ASOT results normal does that rule out PANDAS?

[Tiger]

Hi in autumn & winter 2012 my son had several throat infections that came to a head with scarlet fever.

3 months later he developed behavioural changes & urine frequency / urine issues

2 months after that the first obvious tic emerged (head flick to side)

I suspected PANDAS & showed a paediatrician a PANDAS leaflet. He'd never heard of it & was baffled but he finally agreed to add ASOT to his list of routine blood tests.

1 month later the test results all came back normal. He said that it indicated no recent strep infection & did not want to discuss the PANDAS route anymore. He just said that some children who've had several infections/ ill health take a long time to recover, this would explain the behavioural changes & that tics are quite normal for some children & they usually grow out of them - he wants to discharge us but I've insisted we see him even if its once a year.

 

At the time I explored other avenues; like candida (as he did have a lot of antibiotics) or maybe allergies (he's GF & DF) now based on my observation not confirmed by blood testing.

But when the tics flare up I always wonder why what I'm doing for him (diet changes) isn't managing them. I keep coming back to the ideas of PANDAS or PANS as a cause, because he does always seem to be ill around the time of the tic flare ups.

 

Could normal ASOT blood results almost 6 months later after scarlet fever really rule out PANDAS? Perhaps i asked for the wrong kind of test.

Maybe theres some other kind of test I could ask the paediatrician to refer us for? We go back in January.

 

[pr40]

what is ASOT test?

you may want to look at the tests that are recommended. you can find them among the pinned materials.

any anti-body test is just a test about the presence of an anti-body. it is possible that organism did not create antibodies or that enough time had passed since they were created that they are undetectable.

I personally don't believe in tics that just appear as I don't believe in anything that "just" is.

in your place, I would have only one question: what kind of tactic I need to convince this dr to do the most responsible thing given the symptoms and check for PANDAS. there are, again, many tests that should be run and they are under the pinned materials. there is also NIH advice for drs how to deal with potential PANDAS/PANS cases. that too can be found if you do a search of this forum.

perhaps I misunderstood your post: are you saying that your child's case is mild? if that is the case, perhaps there isn't much you can do beyond what you are doing allready (gf and df diet). perhaps just some anti-infammatory supplements?

best of luck!

Edited November 18, 2014 by pr40

[Mayzoo]

My daughter sees a PANDAS specialist. She has actually very low ASOs and Anti-dnase even in the middle of a 60 day bout of confirmed strep. Her immuno tested her IGG, IGA, IGE, and IGM and found she is deficient in two areas and he says that expains her low titers. Her body is not responding to infection like it should.

 

The titers are nice to have, but they are not the everything when it comes to this disorder. You will likely have to see a specialist in PANDAS to receive proper diagnosis, treatment and tests for other co-infections. My signature shows the other infections my kiddo struggled with.

[EAMom]

I'm guessing ASOT is ASO?

Where are you located?

 

To answer your original question, NO! a low ASO (especially one taken at a single point of time, many months after onset of behavior change) absolutely does not rule out PANDAS.

 

My dd never had elevated ASO, despite positive throat cultures and a high Cunningham Test.
http://www.moleculera.com/ <---there's a good little video in this link, explaining PANDAS/PANS

 

The urinary frequency/behavior change 3 mo. after "many throat infections" (were these strep? were they swabbed?)/scarlet fever (which is strep) screams PANDAS.

1) ASO is not a "test for PANDAS", it is not the antibody responsible for PANDAS symptoms

2) it may helpful to "prove" a child had an unnoticed/undiagnosed strep infection in the past (but you already knew that he had strep throat infections/scarlet fever)

3) not all kids get a rise in ASO (or anti-dnase even with culture-able strep. Also, the rise (and not the a single value) is more important...you want to show titers are increasing, which means you need to get lucky and draw the blood at the right time (and again in 4-6 weeks). If the blood is drawn too late (eg after several months) you may have missed the rise/elevation (titers may have risen and then fallen) entirely http://latitudes.org/forums/index.php?showtopic=16476

In your case, you don't know if your ASO was low because
1) it never rose (happens in many PANDAS kids)
2) if it rose, but b/c your kid had a low baseline, it never rose out of the normal range
3) if it rose, but then fell again (by the time blood was drawn months later)

For starters, I would recommend getting your son, plus all other family members, throat swabbed for strep. Do the 72 hour culture if the rapid is negative. You want to make sure there isn't obvious culture-able strep in the household.

This is a good site, with a diagnostic flow chart https://www.pandasppn.org/

Medical providers (physicians, therapists, nurses can join) , but anybody can look at the information, flow charts https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf etc.

Edited November 19, 2014 by eamom

[nicklemama]

Everything eamom said. Titers or no, your son has had Scarlett fever accompanied by behavioral changes. My son has never had titers to strep. The doctor does not know enough about a PANDAS to accurately diagnose. You will need to find someone who does.

[Tiger]

Hi thank you so much for your replies.

Certainly helps me realise that my first suspicion is still very much valid. It was the behavioural changes coupled with the urine frequency/OCD type obsession of waking & believing with panic that he'd wet the bed when he actually hadn't, that alerted me to PANDAS & then when I read it could follow strep infections plus all the other symptoms, to me it ticked all the boxes. The tics were the last to develop but saying that he's never expressed any hallucinations.

 

I think our main problem is that we are in the UK - GP & paediatrician are absolutely clueless about PANDAS or PANs.

The flow chart looks great I could show it to the paed. but I guess what I should really do is find a PANDAS or PANS specialist in the UK but I have no idea how to go about this. Any advice?

At times I feel so desperate that I want to rush him over to US & do the cunningham panel but I'm guessing I cant because he's not a citizen.

 

PR40 - I guess I don't feel me sons symptoms are mild. But they do seem to calm down at times. eg Subtle body jolts that only I notice. Its all relative I guess.

However, it is still upsetting for me to see him like this knowing it could flare up again like the first onset. In fact its at its worst right now in over 18 months. Just feel like I'm failing at managing the symptoms.

Because I'm with him everyday its me who notices the symptoms. His teachers don't see the behavioural change as they never knew him before this & don't notice the body jerks in a class of 30 children. Sometimes his teachers make me feel like I'm going mad. Quote "No we don't see anything."

When he is ill or if he's watched TV his tics change & become more noticeable to my husband like the eyebrow raising & frowning, head flicking to the side, arm stretching etc. A few weeks ago I explained to his teacher what to look out for & yesterday she said I did see the eyebrow one once but then it went, & hasn't seen it since. I see all the tics non stop at the moment. Either she's not very attentive or he's hiding them in some way

[pr40]

The flow chart looks great I could show it to the paed. but I guess what I should really do is find a PANDAS or PANS specialist in the UK but I have no idea how to go about this. Any advice?

yes -- there are several people on the list. do a search of the forum and make a post with that question in the heading to catch their attention.

[nicklemama]

I've sent you a PM. Look in the top right hand corner of the page to access you messages.

[EAMom]

TIger, there is a UK provider listed at the bottom of this link:

http://pandasnetwork.org/researchandresources/find-help/internationalproviders/

 

There are also some FB groups which might be helpful. Here a UK PANDAS group

https://www.facebook.com/groups/199211800204411/

Edited November 20, 2014 by eamom

[EAMom]

PS sometimes Advil (Ibuprofen) helps PANDAS kids. You could try it for a few day, 3x daily.

[EAMom]

You could also e-mail Moleculera and see if they have recommendations (are there docs in the UK that are running the test). On this page, one of the MDs involved with Moleculera is from Denmark http://www.moleculera.com/leadership-team/

Edited November 20, 2014 by eamom