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Raising Special Needs Kids Raising Special Needs Kids

Answer to head tilting issue finally.

Posted by on Sep. 11, 2013 at 11:24 PM
  • 13 Replies

 I too Lina for her eye test and she DOES have strabimus! She has vertical strabismus. Her eye Dr grew up down the street from us and she is a great Dr she asked questions about our appt with optho specialist I told her what he said then I told her my opinion of the visit. I believe that he decided based on her age that she didn't have it. Dr Kim did a bunch of stuff and told me that she has strabimus, something that sounds like astigmatism but starts with an N and her right eye is worse, her left is just a tiny bit better but she still needed a new prescription. Also found out that she tilts her head because her right eye is higher than her left to compensate. Now here is the kicker Lina tilts her head so far to the left and is using the bridge of her nose to actually block the use of her right eye. We talked about what to do about this and we decided that surgery is an option but she said that the Dr that would do the surgery would be the same one that told me she didn't have the condition to start with. Patching really isn't an option because of how bad her vision is in the right eye. She suggested some things for us to try doing at home and maybe at school to try to work on the muscles on that right side. When we go back to see the neuro Dr I am going to tell him about all this and have Dr Kim write up a paper so that he can see exactly what she found.

I knew there was something wrong and it worried me that they couldn't find a reason for it and it was getting worse. Right now not much I can do about it but at least I now know what the heck is going on.

I was so lucky and still am that the Dr's do listen to me but I am really disappointed with the optho Dr in this regard. I really do believe he had made his mind up based on her age because he repeated himself that strabimus doesn't begin in a child her age and he didn't really listen when I told him that I went back through pics and saw where she had been doing this for years, I feel like he just blew me off. Oh well at least I know what is going on now and have a little bit of information to help her.


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by on Sep. 11, 2013 at 11:24 PM
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Replies (1-10):
Mipsy
by Chelle on Sep. 12, 2013 at 1:09 AM

Nystagmus? Where their eyes move back and forth? I hate when drs think something can't happen based on age, thats just so dumb! I didn't know diseases or anything health related really had an age limit! Like it's prejudice against certain ages?! It doesn't care!!

darbyakeep45
by Darby on Sep. 12, 2013 at 5:19 AM

Hugs mama!  Glad you found a doctor to listen:)

Linagma03
by Gold Member on Sep. 12, 2013 at 8:31 AM

 Yes nystagmus. Lina's eyes have done that for along time but it wasn't real noticeable unless she was really tired, then after her seizures began it became real noticeable.

I would think that the optho Dr wouldn't have taken that attitude given he deals with sn kids on a daily basis. I understand why the neuro Dr didn't push it because the MRI came back without any problems and he was relying on the opinion of another Dr. Neuro did say that he would watch it and decide what to do if it continued to get worse. I was so excited to know that I wasn't being paranoid about it that I forgot to ask Dr Kim to send a report to PCP and neuro so it is in her records at both facilities. Then at least it is there. This is the first time that I've really disagreed or been upset with a Dr since Lina was diagnosed with sn.

Quoting Mipsy:

Nystagmus? Where their eyes move back and forth? I hate when drs think something can't happen based on age, thats just so dumb! I didn't know diseases or anything health related really had an age limit! Like it's prejudice against certain ages?! It doesn't care!!

 

Linagma03
by Gold Member on Sep. 12, 2013 at 8:34 AM

 Thank you. I am glad we did too. Kinda nice when you've known the Dr since she was 6 years old! LOL

Quoting darbyakeep45:

Hugs mama!  Glad you found a doctor to listen:)

 

arkansasmama08
by Gold Member on Sep. 12, 2013 at 9:34 AM
Zack had that problem in his right eye too. We did glasses and patching for a year or so and finally broke down and did the surgery. No problems since. Our eye dr was 2 hours away and that kind of stunk.
I'm glad they listen to you. That's important and really makes things sooo much easier.
Pukalani79
by on Sep. 12, 2013 at 11:18 AM

 Frustrating that they wouldn't listen, but I'm glad you have answers now

mandee1503
by Amanda on Sep. 12, 2013 at 11:31 AM

Glad you found a dr to listen!

Linagma03
by Gold Member on Sep. 12, 2013 at 4:01 PM

 I am hoping that it doesn't come to surgery but since patching doesn't seem to be an option because of her bad vision it just might down the road. Glad to know that it works and glad he hasn't had any problems.

Quoting arkansasmama08:

Zack had that problem in his right eye too. We did glasses and patching for a year or so and finally broke down and did the surgery. No problems since. Our eye dr was 2 hours away and that kind of stunk.
I'm glad they listen to you. That's important and really makes things sooo much easier.

 

Linagma03
by Gold Member on Sep. 12, 2013 at 4:03 PM

 It is frustrating especially when the Dr deals with sn kids all the time.

Quoting Pukalani79:

 Frustrating that they wouldn't listen, but I'm glad you have answers now

 

graycalico
by Member on Sep. 13, 2013 at 8:47 AM
Glad you have answers!
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