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Ocular Motor Apraxia

French-mum
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Hello, my son who is now 6 months old was recently diagnosed with ocular motor apraxia. He sees perfectly well but can not follow moving objetcs with his eyes. In order to follow them, he has to move his head. I live in France where only 50 cases were described and I got in touch with a family whose 2-year old son is also affected. I would be very interested in chatting with people or families who have a member with this disease who is adult or teenager. I am indeed eager to know how my son's life will be affected by this disease.
For now, he has no other sign except a low testosterone rate, which was corrected by 2 shots last month.
Thanks for your help.

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Apraxia Pregnancy Physical therapy

4 replies

Karen421

My grandson has ocular motor apraxia. He was diagnosed at about 6 months and is now 7 years old. I'm curious, was there a reason related to OMA that they tested your son's testosterone level?
Thank you.
Karen

French-mum

We do not know if there is a link between OMA and low testosterone level. Both problems were identified separately and if your grandson had any testosterone problem, his parents would for sure have been alerted very soon (small penis size). It seems that no case has already been reported showing a connection between those 2 problems, however, doctors tend to think that they are since they are both extremely rare. Their hypothesis is that 2 rare conditions are part of a syndrome and that maybe during my pregnancy, something happened that affected these 2 domains.
I am very interested in knowing how your grandson lives today with OMA. Are there things he has difficulties to do ? How does he interact with other children ? Can he play ball with them, can he bike ? How is his reading / writing ? Is he tired when watching screens ? Do you know if some activities helped him (swimming, physiotherapy...) ? Does he need special equipements ?
thanks a lot for your reponse
French Mum

Karen421

He is doing great. He does have some trouble with team sports, but loves swimming, & he does ride a bicycle. He likes to play catch, but it's always been harder than for most children.
He was late in learning to crawl & walk, & always wanted to hold your hand. Talked at a normal age though. He does need more time than most children to answer verbal questions. You have to wait, where most children will answer quickly.
He did have physical therapy when he first started walking & for a couple of years after. Jumping was hard for him. It's apparently a common problem for children with vision difficulties, because they really want to keep their feet on the ground. Balance has been hard for him & he can't keep himself from falling the way most children can, which is why team sports are hard. He plays well with other children, but he is careful.
He wears glasses because he also has trouble with his eyes crossing. Other than that he has no special equipment.
At a young age he did a fair amount of "head jerking" to get his eyes to track better, but now it's usually only if he's tired. He doesn't seem to have any trouble watching TV or using a computer. He's a very good reader & does well in school. He's a very happy, loving little boy who doesn't seem to notice that he is any different than anyone else. His parents worry that there may be other problems that are as yet undiagnosed. We also worry about teasing at school as he gets older, but hopefully his parents will be able to help him with that.
I hope this helps you some.
Karen

French-mum

Thanks a lot Karen for all this info, which is very reassuring.
I have the same worries regarding eventual undiagnosed problems and teasing at school. I also fear that my son, being slower than the others, be penalized during school exams or just socially.
for the moment, I bring him once a week to the physiotherapist and once a week to baby swimming pool sessions. I also found an eye doctor specialised in ocular-motor troubles but haven't seen her yet. She has never seen any ocular motor apraxia case and is not sure she can really help, but I will try. In the worst case, there will be no improvement, however, it can not be of any harm and in the best case, this could help creating new connections in his brain, so we have nothing to lose !
My son is now 9 months, crawls and stands up. His head jerking is quite visible. I just hope that all these kids will run a normal life. I wish all the best to your grandson. If ever I have other questions, I will come back to you if you don't mind.
Thanks again for your help.
French Mum

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