Dilated pupils with PANDAS

[colleenrn]

I need help understanding why my children with PANDAS will have dilated pupils one day, the next day they don't, then two days later they are dilated again. It seems so random to me. I have posted here a lot, so I am probably repeating our history. My 3 oldest children are definitely PANDAS- not absolutely sure about my 2 1/2 year old son, but it looks like he may. He has has strep 3 times in the past year with no physical symptoms, just behavioral.

 

Last Tuesday he woke with 103.5 temp, headache, sore throat. Rapid culture negative. Had them send out a 72 hour upper respiratory culture. Came back negative for strep, "normal" respiratory flora with heavy growth (his cultures always read heavy growth, so if anyone can shed light on that??)

 

Because of our strep history and my strong suspicion that he has strep based on behaviors and abrupt onset of sleep apea (sleep apnea occured in my 2 oldest children whenever they had strep until they had their tonsils and adenoids removed) that my wonderful Nurse Practitioner gave me a script for Zithromax. He is on day 7 of Zithromax (we are doing 10 days) and is doing better, but still has the apnea, although it has definitely improved. He periodically has dilated pupils, but tonight they are so dilated I can barely see his iris. They are huge.

 

I just don't understand why they could be dilated one day and not he next, then dilated again. Can anyone explain this to me? I know giving Ibuprofen can help, but I don't understand what is going on. If his basal ganglia is inflamed, how could the pupils go from regular size, to dilated, back to normal, so quickly.

 

My sister's daughter is also PANDAS and she says some days her pupils are huge, some days they are normal. It sems that they wouyld be huge, then slowly go back to normal size, not jump around.

Thanks so much for any input!!!

Colleen

[Caryn]

Colleen,

 

If they are both dilated together then I think it might have to do with too much dopamine. (Which is also a tic trigger). I remember reading that somewhere. You might want to google that.

 

You want to lower dopamine and raise seratonin. Are the dilated pupils in conjunction with poor sleeping and increased ticcing? Then I would think it was a dopamine issue.

 

If one is dilated then there is a more serious biological issue.

 

Caryn

[peglem]

Do you use benedril (diphenhydramine) with your kids? It has anticholinergic properties. Dilated pupils can be the result of blocked cholinergic pathways. Eye doctors use an anticholinergic to dilate pupils for examination. Adreneline also blocks acetylcholine. You'll notice pupil enlargement if your kids go into flight or fight mode- that's the adreneline at work.

I don't know about the much about the connection with serotonin and dopamine except those 2 neutotransmitters, along with acetylcholine are the primary actors in the basal ganglia. Also, I seem to remember reading something somewhere about strepA bacteria producing toxins that are anticholinergic-I'm gonna go see if I can find that info again.

 

I need help understanding why my children with PANDAS will have dilated pupils one day, the next day they don't, then two days later they are dilated again. It seems so random to me. I have posted here a lot, so I am probably repeating our history. My 3 oldest children are definitely PANDAS- not absolutely sure about my 2 1/2 year old son, but it looks like he may. He has has strep 3 times in the past year with no physical symptoms, just behavioral.

 

Last Tuesday he woke with 103.5 temp, headache, sore throat. Rapid culture negative. Had them send out a 72 hour upper respiratory culture. Came back negative for strep, "normal" respiratory flora with heavy growth (his cultures always read heavy growth, so if anyone can shed light on that??)

 

Because of our strep history and my strong suspicion that he has strep based on behaviors and abrupt onset of sleep apea (sleep apnea occured in my 2 oldest children whenever they had strep until they had their tonsils and adenoids removed) that my wonderful Nurse Practitioner gave me a script for Zithromax. He is on day 7 of Zithromax (we are doing 10 days) and is doing better, but still has the apnea, although it has definitely improved. He periodically has dilated pupils, but tonight they are so dilated I can barely see his iris. They are huge.

 

I just don't understand why they could be dilated one day and not he next, then dilated again. Can anyone explain this to me? I know giving Ibuprofen can help, but I don't understand what is going on. If his basal ganglia is inflamed, how could the pupils go from regular size, to dilated, back to normal, so quickly.

 

My sister's daughter is also PANDAS and she says some days her pupils are huge, some days they are normal. It sems that they wouyld be huge, then slowly go back to normal size, not jump around.

Thanks so much for any input!!!

Colleen

[Dedee]

This is just my guess. I wonder if there is some sort of stimulation of the sympathetic nervous system when the exposure to strep causes an immune reaction. When the sympathetic nervous system is stimulated is does cause increased heart rate, dilated pupils, and other symptoms preparing the body for "flilght". I can't figure out why it would be there some days and not the next. That is very odd. There is so much we don't understand about the illness. Hope things improve soon.

 

Dedee

[Lacy]

I'm not certain this fits with what you're seeing, but anytime our DD goes into a fit of rage her eyes do some strange things... of course the blank "nobody is home" wild stare, but we notice that one of her eyes will go sort of "lazy" and drift a little. When I see that in her eyes it absolutely upsets me to no end.

[Indigo]

I noticed this in my dd with me having strep this month...it seemed to get worse her first couple of days of prednisone and seems to be correlated to extreme hyperactivity here.

[colleenrn]

Thank you to everyone for your responses. His pupils seem normal today. I am going to monitor them daily and see what happens.

Colleen