Would you do the cunningham test if....

[ajcire]

I am expecting to receive the test today... unfortunately I was already scheduled for bloodwork for ds today and was hoping to get it in the mail yesterday even though the tracking did point to today. So I will cancel the bloodwork and try to get in tomorrow instead..

 

BUT for some reason, probably murphy's law... my ds seems fine the last few days... not really noticing the throat clearing much and while he did have a couple of yelling moments and crying moments those really didn't yell PANDAS at me... but rather were more typical of what other kids might have done too. My daughter is on antibiotics for current strep that we found out about this weekend... SO I should be thrilled that so far ds is fine (he was on amox until last week.. lovely timing of taking him off with my daughter getting the strep...grrr) BUT at the same time I don't know what to do... I likely won't be able to do the test again... but really wanted to get it in before they stop doing it for a bit. His symptoms are pretty mild to begin with so it's possible some is still there that I am not even really seeing but maybe it's just not there right now aside from an occassional throat clearing. Seriously, they really need to make a pee on stick test for this!!

 

What do you think you would do?

[dcmom]

I would still do it.

 

We did dd's test, a few days after she started recovering on her own from an episode. It was still high.

[thereishope]

I have not done the Cunningham test yet. I did not find out about it until my son was already into recovery mode and thought it was best to wait until he ever had another exacerbation again. I hope I never have reason to get that test done. That would mean he's sick again.

 

If you're in doubt about doing it, you could just keep it on hand an have it ready to go if his behaviors worsen. If you do it now, I would at least include in your history to Dr Cunningham that at the time of the test, you thought he was starting to do better. That way she can understand his results as well.

[smartyjones]

yes - a very hard choice! i found out about the test somewhere around Aug. my son was doing quite well and we were gearing up for going back to school - that he was unable to go to the last 5 weeks last year. i thought i was better off spending my $ on our treatment. i have thought i would do it if he has another exacerbation.

 

thank god - he has continue to improve! i didn't order the kit b/c i discussed the $ aspect with Kathy and decided to not have them send it out if i wasn't intending to send it back now. i think i now regret that - is the bigger expense the sending back? it's probably good to have it on hand.

 

but - it would be very interesting to have seen those numbers.

 

one good piece of advice i've gotten - when we saw our first naturopath, i was surprised she wasn't running more tests. she said early in her career, she ran all kinds of tests - the data is certainly interesting and it would be great to have all kinds of info on everyone. however now, she only runs tests that are going to impact how she is going to treat the person.

good luck,

Kathy

[monarchcat]

I had the same dilemma back in August. I really thought I might be doing the test as a baseline because he didn't seem to be in an exacerbation (mild tics at the time). His CamK score was 193 - upper end of PANDAS, lower end of SC.

 

I think you should probably do the test now. If the test comes back in the PANDAS range, then you have your proof. If it comes back low (which I doubt if you think he has PANDAS) then you could do the test again and ask them if you can do it without "donating" the $200. Not unheard of.

[matis_mom]

yes - a very hard choice! i found out about the test somewhere around Aug. my son was doing quite well and we were gearing up for going back to school - that he was unable to go to the last 5 weeks last year. i thought i was better off spending my $ on our treatment. i have thought i would do it if he has another exacerbation.

 

thank god - he has continue to improve! i didn't order the kit b/c i discussed the $ aspect with Kathy and decided to not have them send it out if i wasn't intending to send it back now. i think i now regret that - is the bigger expense the sending back? it's probably good to have it on hand.

 

but - it would be very interesting to have seen those numbers.

 

one good piece of advice i've gotten - when we saw our first naturopath, i was surprised she wasn't running more tests. she said early in her career, she ran all kinds of tests - the data is certainly interesting and it would be great to have all kinds of info on everyone. however now, she only runs tests that are going to impact how she is going to treat the person.

good luck,

Kathy

Kathy,

I was also debating because we already have so many PANDAS related expenses... but I emailed them explaining the situation, and saying I would do it either way but right now it would be hard for us to send the $200. They said not to worry if you can't pay anything at this time. So if you want to get your child tested, go ahead and request the kit.

 

Isabel

[ajcire]

Kathy, I have thought about that a lot... what would this info do for me? What the test hopefully will do for me is to get my husband on board that this is real. My son is mild so it's easy to write all this stuff off as other things.. although I don't get how he is explaining to himself the positive strep tests when he has no strep symptoms other than throat clearing and behavior but if this helps my husband in any way to get that this is real than I think it will have been worth it... if it helps my ped who thinks titers are the criteria for this than that will be good too.

 

 

"one good piece of advice i've gotten - when we saw our first naturopath, i was surprised she wasn't running more tests. she said early in her career, she ran all kinds of tests - the data is certainly interesting and it would be great to have all kinds of info on everyone. however now, she only runs tests that are going to impact how she is going to treat the person.

good luck,

Kathy"

[smartyjones]

erica240 - i think you just answered your own question! I'd say you're saying you should go for it! esp if they're closing soon - that's a fairly long time to wait and regret.

 

let me know how it turns out. can you say how long you feel he's been out of exacerbation? or is it not so much 'out of exacerbation' as a good couple of days?

[ajcire]

erica240 - i think you just answered your own question! I'd say you're saying you should go for it! esp if they're closing soon - that's a fairly long time to wait and regret.

 

let me know how it turns out. can you say how long you feel he's been out of exacerbation? or is it not so much 'out of exacerbation' as a good couple of days?

 

 

It's so hard for me to pinpoint exactly because his symptoms present in a mild not so obvious way. The most concrete symptom is a throat clearing thing he does... I have noticed just the past few days that it has really decreased to where I only notice it once or twice throughout the day.. if I didn't know better just hearing those few times I would just think he was clearing his throat the way anyone might do... unfortunately, or fortunately... I know better.

 

The kit came together.. I am scheduled to go tomorrow.