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Ah, ,

You are such a seasoned parent-researcher! Good for you for finding that

article.

We started our oxalate project working a little bit with the Vulvar Pain

Foundation's Pain Project that is headed by Dr. Clive s. He had a

lab that did testing of periodic hyperoxaluria, and the way they did this

was they had the patient collect urine in a separate vial every time they

peed for a whole day. The largest number this came to was about ten

vials. The patient recorded on that day any changes in pain by the time it

occurred (or in our case, pain and behavior) so that that data could be

compared with the oxalate secretion in each sample once the results were in

and a correlation could be drawn between the lab result and the

behavior. Pretty nifty.

By looking at thousands of women this way they learned that each person

seems to have a time of day when a higher oxalate secretion occurs, and

that time seems to stay pretty consistent in that person, but across a

population, there is no consistency...it all washes out in the data. I

would expect this even more in the autism population since there are kids

whose bodies are very confused about diurnal rhythms.

We only tested seven kids in his lab, and then they closed the lab

permanently...not because of us, they just squeaked us in before they quit

because we begged!

I would be thrilled if a lab servicing the autism community would offer

this sort of periodic test because it was useful, but I haven't succeeded

in giving the labs the impression it would be worth the trouble of setting

this up, ie., that they could make enough money selling the tests that they

could recover their development costs. This issue has been there for most

of the testing we need. Especially in some states, getting new tests

approved for commercial use is a real bugabear and it can be expensive,

with lots of regulatory hoops to jump through. This is why we need big

dollar grant money before we can do much of anything besides listen to

parental reports. States don't approve tests unless there are studies

showing the test's relevance. So, what we need is a research lab that can

do our work without being commercial. Now, how can I get that set up?

Anyway, since there did seem to be a high correlation between behaviors and

when the oxalate level was high (separated by a few hours) we were pretty

convinced that the behavior and the pain were related to gastrointestinal

issues, and not kidney issues. So if you notice any periodicity in your

son's bouts with pain, then give the calcium in the hour before the

expected pain.

Does that help?

At 12:40 AM 1/12/2008, you wrote:

>,

>

>I googled diurnal oxalate excretion and found the article link below. It

>discusses controls and stone formers and their oxalate excretion patterns.

>It looks like this study found that stone formers (our case?) do not have

>different oxalate clearances between day and night unless they have oxalate

>loading in which case they have heavy excretion at night. If we are on a

>LOD, this seems to say there is no difference in oxalate excretion times,

>which may mean we should take multiple urine samples to ensure we catch peak

>oxalate excretion. However, if a child eats their heaviest meals (with

>possibly the most oxalates) at supper, then they could experience heavier

>symptoms in the late afternoon and evening. If this is true, then the best

>time to give calcium and arginine is in the afternoon and the best time to

>collect for an OAT test would be the first thing in the morning (which is

>when we all check anyhow). Is this how you interpret? If not, then maybe we

>should follow the former case of collecting urine samples in the evening and

>again then next morning. Your thoughts? L

>

> " there was no significant difference in oxalate clearance between day and

>night in calcium oxalate stone formers. As compared with the control group,

>there were no significant differences in the diurnal variation in the plasma

>oxalate concentration, oxalate clearance at oxalate restriction, or in the

>diurnal variation of the plasma oxalate concentration at oxalate loading.

>However, the oxalate clearance during the night after oxalate loading

>increased significantly (p less than 0.05) compared with the control group. "

>

><http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed>http://www.ncbi.nlm.nih.gov\

/sites/entrez?db=pubmed

><<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed & uid=3434488 & cmd=showdeta>h\

ttp://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed & uid=3434488 & cmd=showdeta

>ilview & indexed=google> & uid=3434488 & cmd=showdetailview & indexed=google

>

>

><<http://geo.yahoo.com/serv?s=97359714/grpId=11354043/grpspId=1705061616/msgI>h\

ttp://geo.yahoo.com/serv?s=97359714/grpId=11354043/grpspId=1705061616/msgI

>d=29875/stime=1199992731/nc1=5008807/nc2=4025321/nc3=5170420>

>

>

>

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,

I googled diurnal oxalate excretion and found the article link below. It

discusses controls and stone formers and their oxalate excretion patterns.

It looks like this study found that stone formers (our case?) do not have

different oxalate clearances between day and night unless they have oxalate

loading in which case they have heavy excretion at night. If we are on a

LOD, this seems to say there is no difference in oxalate excretion times,

which may mean we should take multiple urine samples to ensure we catch peak

oxalate excretion. However, if a child eats their heaviest meals (with

possibly the most oxalates) at supper, then they could experience heavier

symptoms in the late afternoon and evening. If this is true, then the best

time to give calcium and arginine is in the afternoon and the best time to

collect for an OAT test would be the first thing in the morning (which is

when we all check anyhow). Is this how you interpret? If not, then maybe we

should follow the former case of collecting urine samples in the evening and

again then next morning. Your thoughts? L

" there was no significant difference in oxalate clearance between day and

night in calcium oxalate stone formers. As compared with the control group,

there were no significant differences in the diurnal variation in the plasma

oxalate concentration, oxalate clearance at oxalate restriction, or in the

diurnal variation of the plasma oxalate concentration at oxalate loading.

However, the oxalate clearance during the night after oxalate loading

increased significantly (p less than 0.05) compared with the control group. "

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed

<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed & uid=3434488 & cmd=showdeta

ilview & indexed=google> & uid=3434488 & cmd=showdetailview & indexed=google

<http://geo.yahoo.com/serv?s=97359714/grpId=11354043/grpspId=1705061616/msgI

d=29875/stime=1199992731/nc1=5008807/nc2=4025321/nc3=5170420>

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