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Nystagmus


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I posted last night with the topic titled "eyes shaking". Changing that now to Nystagmus "eyes moving side to side".

 

In the light of day I talked with ds5 this morning and he discribes what I researched and found to be something called Horizontal Nystagmus. A few times a day his eyes involuntarily move side to side (he says his eyes are confused) and he has to shake his head to make it stop.

 

We just started him on bioxin 10 days ago and have been giving him a dose of benadryl each night before he takes the med because we are worried about alergic reaction (he had a reaction to the zith we tried a few weeks ago)

 

Has anyone heard of this happening with a PANDAS in general? A reaction to the bioxin?

 

I am worried and don't know if I should be taking him to Nuro for MRI or to eye doc. Have a call into Dr. T but thought maybe you guys had some thoughts on this.

 

Thanks, Kari

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I posted last night with the topic titled "eyes shaking". Changing that now to Nystagmus "eyes moving side to side".

 

In the light of day I talked with ds5 this morning and he discribes what I researched and found to be something called Horizontal Nystagmus. A few times a day his eyes involuntarily move side to side (he says his eyes are confused) and he has to shake his head to make it stop.

 

We just started him on bioxin 10 days ago and have been giving him a dose of benadryl each night before he takes the med because we are worried about alergic reaction (he had a reaction to the zith we tried a few weeks ago)

 

Has anyone heard of this happening with a PANDAS in general? A reaction to the bioxin?

 

I am worried and don't know if I should be taking him to Nuro for MRI or to eye doc. Have a call into Dr. T but thought maybe you guys had some thoughts on this.

 

Thanks, Kari

 

Not sure if you saw my other reply... but i would watch the benedryl

and i have a cousin who i think had something simialar to that and needed surgey to tighten the muscle..i think

i would start with eye doc... you can eleminate something and they'll see you before a neuro will...

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Thanks, I just read your other post. When I checked earlier I did not see it.

 

I will stop the benadryl immediatly. To be honest, the least of my worries right now is another tic. (can't believe I say that)

 

Jack's twin brothers first pandas symptom was that he saw a big black ball in his eye. Both boys have eye disturbances and say their eyes hurt sometimes. but the involuntary side to side movement is new.

 

Was just telling Dr. T in an e-mail that I used to be a much calmer mother but ever since PANDAS hit, I seem to panic over just about anything. Very uncomfortable way to live!

 

Thank you for the advise.

 

Best, Kari

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Well if it makes you feel better and i'm sure the board will be glad to know, i just picked up a perscrition for xanax, gonna take one right now!!!

I was never overprotective either...maybe that's the problem

his 1st couple of streps i didn't know what they were and figured he was just sick, i don't run to the docs everytime i'm sick...but after i got the pattern down i go...

 

 

Thanks, I just read your other post. When I checked earlier I did not see it.

 

I will stop the benadryl immediatly. To be honest, the least of my worries right now is another tic. (can't believe I say that)

 

Jack's twin brothers first pandas symptom was that he saw a big black ball in his eye. Both boys have eye disturbances and say their eyes hurt sometimes. but the involuntary side to side movement is new.

 

Was just telling Dr. T in an e-mail that I used to be a much calmer mother but ever since PANDAS hit, I seem to panic over just about anything. Very uncomfortable way to live!

 

Thank you for the advise.

 

Best, Kari

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Well if it makes you feel better and i'm sure the board will be glad to know, i just picked up a perscrition for xanax, gonna take one right now!!!

I was never overprotective either...maybe that's the problem

his 1st couple of streps i didn't know what they were and figured he was just sick, i don't run to the docs everytime i'm sick...but after i got the pattern down i go...

 

 

 

 

 

LOL...I just took a xanex an hour ago!!

Kari :lol:

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Sounds like we have a variation of your eye movement. For both of our sons, their eyes have gone through what I call tic phases where their eyes move up and to the side in one motion. It is over and over again and always worse when watching TV or at a movie theater. For us, the eye movement is a tic and is part of their PANDAS stuff not triggered by any meds.

