Can I hear from those with normal titers?

[JAG10]

LLM,

 

I've seen "canary" reaction posted a few times. Can you please explain what that means exactly?

 

Thanks!

[peglem]

LLM,

 

I've seen "canary" reaction posted a few times. Can you please explain what that means exactly?

 

Thanks!

 

"Canary" reaction is when your child presents with PANDAS symptoms simply from strep in the environment. So, for instance, your PANDAS child's symptoms may actually be an indication that their sibling has strep.

[LNN]

LLM,

 

I've seen "canary" reaction posted a few times. Can you please explain what that means exactly?

 

Thanks!

 

In the "old days" coal miners would take a caged canary into the mines with them. If there were toxic fumes building up in the mines that were odorless, the fumes would overwhelm the canary and it would drop dead. The canary's small body made it more susceptible to small amounts of poisonous gas than the miners and it gave the miners a warning to get immediately out of the mine.

 

So to be a canary means you're more susceptible to something and your reaction lets other know something foul is afoot.

[worriedmommy]

My dd5 has normal titers too. Tested in Feb, and her level was 13, even though she had 3 positive strep cultures in the 6 months prior to that time. Tested again 4 weeks later and level was 29. Still low...but a rise none-the-less. No idea what it means, and most doctors don't care as 29 is still very low.

 

We've seen a local neurologist in NH who feels you must have high titers for a PANDAS dx. Ughh! Still, she doesn't feel dd has Tourette's.

 

Had a consult with Dr. T who feels that dd does have a "PANDAS-like" illness, and put her on Biaxin. Seeing some positive effects from Biaxin...so we're encouraged.

 

Off to a neurologist at Boston Children's Hospital tomorrow who specializes in both Tourette's & PANDAS, so I'm VERY curious what he will say.

 

In my opinion, titers can help prove whether a child has had a recent strep infection. If you already KNOW they've had one, and titers are normal, then there's the proof that they simply don't always rise.

[T_Mom]

Normal titers here too--In my d's case, she had classic sudden onset OCD and mild ticcing -- We were at a complete loss as to what to do-- Then found the Pandas literature--and the symptoms "fit". Sudden onset, OCD that was obvious and interfered with her life (severe), chorea form movements (slight), ticcing (mild), writing deterioration, enuresis...

 

Eventually, we were told by one original Pandas researcher that we should not bother with titers as you had to "catch them" just at the right time to see a result--Perhaps if you measured month to month, or week to week, a comparison could be seen, but even then I do not know if all kids would show indications of Pandas clearly in titers--apparently not!

 

With antibiotics and steroids my d is back--

 

I truly think the real way to test for Pandas is along the lines of how Dr K "tests" --

Does a child with OCD and ticcing get better (in an obvious way) when treated with antibiotics, steroids, etc.

Bottom line: Normal OCD does not go away with antibiotics, time and again!

[dut]

fcefxer

Tell them to shove their titers

indeed! excellent!!

[simplygina]

We too are a member of the group with classic PANDAS symptoms and non existant titers. The last time my son had strep the only symptom he had was extreme separation anxiety that sprang up out of no where. No classical symptoms - stomach ache or sore throat. We've checked titers 2x and probably won't bother again.

 

Neither one of my kids has "normal" strep. I can usually tell by a sound they get or a smell. My PANDAS son would say, "my throat feels weird". He said it didn't hurt, just felt weird. My younger son always says he feels fine. Last time we were at the grocery store and I noticed the different sound of his voice. He insisted he was fine. I remembered that the store had just opened an Express Clinic so we went in for a swab and it was positive. The N.P. was totally doubting me because his throat was only mildly inflamed and he said he felt fine. Now that my PANDAS son has had his tonsils out, he doesn't get that weird sound anymore. This last exacerbation he had an ear infection, a sore throat (on augmentin, rapid was neg.) and a sinus infection. I could smell strep. 2 days on Biaxin and the smell was gone. I just don't think titers tell the story for so many of these kids. Especially when you realize you've probably been dealing with PANDAS for at least 5 years, possibly more like 8.

[EAMom]

Our dd had low titers every time we tested her (3 different times).

 

The first time was 2mo. after FEVER (later found out several kids had strep in classroom)/onset of behavior change. At that point her PANDAS was severe enough to require hosp. for malnutrition, anorexia nervosa, OCD. She also had suicidal statetments, bi-polar behavior, and tics. In the hospital her throat and perianal cultures were both POSITIVE for GABHS...yet her ASO/anti-dnase b titers were low/normal. Her throat also "looked normal" per the doctor that admitted her.

 

We checked ASO/anti-dnase b titers 1mo. later and they were falling (still low/normal). About a year later we just checked ASO (immunologist was curious and we were drawing blood anyway)...it was in the teens (basically undectable) yet at the same time her Cunningham CaM kinase ll came back in the "high PANDAS range".

 

Our OCD specialist (has many PANDAS patients) child psychiatrist says some kids have the titers, some don't...

Edited March 18, 2010 by EAMom