little four eyes

As we come to the end of January, which this year is Glaucoma Awareness Month, I wanted to post a few resources for families who are dealing with pediatric glaucoma.

Glaucoma is a leading cause of blindness, and while older people are more at risk, glaucoma can occur at any age.  Pediatric or Childhood Glaucoma may be congenital (1 in 10,000 babies in the US are born with glaucoma) or may develop later in childhood.  Glaucoma is also closely associated with cataracts, children who have cataract surgery are at higher risk of developing glaucoma, and so are often closely monitored.  Some symptoms of childhood glaucoma include light sensitivity (photophobia), corneal opacification (hazy gray cornea), enlarged eye and cornea, epiphora (overflow of tears), and vision loss. (Information is from the Pediatric Glaucoma and Cataract Family Association, and the Glaucoma Research Foundation).

You can find more information about pediatric glaucoma and support support for those dealing with it here:

• Congenital Glaucoma Network - this is a social network for all people affected by childhood glaucoma come to share their story.  There is a forum, blogs, a place to share photos, videos, and links to more resources.
• Pediatric Glaucoma – information on pediatric glaucoma from the Pediatric Cataracts & Glaucoma Family Association.  You may also want to check their Knowledgebase for more articles on glaucoma.
• Children’s Glaucoma Foundation – a non-profit dedicated to supporting children with glaucoma.
• Childhood Glaucoma – symptoms, treatment options, and stories about childhood glaucoma.  From the Glaucoma Research Foundation.

You can also read other posts on Little Four Eyes that deal with glaucoma.

If I’m missing anything, please let me know!

A couple of links to check out, and one website that no longer exists…

These links will both be added to our Gear page:

• I just learned of the site Children Wearing Glasses a couple of weeks ago (it was posted on the facebook page, but I can’t find the post again, so I can’t give credit where it’s due – sorry!).  Then yesterday, the owner of the site contacted me and gave me a bit more information.  It is a Danish site, and she’s tried to collect a huge variety of items for kids in glasses – that includes toys, accessories, glasses cases and more.  There’s a lot of cute stuff there.  The prices include VAT, if you’re not in the EU, the Danish VAT will be deducted from the price.
• I also learned of product called SPEC-WRAP which is a colorful and protective sleeve for the earpieces and temples of glasses.  It lets you change the color of the earpieces of the glasses on a temporary basis.  Due to small pieces, they are not recommended for children under five, however.

and this one will be taken off our resources page…

• Babies with glasses (babieswithglasses.org) appears to be gone.  This was the site that, had I known it existed back in March of 2008, I might not have started Little Four Eyes.  It had quite a few articles and a forum for support targeted at parents of babies in glasses, it also had some cute shirts for kids in glasses.  I am not sure when it went away, but I noticed the URL no longer worked last week.  This week I noticed that typing in the URL redirects you here to Little Four Eyes.  I am flattered that the webmaster did this – we’d never really interacted much, though I posted to the forum on occasion.  In any case, a big welcome to anyone who was going to babieswithglasses and finds themselves here!  I hope you’ll introduce yourself and stay for a while.

If your child has amblyopia and/or strabismus, you’re going to want to check this out: ”Do You See With Your Eyes Or With Your Brain and … What Difference Does It Make?” on The VisionHelp Blog.

I know about it thanks to Stella’s developmental optometrist, who emails relevant vision-related news and helpful educational opportunities and resources to her patients and colleagues. Tonight she shared a link to an engaging discussion between Dr. Press, a developmental optometrist and Board Certified Fellow of the College of Optometrists in Vision Development (COVD) who contributes to The VisionHelp Blog, and Dr. Granet, a prominent ophthalmologist. Really! They communicated with each other! And did a wonderful job of it, too. Though some of their chat is very expert-level, and therefore hard to follow, I was able to glean interesting points and find references to studies worth checking out. Hope it’s helpful to someone out there!

