posted
My 9y/o daughter is having uncontrolled eye movements. It started with complaints of blurry vision in April.(That's when she was diagnosed with both Lyme and RMSF.) I thought she was tired of school and pretty much blew her off.
July 1 she started to blink almost constantly and complain that her eyes hurt and were"bugging" her. Then on July 4th her eyes started to dart up to the upper right corner. They move at the same time and it's a very quick movement.(10 times in about 5-8 seconds) That same day she started twirling her eyes. They literally twirl in a clock-wise circle. This too is fast and repeats. They twirl 3-4 times each time it happens. For the first three weeks it was fairly constant. It was heart wrenching to watch. The twirling and darting decreased and then stopped. Now they are back, not as severely as they were at first but they are back just the same. She twirls her eyes at least 40-50 times a day. (She also saw a dog moving and walking but there was nothing there, this was when her Sx were at their worst)
We went to an idiot opthamologist who told me it was a tick that she had developed because I was focusing on it. We went to another neuro-opthamologist who said her eyes are fine but that she should see a neurologist. We are headed there soon.
I wanted to see if anyone else had experienced any of these symptoms. I feel very strongly that this is linked to her lyme. Please let me know if you have heard of anything like this.
Thanks, Patricia
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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posted
On occasion my eyes do that, but mine do not sound as bad as your daughters case.
Mine, when my eyes are fatigued, dart over to the right side of my vision only for a sec and then they move back. Sometimes they move upward.
I have never really been too concerned about this or talked to a doctor about this (usually cause i forget about it) but in my case, it happends not very often at all and only for 1 sec at a time.
I also have many eye problems mostly from the lyme. I can not drive because of them.
I hope your daughter's vision is ok, and these weird spazims stop!I also hope it is nothing too serious for her. Please keep us informed on how her eye health is when you talk her her doctor about this.
posted
Keebler, She is on Doxy. She was on it for a month and then went off. Sx returned and she is back on it as of 2 wks ago. I have not found a good LLMD yet. Any referrals, even in ashville or anywhere in NC (or surrounding areas)would be appreciated. We are is the Raleigh area. Thanks for all the good info.
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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posted
Keebler, Oops, forgot this question...She is very sensitive to light and sound. I am not familiar with startle reactions.
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Patricia,
I am so sorry your daughter is suffering with this symptom.
I have had bouts of NYSTAGMUS, not any where near as bad as what your daughter is going through, but it was very scary. I would get extreme dizziness with it. And I have other problems with my eyes.
Mine flares up anytime I try to go off my antiboitocs, so it is very related to my infections for me.
I hope you find a LLMD soon, keep us posted.
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
I have had Lyme since I was 4, and I have had something similar to that. It is definately not as bad as your little girl and I hope you do find answers quickly.
My eyes (vision field) tend to shake back and forth from left to right for 5-8 seconds at a time. It doesn't happen all the time.
I've brought this up to doctors before, and no one has ever had an answer for me. I hope you do.
Best wishes, Allison
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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tailz
Unregistered
posted
Both of my eyes can be lazy and can operate independently and will drift off center (outward), especially if I am tired.
I have not been able to wear my contacts either this last year. Even on abx, this symptom has yet to resolve.
Prior to my dx, I actually would hold my head to avoid blinking, too, so I wonder if subconsciously I knew it hurt to blink over my contact lenses and merely avoided doing it.
I had plenty of tears back then and could actually wear my gas-permeable contact lenses much longer than most people, at least until my retinas and tear ducts became infected.
Now I still blink infequently AND cannot wear my contact lenses due to lack of tears and discharge.
My pupils remain perpetually tiny, too, even in dim lighting. What size are her pupils?
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posted
? for all of you. As you mentioned, Keebler, we have to avoid calcium and multivitamins... when taking the doxy.
Is it advisable to take supplements or vitamins outside that 2hr time frame or should they be avoided altogether. Our pharm. suggested that they be avoided altogether but I have read so much here about how much they help. This is pretty new to us, any advice is appreciated!!!
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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posted
Patricia-sorry to hear about your child's eye problems.
I have had nystagmus in the past. My eyes would have tiny back and forth movements. I saw a neuro-opthamologist at University of Southern California (USC) who prescribed indomethacin, which is a strong non-steroidal infalmmatory. It helped my eyes alot. Maybe you could discuss this with one of your doctors.
I would personally find another neuro-opthamologist. It could be nystagmus.
Here is something on eye tics.
My seven-year-old son has, for the past three weeks, started to blink his eyes continuously.
His teacher has commented about it but he says he can't stop, as his eyes feel itchy.
I have noticed his eyes are still twitching even when he's asleep. Is there anything I can do?
Answer
The most likely explanation for your son's frequent eye blinking is that he has developed a tic disorder.
Tics are rapid, involuntary, repetitive muscular movements, usually involving the face and neck - for instance eye blinks, head tossing and facial grimacing.
Simple tics occur in about 10 per cent of the population with boys outnumbering girls three to one, and often beginning around the age of seven.
Tics are most likely to be seen when a child is bored, stressed or tired.
Although your son says his eyes are itchy, if he had another problem, such as conjunctivitis or hay fever, I would expect there to be other signs such as redness, watering or crusting affecting his eyes.
Most childhood tics disappear of their own accord, without any treatment, although this may take months or years to happen.
It's important to remember that the tics are only partly within your son's control - he may be able to stop them happening for a while but if this takes a big effort it may make him anxious and then when he feels he has to 'let go' there may be a rebound flurry of tics.
It won't help to keep telling him to stop the tic or to punish him if he continues to blink frequently.
Both you and he need reassurance that the tics will probably go away eventually.
In the meantime you could try and help by identifying any factors that seem to bring them on in your son and then try and avoid those situations as much as possible.
If he develops several different tics or if you feel they are causing emotional problems or difficulties at school, it would be worth taking him to see your GP.
Yours sincerely
The Medical Team
Hopefully you can get this resolved quickly! Best wishes and let us know her progress!
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