What are the treatments for abnormal eye movements?

Hello doctor,

I am a 26-year-old female. I just wanted to know the importance of oily fish. Does consuming sardines help improve my health?? What fish can I include in my diet to make it even healthier? What are the benefits of consuming oily fish? How many times in a week can I take it? What are the best options to include them in the diet? Can it be given to children too? What are your opinions about it?

Kindly help.

Followup1.1

Hello doctor,

Thank you for the reply.

Thank you very much. This is the father, by the way. My wife is completely unaware that both of our children have movement abnormalities, despite my repeated attempts to demonstrate to doctors that something is wrong. His two-year-old sister has the same difficulties, and they go beyond the eyes. Both of them had normal births; my wife and I are not related. Natural births, outstanding milestone achievement, both well advanced cognitively and having met their movement milestones - both were essentially pulling their heads up from the start. Son has an advanced vocabulary and amazing articulation. The daughter has different articulation but the same intelligence. Both perform well socially.

(While I write this out more, quick question. Does the attached look like telangiectasia? They have both had red rashes on their cheeks always getting more visible.) It is almost impossible to see the lines show up on camera, only a patch of red, so I adjusted the picture to try to get them to show. )

This started with my son as what appeared to be facial tics that started when sick, though I thought I was catching slight pauses in speech and also thought I noticed absence seizures (though I noticed some very similar ones happening a little over a month ago - would have sworn absence - but turns out he heard everything I was saying. Took him to the ER after this.

Originally, I thought it was an atypical absence but do not think so now. He had a routine EEG, a 36-hour EEG, and EEG during polysomnography. MRI as well. EEGs and MRI were normal, and with polysomnography they (mis)diagnosed PLMD.

Also, I thought I was seeing it on my daughter's eyelids as well - so hard to capture in a picture. Again, adjusted that is one of the sons, no adjustment very hard to make out the lines and he has a concurrent rash, maybe I can find better if it is anything close - hopefully you say it looks nothing like that.

Let me know if those pictures look anything like Telangiectasia. That has been a top concern of mine. The rest of my messages will be more succinct.

I will go into where we are today briefly starting with PLMD, his only diagnosis. Symptoms are much worse primarily during, before, and after sleep. This includes naps, though only my daughter still takes them. Movements at night were previously moving from one position with flexion or contraction of some or all parts of the body to the next. My wife’s extreme denial has led to my son only telling me about his issues, hiding from the rest of the world, though I see them all the time. I was already certain there was an issue just from subtle pauses in his speech that coincided with what was being called facial tics. For a while after EEG, sleep became the primary focus as there was not much happening outside of the and it was Cameron’s primary complaint (pain, movements). I could not understand why I could not convince a single neurologist or doctor of any kind that there was something unusual about these “tonic” movements or stiffening. The sleep study was the only test that came back showing PLMD. The PLMI was 75.4 per hour. That is off the charts for a child. Looking at the results, I saw this was calculated as PLMs/(total sleep time) but there was an equipment page that showed the EEG was “bypassed” for over three hours because of movement. Without that, the tiny graph of the EEG made it clear that there was constant muscle activity through the night. The condensed mini-chart was all black other than the times the equipment was “bypassed.” The actual calculation would come to a PLMI of over 130 movements per hour.

A sleep team agreed the numbers were impossibly high for PLMD but they did not believe anything I said about my son’s symptoms. They want him to take iron and have the sleep study again in four months. Here is what his sleep looks like right now. 99 movements in one night, primarily with head-turning being the most prominent but many other movements as well.

He is also in a lot of pain. Seems like nerve pain that is sharp and quick. He would groan in pain during a movement but it did not seem like this sharp pain lasted long. Headaches every night and my entire body hurts, especially when touched. I thought for some reason that his night movements were a rare dyskinesia. DNA tests on both kids came back negative for everything. I have been convinced constant EEG activity is likely neuromyotonia. Both kids have cramps or spasms - especially in their hands and feet. I tried endlessly to have a doctor realize there was a neurological issue my kids were facing and, for a long time after the EEG, the most prominent issue was my wife had him scared of anyone knowing. She cannot handle the thought of something being wrong with them. If they say they are in pain, she ignores them or gets mad at them. If I do anything like try to give my son Acetaminophen, she flips out and he sees it. He will only communicate any issues he has with me and hide them from everyone else.

Kindly help.

Follow up 2

Hello doctor,

Thank you for the reply.