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Thanks, I just read your other post. When I checked earlier I did not see it.

 

I will stop the benadryl immediatly. To be honest, the least of my worries right now is another tic. (can't believe I say that)

 

Jack's twin brothers first pandas symptom was that he saw a big black ball in his eye. Both boys have eye disturbances and say their eyes hurt sometimes. but the involuntary side to side movement is new.

 

Was just telling Dr. T in an e-mail that I used to be a much calmer mother but ever since PANDAS hit, I seem to panic over just about anything. Very uncomfortable way to live!

 

Thank you for the advise.

 

Best, Kari

 

Hi Kari,

 

My ds16 has had the symptom of eye pain with all 3 of his exacerbations since age 8. No one has ever put their finger on why he has it but after Dr. T tested him for mycoplasma (which he was positive both IgM & IgG) I did more digging into its symptoms and found eye pain to be among them. My son's eye pain always remits with advil. He also has an eye rolling (one side to the other) tic. During his middle school exacerbation (before we ever knew to look for mycoplasma) both the eye tic and the eye pain were far more prevalent. Just something for you to keep in mind.

 

Best wishes,

Gayle

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I posted last night with the topic titled "eyes shaking". Changing that now to Nystagmus "eyes moving side to side".

 

In the light of day I talked with ds5 this morning and he discribes what I researched and found to be something called Horizontal Nystagmus. A few times a day his eyes involuntarily move side to side (he says his eyes are confused) and he has to shake his head to make it stop.

 

We just started him on bioxin 10 days ago and have been giving him a dose of benadryl each night before he takes the med because we are worried about alergic reaction (he had a reaction to the zith we tried a few weeks ago)

 

Has anyone heard of this happening with a PANDAS in general? A reaction to the bioxin?

 

I am worried and don't know if I should be taking him to Nuro for MRI or to eye doc. Have a call into Dr. T but thought maybe you guys had some thoughts on this.

 

Thanks, Kari

 

My son has one eye that bounces back a bit when he looks far to onside. The doctor is aware of it but didn't seem to think it was a big deal.

 

One of the first things I noticed when my son was 7 was that he would shake his head side to side. He told me he had to do it to "keep the color in the world". He didn't do it for very long though. It was also while he was watching TV.

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I posted last night with the topic titled "eyes shaking". Changing that now to Nystagmus "eyes moving side to side".

 

In the light of day I talked with ds5 this morning and he discribes what I researched and found to be something called Horizontal Nystagmus. A few times a day his eyes involuntarily move side to side (he says his eyes are confused) and he has to shake his head to make it stop.

 

We just started him on bioxin 10 days ago and have been giving him a dose of benadryl each night before he takes the med because we are worried about alergic reaction (he had a reaction to the zith we tried a few weeks ago)

 

Has anyone heard of this happening with a PANDAS in general? A reaction to the bioxin?

 

I am worried and don't know if I should be taking him to Nuro for MRI or to eye doc. Have a call into Dr. T but thought maybe you guys had some thoughts on this.

 

Thanks, Kari

 

Hi Kari,

So sorry your son is going through is !

Don´t know if it might help you, but I thought it would be worth mentioning, that my son is complaining of floaters and presenting with what looks more like Opsoclonus Myoclonus than nystagmus during especially the beginning of every one of his PANDASexcerbations -

Please let us know, what Dr. Ts thoughts are on this -

Best wishes to both of you !

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Interesting. This is exactly what my ds6's one and only tic is like. He opens his eyes very wide and then rolls his eyeballs up and to the side in one motion. Sometimes he lowers his head a bit at the same time. He does this pretty much in exact proportion (frequency) to how badly he seems to feel. He's not self conscious about it, luckily, but it does look kind of strange. I've asked him what it was about and he just says that his eyes make him do it. He doesn't tic a lot even on his worst day, maybe once per hour or so on average.

 

I've found it kind of funny because it was the exact same tic I had as a teenager and it drove me mad at that time. My Mom always bugged me about it. I always claimed it was my contact lenses bugging me because I didn't want to be thought of as ticcing.

