GUIDE - CHAPTER 5

Many of the children born with Moebius Syndrome have issues with the eyes. These include strabismus which is the inability to move the eyes from side to side. Many of the kids also have trouble closing the eyes, dryness, sensitivity to light and the like. Many are born with crossed eyes and most seem to have almond shaped eyes. Sam had surgery to correct the crossed eyes but there seems to be nothing available for the strabismus. Below, individuals discuss these topics.

Thank you to all who responded regarding muscle tone. Tessa's neurologist didn't dwell on the whys so much but he does want Tessa to have another MRI just for "diagnostic purposes." Her last MRI was at age 6 months and she's almost 3 now. Is it worth the risks of going under anesthesia and is it worth the value of information it might show for Tessa to have another MRI?

Also, Tessa can move her eyes from almost center to the outsides (not to her nose) so when she walks she keeps her head cocked slightly to one side to help her see "straight." It seems that aligning her eyes would greatly improve her walking but I wonder...has anyone had successful eye surgery that kept their eyes straight, without the muscles pulling them back unaligned?

Thanks AGAIN.....Donna Kremer

Donna---thanks for sharing those questions. Please, all, if you have ideas here, share them with the whole list. I'll just tell you of my experience with surgery on my eyes. It happened when I was very young. My mother tells me that they attempted to cut what muscle they could (the idea being that that would allow the eyes to straighten, without the muscles pulling it back). But there was almost no muscle to cut. As I said, they cut what they could---but it simply didn't do any good. Of course, that was long ago.

Are things different now? Are there success stories that any of you can share?? I don't know of any offhand. I'm not sure about the MRI---listmembers, what do you think?

Kevin

I don't have any input about eye surgery because my daughter was blessed with straight eyes.

As far as the MRI....as a nurse, I am aware that there are risks of test that we don't even know about yet. Last year there was a study that said that people who had CAT scans were at a higher risk for ____?______, which concerned me since Lily had had 2 CAT scans in her life, the first being when she was only 5 months old. I weigh the pro's and the con's of the doctors recomenndation. If the answer he thinks he may find on such test, can be fixed or changed, then maybe the test is worth having. If it simply a fact finding tool, but nothing can be done to change it, then maybe the con's will outwiegh the pro's. Sorry, I don't remember what the study said CAT scan's cause.

Lauren (8 yrs) also has "goopy" eyes whenever she has nose congestion. She always has "crusty" eyes every morning and is now cleaning them herself upon waking.

Just as a side note - we're on a new plan w/ Lauren. Her behaviour had sky rocketed and I started doing some research. I have pulled her off dairy (or if she CHOOSES to have dairy, she has to take an enzyme capsule before that meal, to help break down the milk proteins in her body).......doing this has greatly improved her behaviour. I now believe she is "allergic" to dairy - allergic in the sense that it affects her moods/behaviour dramatically.
I have also had her tested for SID (sensory integration dysfunction). She has completed the SIPT, but I have yet to review the results w/ the OT who performed her testing, due to holidays and us being out of town right now.
I also took her to a Psych for an ADHD eval. He has not yet dx'd her w/ ADHD bec her behaviour issues are much more pressing that her inability to stay focused and complete assignments in school/class. We're trying her on ZOLOFT to see if decreasing her anxiety and stress alleviates her extreme mood swings and curtails her temperment. It takes 3-6wks to take full effect and she just started it Dec 24th, so we're still in the waiting period right now. If the Zoloft doesn't help her concentrate or stay on task (by relieving stress/anxiety) then we might decide to piggy back the Zoloft w/ an ADHD med such as Concerta or Ritalin. We'll see.
Anyways...this is just what we're going thru right now and I wanted you all to know about it. We just could not take her behaviour anymore. The outbursts and meltdowns and agression towards her sisters was just at an unacceptable level.
Loves and hugs, we're out of town right now, to be home on Jan 5th.
Sharon

We are also lucky, in that Lily has had little problems with her eyes also. She has a "goopy" eye anytime she gets sinus congestion. We keep antibiotic drops in the cabinet at all times. They have never been cultured to know what the bacteria source is though. I believe MRSA (methicillin resistant staph aureus) is a pretty common bacteria on our skin. But when it infects a wound it becomes a problem. I don't kmow what the lesions may be, but it sounds as though your doctor has a good plan.
Phyllis

Hi all,
Hope you had a happy holiday! I have a question-Grace had a MRSA colonization in her eyes when she was a baby in the NICU. It since resolved and hasn't bothered her. However, lately she's been rubbing her eye incessantly (more like putting pressure on it than rubbing) and I've taken her to her eye doc. He first prescribed antihistamine eye drops-no improvement. Then he tried antibiotic oint (bacitracin) and still no improvement. So, I took her again. Upon that exam he said he saw lesions on her upper lid. He said he's never seen anything like it and if it doesn't resolve with Cipro oint he wants to biopsy them. In general, he says he's had several Moebius kids and she seems to cope very well-she can blink, does close her eyes completely, has no damage from dryness, etc, but still these unexplained lesions. I mentioned the MRSA b/c it might be relevant-I just wondered if any of you have dealt with this.....thanks!
Jennifer

Hi Jennifer and Grace, Chelsey has been fortunate not to have had any major eye problems. Her biggest challenge is the sun, because she can not squint.
Lori

Yes---the not-being-able-to-squint thing I suspect is fairly common. I know I can't squint, and it can be a pain, especially when driving and trying to cope with very bright sunlight right in your eyes. However, it can of course be handled---moms and dads, when your Moebius child begins to learn to drive and has to deal with this, just emphasize appropriate use of sunglasses, sun visors, etc. etc. etc.