Great news on my fears related to the rash. It sounds like you only saw the sleep video from 1 year ago. Sorry, my message was long and confusing. The second one I included shows his sleep today, which is very different. Here are 99 movements in one night from Sunday. I put them in a grid so they could be reviewed quickly to see the general types of movements and their similarities. In this one, I believe there are abnormal eye movements. He also has difficulty speaking or his voice is gone. Does the video effectively show speech changes unintentionally when he switches to noises? I have much better ones for voice issues but I thought maybe I saw some nystagmus or something in the video. There are many movements and they have evolved. Here is an example of an infrequent one. More typical will be the type of twisting movements you see in the videos. It seems like the involuntary movements have decreased while weakness has increased (difficulty in climbing stairs morning and night, in bed, out of bed, into a car, and out of the car much better there-Tylenol rest of the day. He has consistently been complaining of bad headaches every night for a long time. Dizziness has been a frequent complaint. Some strange gait and instability.

They both have cramps, particularly of the hands and feet. My daughter does not feel the need to hide when it hurts, so I do not have many videos of her complaining that her hands, feet, knees, and tongue biting hurt. Lately, the mouth has been the primary complaint. My son only wants to eat soft foods. He says it hurts to eat hard foods. Let me know if it would be helpful to have a video of anything mentioned in this paragraph. I will find the DNA report. Also, I will send you the polysomnography report. He has been moving up all night lately.

Hello doctor,

Thank you for the reply

The current suspicion is a movement disorder, not a seizure. So the eye movements do not significantly affect anything by themselves? Do the sleep movements if repeated head turning not look suspicious, combined with the unusual eye activity?

I have sent the wrong attachment. Not sure if polysomnography came through.

Now here is the video of my son’s sleep currently with timestamps as a linear version showing movement throughout the night. The following messages explain my assertions as to why the sleep study is meaningful but the conclusions are a misdiagnosis.

I will provide my reasoning behind the sleep study shortly, first some examples that are hard to ignore. The first is from last week - he asks about why he was in an ambulance.

First time I have heard him mention it in over a year and previously, he thought it was cool, and wanted to go again because he loves vehicles. This time, he asks why he was in one, if it is because he could not bite, asks if I remember when he told me his mouth hurt, and then says it hurts now.

My son has been biting on his arm and asking for a teether, bites his hands. The video after is more of the same biting from seven minutes earlier showing he was biting for a while. I have lip and tongue-biting videos going back probably about a year now.

Here is one that ties daytime to sleep. His body is twisted involuntarily and he is distressed, saying “this arm cannot get on this side. This arm should be.”

Then he starts doing this involuntary tongue sticking out or making noises and motions that I have other examples of. His body is twisted in the same way that it twists at night (perhaps more pronounced) while awake. I have many more of his body twisted during the day the same way it twists during sleep.

Now as far as the polysomnography goes, he was diagnosed with a movement disorder during sleep (extreme PLMD) because of the amount of muscle activity recorded on the EMG during his sleep study. His periodic leg movement index was 75.4/hour. I have looked up countless studies on PLMD in children, the diagnostic criteria being a PLMI above 5/hr for children. It is also a diagnosis of exclusion.

I read a lot of research studies on periodic limb movement disorder in children given his periodic limb movement index was so much higher than the diagnostic criteria. I could not find a single study of PLMD in children where the top of the range of PLMIs observed came close to my son’s. For those that did not list the range, his PLMI was greater than three standard deviations away from the mean. 75.4 is extreme for adults but off the charts for children.

My son moves enough during sleep for there to be no reason to question whether his EMG-recorded muscle activity is high enough to suggest a movement disorder. Additionally, the sharp pains that cause him to say owe coincide with movements or muscle spasms (has them all night), and being touched is often painful for him at night. Nerve pain sounds like a distinct possibility. The report also notes just some mild leg movements.

Taking into account my observations of the EMG data, it seems probable that the same doctor who signed off on a report saying “mild leg movements were observed”’ also did not analyze the electromyography. I would bet anything that the activity pattern does not match PLMD.

Putting it all together, they certainly did not exclude all other possibilities before making the diagnosis. His movements are also contrary to what they would be in PLMD. They are not primarily in the legs, frequently involve non-limbs, wake him up, he remembers them, they are synchronous, and they do not look like PLMD movements.

I believe one plausible conclusion could be an undiagnosed, extremely rare movement disorder that presents during the day and while asleep as found in some dyskinesias.

Kindly help.

Hello doctor,