Strep +ve Pandas or not for 3 year old

[kavurub]

Hi,

My son who is 3 year 2 months had a positive strep yesterday with absolutely no symptoms. He has been diagnosed with Autism recently, has excessive running and other ADD issues, has shown some regression. One thing I remember, early on when we were concerned he developed vocal tics suddenly, this coincided with him going to a different class, so we were could be stress induced autuistic reaction.

His behaviours did seem to come on suddenly, I remember telling a psychologist like some body turned on a switch, he had some behaviours like hyperactivity. But we have lost our kid completely since April. Our peds mentioned Pandas in June and brushed it off ( also our neurologist) so waited and called back, finally got strep test two days back and it is positive. our ped started him on amoxycillin.

His anxiety is through the roof some times and he will go to the play area for a month and now he is totally scared/not interested in it, same with his bike.

Wondering about our next steps: Should I get ASO Dnase, cunningham panel, but he tested postive for throat strep. Will the antibiotic make the ASO Dnase etc.. tests false negative. Should we wait to see to howm amoxycillin helps or add other antibiotics.

Contacted Dr.K in chicago, did not get a reply for email, but can call back, we live in minneapolis.

Thanks and sorry for my long post

[Chemar]

Hello

I am just bumping your post up so hopefully other members of this forum will respond

[Marie22]

Hi,

 

Sorry your son is having this difficulty.

The response to antibiotic treatment is an important tool to help confirm the diagnosis. But please be aware that amoxil is not always working with chronic strep infection. Our daugther initially responded very well after 10 days with cephalexin (altough she had been sick for months) but when the pediatrician changed the antibiotic for amoxil (for maintenance), her signs relapsed hardly after few weeks. An infectiologist from mass general hospital (in the pandas team) explained that they see better results with cephalexin or Augmentin and usually they dont use amoxil as initial treatment.

When our child was changed again with Augmentin, she started improving again within 3 days. She is now 85% back.

For the tests, ASO is usually high (and will stay high for weeks to months although it is treatted with antibiotics) when the bacteriology is positive for strep. But occasionally some kids have normal ASO with positive culture for strep.

We have no experience with the Cunningham's panel but my understanding is that this simply confirms that an immune reaction against the brain is present (immune mediated encephalitis).

 

I wish you the best.

Marie

[dasu]

I am sorry your family is going through this. Our daughter had her first flare at age 2 (2 months short of her 3rd birthday). We also first thought she had autism (there are some who think autism is also immune related.) Her primary care doc did prescribe augmentin but we saw no improvement except over the course of several months she improved slightly. Dramatic improvement was not observed until Dr L prescribed Clindamycin and Rifampin.

 

When you look back do you see signs of PANDAS? Particularly immediately before getting sick and afterwards. Many of the behavioral episodes we experienced pre-diagnosis were in fact small flares and with young children its harder to observe symptoms.

 

As for your trouble reaching a PANS doctor you will have to be a strong advocate for your kids health. If you stick around here for a while you will notice many parents complaining about lack of support from PANDAS doctors. They are swamped.

[dcmom]

Hi. I am so sorry you are going through this.

 

Six years ago my daughter, then 5, was diagnosed with PANDAS. We had a happy, healthy kindergarten kid one day, and a month later we had a girl who couldn't wear underwear, wear most of her clothes, separate from me at all, eat more than a couple foods, temper tantrum daily, excessive toilet issues, night terrors, etc.

 

I heard about pandas and took her to the per for a swab (found out a classmate had strep- with no symptoms). The swab was positive, and that started us on our pandas journey.

 

I urge you to consider (if $$ is not an issue) seeing Dr Elizabeth Latimer in Washington DC.

 

For my daughter pandas is truly an autoimmune disorder. She needs immune dampening treatment when she has a flare up (which can be zero to two times a year, typically). We have had great success with IV steroids and plasma pheresis. I don't know where she would be now, without the help of doctor's willing to TREAT pandas aggressively. She is able to live a totally normal life, thanks to them.

 

If that travel is to far- I suggest an immediate appt with Dr K in Chicago. If he diagnoses pandas, he will probably recommend IVIG, which is also $$.