Sunday, November 27, 2011

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Wednesday, November 23, 2011

Abby's journey with Amblyopia

Thank you Sheelagh for sharing your daughter's Amblyopia journey.

My daughter Abby was diagnosed at the age of 4 1/2 with strabismus and amblyopia. Her right eye was seeing 20/30 and her left eye 20/200 uncorrected. The way we found out was a train wreck. At Abby's four year old well check she failed the vision screening with her left eye only. The nurse said it was behavioral and that not to worry about it. I did worry! I followed up with my family eye doctor shortly afterwards. He could not even finish testing her, because in his words "she was legally blind in her left eye". How did we as parents miss this? She played soccer, but not very well. She was learning her sight words, but not reading. She took ballet and seemed to do fine. She did squint her left eye alot and turn her head. There were frequent headaches, but not complaints of not being able to see. How did I miss this?

I had so many questions and he had so little information for me. I left the office not knowing what to do next or who to see. Hindsight is 20/20. The optometrist recommended a developmental optometrist who was local. Not knowing to much, I followed up quickly with her and learned alot during our first appointment. Abby was fitted with glasses and we began patching for 2 hours a day. Initially it was incredibly hard on all of us. The developmental optometrist set us up for at home vision therapy. We met with a vision therapist once a month for a follow-up and more at home exercises. This continued on for 6 months. After patching for 6 months Abby's vision had become better. She was now 20/20 in her right eye and 20/80 in her amblyoptic eye.

At this point, we decided to do weekly in office vision therapy and fitted Abby for a contact lens. Abby wore the contact lens during the week and her glasses on the weekends. We also used an occluder contact lens in her "good" eye instead of using a patch. This worked well for a while. After 6 months of in office vision therapy once a week with daily vision therapy at home Abby's eyes had improved. She then had achieved 20/20 in her right eye and 20/40 in her left eye. Abby graduated from vision therapy at this point. It was the summer before kindergarten. We still had to wear a contact lens in her left eye, but no occlusion therapy was ordered. We had a great summer. Part of me wondered how her eye's were doing. Abby started kindergarten and she did fabulous. During winter break of kindergarten we went in for a progress check. Abby's eyes had changed. Now her left eye was seeing 20/50! We were not told to patch at this point. We were to come back in another 6 months for our next progress check.

One year post vision therapy and patching we returned for our progress check. It was not good! Abby's vision was still 20/20 in her right eye, but her left eye had decreased to 20/80 and there were still signs of amblyopia. I was extremely upset. Very unsure of how all this happened. Especially since vision therapy is expensive and was not covered by our insurance. The developmental optometrist recommended another 6 months of in office weekly vision therapy. Not sure what to do next, I paid for the 24 sessions and started questioning myself. Somehow in this process, we were never encouraged to see an Ophthalmologist. I owed it to Abby to leave no stone unturned. I felt somehow that this was my fault.
We waited for 4 months to see a pediatric Ophthalmologist. I was hoping that she would give us better news. I was mistaken. It was one of the worst days yet. The Dr. told me that since Abby was almost 7 years old, that her visual system is set. Basically, I should have come to her sooner and that none of the money or time spent on vision therapy was worth it. I felt like the world's worst mom. She recommended patching for 2-4 hours a day for the first 6 weeks. I left the office feeling horrible. I went home, I called the developmental optometrist who basically said the 2 fields are like oil and water. Of course, I had that sinking feeling that I needed to follow the Ophthalmologists' recommendations just to see. After all, I had tried it one way and it didn't stick!
At our 6 week check up Abby's vision did change a little. Her left eye was now 20/60. The doctor now has us patching for 4-6 hours a day. Abby is now 7 and such a trooper! She patches for 2-3 hours a day at school. Her teacher has set aside a safe in the classroom time for her to patch and do work. Her classmates are wonderful about this. I think all first graders are such wonderful little people! The patch comes off right before lunch and then we patch again when she get's home for 3 hours. **we use the Ortopad Elite adhesive patches and love them** We don't go back for our 8 week follow-up until mid-January of 2012. I am praying, crossing my fingers and toes that this works. If her acuity has not changed then the Ophthalmologist wants to taper the patching and eventually stop all together.

On the flip side, we have stopped the vision therapy for now. We still have 12 weeks that are left of our paid sessions. We had a meeting with the vision therapist last week and Abby has such great stereo now with her vision. She can see in 3D and her eye turn is very controlled. Her left eye is still turning off at times and this is what we are addressing. I am sitting on the fence. We have achieved alot with vision therapy and minimal patching alone. It has not made the ambloyopia go away, but it did help Abby out alot. I hope that by patching for 4-6 hours a day and not doing any vision therapy, that we do not undo any of the good that has come of vision therapy.