Or you can just do what I sometimes do for fun---close your eyes and pull out into busy intersections, just to see what happens.
Kevin

Ha, Ha, Kevin! I am sure you are kidding!! Sometimes I am tempted to close my eyes while driving because I don't believe (or am afraid to see) the crazy things that drivers do out there!! (Course everyone with Moebius Syndrome is naturally a great driver, right?) My grandfather trusted my driving even when I was a neophyte because he thought it was great how I kept my eyes ON THE ROAD. Unlike others who habitually have their eyes darting every which way, I could always keep mine straight ahead. :) Anyway it is great to have someone confident in your driving!
How did I get off on this. It must be the 10 or so inches of snow coming down outside. Makes me a little chatty.

What I was going to say re: the sun in the eyes issue is that, at age 48, this last fall I successfully had both my cataracts removed as well as having glaucoma surgery. I always thought my eyes weren't bothered by the sun probably because I didn't naturally squint with the sun in my eyes. I didn't wear sunglasses when others might have. My theory is that I had cataracts at a relatively early age because of the increased exposure to the sun I might have had over my lifetime. We enjoyed being around water as I grew up and I sailed when I met Henri. So I probably had a good deal of exposure to the sun. So the moral is . . . And I now do . . .wear my sunglasses!

Anyway, now I see probably better than I have all my life with my new lense implants. They made me farsighted instead of nearsighted so now I can read the menu on the wall halfway across the restaurant or, like today, can see in the distance when I have to take my glasses off when they get steamed up while walking in deep snow at 20 below. Just kidding about the 20 below part.
Diane

Well, I am confused. Can someone help me, although it will not help Natalie,
but it will give her Grandma (me) some info. She will be two in April. Since she was three months old she has been holding her right eye open to see. Do none of you have that problem. She cannot open her eyes on her own.
This seems not to be a problem for any of you. Her mom said they cannot surgically open them, because then her would eyes would dry out, since she cannot blink to lubricate, and she would get corneal abrasions. Question - I know Moebius has many symptoms, but has anyone else had to manually hold their eye open just to see?
Henklink@aol.com

There are others with Moebius can not open their eyes completely. I would suggest that you investigate the opposite of that spectrum, and what are the risks involved with not being able to open her eyes. I am told by a family with a 12 year old who has that same problem who eventually lost her vision due to the damage the lids caused to the cornea by always being on them. I do not know this to be a common occurence but if it can prevent the same outcome to Natalie it is worth it investigating..

I do not mean to scare you in any way, but I would rather know that this is possible before it has the chance to occur to your child.

If you desire to communciate directly with this family, I can connect you be email to them.
Phyllis

From my nursing experience working with people who have myasthenia gravis, who sometimes have ptosis or droopy eyelids that they can't hold up, I know some of them wear special eyeglasses that have an extension that will prop up the upper eyelid for them so they can see. I am not sure how this would work on very young children but someone out there might have found a solution like that. Good luck.

Diane

I've had several eye lid surgeries also. Once I had gold weights, to help with eye closure. I've also had surgeries to tighten my lower eye lids to aid in keeping my eyes moister. They have all been helpful.
Linda

Dear Moebius webmaster & others,
On my quest to find fashionable, protective glasses and goggles for Tessa I have been in contact with some great companies...
Alice Lando at Teeny Tiny Optics was generous enough to send us a whole box of great eye glasses. She even looked up Moebius Syndrome on the web to get informed. Although the website teenytinyoptics.com does not seem to work properly, Alice can be reached at alice@teenytinyoptics.com for any folks that are also looking for the same.
The second company PanOptx has a GREAT product for adults--goggles that look like eyeglasses. Presently they do not offer anything for children but they may consider it. They can be reached at PanOptx.com

Because I have received such help from these companies and I think their fashionable eye protection could benefit everyone, I wonder if you might consider posting their websites on the Moebius website...?

If anyone has any info on other companies that sell fashionable child-sized protective goggles please let me know!

Thank you!

Donna

Tessa had her eyelids raised at age 6 months because she could barely see. Yes, she did develop a scar on her cornea due to dryness but that occured just after surgery. At the time, the surgeon did not think she would need lubriant. Since then we have kept her eyes continuously lubricated with various products. We rely on sunglasses and goggles to protect her from the wind. Her opthalmologist and surgeon say that her eyes are doing very well.

If my memory serves me correctly, I believe Natalie's mom told me that 3 surgeons DID recommend surgery but a 4th surgeon at the Baskin Palmer Institute did not recommend it so the surgery was never pursued. After having gone through the proceedure with Tessa, I would recommend it.
Good luck!
Donna

We had the good fortune to meet an extremely good specialist at Alder Hey Childrens Hospital in Liverpool.

He performed an operation called a "transposition" which, I believe, involved moving muscles from one part of the eye to another in order to enable Emily to use her eyes properly

Now, after several operations, Emily's eyes are beautiful - straight and without too much scarring. She still has no abduction in one eye, and (a problem with moebius I haven't seen much comment about) has no corneal sensation in her right eye - so we have to be very careful.

I believe that she was the youngest patient he had operated on - but at a recent eye test, it has proved to be all worth it - she has near perfect vision in one eye, and only slightly reduced vision in the other - corrected easily with glasses. The problem which I have seen others comment on - the inability to squint - is also there, but also easily remedied with the use of good sunglasses

Thank God for innovative surgeons who are willing to listen to parents and go the extra mile!!!!!

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