From	Message
Jackie Tuesday, May 17, 2005 09:54:10	Subject: Balance with coloboma Message: My son has just recently learnt to ride his bike without stablilisers. He is nearly 7. He kept giving up all the time when we tried to teach him, but this weekend with the help of the promise of a PS2 game, he finally managed to do it! Amazing what an incentive will do. We're not sure if his coloboma had anything to do with his balance not being so good, and think this may have contributed towards the fact that he has only just mastered this task. Is there anyone out there with similar experiences? Tom also plays football and enjoys it as all his friends go, but he does have to try a little harder than some of the others as his balance is not so good. Similarly, in karate, although he has made it to an orange stripe belt and really enjoys it. Tom has a coloboma of his right eye. It would be good to hear from others to see what they think.
daniel sears Tuesday, May 17, 2005 14:52:45	RE: Balance with coloboma Message: welldone on your son. it must be good for him. actually i think i remember that balance can have something to do with a desease but i don't think colaboma (as i have never heard of it) hope your son is okay daniel
Jackie Tuesday, May 17, 2005 17:02:02	RE: Balance with coloboma Message: Thanks for the response, do you suffer with coloboma yourself, or is it someone in your family?
Heidi Thursday, May 19, 2005 22:03:14	RE: Balance with coloboma Message: Hi Jackie I had a problem with balance as a kid and still do to a certain degree. I think that as we all only look out of one eye we have no depth perception and for balancing on a beam for example it is hard to judge where to place your feet. I still have difficulty going down stairs- particulary ones where there is a pattern like marble and no edge that is marked. For me ballet was fine until I had to turn around and my mother finally admitted that she used to hold her breath and hope I would not fall down on stage. She never let on though and I guess the best thing she did was not use my eye as an excuse as to why I was not able to do things. Only now I realise why I was awful at tennis and baseball- but hey I tried and my folks sat there not breathing.... The use of the PS2 will help as the hand eye coordination will be developed better and he will find his own way to deal with judging distance. For me still games like wolf 3D are impossible but tetris was a great help! Good luck! Glad to hear he is trying so many sports!!!!
Natanya Friday, May 20, 2005 18:18:24	RE: Balance with coloboma Message: My son, Grayson, is 8 years old and blind in his left eye, due to optic nerve coloboma. He wears a shell in the left eye as well due to micro. His right eye has ~ 20/20 vision with correction. Grayson has never had good balance which we attribute to both the vision, but more so to low muscle tone. Does your son by chance have hypotonia? Grayson very much enjoys sports - but frankly he is not a natural at them and he tires easily. He just learned to ride last year. He has a hard time jumping on one foot, playing hopscotch, etc... I am curious if any other parents have seen similar muscle tone issues in conjunction with colobomas.
Jackie Friday, May 20, 2005 21:12:48	RE: Balance with coloboma Message: Thanks for your replies Heidi & Natanya, it helps to know others feel the same. Tom's is only his right eye iris and retina, but not optic nerve. We're sure he doesnt have hypotonia, but he is just very slight, but seems to take after his Dad in that respect. It sounds like Grayson and Tom are very similar as Tom does enjoy sport, but is not a natural. This is showing more recently as his brother seems very natural with sports(he doesnt have any eye conditions). The main thing is that they are enjoying themselves and learning to adapt the best they can.
heidi Sunday, May 22, 2005 14:18:46	RE: Balance with coloboma Message: I have an optic nerve colomba of the left eye and I believe that there can also be systemic effects to this too ( the so named Morning glory syndrome) that vary from person to person. As this is proberbly a genetic error ( gene pax 2 or 6 )which results in a development error that can affect almost anything. EG some people have no corpus callosum ( connecting bridge) formed in the brain and therefore no right and left co-ordination and a lot have renal problems or hormone imbalances too. Personally I have weak arms, you could say hypotonic and to this day I am like a stone in a pool- I just cannot swim. But I am not sure if this is because I cannot co-ordinate the kicking and arm movements or just because I hate water and therefore never built up the strength in my arms. However it is a fact that my hearing is much more developed , perhaps to compensate for the vision loss. As I am investigating this a bit further I would like to know if you or anyone else would be interested in comparing blood results etc to see if there is a pattern that shows up. I can tell you that I for example always have anaemia and am weak from it, high copper levels and no thirst- I know I must drink something when I get a headache only. There may just come something from this....
natanya Thursday, May 26, 2005 03:20:37	RE: Balance with coloboma Message: I would be interested in comparing any type of medical information. We did participate in the genetic studies (almost 6 years ago) being done at UCLA and Einstein.
Anonymous Thursday, May 26, 2005 04:28:05	RE: Balance with coloboma Message: i had issues with riding a bike when i was little i wasnt allowed to go to the shop unless i was riding my bike! well thats what my parents said anyways! but i havent ridden one since that holiday as i cant stay up right! lol i beleive coloboma has something to do with balance, i cant back that with medical know how but its just a feeling i have.
Elaine Tuesday, May 31, 2005 17:06:01	RE: Balance with coloboma Message: Just a thought but balance is a major issue in many children with CHARGE Syndrome. This is due to cranial nerve damage and inner ear defects, mainly missing or malformed semicircular canals. My son has CHARGE and has bilateral colobomas and balance issues. His balance has always been poor but he is learning to compensate. Elaine
Stephanie Wednesday, June 22, 2005 21:03:11	RE: Balance with coloboma Message: i have no problem with my coloboma and i make striaght A's in school. i am 14 and have had coloboma since birth and am blind in my right eye. But i don't think it has anything to do with it. Jackie i think all your son needs is maybe a little assurance and self-asteem maybe give him little goals at a time to work towards he'll eventually get the hang of everything around him!
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