Dr. Press’ review (on The VisionHelp Blog) of Dr. Granet’s appearance on TV’s “The Doctors“ sparked this online dialog. Dr. Granet should be applauded for taking the time to respond to the (relatively mild) critique of his comments on amblyopia treatment, along with the optometrists who continued to engage him diplomatically yet honestly. You may’ve seen the video segment from the show, in which Dr. Granet tests a young toddler  for vision problems due to a family history of amblyopia. I really felt for the mom and dad, who found out in front of a live audience that their child likely does struggle with her vision. I remember that moment hitting me hard in the privacy of a small exam room. But as pointed out by “The Doctors,” early detection is something to be thankful for, and they’ve got it on their side.

In the comment section you’ll find an interesting conversation in which the disconnect between ophthalmologists and optometrists is taken on directly and in a very civil fashion. I couldn’t help but chime in (possibly coming across like a hysterical idiot parent, but hey, I tried!) and I hope you will, too. After all, it’s been talked about here on Little Four Eyes frequently. The lack of clarity many of us face in making decisions about our children’s care would be alleviated greatly if the two fields could find a way to collaborate or at least communicate. This comment section interaction seems like a step in the right direction. Stella’s doctor thought it was great and I agree.

One last time, here’s the link to the post and ensuing discussion:

Do You See With Your Eyes Or With Your Brain and … What Difference Does It Make?

(P.S. The video seems worth sharing, if only to convince other parents that eye exams are a great idea for all little ones and to show them how accurate testing can be even on babies as young as six months.)

I’ve recently learned about, and subsequently added some new links on the resources for parents page, and wanted to bring them to your attention.  Thanks to everyone that has suggested sites, and please, keep them coming!  If there’s a helpful website or great community out there, I want to list it.

Reference resource

• Eye Resources on the Internet – this is an extremely thorough list of Internet resources about vision compiled by the Association of Vision Science Librarians. (Thanks to Dr. Maino for posting this)

Communities for specific vision issues

• Congenital Glaucoma Network - a network for all people affected by childhood glaucoma come to share their story.  (Thanks to commenter Amy for pointing me to this network).
• Magic Foundation: Septo Optic Dysplasia (SOD)/Optic Nerve Hypoplasia – information and links to other families with children with Septo Optic Dysplasia.  (Thanks to commenter Denise for pointing me to the Magic Foundation).

Blogs by eye care professionals

• Dr Lea & Children’s Visions – Dr. Lea Hyvärinen is a Finnish pediatric ophthalmologist.  She may be most well-known by people here as the developer of the LEA symbols (the pictures of a house, an apple, a circle and a square that are commonly used as an eye chart for children).  Her blog managed by her daughter, and is so far, a way of making available her writings about children’s vision development.
• The VisionHelp Blog – VisionHelp is a blog written by a group of leading optometric vision specialists in the U.S.  They seek to increase awareness and understanding of vision treatment and vision therapy.

I just stumbled across this page – A Child’s Eyes – and was struck by just how much great information is here – information on different types of frames, how to know if your child’s frames fit right, age-specific hints to get kids to wear glasses, and more.  I’ll add it to our list of resources, but I wanted to post about it, too.  Danielle Crull (Miss Danielle) is a Master-Certified Optician (there are only around 330 in the US) who has specialized in fitting glasses to children.  Her masters thesis is “The Pediatric Optician: Dispensing for the Infant and Young Child” (links to pdf).  It includes a lengthy explanation of ways to measure the pupillary distance for young children, which I found particularly relevant given the discussion on the ordering glasses online post.

I’ve contacted Miss Danielle, and she has graciously agreed to an interview about the types of frames, how to fit them correctly, and glasses maintenance.  If you have any other questions that you’d like an expert optician to answer, let me know and I’ll add it to my list.

summer 2008

My name is Tobi and I am the mother of a beautiful, energetic and vision-impaired daughter, whom I will call Z.  This is the story of how we came to learn about Z’s vision impairment.  Unlike most of the visual issues you read about on this site, Z’s primary vision problems lie not with her eyes, or even with her optic nerves, but with her brain.  Her condition is called Cortical Visual Impairment (CVI), and according to at least one source it is the most common cause of permanent visual impairment in children.

