infant with ocular torticollis

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Ok, so I'm not looking for help as far as patients or care plans go on this one, but I have a huge problem and hope that someone can offer me some advice. I have a beautiful 13 month old baby girl (last of 6). She was diagnosed at 6 months of age with congenital motor nystagmus. Around 9 months of age, I was able to find help in the form of BabyNet (SC) who referred her on to SC School of the Deaf and Blind. (Not that she is blind by any means, it is just that they are better able to attribute her motor delays to her vision issues). Since then she has been receiving OT, PT, speech therapy, and early intervention services. We have been trying to teach her how to compensate and live normally with her condition. The OT has done WONDERS with her in the short amount of time time that she has been with them. They are AMAZING.

Today she had her second opthamology appointment. I left crying. First off, the doctor said that the previous doctor was wrong. She DOES have congenital nystagmus, but its not congenital 'motor' nystagmus. Apparently, that type does not get better and hers has. The only time you see the 'dancing eyes' is when she is incredibly tired, has just woken up, or is breastfeeding (yes, she is still ebf at 13 months old). She also added on a diagnosis of ocular torticollis and told me that she had to have surgery for it. According to her, there are no non-invasive things that we can do to work with her. This is my one and only option.

Now, from what I understand, she IS the best doctor around here and really good in surgery. (My mother in law has worked in the OR with her many times). The idea of putting my baby under anesthesia scares the beejesus out of me, though! To make things worse, they are talking about messing with her eye?!?! That's such a delicate part of the body! She can see perfectly fine right now, but one slip of the knife...:(..

If I don't do something about the way that she compensates for her condition (she has a left head tilt/right twist) then the torticollis that has developed on the left side of her body could worsen, lead to scoliosis, then she would be in constant pain & possibly disabled (?). We HAVE been working on this in OT, but apparently the muscles in her eye need to be snipped or loosened in order for us to truly make progress.

So, I guess what I'm asking...does anyone have any experience with this? Either with a child that has ocular torticollis and/or nystagmus, or one that has had the surgery. Maybe give me some noninvasive ideas to work with her? I think what makes things worse is me being a nursing student who has already taken pharmacology and I know the side effects/adverse reactions...I'm flipping out today!

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I am so sorry you are having such a hard time! We can't offer any medical advice, but big hugs and I hope everything works out for you and your daughter.

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I don't think I'm so much looking for medical advice, just someone that might have been through this also...I think that's mainly what I need at this point.

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Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma.

First, I am so sorry your daughter has health issues. ((HUGS)) We cannot give medical advice as per the Terms of Service...

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As a Mom....I know how hard it is when you have a sick child.....or the thought of something happening to them is mind numbing. But you have to trust that the doctors KNOW what they are doing.....you have a glowing recommendation about this MD...your MIL...your babies Grandma would NEVER recommend ANYONE that wasn't THE BEST for her grand-baby.

Have faith that the MD has nothing but your babies best interest at heart.

Call your doctor and ask if there are any support groups in your area.

I am sending prayers and positive thoughts for you and your baby!

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You can always ask for a referral for a second opinion-- you want a pediatric neuro-ophthalmologist, so you may need to travel to a big center.

As to the surgery :) Well, they do bigger and more dangerous ones on smaller babies all the time. It's easier when they're little, because although you never forget, they never remember. Good luck in whatever you do.

(And I bf my babes until they quit at around age 2-- too much intersting things to run around to see and do by then!)

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