Continuous Eye movement. Any ideas?

[Bridget]

My 5 year old son has been diagnosed with PANDAS since last October. He presents typically with motor tics, vocal tics, anxiety and rage. His tests have shown both strep (off and on) ,a previous mycoP infection and extremely high EBV antibodies. Last week we started him on a new protocol from Dr. Alarcio: Rifamdin, Cefdinir, Leucovorin, Advil, Vit D, Mutlivitamin, Fish Oil, Culterelle and Florastor. A few days in his eye rolled back while at school and he became unresponsive for about 30 minutes. We took him to the hospital and he tested positive for strep with no other indication for why it happened. They switched him to clindamycin to fight the strep. That was 7 days ago. For the past two days he has had continuous eye movement. Mostly side to side but also in an arc. It is all the time. He is amazingly not complaining about it but he is struggling because of it. He fell over at school yesterday probably from being dizzy. He has an EEG scheduled for tomorrow and a sleep study in about a month.

 

Have any of your children had this sort of continuous eye movement either due to the PANDAS or perhaps a reaction to one of/combination of the medications he has been on. We removed everything except the clindamycin and advil yesterday just in case. I am just at a loss for how to help him. He has had eye tics in the past but not like this. We are waiting to hear back from our pediatrician who is consulting with his neurologist. Hopefully will hear something back today.

 

Thanks!

[rowingmom]

One of DD11's eye tics (usually blinking) has included an eye roll. She doesn't usually have eye tics unless she is ticcing very badly, but when the eye rolling starts she is unable to read or concentrate on anything visual - as you can imagine. She hasn't mentioned eye rolls causing dizziness, but I really don't see how it couldn't. I didn't ask her about this specifically.

 

This has only happened a couple of times for her, and they have both been during herxheimer reactions from increased/changed abx/herbal protocols. These reactions usually start between 1-5 days after the medication change. DD11's motor/vocal ticcing is highly correlated with die-off or herxheimer reactions. At the moment we are weaning off combination abx for lyme/bartonella and her ticcing is almost non-existant. 2 months ago she was having trouble both speaking and reading.

 

We try to increase new protocols slowly and wait until the initial die-off reaction has quieted down before we increase medication/herbal remedy/probiotics again. It usually takes a week of increased detoxing (herbal, epsom salt baths, lemon juice water) before her ticcing has calmed back down.

 

You have made a lot of changes all at once, with the addition of 2 abx and two different probiotics, and I would image there has been a large die-off as a result. By adding more than one thing at a time, you don't know the culpret. I think I would ask your doctor if you could add these new medications in slowly. It helps to daily chart (excel) symptoms/reactions from 1-10, making notations on medication changes.

Edited April 24, 2013 by rowingmom

[jtp]

My son (almost 13) first episode with PANS at age 8. His most prominent symptoms were tics(mild impulsivity anger, adhd), eye blinking, nose scrunching,smelling hands, neck rolling but towards the end of his first episode came the eye rolls for us it was scary. It looked like he was having a seizure. We thought he was just going through a phase with the tics. We then got an appt with a neurologist who said it was just transcient tics not a seizure. At that time I believed her because the last tic was the eye rolling which was severe at first but as time progressed it slowly faded away.

 

At age 11 this whole scenario started again I knew then it was PANS(mycoplasma trigger the 2nd time around). Again the tics began and the last tic was the eye rolling I watched it increase and peak for about 2 weeks then slowly start fading away. We brought him to a new Neurologist and this Dr.diagnosed him with either Parainfectious OMS or Sydenham's Chorea.

 

Since he's been on abx no ticcing and we've been receiving treatment with a PANS Dr.

 

I would definitely have the neurologist check him out since he was unresponsive for 30 mins.

[nicklemama]

I would consult with a neurologist to be on the safe side. Back and forth eye movements are signs of neurological issues.

[4Nikki]

DD couldn't look straight and could not focus at her onset during for first 4 months. If she tried to look at you her eyes would roll and even with lazy eye movements mostly she seemed incoherent. I even tried to hold her head but nothing could get her to focus or look straight. I think it was the abx was cleared it up, but it could have been up by it self or because we started her on GF & Sugar free dier not really sure because we hadn't had any testing.

[Crunchfly]

Could it be nystagmus?

 

http://www.nlm.nih.gov/medlineplus/ency/article/003037.htm

[norcalmom]

google jeavons syndrome. Maybe you can find some videos for it. My son had a compulse -tic( compulsion to too int the sun, or at bright lights, and it looked like a tic ) which is how I found out about this. DS doens't have it but, I remebered it when I saw your post. here is breif description from wikipedia:

 

Eyelid myoclonia, not the absences, is the hallmark of Jeavons syndrome. Eyelid myoclonia consists of marked jerking of the eyelids often associated with jerky upwards deviation of the eyeballs and retropulsion of the head (eyelid myoclonia without absences). This may be associated with or followed by mild impairment ofconsciousness (eyelid myoclonia with absences). The seizures are brief (3–6 s), and occur mainly and immediately after closing of the eyes (eye closure) and consistently many times a day. All patients are photosensitive.

 

I'd definately take him to a good neurologist - immediately, and consider taking him down to one or two supplement/antibiotics if you started them all at once. Then adding one at a time per week back in.

[Hopeny]

So sorry this happened. I can imagine how scary tvat must have been. i would echo getting a full neurology work up. It may be worth seeing a cardiologist as well in regards to the dizziness. My daughter fell at school (sort of fainted but without losing consciousness) . She had Lyme and strep at the time. At the time we thought it was from Lyme along with all the other weird Lyme symptoms. I hope you get some answers and help soon.

[queenmother]

I seem to recall some eye movement and blinking related to dopamine levels. Bacteria affects breakdown of dopamine and serotonin and, depending on his genetics, this could be what is happening. Wish I knew more about it but its worth looking into. So sorry for what you are going thru.

QueenMother

[tpotter]

DS's first really major flair (ended up in the hospital, ) as nystagmus like you're describing, only he couldn't stand, because he was so dizzy.

 

Turns out he had scarlet fever.

 

Sounds like possible chorea and/or tics.