Eye movement symptoms

[momofadult]

I am wondering how common eye movement symptoms are in PANS, how our specialists are explaining it and how they are treating it? Mommy2MCL described eye rolling and blinking in her child. My adult PANS son with other acquired movement problems began 2 years ago having eye blinking, then eye rolling accompanied by blepharospasm and now he also has opsoclonus where his eyes move uncontrollably in all directions. Presumably it's from the basal ganglia involvement and as his brain heals I hope this problem wil disappear. No docs have made any recommendations to help him with this specific problem other than artificial tears for his accompanying dry eyes. What has been the experience of others?

[Mommy2MCL]

I am by no means an expert but my daughter started overnight with the involuntary eye movement. Her's mainly moves to the left and I can in now way do my eyes the same. As I have researched and researched it seems many cases start out with the eye roll. I am interested in finding out too.

[rowingmom]

Your son's eye movement seems more uncontrolled than the Tourette's-like ticcing that DD deals with. Her blinking and eye rolling seem to be somewhat controlled in that she is able to withhold them for some period of time before her premonitory sensation forces her to do the movement.

[momofadult]

Thank you for describing your DD's eye movement issues. Yes, DS's eye problems are involuntary and bothersome as they happen all throughout the day indoors or outdoors. He has adapted to this by keeping his eyes squinted or closed, or covered, but it doesn't stop it from happening. Its not a very socialable or safe adaptation, but there seems to be nothing else he or anyone can seem to do about it. I feel badly for him because he wants to engage with people, but it doesn't appear that way. Writing takes him three times as long because his eyes betray him and forces him to stop frequently. Riding a bike is no longer safe as he bumps into things just walking around the house. Because of his autism he can't explain subjectively what he is experiencing. He saw a neuro-ophthalmologist but he had nothing to offer except for lubricating eye drops. Just wondered what others experiences have been.

[Mommy2MCL]

When my DD started we were also told allergies. For the longest time we thought that because she had an ear infection and seemed to be congested too... In July I called our Pedi and he prescribed Azelastine... Still thinking it was allergies. The azelastine did not stop the eyes but slowed them down and you could tell they helped. Another reason we kept up with the thought it was mainly

 

On my original post a mom posted why we may have seen relief from an antihistamine. Let me find it...

 

From Qannie47

 

I have come to have a very high respect for what Strep can do....You posted pos Strep + concurrent Sinus infections. I have learned that Sinus infections are also Strep. So there is your history. It also appears that the Azalstine provides a fair amount of relief for your dd. If you look at some recent posts, you will find that some are finding relief from meds that contain antihistamines...I agree that you should pursue a possible Pandas connection. If you decided it is not applicable, you can rule it out. On the other hand, if caught early, you can save yourself a lot of time and aggravation running to 12 different doctors. The upside also is that it appears that with Pandas, the earlier it is caught and treated, the better. Good Luck!