Pfeiffer outreach in AUSTRALIA on April 1

[Claire]

Hi Caz, Marina, Ausclare,

 

I spoke with Dr. Walsh of Pfeiffer at a seminar tonight, and he mentioned that Pfeiffer is going to Sidney Australia on April 1. He and another doctor will be there and they will simultaneously meet with patients and train a number of doctors from Australia at the same time.

 

Pfeiffer's testing focus is:

Pyroluria

Zinc deficiencies and zinc/copper ratios

Some liver function testing (and some other blood testing like hemoglobins)

Methylation issues

Hair testing for metals and minerals (yet even he discussed the high false negatives tonight)

 

They believe in yeast as a factor and say Omega 3's are important, but they didn't test for this. I may have forgotten other tests.

 

In the US, it costs $1200 all inclusive (doctor visit, testing and follow-up). You can call the clinic if you happen to live near Sydney (I know Australia is a big country) and are interested.

 

Most importantly, if they train these doctors, there should be other outreaches in the future in other parts of Australia. I don't know their website, but I am sure you can do a google search for more.

 

***********

TO ALL

He brought up Pfeiffer's low % success with Tourette's', but then said he had greater success with other tic syndromes. His research on Tourettes is very old and it would be good to have it updated. He said they have an 80% success rate with ADHD (as judged by parents) and a 75% success rate with behavioral issues--but really the success rate for behavioral issues is higher for those who actually follow the program (90%), but given the behavioral issues, they have a lot of non-compliance.

 

Also, Manganese is still important if you supplement zinc, even with tic syndromes. He likes 1-2 mg/day of manganese, assuming you don't already have too much.

 

He also said that you must customize a supplement program because people have too much of somethings and not enough of others and it is very very individual. Thus they run tests--and even then must observe closely and correct. I am sure most here know how strongly I agree with this.

 

Virtually everything else he said I had already read on his website.

**************

 

I don't know how often you 3 read the board, I hope this post isn't buried by the time you check in!

 

Claire

[marina]

Hi Claire

 

So lovely to hear from you again Claire.

I won't be able to get to Sydney, but will look out to see if the testing comes to Melbourne.

At this stage, I'm more interested for my eldest, who today had blood tests for IgE food testing & other. He has started a vitamin trial, but after 4 days I withdrew the Efalex as it obviousloy had a grumpy negative effect.

This effect to Efalex often reported by Failsafe members, and is thought to be a reaction to amines from the fish oil or salycilates. I know he reacts to both.

 

Matt I'm glad to say is at the moment almost tic free (some eye tics), but the results are so confusing!

As you know, lights and screens were a big trigger, however for the last 5 days we have again trialed screens, and no symptoms.

My only thought is that there is an interactive connection with foods, possibly milk but I'm not sure.

Obviously I'm delighted that he is better, but at odds to pinpoint what it going on.

Last week he had a obvious reaction to spray deodorant, and to foods eaten in a Home Economics class when he sampled all the home cooked foods brought in by the class.

 

At a visit to the Royal Childrens Hospital last Wednesday, the doctor ordered IgE and strep blood tests. I was so relieved that she took it seriously and actually complimented my (OUR) efforts. Her thoughts are that foods act as an additional stress on the body, and when it is totally overloaded, the tics appear. She however thought that stress and feeling anxious were the primary triggers, and that other factors (food & screens add to this stress level).

 

Hope that your back posting Claire as we have all missed you.

 

Ausclaire & Caz

I would love to hear from you both.

 

Marina

[Caz]

Hi guys

 

Thats amazing news on Pfieffer coming to Aus - Perth is way too far from Sydney to consider it, but I will email them to find if they are training anyone from Perth.

 

Thanks for the info direct from Bill Walsh. I wish they were able to do more research into TS. I guess it is a money thing.

 

To Marina

 

Glad Matt is doing better. Its such a long process of trial and error. We still have good weeks and then problem weeks. Now my boy is at highschool, I feel I have less control over the food. I only have healthy stuff in the house, but going to friends houses, and other activities, and school stuff makes it hard. I bet you find this with your boys. I can't remember if your eldest had tics, or other issues. For us, supplemnets have helped all the attention issues, but the tics are certainly harder to deal with.

 

Hope your testing yields some answers..

 

We recently had the heavy metals challenge test, and found that Josh has lots of mercury and lead. Our next step is to detoxify these. Next Dr appt is on 31st, so hopefully that will point us in the right direction. I know for my kid, diet plays a part, but for him the salicylates and amines were not the main issues, it was more the ability to break foods down, and malabsorbtion that were the biggest problem, so we are still working on all this. I get sick of the sight of the kitchen at times, having to prepare most foods from scratch. How about you guys?

[Ausclare]

Righty oh there guys, I just jumped on at work to see what was happening and I came across this.

Hope you all had a great Easter, without to many tics!

We specifically asked for no chocolate for the children, and suggested books and things, but the relatives just can't help themselves, they only bought bags of eggs with about 30 M&M egges each! Then of course there were the usual tears and tantrums and that was just from me!

 

Thanks Claire, for that info, it is good to see you back.

 

Caz and Marina,

 

I have to start from scratch with the diet again, my middle son was today diagnosed with asthma, he's had a cough since December, and now has a chest infection with it.

We are going to be doing some serious tic and allergy busting!

 

I was wondering if you know of any adverse reactions to ventolin cfc free puffers, I remember seeing some failsafe kids with asthma exacerbated the symptoms because of the preservatives in the puffers. Any info would be much appreciated.

 

In the last 3 months I've moved house, started a new business, my husband is back at work and I no longer homeschool.

My older son Connor still tics a lot, but this is due to the fact that he doesn't like his teacher and she stresses him out.

We have come to the conclusion that although he has all the info for reading and writing in his head, he starts to tic and stutter so badly that we need to find other ways for him to do his schoolwork. We are trying to use as many visual and hands on methods as possible. This reduces his stress levels and his tics, unfortunately his teacher doesn't really approve, although she has agreed to reduce his reading homework.

 

I was wondering if maybe we could catch up in the school holidays.

I check my email everyday.

 

Hope all your kidlets are well and behaving appropriately.

 

LOL

clare

[Guest Guest]

Hi Ausclaire

 

Only just saw your earlier post, so sorry for the delay.

So nice to hear from you. You sure know how to pack in a lot in the space of a few short months.

 

Although I'm working over the school holidays, and trying very hard to fit into my kids very busy social life (taxi driver!) it would be lovely to catch up. Pity Caz is so far away.

I've tried to email you, but the work computer has me down as a guest, so will try tonight, or perhaps you can email.

 

Caz,

How are things going?

 

Marina