 

 

Sounds like we have a variation of your eye movement. For both of our sons, their eyes have gone through what I call tic phases where their eyes move up and to the side in one motion. It is over and over again and always worse when watching TV or at a movie theater. For us, the eye movement is a tic and is part of their PANDAS stuff not triggered by any meds.
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Interesting. This is exactly what my ds6's one and only tic is like. He opens his eyes very wide and then rolls his eyeballs up and to the side in one motion. Sometimes he lowers his head a bit at the same time. He does this pretty much in exact proportion (frequency) to how badly he seems to feel. He's not self conscious about it, luckily, but it does look kind of strange. I've asked him what it was about and he just says that his eyes make him do it. He doesn't tic a lot even on his worst day, maybe once per hour or so on average.

 

I've found it kind of funny because it was the exact same tic I had as a teenager and it drove me mad at that time. My Mom always bugged me about it. I always claimed it was my contact lenses bugging me because I didn't want to be thought of as ticcing.

 

 

Yes ! This is exactly, what it looks like : "He opens his eyes very wide and then rolls his eyeballs up and to the side in one motion."

DS9 has eye tics too, but they look quite different : Only blinking.

The difference between the two are :

He feels an urge and is aware, that/when he is ticcing, and is able to stop the tics (for a while).

He doen´t feel an urge and isn´t aware, that/when he presents with the very wide opening of his eyes and then rolling his eyeballs up and to the side in one motion (Opsoclonus Myoclonus) - and he is not able to control it in any way.

(By the way I - diagnosed with Multiphasic EncephaloMyelitis due to strep - are having both nystagmus and myoclonus in the muscles around the eyes (but no tics), whenever I am exposed to strep, mycoplasma etc.. Pretty family :-) )

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I never knew this had a name! I will have to look up Opsoclonus Myoclonus. Is it considered a tic, or something else? If this is not a tic, then I guess neither of my boys has ever had tics since this is the only one we've seen (and only in one of the kids.)

 

Interesting. This is exactly what my ds6's one and only tic is like. He opens his eyes very wide and then rolls his eyeballs up and to the side in one motion. Sometimes he lowers his head a bit at the same time. He does this pretty much in exact proportion (frequency) to how badly he seems to feel. He's not self conscious about it, luckily, but it does look kind of strange. I've asked him what it was about and he just says that his eyes make him do it. He doesn't tic a lot even on his worst day, maybe once per hour or so on average.

 

I've found it kind of funny because it was the exact same tic I had as a teenager and it drove me mad at that time. My Mom always bugged me about it. I always claimed it was my contact lenses bugging me because I didn't want to be thought of as ticcing.

 

 

Yes ! This is exactly, what it looks like : "He opens his eyes very wide and then rolls his eyeballs up and to the side in one motion."

DS9 has eye tics too, but they look quite different : Only blinking.

The difference between the two are :

He feels an urge and is aware, that/when he is ticcing, and is able to stop the tics (for a while).

He doen´t feel an urge and isn´t aware, that/when he presents with the very wide opening of his eyes and then rolling his eyeballs up and to the side in one motion (Opsoclonus Myoclonus) - and he is not able to control it in any way.

(By the way I - diagnosed with Multiphasic EncephaloMyelitis due to strep - are having both nystagmus and myoclonus in the muscles around the eyes (but no tics), whenever I am exposed to strep, mycoplasma etc.. Pretty family :-) )

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Sounds like we have a variation of your eye movement. For both of our sons, their eyes have gone through what I call tic phases where their eyes move up and to the side in one motion. It is over and over again and always worse when watching TV or at a movie theater. For us, the eye movement is a tic and is part of their PANDAS stuff not triggered by any meds.

 

Ok, now that you guys describe it in more detail, my son has his version of this as well. He actually look down and to the side though, then turns his head like he is looking over his shoulder. Interestingly his doctor noted the nystagmus in his chart last summer but then it was just that while checking his eyes we noticed that one eye would bounce a bit when he would look far to the left. Now I realize that the looking thing/tic, which didn't start until around Christmas, is also to the left.

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