List of Tests to uncover issues that can impact tics

[Chemar]

bumping up for momto3ts and Kelly

[Claire]

Got this year's Spectracell test back. His antioxidants levels are ~50%...about the same as last year. But pretty cool cuz we don't supplement the cysteine and ala anymore. 50% is average but they want 75%. He is only deficient in pantothenic acid and co-Q 10...and just barely, only 1 point below 'normal' for each. But it says that pantothenic acid deficiencies can cause co-Q 10 deficiency. Also, the pant. acid deficiency can cause fainting, and he actually fainted a few times this summer, plus was light-headed a ton...more than normal, even with drinking lots of water, so maybe we found the cause.

 

I only had a folate deficiency...an old deficiency that apparently returned...but my supplementation is less than the daily requirement, so not too concerning. I just added a light B-complex to my vitamin mix. My antioxidants were ~70% which is great. I am excited cuz it had been in the 30's the last two times, and the vitamin E deficiency was not corrected at the time with supplementation. I think that getting my amalgams out made a huge difference for me.

 

Finally, I redid my own spit test for yeast, and still have the stringers, but less than before...improved.

 

So this is good news overall.

 

I sent in his and my mercury urine tests this week...only $2.50 to ship to France...only 1st class mail needed. At his October physical, I will try to talk the doctor into doing a Great Plains OAT test. Same with my doctor at my fall physical...

 

I looked at the Candida clear by Now that Chemar recommended, but it has oregano oil, and though that is good for yeast, my son says the taste is too strong for him, bummer. I will try to get him to do the spit test this weekend...we will see.

 

Claire

[Chemar]

Hi Claire

 

re the oregano oil in Candida Clear by NOW, not only is an excellent yeast buster, it is also superior general anti-parasitic remedy, and gets rid of worms and all other nasty critters that try to set up home inside of us

[Claire]

Chemar,

 

I didn't know oregano did those other things too, thanks. I wish he would take it, but he completely refused due to the strong taste. At least he is finally doing the dermal glutathione (the smell bothered him).

 

I am thinking of getting Candida Clear for myself, and sticking it in with his pills once more just to see what he does. I KNOW he will notice though.

 

Claire

[Chemar]

bumping up for hudsonsmom and others who need this info

[Claire]

Bumped for Ilovejadin.

[kim]

Bumping for Michele

[michele]

Bumping for Michele

 

Thank you for the test information but this is overwhelming. How would I know what to order or how to administer or read them. These sound very scientific. I have no medical background. Can't the Dr. order these? Should I have him test mercury and food allergies? Do immunologist know how to test for tics ocd ADHD behaviors? What are typical PANDAS or PITANDS tests ?

Michele

[Chemar]

Hi Michele...hoping you got these answers sorted from the discussions recently, and also bumping this thread for all newcomers.

[michele]

Chemar,

What I wonder next is after they run all theses labs some for the second time. See my posting on DAN Dr. for the list they are running. Then are the test results explained and used for the treatment and not just filed away. I probably have a better chance of getting some explanation with the DAN Dr. However, the immunologist, and neurologist and gastro Dr. never discussed the results. We started the Actos and I orderd the AFPPeptizide, and the Folinic Acid. However it is scary giving my kid allthe supplements and drugs. I am continuing the Pen. V I don't want to mess him up worse by doing the wrong thing.What are some important staples for the GFCF diet? Thanks for your input.

Michele

[Chemar]

Hi Michele

 

a good doctor should go over and explain test results to you in detail and then recommend appropriate plan of treatment

 

I would think the primary issue is first to bring the strep under control (did you discuss azithromycin instead of penicillin with the doctor? especially as it seems to also have immuno modulating action)

 

While controlling the strep, the restoration of his GIT and the modulation of his immune system is so important.

 

dont forget the probiotic must be given at least 3 hours BEFORE OR AFTER the antibiotic as otherwise the anti kills the pro

[kim]

Michele,

 

However, the immunologist, and neurologist and gastro Dr. never discussed the results.

One thing that I have learned is really helpful, is to ask for copies of everything from every Dr. Don't forget, this information belongs to you. You are paying for it, and they are working for you. Don't be intimidated! I have never gotten any flack for asking for copies of all reports (after I learned you can do this).

