eye tic. We have found that Taurine helps alot with not suppressing this but with feeding the body for the need for it. Henceforth a deep reduction of eye tics. We use the Solar brand found in stores for it is free of sugar, corn, yeast, wheat, soy, and dairy products. My son has food allergies or an issue with all of the above. Taurine is an amino acid and as we know from high school science, Amino acids are the building blocks of life. Our son is currently six years of age and he takes 500 mg a day.

 

Kim. we waited 3 days before we had the first series of tests done and 5 days the second time we tested with the The FIA Comprehensive Profile 5000 and the Spectrox Total Antioxidant Function. We have it done once a year for the past two years. Why 5 days the second time. Because the tests are not cheap and we wanted to be safe then sorry. Especially since we had added alot more supplements since the time before the first test. As for the food sensitivity testing

we only had that done once and it was with our nuerologist. The test was done by Great Smokies Diagnostic Lab and it was called the Food Antibody Assessment IgE & IgG. Our current DAN doctor feels there is no need to do a second test for he thinks that once we remove the heavy metals out of my son's body, the digestive track will heal and most if not all the food allergies will be gone. So we do the detox and in December, my son's seventh birthday, we will reintroduce rice as a rotation food item and see how that goes and take it from there. Enzymes may be added to assist with the others.

Link to comment
Share on other sites

Hi,

 

My son also did FIA 5000 test. We stopped supplements for 3 days before the test. We didn’t run the food allergy test. Our DAN doctor said the same thing as Andy’s. As my son has heavy metals, he feels that once the metals are removed, the allergy most likely will be gone.

Link to comment
Share on other sites

Here is another basic question. What is an lcd screen? My daughter is going to a private high school next year that requires every child have a lap top which they use in about half of their classes. If I need to make any special requests, I had better do it soon. Thanks. Susanmom

Link to comment
Share on other sites

Hi,

 

"LCD" is short for liquid crystal display, a type of display used in digital watches and many portable computers. LCD displays utilize two sheets of polarizing material with a liquid crystal solution between them. If your daughter will be using laptop, then it's LCD already.

Link to comment
Share on other sites

I made an appointment today with a Dr I found through the aaem from this web site. I am excited to be going somewhere, but still feel so uneducated. Are the heavy metals a problem a lot of kids with tics have? Is this a high percentage problem and do most kids who detox find a lot of relief from thier tics as a result? I went ahead an bought bonnies vitamins, but now I think I ought to wait until I go to the dr before I start them. Everything seems so out there, and to a 14 year old girl, who doesn't want to be different, I need to pick wisely what approach to take. The three things that seem the most relevent to her is possible yeast (I need to redo the spit test), vitamins, and heavy metals. She is already gluten free and has been tested for strep. Is there a big red flag I am missing? Thanks, Susanmom

Link to comment
Share on other sites

Susanmom, we feel that the elimination diet, supplements of amino acids, anti- oxyens, vitamins and minerals, epsolm salt baths, garlic , were all needed steps. However for us the missing piece was the chelatin. Some of the measures above were natural chelation but it didn't seem to be enough. Good luck with you DAN Dr. visit and try to go in prepared so you have an understanding of what is being discussed and what you wish to discuss. It helps if two people could go with one asking the questions and the other taking notes of everything that is being said.

Once again, good luck!

Link to comment
Share on other sites

Hi Susanmom;

 

Just a question, have you tested her urine to indicate what her ph level is? It is a simple litmus paper test done with first mornings urine. To acidic and the yeast issue is extremely hard to control. Getting the your body to become alkaline is extremely important to fight off yeast. Good luck and keep posting.

 

Be Well,

Marie

Link to comment
Share on other sites

Hi Susanmom

 

just wanted to say "hello" and congrats on all you are doing to educate yourself to be able to help your child.

 

Hoping your DAN doctor is able to help you work thru the many areas that need checking and that the treatments he recommends will have very beneficial results.

 

all the best

Cheri

Link to comment
Share on other sites

Thanks for your responses. Can you tell me more about chelation? What are the most common treatments for this and what do you think is the best and least invasive? Also, how reliable are the metal tests? The tests the Dr are going to do are a BTA (biological terrain assesment) and a CRT (computerized Regulation Thermography). Do you know anything about these tests? Do you know what they would be looking for and the possible treatments they will suggest? I know this is a huge question, but I am still trying to piece it all together. Is there a good book that summerizes what I am talking about? Thanks for your help!

 

Also, I was looking on another forum from the spots strian and saw the gluten, yeast connection. She went gluten free and started the tics on the same day, the day she had an EEG for her "foggy spells" that she could not shake. As soon as she went GF, her foggy spells dissappeared, but the tic began. It is indeed a puzzle. Did I say she has mild learning disabilities and her younger sister (also GF) has ADHD? Curious. Susanmom

Link to comment
Share on other sites

Susanmom, I have borrowed a post from a person from another website. She does not believe in fast or intrusive chelating. I thought that this approach might fit you. Please remember that this is from a parent and not a doctor.

 

"Autism is considered by DAN doctors to be a metabolic processing disorder where their bodies cannot properly regulate metals. Our kids have toxic levels of many different metals including mercury, lead, aluminum, copper, cadmium, tin, bismuth, arsenic, antimony, nickel, and Thalium while being deficient in others such as zinc, manganese, calcium and magnesium. Neurotransmitters cannot function properly when the ratio of zinc/copper is not at optimal levels. In order for the body to heal, the toxic level of metals need to be chelated (taken out of the body and brain) and other metals that are deficient need to be supplemented. There are many ways to chelate heavy metals out of the body. Years ago, the medical community thought of chelation as a dangerous therapy because the IV chelations used would pull too much toxic metals out at once overloading the kidneys and the liver. Some patients ended up with liver/kidney problems due to the stress on their organs. Chelation therapy has come a long way. Our kids do not use the IV chelations as a proper way to chelate their metal toxicity. The best way to chelate is slow and steady, just as a healthy body would.

There are two common prescription chelators, TD-DMPS and DMSA. TD-DMPS is a prescription transdermal chelator that is fairly new and has had very positive results for many patients. You can read more about it at http://www.drhirani.com/TD-DMPS-1.pdf.

DMSA is a sulphur based chelator that is in pill form and is best used with alpha lipoic acid. It is considered one of the safest chelators available by prescription and is known to cross the blood brain barrier. It is also available without a prescription at www.vrp.com. But it is highly suggested to do the chelation with an experienced DAN doctor to avoid depleting certain essential minerals.

There are also some natural chelators that are available without prescription that do not take away essential minerals. NDF PLUS and NDF are available at www.bioray2000.com. You can read information and the studies at www.healthydetox.org. NDF and chlorella, one of NDF's ingredients bind to both chlorine and Dioxin. Clinical evidence also indicates that the NDF binds to neurotoxins, mycotoxins, exotoxins, petrochemicals, pesticide residue, certain pharmaceutical drugs, and plaque. PCA-RX by Maxim is available at www.awakennutrition.com, along with a few other products parents have used to assist in the metal detox. Both the Bioray and Maxim products are said to cross the blood brain barrier. Metal Free is another optional chelator that has been shown to dump large amounts of metals out of the body. It can be found at www.metal-free.com. If you decide to use the non prescription chelators, remember to start off slow to avoid the large dumping of metals in the beginning and increase as soon as your child can tolerate".

 

There is extensive information of chelating from the defeat autism now website.

Interesting enough there are alot of DAN doctors and parents now who are starting to think that ADD, LD, TS are related to the same issues as autism due to heavy metal poisoning.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...