Congenital Ocular Motor Apraxia or Oculomotor Apraxia (OMA) is a rare disorder where the person is unable to move the eyes smoothly to follow objects horizontally.
Still confused?
Think of a woman passing by in front of you. The person is walking from left to right and you follow her with your eyes, but don't move your head! Just move your eyes from left to right slowly, following the person walking. Usually people can do this without any problem. People with Oculomotor Apraxia can't. Their eyes will follow the person, but couple seconds later the eyes jerk, making them lose sight of her, having to move their heads to try to catch up to where she is now.
To make things worst, the head will be able to move fast enough to the right to catch up, but their eyes are a bit slower, so the head will move first, and then the eyes will follow a second later. As an example, think that you are staring at something in front of you, like a painting in the museum. Then suddenly your friend, who is on your right, talks to you. You will turn your head AND your eyes to the right, to look at your friend. Often, people with Oculomotor Apraxia aren't able to move the head AND the eyes at the same time. The eyes are slower, so even though they mean to turn head and eyes at the same time, only the head will do it at first (while the eyes are still staring at the painting) and then a second later the eyes will turn to match the head position. Sometimes their heads will turn too much to the right, (because the head is turning blindly, without sight) passing the friend's position, but once the eyes have turned and located the friend, then their head will readjust the position, so that now both the head and the eyes are facing the friend.
So, is it an eye problem?
The problem is manifested in the eyes, however the eyes themselves are not the problem. The brain, more specifically the cerebellum, is the one responsible of coordinating the eyes movement. Children with OMA present an underdeveloped cerebellum. In the 9th gestational week the Cerebellum Vermis begins forming until the entire vermis is closed by the end of week 15th. At some point during this time the cerebellum won't form as it should be in children with OMA. Usually the only problem is that the Cerebellum Vermis will be smaller. If the brain presents other issues, and/or there are missing parts, then you will have a different diagnosis. We were able to learn that Patrick had hypoplasia (a smaller cerebellum) thanks to the MRI that was performed when he was about 11 months old.
What causes this condition?
Why people are born with this condition is still a total mystery. Some specialists have considered that genetics plays a role, but there are only very few cases of siblings with the same problem to make genetics the origin of the disorder. It is important to point out, though, that most kids with Joubert Syndrome have Oculomotor Apraxia, and that Joubert Syndrome IS genetic. So if you have Joubert Syndrome AND Oculomotor Apraxia, good chances are that your siblings have the same issue. But, if you don't have Joubert Syndrome, then you are probably the only one in your family with OMA.
Can it be cured?
Some parents choose to have their children taking visual therapy, but some other parents (and doctors) believe that Oculomotor Apraxia can't be cured and so, there is no point on the therapies. It's been proved though, that the problem improves through the years, so by the time they are young adults the eyes will be significantly better. Some believe it is because the underdeveloped part will continue growing in kids with OMA the first years of life, almost to the point that it gets to be perfectly normal. Others believe it's simply because people just learn to compensate, like by learning to move the head slower to match the eye movements at all times. So it will likely get better, although it won't disappear completely.
Is there anything I can do to help my child?
Whether you choose to have your child taking visual therapies or not, the visit to the eye doctor is important so that he can check for any other eye issues your child may have or may develop in the years ahead. A neurologist has to check your child for diagnosis, and he will usually recommend you to an eye doctor for follow ups. Along with the eye/brain issue, your child may present some developmental delays, mostly due to hypotonia (low muscle tone). Perhaps your child is too young to take any visual therapies and to be helped with eye/brain coordination, but he is never too young to start addressing the developmental delays. So this is my best suggestion I'm going to give you: Take care of any developmental delays, sooner rather than later. Whether is speech delay, motor delay, social skills... all these can be addressed and timing IS important. The best part is that you can find online many ways to help your child in this regard without costing you any money. Of course, there is also the great help from the Early Intervention Services offered in each state, which I can only say great things about, and which has been provided to us at no cost.
Still confused?
Think of a woman passing by in front of you. The person is walking from left to right and you follow her with your eyes, but don't move your head! Just move your eyes from left to right slowly, following the person walking. Usually people can do this without any problem. People with Oculomotor Apraxia can't. Their eyes will follow the person, but couple seconds later the eyes jerk, making them lose sight of her, having to move their heads to try to catch up to where she is now.
To make things worst, the head will be able to move fast enough to the right to catch up, but their eyes are a bit slower, so the head will move first, and then the eyes will follow a second later. As an example, think that you are staring at something in front of you, like a painting in the museum. Then suddenly your friend, who is on your right, talks to you. You will turn your head AND your eyes to the right, to look at your friend. Often, people with Oculomotor Apraxia aren't able to move the head AND the eyes at the same time. The eyes are slower, so even though they mean to turn head and eyes at the same time, only the head will do it at first (while the eyes are still staring at the painting) and then a second later the eyes will turn to match the head position. Sometimes their heads will turn too much to the right, (because the head is turning blindly, without sight) passing the friend's position, but once the eyes have turned and located the friend, then their head will readjust the position, so that now both the head and the eyes are facing the friend.
