Optic Nerve Hypoplasia (ONH) Research at Childrens Hospital Los Angeles

Interested in learning about IEP's? Have a current IEP but want to know how to use it more effectively? Enjoy reading this article while discovering more about creating useful IEP's designed to provide your child with proper accomodations and goals during school!

Interested in learning more about endocrine/hormone disorders associated with ONH? Dr. Mark Borchert, Ped.Neuro-Opthalmologist at The Vision Center of CHLA will be a special guest during tomorrow's Dr. Bill Telephone Education Series at 6:30pm PST (02/09/2016)! To join the free call, please dial: 1-888-247-8947. When the operator prompts, dial the pass code: 460500. Hope you can make it!

Kids with Optic Nerve Hypoplasia (ONH) may develop neuro-sensory disorders, including: obsessive behaviors, self-stimulation behaviors, and adverse reactions to certain textures. While some of these behaviors may reduce over time or with therapy (such as occupational therapy), it is still important to look out for self-abusive behaviors, especially for children with ONH.

Just a quick reminder! The next Dr. Bill Takeshita Telephone Education Series is tomorrow, Tuesday January 12th at 7:30 PM. PST. Dr. Bill’s topic for Tuesday night is Corticol Vision Impariment. To access the call dial: 1 888 247-8947 and enter the passcode 460500. The Dr. Bill Telephone series is an educational program focusing on pediatric eye conditions for parents, teachers, and other professionals working with young children with visual impairment(s). There is no need to register. Each free tele-conference offers a 30-45 minute lecture and a question/answer period following the lecture!

Neuropsychology has a large impact on children with Optic Nerve Hypoplasia (ONH). Overall, several aspects of a child’s life may be affected including: personal social, motor, communication, and cognitive domains. In particular, some children develop strong dislikes for certain texturesespecially in their mouthmaking it difficult for the child with ONH to eat certain foods. Therefore, it becomes important for children having these issues to begin occupation therapy and/or physical therapy in order for the child with ONH to become more adaptive when exposed to new textures.

Children with ONH more than often will positively benefit from a wide range of therapy interventions, including: vision, speech, and physical therapy. However, some parents can also enhance their blind child’s occupational therapy outside of the school environmenteven at home! Occupation therapy allows children to strengthen developmental skills through their direct participation in specific activities. Introducing certain objects into a blind child’s daily lifestyle through occupational therapy has been able to reduce the occurrence of adverse reactions to certain textures and patterns. Below is a website that provides some creative ideas to integrate occupational therapy into your child’s home life:

Several children with ONH experience abnormal sleep patterns as a result of their hypothalamic dysfunction. Other factors associated with abnormal sleep-wake cycles include: developmental delays, visual impairment, and diabetes insipidus. Trying to establish a sleep cycle for children with visual impairments often becomes difficult because they are unable to use light signals from their environment to stimulate the production of melatonin, which is why these children often sleep at random hours of the day. However, setting-up a daily sleep routine for children with ONH has been helpful for many parents.

Many parents want to know how many children with ONH also have autism, or autism spectrum disorders (ASDs). We prefer to use the term ASDs because we recognize autism is not one single condition, but rather a spectrum, or group, of developmental disorders characterized by impairments in communication, problems with social interaction, repetitive or stereotypic patterns of behavior or interests, and difficulty processing sensory information. Just like we see a wide range o...f symptoms and characteristics in children with ONH, the same is true for ASDs. While we don't have an "official" statistic, we believe around 30-50% of children with ONH have ASDs. The reason it's been so hard to study this and get a more concrete statistic, is that ASDs are difficult to diagnose in visually impaired kids. That's because most of the tools/tests we use to diagnose ASDs rely heavily on vision. For example, diagnostic questions include: does your child look at your face during a conversation? Does your child smile when someone smiles at him? Does your child point at things to get your attention? Does your child nod for yes, and shake his head for no? Does your child join in social games like tag or hide and seek? How could any child with vision impairment be expected to have these behaviors? Some of our research has focused on modifying current diagnostic tests to make them appropriate for use in visually impaired kids. We have had some success using a modified version of the Autism Diagnostic Observation Schedule 2 (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R) to accurately diagnose ASDs in visually impaired children. But we need to do much more research to understand the prevalence and nature of ASDs in children with ONH. On a related topic, there is a fantastic book on educating children with ASDs and visual impairment great for parents and teachers alike: http://www.afb.org//Pages/ShoppingCart/ProductDetails.aspx.

Check out this wonderful set of back-to-school tips and resources for visually impaired kids, put together by the pros at Wonderbaby: http://www.wonderbaby.org//back-to-school-resources-for-bl...

What is optic nerve hypoplasia anyways?? The back of the eye (the retina) is home to millions of retinal ganglion cells (which are simply nerve cells). These cells are located all over the retina and have long axons, like tails, which travel towards the very back of the eye, where they converge, forming what’s called the optic disk, or optic nerve head. The optic nerve is made up of over one million of these axons, which connect the eye to the brain and carry visual informati...on to the parts of the brain that process vision. In optic nerve hypoplasia, there simply are not that many retinal ganglion cells to make up the optic nerve. The result is a very small optic nerve. Everything else about the retina is normal, except these missing retinal ganglion cells. You can see what this looks like in the pictures below. On the left is a normal retina. The light-colored oval area, which is encircled by a black dotted line, is the optic nerve head. It exits through a hole in the back of the eye on its way to the brain. You can’t see the hole, because the optic nerve is as large as the hole and fills it up completely. On the right is an eye with ONH. The bright spot is the optic nerve (marked by a tiny yellow line), and the black dotted line shows the outline of the hole. You can see how this little nerve does not fill up the hole. This is what doctors are looking for when they diagnose ONH.

Another heads up for So-Cal families: if your child is in need of a developmental evaluation to find out if he/she needs special services, please check out this screening hosted by Therapeutic Living Centers for the Blind. It's free but you need to RSVP. See flyer for details.

Attention all our So-Cal families! Don't miss this FREE Active Learning workshop hosted by the Therapeutic Living Centers for the Blind, in Reseda, CA on Monday 9/28.

A lot of parents want to know if patching is right for their child. Patching should only be done if the potential for vision is approximately equal in both eyes. The key word is "potential": this doesn't mean vision is the same in both eyes, but there is POTENTIAL to get both eyes to have about the same level of vision. This is possible if one eye is only a little bit worse than the other eye. By patching, we can strengthen the bad eye and bring it closer to the level of the ...good eye. On the other hand, if vision is asymmetric - in other words, vision is much worse in one eye - patching will never make the bad eye as good as the other eye, and will only lead to stress and frustration for the child (and probably for the parent, too!) This is almost always the case in unilateral ONH, but we also see this type of "asymmetry" in bilateral ONH. As you can imagine, there's an art to evaluating the cost and benefit of patching! If your child sees about equally with both eyes, patching may be a great option for her or him.