Just finished hearing from Dr. Hertle.
Well this live blogging thing is going to be hard. There is so much that I still have to process.
1. It’s freakin emotional to hear even INTEREST about this condition from a doctor. I have always wanted to learn more from my optometrist about the medical background but thought that maybe they just weren’t interested it taking the time to tell me. But really, it looks like most doctors are just really ignorant about it.
2. The little medical knowledge I have of my particular nystagmus is probably wrong. Or at least it was just a best guess by me based on things I had read. And given all of the misinformation there is out there, this is probably not accurate. I am making a mental note to revise the little medical information I have on this blog.
3. I learned a lot more about treatment. Treatment is something that I’ve had mixed feelings about. This was definitely educational, and I will go into more detail about what I learned in a later post.
I think what I really took from listening to Dr. Hertle is that I want to get tested by a specialist. Not necessarily because I feel that I need a specific treatment, but at least so that I can learn enough to make an educated decision about whether or not I want to receive any sort of treatment. If nothing else, it’s comforting just to be able to fully understand what is happening with my own body, something that I think a lot of optometrists/ophthalmologist don’t really understand.
Maybe that will be my next nystagmus adventure…
Hi Ann, my daughter has had eye rolling since she was 12 months old. Her eyes would roll in the back of her head. The doctor said she had petite mal seizures. Her neurologist put her on depakote for seizures when she was 5. It never worked. It did seem to slow them down some. She is now 16 but way behind in her learning. She has had trouble in school concentrating and focusing.
Well, last year she had a 24 hour test done in the hospital. There was something about her eyes that I never noticed before. They were moving up and down very rapidly. Well, for some reason the doctor was unable to see this movement. I told him about it and that I called a nurse in there to witness it. He felt that it was a tic of some sort or just another form of seizures. Now, she has two types of eye movements.
I done some research on the computer today and found the word, “Nystagmus”. I watched a video on youtube and how a doctor would have a child watch his finger. The childs eyes started to go from side to side. I tried that with my daughter and her eyes went up and down…she couldn’t follow my finger. Strange how her pedatrician had my daughter follow her finger many times and never noticed it.
I am beside myself right now because my child has been on medication after medication. She has other issues as well. I would LOVE to know what has caused this and to talk to others that have to deal with this same situation.
A Concerned mother.
Hi Renee! My name is Kelly I’ve had Nystagmus and Petit Mal Seizures since around the same age as your daughter. I’m also completely deaf in my left ear, and I am on the autism spectrum. (PDD-NOS). There are a few doctors that know a lot about nystagmus. Only a few. Dr. Hertle at Akron Children’s Hospital (he sees adults too) is one of them. Another is Lou Deloso -a research specialist out of the VA. Not sure if he is still practicing though. There is also a neurologist by the name of Max Wiznitzer at University Hospitals. I’m sorry that these are all in the Cleveland area. I’m blessed to live in an area with a LOT of doctors and mom who never quit searching for what was ‘wrong’ with me. What you should do is go to the Nystagmus Network page http://nystagmus.org/new/
You should really try a chiropractic neurologist. They wont use drugs, but will give you answers and treatments that you can do at home. look one up near you at http://www.acnb.org/locator/index.php and good luck!
Hello, my name is matt and my daughter jordan has had 2 surgeries for nystagmus done by dr.hertle and I am wundering if he is still practicing because after our last trip to pitt. We were told he was no longer working.. please let me know if this is true or if u have any info that may help my daughter..we thought dr. Hertle was great..thanks
Hi. My daughter has autism and we noticed that she always do side glances. Like the black of her eyes are going to the corners of her eyes. We don’t know if it’s because of autism or if there’s something wrong with her vision. Could it be an involuntary movement too? Thanks.
Almost a year since your last post and I don’t know if you plan to continue with this blog or not but I wanted to thank you for it. My name is James, I’m from Chile, an underdeveloped third-world country, where having a Nystagmus is the same as telling you that your life is gonna suck big time, because nobody knows nothing, not even the doctors, the good thing is that I had one of the best of the country who even made a conference about my case.
Nowadays I’m in the US, to be more specific in Texas, and reading things about nystagmus, like this blog make me realize that there is a lot of people there that are frightened about this. So If this is of any help I will tell you a little bit about me.
I’m 27 years old, and I was diagnosed with nystagmus since I was a very small child, Like I already wrote, in Chile there is not that much information about this. I grew up not knowing what it meant, only that I couldn’t look at things unless they were very close to me. Wearing glasses was another problem, people tends to think that if you are wearing glasses you should be seeing everything perfect, that’s why you use them, no?. But nystagmus is not corrected by glasses, they are for the astigmatism or short sight, not for seeing right, but to not seeing so wrong.
Well, for those of you that are frightened about your babies possibilities, let me tell you, you get used to it. Having a nystagmus makes your life hard, but you manage to work it trough. I went to university in 2004 and got my BA in Literature (yeah, the worst field you can choose with all the problems in your eyes), but also I applied for master and in 2009 I got my M.A. in Hispanic American Literature. Well I told you now I’m in Texas, because in 2011 I won a Fulbright scholarship, and another equally important scholarship from my country to study my PhD in Literature here. The field I choose was a hard one, but I’m here, I have been the best of my class many times, and I never had the necessity for special accommodations.
Nystagmus doesn’t stop your life or your opportunities, tell your sons and daughters that there is a lot of effort implied, by it pays back well, when you can say that you have a happy life WITH this condition.
Hi ,this is dip here) frm india ! I m 17 yrs old and have INS since birth, to speak of my early years, they actually went quite smoothly ok, i was average in studies and ‘ actually everything else’ , inspite of this disorder , i was actually the class monitor, cricket captain, basketball team member , and the class leader of the most prestigious school of our locality, ( abt that cricket part , i could hardly hit a ball ;P , but was a decent baller ) ,yeah it is true i had to face quite a lot of sceptism for many mommentary inabilities due to my considerably weak eyesight and my ‘ dancing eyes’ ( as remarked by my haters behind my back ) but i alwayz bypassed such stances with a few sad reflecting momments on myself and as unimportant, ineffective remarks ,Towards the end of schoolife i did go a little below the popularity radar, but then again . I was the one making it happen so, coz i lost a considerably high amount of dioptres in , C-o-d mulltiplayers and facebook ( of course 😉 ) , to fuel this stage , i also suffered frm a depressed kind of mindstate , due to , reasons like , what the future holds for me .and if i will ever be able to live a dignified lile,
Right now i am in jr college , and leading a kind of bittersweet life , of which i would love to speak some other day ,bdw . For all parents out there with children suffering with this disorder i would only say ‘ let them be themselves and yeah dont make them self-consious of their condition on a regular basis, this will only hamper their natural mental growth . And yeah dont be extra-firm with them regarding education or other visually challenging tasks, rather support their aims and dreams , coz the real struggle with life wìth nystagmus starts not during childhood but only at adoloscence and teenage ,
Really Appreciate your patience in reading my account,:)
Dr. Hertle is practicing in Akron Ohio at Akron children’s hospital.mjust FYI. Dr hurtle and dr burnstine are my sons drs.
My son had nystagmus surgery at age 11mths in NYC we are from uk, it cost quiet a lot. He had very bad head turns both right and left. He only had nystagmus and head turns, the surgery went well, he can focus better and vision improved, but the nystagmus sugery now has caused him to have strabismus, I feel very disappointed as it has gotten worse, he still has slight left head turn. Some of family blaming me saying that dr has caused more damage and his eyes was not like this before. I am now seaching again for drs as there is none in uk who can help. I heard of dr Hertle and dr Bernstine. I need advise