Should we test for Strep titers?

[jtp]

Hello,

 

I'm not a big forum user but I do read this forum quite often and have posted occasionally.

 

I have a son who has some issue but not diagnosed yet. He had what seemed to be a PANS episode in 2008 (he was 8 years old then) and nothing in between then and 2011. He seemed to have another episode this summer but it was a bit milder than in 2008. He has seen two different Neurologists one local in 2008 and when it happened again we saw a Neurologist at Boston Children's Hospital. First Neuro said he had transcient tics then 2nd said he had either Syndenhams Chorea or Parainfectious OMS and gave me the impression that he does not believe there is a PANS diagnosis. At least he said something more than transcient tics because that it was not. Both episodes followed an infection where antibiotics were used.

 

Both times he was tested for Strep titers and Lyme disease with blood test and both times Lyme was negative and Strep titers were considered normal.Our pediatrician heard of PANDAS but since the tests came out negative she said he didn't have it. The second neurologist asked that if he has another episode to have him tested again for strep titers right away to rule out SC and make the diagnosis of parainfectious OMS. His main symptoms are Eye rolling tics and behaviour changes.

 

He had a virus a few weeks back, sore throat post nasal drip and a fever. It only lasted a few days and he was fine for two weeks. Last week he began with very mild eye blinking and slight eye rolls. He has not progressed any further and the tics seems very mild. I have given him a bit of motrin in the mornings and it seems like the tics are non existant after that until the next day.

 

So after all this background here's my question:

 

Should we have his titers checked again to rule out SC or is this not really an episode? Both previous times the tics were extremely noticable and came on pretty strong in the beginning. He has never tested postive for strep and has never been treated for a strep infection. My gut feeling is the test will come out negative again.

 

We have an appt with Dr B next month to get another opinion. Can PANS have mild episodes? Any advice would be greatly appreciated.

 

Thank you for reading.

[fightingmom]

We noticed this type of stuff early in the game for my son. It was all so mild, I considered them quirky behaviors and nothing that was really alarming. Had I known then what I known now, my son would have gotten the help he needed long ago. Keep that appt. with Dr. B. - he will run a ton of titers/labs even for some viruses. Even if the titers are within normal range, if they are higher than where they were before that would be a good indication that there was more strep exposure. Viruses can trigger, too...and you may not find any proof in labs, but I think you are on the right path. Could you do me a favor and PM me the name of the docs you saw at Mass General? I'm exploring some neuros for my son and we are in Providence. The closest would be MA for us and I don't want to get stuck with any of the anti PANDAS docs there.

[Mayzoo]

Titers are not conclusive for or against PANDAS. My daughter is definite PANDAS and her titers were ASO 6 and Anti-DNASE 95 three months into an exacerbation. She had strep for I have no idea how long (no symptoms) prior to the titer testing and for at least 8 weeks post titer testing. Her pedi had never heard of PANDAS, but they are believers now that they have seen such dramatic improvements in my daughter.

[jtp]

Mayzoo,

 

I am confused. If the titers did not show a strep infection then how do you know that your daughter has/had strep? Was there another test taken that turned out positive?

 

Thanks, jtp

[peglem]

Mayzoo,

 

I am confused. If the titers did not show a strep infection then how do you know that your daughter has/had strep? Was there another test taken that turned out positive?

 

Thanks, jtp

In my case of a PANDAS child w/ low titers, we had many. many positive strep swabs.

[jtp]

Thanks that makes sense then, but my son has never had a positive swab, culture or titers.

[colleendonny]

You dont have to have strep to have PANDAS, if that is what you are getting at. My DD never had PANDAS-like titers, but she does have PANDAS. There are many triggers.

You went to children's? We are from MA as well

[bigmighty]

Low or normal titers don't necessarily mean anything. My son had labs drawn minutes before his in-office strep test popped positive (within seconds). Titer came back nonexistent - listed as "too low to calculate." Two months later, DS was accepted into the NIH clinical trial - they quickly confirmed PANDAS diagnosis in spite of no titer score.

[jtp]

The Neuro at Children's in Boston saw my son after his symptoms had cleared(because it took so long to get the appt). So he was just going on what we had told him. He was very concerned and told us that should his symptoms return after another virus/infection to get a throat swab and titers tested. He wants to rule out the possibility of this being Sydenhams Chorea which would leave him to diagnose my son with Parainfectious OMS ( I haven't found OMS mentioned anywhere on this forum). The only mention of PANDAS was from me, he wasn't touching the PANDAS diagnosis. I have scheduled the test today and I plan on going back to Children's for a follow up. I don't think these tests will confirm a strep infection. I'm not so sure my son has Parainfectious OMS either but I'm going to explore all possibilities.

 

Most posts I read here are about children with terrible exacerbations so I was wondering if some children get mild episodes like the one my son is having now. I'm not quite sure this is an episode because it's coming on slowly. His first episode was terrible and scary the second was shorter in duration, but here we are on our 3rd, I guess.

 

At least I will have another lab report to bring with me to Dr B's appt in May and he can retest again if needed.

Oh and Colleendonny we're from North Central Mass.

[peglem]

The Neuro at Children's in Boston saw my son after his symptoms had cleared(because it took so long to get the appt). So he was just going on what we had told him. He was very concerned and told us that should his symptoms return after another virus/infection to get a throat swab and titers tested. He wants to rule out the possibility of this being Sydenhams Chorea which would leave him to diagnose my son with Parainfectious OMS ( I haven't found OMS mentioned anywhere on this forum). The only mention of PANDAS was from me, he wasn't touching the PANDAS diagnosis. I have scheduled the test today and I plan on going back to Children's for a follow up. I don't think these tests will confirm a strep infection. I'm not so sure my son has Parainfectious OMS either but I'm going to explore all possibilities.

 

Most posts I read here are about children with terrible exacerbations so I was wondering if some children get mild episodes like the one my son is having now. I'm not quite sure this is an episode because it's coming on slowly. His first episode was terrible and scary the second was shorter in duration, but here we are on our 3rd, I guess.

 

At least I will have another lab report to bring with me to Dr B's appt in May and he can retest again if needed.

Oh and Colleendonny we're from North Central Mass.

I think most, if not all of us, recognize in hindsight that our children had mild episodes before the big kahuna hit. And frequently, with treatment we find that flares are less severe.