What was the most helpful testing your child had?

[ktdommer]

I am conferencing with my son's Lyme/PANS doc this week and am wondering if there are PANS lab tests I should ask for. What testing should absolutely be done and how often? If I can ask for any testing, what should it be?

Are your docs testing for things like dopamine and seratonin?

Is there a list available?

Yes, I trust our doc, but it would like to make sure that everything is covered. He is not one of the big PANS docs but is a brilliant ILADS doc.

My son has had the following lab work:

Cunningham PAnel

Igenex

Babesia

Bartonella

Viruses

Testosterone

Some vitamin levels

Metals

C4A

CD57

HLA B27

Thanks everyone.

[PowPow]

Complement Profile c3/c4

ANA(anti nuclear antibodies)

 

Antibodies - Sm, RNP, Ro, La

Anti-Microsomal thyroid AN

angiotension-Converting enzyme

Anti-thyroglobulin Thyroid

Anti-beta 2 glycoprotein 1 (IgG, IgM, IgA)

Anti-Cardiolipin (IgG, IgM, IgA)

Thyroid Profile

Protein/Creatinine Ratio, Urine

Von Willebrand antigen

Lupus Anti-coagulant screen & reflex

CMP

Sed Rate

C-Reactive Protein

 

anti-dsDNA

 

These found the underlying disorder for my daughter,(anti-phospholipid syndrome) which created a treatment plan that has brought her light years from where she was just one year ago.

 

i hope you can find help from some of this information.

Edited June 25, 2014 by powpow

[qannie47]

I would add the OATS test to the above.

[SSS]

I agree with Q, I don't see any gut testing.

The Metametrix (now Genova, they've merged)

(the OAT test is from Great Plains)

is very similar to Metametrix Organix profile,

both being urine tests that measure yeast/ fungi, and bad bacteria in the gut,

digestion, gluten sensitivity, etc.

 

However, upon our most recent visit to Dr.,

there is a new test called Metamatrix ION test,

that is first morning urine and blood draw before eating,

and by golly it covers everything,

yeast, bacteria, mitochondria, every vitamin and mineral, heavy metals (if showing in blood)

amino acids, and more

http://www.gdx.net/product/ion-profile-with-40-amino-acids-nutritional-test-blood

Edited June 25, 2014 by SSS

[sf_mom]

VCS: Visual Contrast Sensitivity Test: $15 on-line. Can indicate you are dealing with inability to detox lyme biotoxins or mold.

 

http://www.survivingmold.com/store1/online-screening-test

 

Shoemaker Panel (mold/biotoxin) - Real Time Labs Mycotoxin Urine Tests - Our C4a's were normal which led me to believe we did not have a mold issue. I wish we had done more extensive testing from the beginning.

 

Biofilms and FL 1953/7 strain 'protozoa' test

 

Nagalase

 

Zinc/Copper ratios

Edited June 25, 2014 by sf_mom

[ktdommer]

Thanks for replies.

Still wondering if seratonin and dopamine testing are helpful in our kids and if testing is reliable.

[SSS]

We had the neurotransmitter testing (through Neuroscience, I think, it was a urine test.)

 

It left me more confused, as it came back dopamine AND serotonin high,

and we didn't get any clear feedback on what to do.

I guess it did explain why every time I tried an expensive

5- HTP supplement, or Kavinace,

dd had an immediate NO reaction.

 

We also in the past had a separate amino acid test.

In her particular case, it wasn't that revealing,

everything mid- range-ish or not too dramatic,

except taurine a bit high, as I used to give that particular one to her as a supplement.

Edited June 25, 2014 by SSS

[cara615]

We have done the following:

 

ALCAT - food sensitivity testing ($300)

Nutra EVAL - tests for vitamin deficiencies, amino acids, metals, methylation function, mito function ($1,000)

Genova comprehensive stool analysis - tests for yeast, bad bacteria and parasites ($550)

ASO Anti dNase-B - covered by insurance

Immune function panel - covered by insurance

Micro OAT - tests bad bacteria and yeast in the gut ($199)

Cunningham Panel - ($945)

Labcorp Western Blot - covered by insurance

mycoP titres, H. Pylori test - covered by insurance

 

 

The OAT and the ALCAT have been the most helpful for us so far.

Edited June 26, 2014 by cara615

[SSS]

ktdommer,

I thought about this thread today as we got the results back from ION test from Metamatrix/ Genova (the companies merged.)

 

What a comprehensive test w/ all kinds of info., and insurance picked up a huge part of the cost.

 

What I found very revealing was the amino acids part- we had tested dd through neuroscience for amino acids about 3 years ago, and I was not impressed- felt a bit like they were pushing their own product line, and the way the results lined up for us didn't really phase me,

 

but today's results through Metamatrix/ Genova were very interesting- and, the test included a snapshot of yeast and gut bacteria (okay!), fatty acids, minerals, B vits./ MTHFR, metals if in blood, etc.

 

We were in line on everything except 3-4 amino acids very low which I am finding extremely interesting, as they can affect neurotransmitters. Furthermore, d- lactate was sky high, I had no idea- major probiotic switch needed ASAP.

 

I am too old in this now to think there is a magic bullet pill, but, hoping correcting new found deficiencies will help.

[sf_mom]

SSS: I wanted to comment on your post.

 

One thing I learned from Dr. G in San Rafael is those low in Amino Acids will have difficulty making IgG. We have recently tested our children's amino acids because they have such compromised immune systems. We tested through Dr's Data but none were deficient.

 

On the flip side, Dr. M in Pleasanton is now treating kids with 'neuropsych symptoms' with very high doses of amino acids when deficient to help balance neurotransmitters. We haven't discussed her protocol in detail but we have talked about the successes of this type of therapy. We do get reimbursed for Dr. M visits as she is considered in network for our insurance. You would need to see her once a week for testing during protocol. It might be worth a visit to her.

 

I have just breezed this article and haven't read much up on this therapy yet but thought I'd attach anyway.

 

http://www.steinorthopedic.com/pdf/aminoacidtherapy.pdf

Edited July 11, 2014 by sf_mom

[Ladymavs]

When we first saw our immunologist (PANDAS specialist) several months ago, he did a complete blood count including lyme, myco p (which we were very high in IGG), white/red blood cell, etc. Recently he did another test to include the IGE (allergies) and Vitamin D count as we were initially very low here.

 

We are looking at visiting a psychiatrist in the area who has worked with PANDAS patients. He also does a full blood work up to include the neurotransmitter testing. I have read pros and cons about this test. Anyone have any firsthand experience on this one? The test can get costly as our insurance only picks up small portion, so I want to make sure that what we do is going to be helpful in helping with son's OCD (Pans related) and also anxiety/adhd.

[ktdommer]

So another doc appointment has come and gone since I started this post. My son's doc had tested for a thyroid antibody which showed up. Changing thyroid treatment to synthroid.

My son will be getting the Pharmasan Labs testing done. Doc was familiar with it. Does anyone know the price of this?

Currently fighting insurance for 6 more months of IVIG. Very few positive changes, but worth continuing if headed in the right direction even if slowly.

He will have a Community Based Work assessment done next week. Should be interesting.

K