Possibly Pandas

[Kaye]

This is my first post here. I've been researching pandas the last few months and I'm convinced this is what my son has.

 

He first got sick almost four years ago with the worst case of strep he had ever had. Fever, throwing up, sore throat. We got antibiotics and he got better. About a week later he started twitching at night when he would lay down and try to sleep, he also had insomnia, sometimes only sleeping an hour or two a night. He also started stuttering, something he had never done before.

 

We went to our dr, a neurologist, and a pulmonary sleep dr. All the tests came back fine with the exception of the sleep study which only said he had a sleep disturbance but they didn't know why. Finally went to an holistic dr who suggested we go gluten and dairy free,also eggs. That helped some and we also started taking melatonin and gaba.

 

Ds felt better for a while then started getting brain fog and anxiety. Still has insomnia and some twitching. Stuttering got better soon after changing our diet. So he would have good days and bad days sometimes havibg flare ups for a few weeks.

 

This past summmer brain fog and anxiety got much worse. Also his pupils are often dilated. There are times when he has shivering and yawning episodes. Where he starts shivering and yawning and can't stop. Drs don't seem to think its not a big deal but I know something isn't right.

 

We are taking fish oil, magnesium, melatonin, fish oil, oil of oregano, olive leaf extract, ibuprofen. He's started tapping his hands lately. He can't tolerate loud noise or bright lights. He's very emotional and can't stand it when our routine is changed. He's also concerned about time going by to quick and always wants to know what time it is.

 

Went to our dr, she seemed willing to listen and consider pandas. Did cultured strep test which was negative. She also did some blood work and that showed an aso titer of 400. She referred us to an infectious dr who said he didn't think it was pandas. He said an aso test also tests other strep strains which aren't harmful and that could be why it was elevated. He also thought it could be a movement disorder and is referring us to a neurologist.

 

I guess my question is does that sound right with the aso test. I thought 400 was high. We are open to any ideas or suggestions about how to proceed from here.

[MomWithOCDSon]

Dr. Swedo of the NIMH (leading PANDAS/PANs researcher and advocate) has noted that it is the direction of the titers, rather than merely a high titer result in and of itself, that can be an indicator of PANDAs. So I might suggest waiting a couple of weeks and having the test taken again? From what I've seen from labs, I would think that 400 is well above a "normal range," depending on your DS's age; when my DS was tested at age 12, the high end of the lab's normal range topped out at 170. And that's the first time I've heard the explanation that the ASO can reflect "other strep strains" that are not problematic. Hmmmmm.

 

Might also ask for an "anti d-nase b" test which is supposed to test titer levels within 6 to 8 weeks of a strep infection/episode.

 

Ultimately, in terms of diagnostics, I would seek out a Cunningham test (tests CamK II levels).

 

Overall, given what you've stated, I would suspect PANDAS/PANs.

[Kaye]

Thanks for input, we really appreciate the advice. I will ask for another aso test. I will also talk to the neurologist about the anti d-nase b test and the Cunningham test. Hopefully we can get some answers from the neurologist. My ds is 12 and our pediatrician was concerned about his aso levels being high. That's why we were surprised that the infectious dr didn't think it was a concern.

[jan251]

For what it's worth, in my area, the infectious disease docs don't believe PANDAS is real and the most notable one has stated that publicly. It seems to me that immunology may be a better specialty to see than infectious disease. As always, choose your providers carefully.

[Kaye]

Thanks that's good to know. Yes I wondered about that. Seems like the infectious dr had already made up his mind before he we even saw him.We'll check into seeing an immunologist also.

[Mom23boys]

The direction of titers may be indicative. 400 really is not that high. In fact the NIH reference range goes above 600 for normal titers in school age children. Titers are highly individual. My son had an ASO of 480 a year after he had strep to our knowledge and an anti dNase B of 1920. My niece had positive throat cultures multiple times and NO raised titers!

 

The fact is, the titers tell you something but not everything. Your child's symptoms sound like PANDAS. I would push very strongly for a one month trial of augmentin or azithromycin. If he gets better, you may have your answer. The Cunningham Test is preformed by Molecura Labs and is expensive. It will, however, give you a definitive answer if positive whether it is PANDAS. We did it on our oldest years ago to satisfy ourselves that his symptoms, mainly tics, were PANDAS. His Cam Kinase II (the PANDAS specific test) was high PANDAS range. . . question answered.

 

I would check out the Pandas Physician Network and share it with your doctor. www.pandasppn.org. It is a website created by the top PANDAS clinicians and research doctors in the country. If you look on the left side for the board members, it is like a who's who. Dr. L wrote the steroid portion of the site (she told me). The website was created by doctors to educate other doctors. There is a flow chart for diagnosis and another flow chart for treatment. I would print both out, review them, and take them to your next appointment.

 

Good luck!

[Mom23boys]

Also, my nephew had the diagnosis of restless leg syndrome (along with ADHD and a bunch of other stuff) before he was diagnosed with PANDAS. When they went to do the sleep study, the doctor was a neurologist that switched to sleep medicine for 2 years while she worked out her non-compete in her contract from leaving her old job. She took one look at my nephew and said that is not RLS, that is chorea.

[Kaye]

Thanks so much for the info. I will look up the Pandas Physician Network. I will talk to the dr about trying antibiotics again. Our dr was hesitant to prescribe them since his throat culture was negative. I had no idea the Cunningham test was so expensive...I'm assuming insurance won't cover it? Still might be worth it though. Yes they had mentioned restless leg syndrome when we first went to the neurologist four years ago, though no definite diagnosis. I wonder what the difference between that and chorea is, and if the dr would have been able to diagnosis it then?

[Mom23boys]

We did the Cunningham test when it was part of Dr. Cunningham's research study at Oklahoma. Originally I think there was minimal or no cost. We paid 400.00 for it in 2009. I think it is a thousand or so now? And no not covered by insurance.

[mama2alex]

Strep is not the only infection that can cause PANDAS/PANS. Many of these kids have multiple chronic infections due to issues with the immune system. Lyme and coinfections are common, as well as various chronic viruses and candida (systemic yeast). A Lyme-literate doctor will test for all of these, as well as strep, so that can be a good starting point. Most of them have now seen multiple cases of PADAS/PANS and will know more about how to look for hidden strep infection than the average doctor.

 

Light and sound sensitivity are classic Lyme/coinfection symptoms, as are brain fog and anxiety, so I would explore that as soon as possible.

 

Also, if your son has food sensitivities, consider cutting out any foods with added preservatives, dyes, and MSG. Limiting sugar to as little as possible can also be very helpful.