Dealing with Visual Disabilities

[Stormtroopooper]

I wanted to create the thread for parents dealing with their children's visual diabilities.

My son was born with congenital bilateral cataracts. His cataracts were removed at 4 and 5 weeks of age (two separate surgeries).

He has worn contact lenses since he was 7 weeks old. He will be 3 in May.

The biggest issue we've had is protein build-up on the lenses. To help with this, we remove his contacts nightly and alternate between two pairs, letting one pair soak for a full week while the other pair is being worn. We also scrub the lenses every night with a peroxide solution and use a separate protein remover additive to his solution. We bought him the ipool vibrating contact lens case, as it is supposed to help with protein build up (and they come in mickey mouse clubhouse characters!) We also use clear care twice a week. It is not recommended to use it every night with his silicon lenses.

He is doing really well with the contacts, but we had his 6 month check up last week and were told he has astigmatism. They have prescribed bifocals for him to wear with the contacts. We were a little disappointed, because we were hoping he wouldn't need glasses as well, and I'm nervous that he won't want to wear them.

I realize that was really long, but I wanted to be specific in case anyone might be dealing with the same issues regarding protein deposits and what not.

Please tag or pm me if you have any questions or want to talk!

[marajadeskywalker]

Hi. My son has a bilateral strabismus and has been wearing glasses since he was just over a year. We were worried that he wouldn't wear his glasses - hated hats, sunglasses, anything like that. But his eye doc said (and was right) that once he realizes that they help him he will start to wear them without fuss. We struggled for about 2 weeks and now he asks for them when he wakes up in the morning.

I'm impressed about the contacts. I can put my own in but I don't think I could do someone else's

[chickypoo2468]

I'm new to this board, but seeing this post makes me happy! Well, not happy... Hopeful? You know...

Anyway, my 7 month old can't see. We've had a variety of guesses on what the diagnosis is and are still fighting things out. He has Foveal hypoplasia and a blonde fundus, but I guess that doesn't explain everything. If you watch him he looks like a blind kid for the most part. He also has nystagmus and his eyes wander and cross if he tries to focus. He is also behind in pretty much everything, and we aren't sure if it's because of his vision or if there is more.
We've had 3 doctors pretty much give up now, but we are working with a developmental specialist that is encouraging me to continue searching and is making referrals and looking into things for us. So our calendar is full but we don't seem to be getting anywhere. It's been a very frustrating experience.

[chickypoo2468]

Mar 1, 2016 22:24:17 GMT -5 marajadeskywalker said:

Hi. My son has a bilateral strabismus and has been wearing glasses since he was just over a year. We were worried that he wouldn't wear his glasses - hated hats, sunglasses, anything like that. But his eye doc said (and was right) that once he realizes that they help him he will start to wear them without fuss. We struggled for about 2 weeks and now he asks for them when he wakes up in the morning.

I'm impressed about the contacts. I can put my own in but I don't think I could do someone else's

My son just got glasses, I had asked if they would help bc I was worried about the strabismus. But when we picked them up (not where he had the exam) I asked and they said that they wouldn't do anything for the crossing. Do you know anything about how it works? He is farsighted and has an astigmatism in both eyes.

Oh, but when I spoke with the prescribing doctor last week he said normal kids with his prescription wouldn't have glasses and he didn't expect them to really help his vision anyway.

[marajadeskywalker]

@chiclypoo2468 They hoped that the glasses would help him focus better. ... he was only using one eye at a time to see. When we first got them we were also patching his eyes.
He is far sighted as well and he had surgery to correct the wandering eyes, but were told that he will probably need glasses all his life

[chickypoo2468]

Mar 7, 2016 7:18:26 GMT -5 marajadeskywalker said:

@chiclypoo2468 They hoped that the glasses would help him focus better. ... he was only using one eye at a time to see. When we first got them we were also patching his eyes.
He is far sighted as well and he had surgery to correct the wandering eyes, but were told that he will probably need glasses all his life

Ok I guess maybe he's just too young then. How could they tell he was only using one eye?
Sorry for all the questions!

[marajadeskywalker]

Mar 7, 2016 11:21:18 GMT -5 chickypoo2468 said:

Mar 7, 2016 7:18:26 GMT -5 marajadeskywalker said:

@chiclypoo2468 They hoped that the glasses would help him focus better. ... he was only using one eye at a time to see. When we first got them we were also patching his eyes.
He is far sighted as well and he had surgery to correct the wandering eyes, but were told that he will probably need glasses all his life

Ok I guess maybe he's just too young then. How could they tell he was only using one eye?
Sorry for all the questions!

Lol no worries. He one eye would look at you and the other would be off in space. He was fine for objects far away, both eyes would follow it, but up close one would focus and the other would wander.



He would also switch eyes he was using so it wasn't always the same eye wandering

[chickypoo2468]

Aw he's adorable!

[Stormtroopooper]

Mar 1, 2016 22:24:17 GMT -5 marajadeskywalker said:

Hi. My son has a bilateral strabismus and has been wearing glasses since he was just over a year. We were worried that he wouldn't wear his glasses - hated hats, sunglasses, anything like that. But his eye doc said (and was right) that once he realizes that they help him he will start to wear them without fuss. We struggled for about 2 weeks and now he asks for them when he wakes up in the morning.

I'm impressed about the contacts. I can put my own in but I don't think I could do someone else's

We have been trying the bifocals for a week. He has not yet learned to look over the magnifying part of the lens, so he only really wears them when he's doing activities that are close up (coloring, looking at books, using his tablet, etc.) It's still a fight to get them on at first. We usually bribe him with stickers.

[Stormtroopooper]

Mar 4, 2016 5:15:32 GMT -5 chickypoo2468 said:

I'm new to this board, but seeing this post makes me happy! Well, not happy... Hopeful? You know...

