Marcus Gunn Ptosis

My 4-year-old was born with Marcus Gunn jaw winking in 1 eye and a compensatory ptosis in the other.  I took her to a pediatric neuro ophthalmologist once -- at the time of initial diagnosis at age 1.  (She would close an eye with each squeeze on the bottle, for example.  At birth and for several months, one eye would frequently stay closed for minutes at a time; at first, I was told by nurses in the hospital that was normal for many babies and not to worry.  That [eye staying closed for minutes] doesn't happen today.)

The ophthalmologist said that it was a relatively mild case and he didn't recommend surgery to correct it.  He said I should consider it more of an oddity -- something special she can do.

Now that she is approaching kindergarten, I am worried about her being teased all thru school.  Her eye shuts "rhythmically" when she does things like drinking thru a straw, and shuts or partially shuts when she yawns, makes faces, and I think, just eating food -- depends which muscles are used, obviously.

My chiropractor says he has read of chiropractic doing some good for some cases of this.  But as I understand the main problem -- some nerves did not grow to the right places when she was in utero.  So what could **anything** do to help?  (But then, why did the "eye-staying-shut phase go away?) Is surgery major -- and is that to help the ptosis?  What could I expect?  Any "exercises" that might make a difference?  Or somehow learning to adjust movements so the eye doesn't shut?

It may sound like it is more of a problem for me at this point, but I know how cruel kids can be.  And if there is something that could help, I would like to know about it.

Thank you very much for your help.

[CCF Neuro[P] MD, RPS]

Dear Barb:

I am sorry to hear about your daughter.  As the synkinesis between the ocular motor and trigeminal nerves are a nerve connection, I rather doubt a chiropractor could adjust anything to relieve this problem, if it is a real Marcus-Gunn phenomenon.  Surgery is likely the only way to change the behavior.  Whether to have this done is a decision you will have to make.  I wish there was a better answer.

Sincerely,

CCF Neuro MD

[yvonne]

Barb,  My six year old grandaughter has Marcus Gunn Syndrome.  Have you visited the Marcus Gunn website?  Jenna is in the first grade and is doing very well.  She was teased once by a classmate so her mother and teacher had  her do a show and tell about her eye, this educated the kids and gained her new popularity. She followed that up with another show and tell with her pet trantula "Jumper"  All the boys fellin LOVE with her. She also had a surgery two years ago that didn't work out as well as hoped for.  Give your daughter the skills she needs to respond to questions and looks.  Let her know how special she is and she'll do fine. Yvonne

[Allison McGowan]

http://www.marcusgunn.com

We are compiling case histories.  Please take a moment and fill out the questionnaire regarding your case.  All information will be kept confidential.

All the best,
Allison McGowan
Founder - The Marcus Gunn Group:  An International Support Group
Marcus Gunn Researcher
828.264.7521    USA

[Pained to Karen]

Thank you very much for posting comments.  I will definitely check out the Web site and fill out the survey.  Could the person who talked about a family member let me know more about the surgery?  Was it to correct the droopy eyelid, or can something be done about the winking eye?  Thank you so much.  I read that most surgeries are done between ages 3 & 5.  Since my little one is going on 5, I wonder if I am missing a certain window.  Also, did/does insurance typically cover this?

Thank you so much.

[happy678]

A related discussion, Marcus Gunn was started.

[AGahrmann]

A related discussion, Marcus Gunn Phenomenon (Marcus Gunn Syndrome) was started.