So, is it an eye problem?
The problem is manifested in the eyes, however the eyes themselves are not the problem. The brain, more specifically the cerebellum, is the one responsible of coordinating the eyes movement. Children with OMA present an underdeveloped cerebellum. In the 9th gestational week the Cerebellum Vermis begins forming until the entire vermis is closed by the end of week 15th. At some point during this time the cerebellum won't form as it should be in children with OMA. Usually the only problem is that the Cerebellum Vermis will be smaller. If the brain presents other issues, and/or there are missing parts, then you will have a different diagnosis. We were able to learn that Patrick had hypoplasia (a smaller cerebellum) thanks to the MRI that was performed when he was about 11 months old.
What causes this condition?
Why people are born with this condition is still a total mystery. Some specialists have considered that genetics plays a role, but there are only very few cases of siblings with the same problem to make genetics the origin of the disorder. It is important to point out, though, that most kids with Joubert Syndrome have Oculomotor Apraxia, and that Joubert Syndrome IS genetic. So if you have Joubert Syndrome AND Oculomotor Apraxia, good chances are that your siblings have the same issue. But, if you don't have Joubert Syndrome, then you are probably the only one in your family with OMA.
Can it be cured?
Some parents choose to have their children taking visual therapy, but some other parents (and doctors) believe that Oculomotor Apraxia can't be cured and so, there is no point on the therapies. It's been proved though, that the problem improves through the years, so by the time they are young adults the eyes will be significantly better. Some believe it is because the underdeveloped part will continue growing in kids with OMA the first years of life, almost to the point that it gets to be perfectly normal. Others believe it's simply because people just learn to compensate, like by learning to move the head slower to match the eye movements at all times. So it will likely get better, although it won't disappear completely.
Is there anything I can do to help my child?
Whether you choose to have your child taking visual therapies or not, the visit to the eye doctor is important so that he can check for any other eye issues your child may have or may develop in the years ahead. A neurologist has to check your child for diagnosis, and he will usually recommend you to an eye doctor for follow ups. Along with the eye/brain issue, your child may present some developmental delays, mostly due to hypotonia (low muscle tone). Perhaps your child is too young to take any visual therapies and to be helped with eye/brain coordination, but he is never too young to start addressing the developmental delays. So this is my best suggestion I'm going to give you: Take care of any developmental delays, sooner rather than later. Whether is speech delay, motor delay, social skills... all these can be addressed and timing IS important. The best part is that you can find online many ways to help your child in this regard without costing you any money. Of course, there is also the great help from the Early Intervention Services offered in each state, which I can only say great things about, and which has been provided to us at no cost.
I'm a step-mom trying to help my step-son who was diagnosed at about 2 with OMA. Well he's 6 now and since his mom didn't seemed to concerned with it then, I'm taking action as best I can to help him with his needs in this. Can you give me any advice on how I can help him? He also has adhd which makes it all the more frustrating. I'm best to reach through my gmail. rclemens86@gmail.com
ReplyDeletethanks.
Hi Racheal!
DeleteThank you very much for taking the time to read my blog and write to me. It's sad to hear that your step-son's mother didn't do much to help him, but it is amazing that you are trying to help him now. Sorry it's taking me long to reply -I recently gave birth to my second baby, but please expect an email from me in your personal account in the next few days.
Take care!
Lupita
PS. My sister has a son with adhd and he is doing very well now (he is 11), so I will have a few suggestions on that as well.
Thank you for writing this blog! I have a 5 month old son who has been experiencing developmental delays. It was only recently we found out that both my husband's sister and cousin have OMA so now we're waiting to have our little Ethan assessed. I've been trying to research it and your blog is the best I've found. Everything is so clearly written out and you have such a wonderful positive outlook. Patrick looks like such a handsome smart little guy. I don't know yet if our son actually has OMA, but if he does I feel better after reading your blog!
ReplyDeleteHi Kat! Thank you for your kind comment, it made my day! Hearing from you that my blog is the best info you've found, just gave me more fuel to keep writing - there is so much to tell! I'm sorry to hear about your little Ethan, but I think it's great that he is only 5 months and you are already getting him check out and looking for ways to help him... he is lucky to have a mommy like you. Please let me know what the doctors find (you can send me an email through the contact form on the left hand side) I'm also curious to hear more about your husband's sister and cousin. Thank you!!
DeleteThis comment has been removed by the author.
ReplyDeletethanks it was great help for to understand the disease.
ReplyDeleteHello. My 17 months old daughter was recently diagnosed with oculomotor apraxia...I'd love more information and suggestions on this matter. Zenobiamcrae@gmail.com
ReplyDelete