Pfeiffer visit feedback

[Claire]

I have mixed feelings about the Pfeiffer visit. The nurse commented: we don't treat tics because the treatments don't work. The nurse commented food sensitivities weren't a true allergy. This sounds like a mainstream medicine to me. They didn't test for Omega 3/6's but went by symptoms.

 

The doctor disagreed with Dr. Walsh's comments that MT promotion could eliminate food sensitivities, e.g. to gluten/casein. That it was the difference between theory and practice! This was my biggest disappointment as it was the major reason for my visit. I can't see my pre-teen son restricting his diet 'forever', nor do I want him to have to. Back to treating the yeast and hoping this resolves the food sensitivities, as Heather has had luck with.

 

For $1200, we only got 10 minutes with the actual doctor, who basically look for 3-4 allergy evidence with my son--his nails (white spots for zinc deficiency, a tongue check for severe yeast, and a bumpy skin test on the upper arm--he passed all three). I had to ask for 5 more minutes to ask my own questions of the doctor. She was nice though--and in all fairness, she will spend time reviewing the charts when the tests come back and making a treatment recommendation.

 

I thought they were at the cutting edge of the DAN doctors. I now feel that they more overlap the DAN/EM/naturopaths. ie They know more about some things (pyroluria, methylation, mt promotion) and less about others (food sensitivities and tic syndromes). I don't think my experience is unusual in that other hear have echoed their comments on not treating tics.

 

I am still happy I went though--I want the histamine test! Plus I want to see what their hair test shows for mercury (we did a blood test only), what their blood serum test shows for zinc and other vitamins--and compare to what we have seen. I like Spectracell a lot, but it is nice to compare with other tests. Odd that they only do a hair test for mercury, when they then discount that it may not be accurate.

 

One thing I like is that Pfeiffer compounds their supplements vitamins. I want to find a compounding pharmacy! This will minimize the pills my son takes--or so I hope. They say it should. The trade-off is less ability to adjust. I trade off dosages a lot to 'test' things.

 

I feel Pfeiffer's approach is more of a formulaic approach. The DAN doctor had much more customized testing. Our DAN doctor spent his own time learning everything and explaining everything. Pfeiffer had a sheet with yes and no answers (what about 'sometimes/frequently/rarely)? Or 'used to'. Very little is a simple yes or no. But I need to see what happens when the test results come back. Maybe it is just the data collection that is formulaic--done by a nurse who couldn't answer questions. So I will reserve final judgement until then. If anyone does this, please set your expectation for the first visit--it is data collection only. The rest must come later. I was so full of questions from reading so much of their site and had the wrong expectations. Maybe this is just the outreach clinic vs going to the real clinic as Nancy did.

 

Jennifer, I really want to here what your opinion was. I think your child probably better fits into their treatment plan--we were more 'square pegs' with them--and to their credit, they are very clear up front before you register that tics aren't their focus.

 

I am so glad we posters all have eachother to learn from. It is up to us to share. Some of us have wonderful doctors who do have great insights. I appreciate our own DAN doctor more now.

 

Claire

[Guest Guest_Kimberly]

I just got my Pfeiffer results for my daughter. The results were zinc deficiency, elevated histamine, elevated heavy metal (aluminum was off the charts), copper/zinc imbalance, and glucose dyscontrol. I will say it has been a little frustrating to work with Pfeiffer. The tests took 6 weeks to arrive and then I can't talk to anyone about them until next Thursday. Also, they told me up front that they did not have great success with tics. However, when you're desparate you will do anything for your kid. I will keep everyone updated when my daughter starts her supplements.

Also, my daughter has been on the Feingold diet for almost 3 weeks, she actually has been a little worse with her tics. Is this normal? I am trying not to get discouraged.

I am thankful for the forum and read it everyday.

Kimberly

[Guest]

About a month ago I was thinking about going to Pfeiffer to have testing done. While I was looking into this I also found Dr. Robbins from this site: http://www.ourlittleplace.com/tourette.html

 

I was trying to decide which one to go to and from looking at several different posts about Pfeiffer I saw complaints. I've seen where it has said that they don't think they can really help tics. I decided that I wanted someone that was knowledgable with this testing which of course they were, but also who felt they could help tics.

 

I ended up deciding on Dr. Robbins because he has had some sucess stories with tics and he thinks he can helps tics. I'll be seeing him in about a month. Since I'm not local they are having me stay up there for a week to do the testing. I have talked to some people and they have said positive things. I'm really looking forward to go up there and am hoping it will be well worth it.

[Claire]

Kimberly

 

I wonder how they mention glucose dyscontrol? Not like hypoglycemia where you get sugar and they measure the impact on your blood sugar.

 

Is she having more of a particular food while on the Feingold that might be triggering this?

 

e.g. more fruit juice or sugar. Are you doing no salycilates (I can never spell this one).

 

Claire

[Guest Guest_Kimberly]

Claire,

Pfeiffer sent me a paper on Glycemic control. They just took a blood test to see the level of glucose. I will know more when I talk to them next week. They want my daughter to eat 6 meals a day and avoid sugar and simple carbohydrate foods. However, she basically has gone without sugar for about 2 years now.

 

Yes, I am trying to do no salicylates with her. I need to get the gluten test done. However, I know how hard this is going to be. She already is sensitive to rice and corn. It seems like most things that are gluten- free have rice or corn.

 

I forgot to add her yeast tests came back normal. However her beneficial bacteria is poor.

 

Thanks,

Kimberly

[Guest]

Claire,

 

You said that Pfeiffer did a a tongue check for severe yeast. What does this mean? I have read somewhere that a symptom of yeast is a white colored tongue. Is this correct? Is that what they were checking for by a tongue check? So is it not normal to have a white coated tongue?

 

Carolyn

[Claire]

My neighbor said it is a grayish coating, but this doctor said she was looking for a 'patchy' look.

 

Claire

[Ronnas]

They are looking for a patchy look to the tongue...white or grayish that does NOT wipe off.

 

Ronna

[Guest Jeff]

Kimberly, It is very common to go through a "detox" period when first starting Feingold. In fact, many people say that the symptoms seem to worsen during the detox period, but once the detox is over, symptoms can reduce dramatically.

For some the detox period can last up to 8 weeks.

Hang in there!

[Guest Guest_Kimberly]

Thank you Jeff, I needed to hear this. My child feels like she can't eat anything.

I'm sure she will get used to it. I think we are always looking for a quick fix, but with tics it is just not going to happen.

Kimberly

[Guest]

Why does someone get this CANDIDA yeast infection? Is there a cause?

[Claire]

steroid and frequent use of anti-biotics.

 

Hormones (the pill) too.

 

From there, sugar, refined carbs feed it.

 

Plus some theorize that elevated mercury suppresses the immune system and leaves the gut vulnerable.

[Guest]

I haven't used anti-biotics that frequently just when I've been sick. I was given a lot of dynatap, tynolo when I was younger. Can those cause it?

[Claire]

How often is 'not that often'? Ever 4 times in one year? Or 6 times in 2 years--I forget the exact number. Somewhere on-line there is a 'test' for things that might lead to candidias. But I think those are the main things.

 

I don't know the other medicines, perhaps others do.

 

I know others here know a lot about this.

 

Claire

[Guest]

Ya, I might have been on them that many times in a year. So if I don't take antibotics that often anymore is it possible that I could have had this CANDIDA yeast infection for several years and still have it? Is the only test a doctor uses to test for it a tongue check? or is them some other test that they use? How is it treated?