Oh, and one more thing: children with CVI are frequently misdiagnosed as having autism spectrum disorders or mental retardation.  This is not to say that autism and/or retardation are never found in children with CVI.   It just means that often the symptoms and characteristics of children with CVI are confused by clinicians and therapists, and the children receive the wrong (or at least incomplete) diagnosis.
Read more…

After getting a response to a blog I posted about McKenna’s Pediatric Ophthalmologist I followed thier link to The Children’s Eye Foundation webpage. This is what I found…

About The Children’s Eye Foundation
Originally founded in 1970 as the National Children’s Eye Care Foundation (NCECF), the Children’s Eye Foundation (CEF) is the official foundation of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS).  The foundation was founded by the late Dr. Marshall Parks, who is also the acknowledged founder of the pediatric ophthalmology discipline. The mission of the CEF is to develop and implement programs that optimize the quality of life of children by eliminating preventable vision loss and eye disease.

CEF most directly combats Amblyopia, a condition caused when one eye receives inadequate use during early childhood, resulting in reduced vision or even blindness. The child’s brain suppresses the poorer quality image, essentially “turning on blindness”. Amblyopia can be caused by several vision disorders, such as:

• Strabismus: misaligned or “cross-eye”
• Anisometropia: uneven vision
• Cataracts: one or both eyes are cloudy
• Ptosis: or drooping eyelids.

Each year, close to four million children are born in the United States. Research suggests that 5%, or 1 in 20, of the preschool aged population suffer from a vision disorder that could eventually result in permanent vision impairment. Vision disorders have tremendous consequences for both the children afflicted by them and for society as a whole.

This is very reassurring to me as a mother, that there are people out there who care enough to devote their time and career to educating themselves and the public about the causes, treatments and cures of childhood eye disorders.

www.childrenseyefoundation.org

Although my husband disliked the doctor he is actually very acheived in his field. He is a Pediatric Ophthalmologist and specialized in children with developmental disorders. Our daughter has a Hypoplastic Cerebellum-detected while I was pregnant; this causes problems with balance and coordination. While researching about Esotropia- I found information that said that many children with gross motor developmental defects end up having some form of Strabismus and even more likely to have Esotropia.

Dr. Stephen Glaser has a website with a lot of good information on it www.kidseyecare.com He also participates in and support studies with the Pediatric Eye Disease Investigator Group (PEDIG – a division of National Institute of Health) that further advance the ability to diagnose and treat children with childhood eye disorders.

He also created “Glaser vision” which is a preschool sight screening system. That information is at www.kidseyetest.com

Although I am still processing all of the steps that we may have to take to help my daughters vision, I feel very confident in the doctor that we have in our area.

My husband on the other hand just didn’t like that he made our baby girl cry.

This post comes from Jomama at You Can’t Go Back Again.  Her son Jesse is the newest addition to our photo gallery page, and wears glasses for amblyopia and hyperopia (farsightedness).  This story of Jesse’s diagnosis is copied with permission from this post at You Can’t Go Back Again.  -Ann Z

Hey there, Four Eyes!

I love my little guy in his glasses. I hope he doesn’t get made fun of when he’s older. I don’t know if he will or not. But I know he needs them and he looks sweet in them. He’s pretty good about keeping them on though he is rough on them. He’s a boy though. I wouldn’t expect him not to be rough on them.

Jesse was diagnosed with hyperopia and amblyopia shortly after his second birthday. Common treatment for amblyopia includes patching. Jesse’s eye straightened out when Dr. T (Joseph Terravecchia of Pediatric and Adult Vision Care, who Jesse adores) put the prescription in front of him so we went with lenses. He will need them for at least 5 years. If they stop working we will try patching and surgery is always an option for more severe cases.

Jesse had an InfantSEE exam when he was 9 months old. He took to Dr. T immediately. He also got a clean bill of health. We never noticed anything wrong with his vision and his pediatrician never picked up on anything. I first noticed something when Jesse was about 22 months old. I took a picture with my phone and it looked like his eyes were crossed in it.

Read more…

Stacie commented on Mia’s update and included a question that I wanted to put on up on the blog to reach others.

My 3 year old has just been diagnosed with congenital glaucoma. . . Are there any congenital glaucoma online parent support groups?   I can’t seem to find one, and am toying with the idea of starting my own.

If you know of any such group, or if you’d be interested in joining one if one got started, you can email Stacie at connersmom @ petersengraphics . com, or leave a comment and I’ll get it to Stacie.