I'm kind of surprised that the DAN didn't want copies of those reports?

 

 

What are some important staples for the GFCF diet

This forum may be helpful

 

http://health.groups.yahoo.com/group/GFCFKids/

 

However it is scary giving my kid all the supplements and drugs

 

Did your DAN tell you to introduce things individually and go slow, to see if there are any negative reactions?

 

When I started enzymes with my youngest son, he had some pretty severe stomach pain. It was the only time, since starting supplements, that I felt a bit scared.

I knew pain was a possibility and it could actually be a good sign, that the enzymes were doing their job. Probably there was gut damage that needed healing but it's scarey non the less. If that would have happened, and I had introduced a bunch of new things at once, it would have been much more frightening.

 

I also wanted to include a tid bit on Actos. I have read of some, who thought it was having some positive results, then it seemed like there were some negatives and some stopped using it. These were parents on an Autism forum.

 

If there is one thing that I'm all for, it's informed choice! I want to know the pros and cons (no matter how small the "cons" may be perceived to be) so, I thought I would include this. You can search Actos+dangers for more info. This was just something that I pulled up quickly.

 

http://www.worstpills.org/results.cfm?drug_id=796

[michele]

Kim,

 

I did forward all of Andrew's records to the DAN Dr. De Mio. He did discuss some of the Dr.s and their reports. The DAN Dr. did not go over much about the supplements or ACTOS. He just said you can expect some illness with the ACTOS. He said the body will not like it at first and you can get sick. Each supplement he suggested came with a worksheet of their purpose and benefits or side effects. Also he has a nurse you can call and talk to or have an appointment with. Dr. Demio does have an autistic son. He did talk alot about the fight going on in Andrew's brain and the autoimmune attack on the good brain guys. I am scared because his tic has been going on for three weeks and his behaviors are worse. Today he was very emotional and moody. I don't know why if it is the illness, the brain being affected or the stress of the Dr. visit and my attempts to go Gluten free on his diet. I will proceed with caution. I have been doing alot of research. As for the Actos I am worried about the side effects . Dr. Demio has talked on its use on the autism1 radio site. I want this autoimmune attack on my sons brain to get under control. He is a very smart and funny little boy but after these episodes he acts like a crazy, misbehaved hyper nervous wreck. I did stop the fish oils today. I wonder if it may make a difference in the tics. Also how does a parent of a PANDAS kid handle discipline? Do you stay on them for their every misbehavior? During an episode he is pretty defiant all day long. He blows up at the drop of a hat. He was on the step over and over today. If you let them get away with the behaviors then they may think it is okay. But it is exhausting to deal with it all day and correct them when they fight you on everything. What is the consensus on these autoimmune brain disorders and discipline? Are the kids in control of their behaviors when their brain is being attacked? I told the Dr. my six month old is a walk in the park compared to a day with Andrew. He said it takes three adults to manage Andrew. He was full of energy during the two hour visit. Thanks for the links.

 

Michele

[michele]

Chemar,

 

I did call today and left a message about the Azithromiacin versus the penicillin with the DAN Dr. Also asked him abot the increase in the compulsion (face, hand tic) I noticed the Nordic Natural Kids we have been using has higher DHA then EPA and Dee has said it should be 2:1. Maybe this is causing more tics? It alsohas 120 mg of Omega 9 in it. I was reading the book by Judith Rappaport on The Boy Who Couldn't Stop Washing and she has a case of an autoimmune infection attacking the basal ganglia I don't even know if she uses the word PANDAS but discusses Rheumatic Fever and Syndoms Chorea and the boy sounded like Andrew to a tee. The DAN Dr. also has an oxygen bed room of some sort. Has anyone ever tried these sorts of treatments? I hope today will be a better day. Yesterday was very hard with Andrew. It is like a foreigner has taken over his mind. Crying and fighting over everything.

 

Michele

[trubiano]

My 7 year old son only tics the end of July through the first of October. Should we see a Allergist again? We did the scratch test 3 years ago and he tested positive for grass and rag weed. They gave him Zyrtec and the tics started that next year. Any thoughts on what it could be and who we should see?