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07/10/2011 03:38 PM

Therapy to help control mild case of Marcus Gunn?

MelissaHope
Posts: 2
New Member

Hi I'm new here to the forum.I have a 4 year old son that was diagnosed as an infant with a fairly mild case of MGJW in one eye (no ptosis). He is finally at the age where we can discuss it a bit and he says he can feel his eye open wider when he sucks a straw or licks ice cream. When I remind him to try to "not bulge his eye" he has had some success controling it but I don't want to make him more self conscious in the process. Has anyone ever had a health or behavioral professional work on controling MGJW? We live in the Columbus OH area but I would be very interested in hearing how any others have been able to work on controling it non surgically since his case is mild and without any vision deficits or ptosis. What type of therapist would work with him on this? Thank you!
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08/17/2011 12:52 PM
selfconsciousMGKid
selfconsciousMGKidPosts: 9
New Member

Hey Melissa, Im 19 and i knew i had MGJW since elementary school. Since then I have learned to deal with it but am actively looking for possible surgeries. I be clear I don't have ptosis (i look normal with no jaw movement) I have never had professional help for it, I just try to minimize movement.

I would have your son avoid things that require higher level jaw movement in public. Like eating skittles or gum, chewy candies, etc. I also noticed that it is much more apparent when i chew on the right side of my mouth then the left. If i had the patience I am actually able to eat without moving my eye, but then it takes stupid amounts of time to chew my food and its just not worth it. I try to minimize eye contact while eating.. i know its weird, but I dont wan't whoever im eating with to feel awkward starting at my twitching eye. I also try to avoid straws, and close my eyes while yawning.

When he enters elementary school, i would advise telling him people will ask about his eye. So i wouldn't get picked on i would join in with the other kids picking on someone else. It sounds terrible but I didn't have problems, better them than me.

He will get made fun of in middle school, who doesnt? That was the time it affected me the most, I would get mocked. One day one of the star athletes came up to me and start making his eye move to mock me, i punched in right in the face and then tackled him to the ground and beat him up. His nose was bleeding, and he had a black eye for the next week, and he had a sling for his arm but he was faking that it hurt. No one every made fun of me again but I did get suspended... it was worth it.

In high school I never really got made fun of, but people did point it out and be like "dude your eye just moved". I had alot of friends in HS tho so i think that helped. Either no one noticed or people just didn't care.

Unless theres some super awesome surgery or treatment I have not heard of, your son will just have to deal with it and learn ways around it. To this day I would say that the biggest factor i hate about my eye, is that I am always uncomfortable meeting people for lunch. I try to eat a snack before I go so I can order something smaller.

This was probably more than you asked for, sorry haha


09/19/2011 03:46 PM
lauracarmel
lauracarmel  
Posts: 491
Member

Hi, I have the same case as your son. Mild winking, no ptosis.

I don't know anything about surgery but I can pretty much support selfconsciousMGkid's experiences (apart from the fighting) and after 21 years i'm nearly en expert Wink. I only had mild teasing by friends when i was very young that helped me take it less seriously and when I grew up, although i was asked about it, i was never teased about it. in fact, i was teased for being overweight instead. like, MGkid said, most kids get teased at some point, nor their hair colour, height, glasses, etc. it doesn't make it right but it goes to show that kids will be kids because they are immature and are selfconscious about themselves. My current best friend who i've known for seven years - one of the first things she did when she met me was try opening her eye when she talked. That was one of the reasons i liked her, she did it in front of me, to me, and not in a nasty way, it made me laugh.

I'm 21 now and I have had several boyfriends, a few of whom I would say were handsome, so that hasn't been an issue there. people say they don't notice it now but i find the same with people who have different accents, after a while it just becomes part of them and you don't separate it anymore.

I find that the only physical 'problem' i have is that i can't focus when i'm eating something really chewy (but that's hardly a problem!).

I do , however, still refuse chewing gum and sometimes chewy sweets in public because I feel slightly selfconscious and when I'm eating something particularly chewy in front of strangers, i'll just close my eyes.

To be honest, it's a party trick. My boyfriend thinks it's cute and makes me show all of his family and friends... I'd encourage him to not let it bother him because chances are someone in his life will pick up on it and try to tease him about it. just tell him it makes him different just like people have different colour skin or hair or freckles, or maybe an extra toe. in a strange way i feel lucky i was teased when i was younger by my friends because i learnt not to get angry about it and i just laughed along with them (although they were my friends and not trying to be mean).

good luck with it, i'm sure he'll be fine Smile feel free to keep posting around,

laura


11/03/2011 11:58 AM
Noxy
Posts: 4
New Member

My little son who is 5 months old today was diagnosed with a very mild marcus guun. We noticed it after his birth since he winked weirdly when he was being fed.

The myth about Marcus Guun syndrome is that it sort of disappears in time and I sure hope that this is true. Can anyone confirm?

Post edited by: Noxy, at: 11/11/2011 03:08 PM


11/09/2011 07:31 AM
LissaP318
Posts: 10
New Member

Noxy- My daughter has it also in both eyes which is nearly unheard of. It is more severe in one though. I know how you probably feel having your child diagnosed with it. I was devastated when i found out. I just kept thinking about her future and that I dont want her to be made fun of or treated differently. But as she has gotten older we think it is so cute and we totally accept it! We have learned to love the crazy things she does with her eyes and we laugh about it. We just want her to be comfortable in her own skin. She was also born with ptosis which we had surgically corrected when she was 6 months old. Her surgeon is awesome! From what he tells us she will have it forever and it will not disappear. What he did tell us was that as she gets older she will learn ways to minimize the winks by manipulating the way she eats or drinks. I honestly would not change a thing about her! I had a rough pregnancy and we are just thankful that she doesnt have something worse, because it can always be worse.If you have any questions or want to chat you can email me LissaP318@comcast.net.

11/09/2011 06:48 PM
MelissaHope
Posts: 2
New Member

My son just turned five and it is so much less noticiable. I have started working with him to control and and when he concentrateson it he can decrease it greatly. It was hard to even try thsi before now as he didn;t understand and certainly I don;t want to draw more attention to it for him but it does seem to decrease with age for sure (at least for his mild case). Best of luck to you!

04/07/2012 09:52 AM
besan
besanPosts: 2
New Member

my daughter is almost 5 months old and was diagnosed with mild mgjw today (no ptosis). i do want to get a second opinion though, because i think i am noticing her eye on the affected side gazes down when she is straining to sit up. of course, i couldn't get her to do it for the doctor. i would like to know, is the downward eye gaze normal, or am i just seeing things that aren't there.

05/02/2012 12:52 AM
Noxy
Posts: 4
New Member

After few months of absence, I come back with few updates.

We did go see a doctor and since MGJW is so exceptionally rare, the entire medical crew was there to see my boy. No pressure.

Anyway, the doctor reckoned to come back for a look in a year or two when the boys becomes capable of orally discribing exactly what he sees. For now, the syndrom is so mild, we barely notice it anymore especially since our boy almost entirely stopped being bottle fed.

The risk is that he develops a lazy eye in time even with any ptosis and I regularly check if he is capable of seeing things at both extreme angles with a moving object. For now, he seems to be doing fine.

Post edited by: Noxy, at: 05/02/2012 01:22 AM


02/08/2014 05:18 AM
kmilankovic
Posts: 1
New Member

Hi,

we have a 7 month old babygirl who has just being diagnosed a Marcus Gunn, also a mild case. so we would like to know what kind of exercise have you been doing with your son? and in what age gave you began with it?

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