Anyway, my 7 month old can't see. We've had a variety of guesses on what the diagnosis is and are still fighting things out. He has Foveal hypoplasia and a blonde fundus, but I guess that doesn't explain everything. If you watch him he looks like a blind kid for the most part. He also has nystagmus and his eyes wander and cross if he tries to focus. He is also behind in pretty much everything, and we aren't sure if it's because of his vision or if there is more.
We've had 3 doctors pretty much give up now, but we are working with a developmental specialist that is encouraging me to continue searching and is making referrals and looking into things for us. So our calendar is full but we don't seem to be getting anywhere. It's been a very frustrating experience.

I'm so sorry you're experiencing such frustration with finding the right diagnosis/treatment. One of the reasons my son was prescribed bifocals was for his astigmatism. Also, my husband has nystagmus. He was born blind with cataracts as well, but they didn't know until he was older. They aren't sure if his nystagmus is congenital or a product of his delay in surgery for the cataracts. A few years ago, a Dr. agreed to do an experimental procedure for the nystagmus, and my H said he thinks it definitely lessened the intensity of the nystagmus.

So far they haven't seen any signs of nystagmus in my son.

As far as delays, my son worked with early intervention for almost a year for a speech delay. They think it stemmed from an overall communication delay from not being able to see things at a distance, and we wondered if not being able to see our mouths when we talked contributed to that delay. I noticed improvements when I would put his hands on my mouth as I talked. EI really helped. He talks all the time now.

[Stormtroopooper]

He was not impressed.

[chickypoo2468]

Mar 10, 2016 17:30:59 GMT -5 Stormtroopooper said:

He was not impressed.

OMG but he's adorable!

[marajadeskywalker]

@bananalattuce he's so cute!

[Stormtroopooper]

My son will not wear his glasses. We try treats, presents, all kinds of bribery. I don't want to punish him for not wearing his glasses. I don't want him to associate them with negativity, but I'm at my wits end.

[chickypoo2468]

Mar 17, 2016 10:44:09 GMT -5 Stormtroopooper said:

My son will not wear his glasses. We try treats, presents, all kinds of bribery. I don't want to punish him for not wearing his glasses. I don't want him to associate them with negativity, but I'm at my wits end.

Helmet?
I'm joking. But now he can't get them off

[Stormtroopooper]

Apr 7, 2016 20:22:52 GMT -5 chickypoo2468 said:

Mar 17, 2016 10:44:09 GMT -5 Stormtroopooper said:

My son will not wear his glasses. We try treats, presents, all kinds of bribery. I don't want to punish him for not wearing his glasses. I don't want him to associate them with negativity, but I'm at my wits end.

Helmet?
I'm joking. But now he can't get them off

OMG. He's adorable!

[chickypoo2468]

Apr 8, 2016 0:38:29 GMT -5 Stormtroopooper said:

Apr 7, 2016 20:22:52 GMT -5 chickypoo2468 said:

Helmet?
I'm joking. But now he can't get them off

OMG. He's adorable!

Thanks he definitely wears his gear well IMO lol

[Stormtroopooper]

We took him back to the eye dr to make sure his glasses prescription was working for him. They said that he doesn't have to wear them all the time but just for when he's doing things when he needs better focus up close (looking at books, coloring, playing with his tablet). I established a no tablet time unless you wear your glasses rule, and he wore his glasses with the tablet on Friday. The problem is when daddy is supervising tablet time. He's a total pushover, and I always have to be the bad guy.

[chickypoo2468]

That's good that you found a way to get him to wear them, I think dads being the pushover is an epidemic though unfortunately lol
Does he notice a difference? Everyone keeps telling me that O must notice the glasses are working if he keeps them on (thank you, stranger, for imparting me with your knowledge. In reality he doesn't have the coordination to get them off) so I don't want to be that person lol, but could there be a reason why he doesn't want to wear them that could be fixable?

[Stormtroopooper]

Apr 14, 2016 8:54:32 GMT -5 chickypoo2468 said:

That's good that you found a way to get him to wear them, I think dads being the pushover is an epidemic though unfortunately lol
Does he notice a difference? Everyone keeps telling me that O must notice the glasses are working if he keeps them on (thank you, stranger, for imparting me with your knowledge. In reality he doesn't have the coordination to get them off) so I don't want to be that person lol, but could there be a reason why he doesn't want to wear them that could be fixable?

They did a vision test with them on and off (distance), and he did better with them off. I just don't think he can navigate the bifocals yet, and that's why he's more inclined to keep them on during tablet time (or other up close activities). It was hard getting him to keep them on during the eye test. They said he sees 20/50 corrected at distance right now. His contacts are adjusted for him to see clearest about two feet from his face, so naturally his vision is better close up.

[Deleted]

No visual disabilities here, but I couldn't wear contacts due to the protein build-up and nothing I did helped that. The ones that worked the best were daily disposables- not sure if that is an option. So when the protein was too built up I could just discard them and open up a new pack.

[Stormtroopooper]

Jul 8, 2016 16:01:23 GMT -5 @clarypax said:

No visual disabilities here, but I couldn't wear contacts due to the protein build-up and nothing I did helped that. The ones that worked the best were daily disposables- not sure if that is an option. So when the protein was too built up I could just discard them and open up a new pack.

Unfortunately, he has to wear specially made silicon toddler contacts that are ridiculously expensive, but maybe when he's old enough we can switch to those.

[luvboston]

How do you get your kids to keep their glasses on DD keeps taking hers off and throwing them?

[chickypoo2468]

Ug my son is now taking his off too. I feel like he doesn't like them, but his nystagmus is better so I still put them on him. Or try.
Sorry I have no advice luvboston. Just commiseration.