I do hope that her acuity improves. Achieving 20/40 or better in her left eye is ideal. Keeping it there and not backsliding again is a must! Having a child with any disorder is very challenging. As a parent you want what is best for your child. Having a child with amblyopia and strabismus has been an adventure. There is tons of research out there and lots of opinions and case studies, but not very many Ophthalmologists' who agree with vision therapy. It would make it easier if both medical practices were on the same page. I whole heartedly think that vision therapy did help Abby. She has great eye teaming now and wonderful stereo vision. I only hope that we can improve her vision and decrease her acuity without disrupting what she has achieved.

Tuesday, November 22, 2011

The teacher says... toewalking (and more)

Parent teacher conference time always stresses me out.  Last year this time (kindergarten, mind you), I was informed that my visually challenged daughter was ... "A Slow Cutter".  This particular teacher didn't seem to buy into all of Belle's eye issues which made for a challenging year.  Fast forward and my daughter has made so much progress. At this time, we are "off the patch".. though we go back to the eye doctor the week after Thanksgiving, which is approaching rather rapidly - next week, in fact... Well,  unlike last years teacher,  her current teacher seems to be very in tune with Belle. After going over her report card (she did great!) and talking about how she has blossomed into a pretty darn good reader.. we went on to talk about a few areas of concern.

Belle has a hard time with the lined paper intended to teach children handwriting. The center (dotted) line really tends to throw her off. Not only does it take her a long time to write using this paper... it is exacerbating her already not so good time management skills and is a major source of frustration. What is surprising is if you give her paper that is smaller rule without that center line, her writing improves drastically both in legibility and the time it takes for her to write the word.   

In the beginning Belle was reading books right to left instead of left to right.  She also at times skips words or lines when there is a block of text.   This didn't totally surprise me and with accommodations she is addressing it. It helps if she uses  her finger, cards, and filters to keep her place.

Belle is tipping her head and positioning her body a lot in class in such a way that she appears to be really favoring her right (good eye).  This makes me very nervous that at our next eye doctor visit (Only a week away). I'll remain hopeful.

But the one that caught me by surprise was when she shared that she has observed my daughter Toe Walking, on a rather frequent basis.  Her older brother having Autism, it would be expected that she may mimic some of his behaviors. Toe Walking often goes hand in hand with Autism so her teacher thought it could be something she picked up from big bro.  I wish it could be that simple. But, her brother doesn't toe walk and never has.  I've spent the afternoon racking my brain about the toe walking.  I can't say I have ever noticed my daughter doing this. Not that she doesn't, but that I've not ever noticed.   This is something that we will discuss with an Occupational Therapist and some testing/eval, at the eye dr. next week, and with her pediatrician.  I want to get some answers.

And so I'm left wondering -

  • Is this related to her eyes? 
  • Is this something she picked up from another child?
  • Is she trying to be taller? 
  • Is this sports/muscle related? (she skates & dances)
  • Or is it something else?
Related Links:

Toe Walking and Vision: Unlikely Travelling Companions That We Need To See To Believe!

Co-Morbid Visual Problems Autism & Amblyopia
How Vision Therapy is Saving Stella's Toes & then Some
Autism, Strabismus & Amblyopia
Its not my eyes, its my brain

Sports and Vision - Brick Stars Hockey

I've written a few times about my daughter who plays on a special needs hockey team. Three years later Belle still loves to skate and play hockey. For a child with visual and perceptual issues, the fact that she is able to skate with ease (and quite fast now!) and play a physical sport like hockey never ceases to amaze me. I could watch her play, forever.

The program that she participates in is called the Brick Stars, and was recently highlighted in Asbury Park Press newspaper. I share this here so others could take from the example of my daughter and the many other children in this program who have made huge gains both on and off of the ice. I truly feel that playing hockey has in many ways given me my daughter back. Not only been the ultimate in vision therapy for her but it has boosted her self esteem, broke her out of clingy/shy behavior, motivated her, and gotten her active and physically fit.

In the beginning she couldn't skate at all. In early games she go on the ice assisted and take "set up" goals. Now she plays without skating help and is in on the action. She's scoring goals left and right and skating fast, maneuvering around kids who are 3 times her size (or more). She is not letting her "disability" and vision challenges stop her.

Last season they had her using a special high contrast vision puck (pictured) which was a really effective training tool. Belle uses the "junior" puck, which is the one shown on the top of the photo - with the largest 'dot' in the center.


Why use the Hockey Vision Pucks:

Hockey is the ultimate visual sport! Nearly all the skills that are important for Sport Vision, in general, apply to Hockey. The speed at which the puck travels, the quick transition found in the game from offense to defense, and the speed of recognition needed to make game decisions all come down to your Hockey Vision ability! When training with a smaller black surface area, your eyes and hands will become accustomed to playing with a smaller puck surface area. Therefore, when switching back to playing with a normal puck, the puck is easier to see and handle on your stick with your "split-vision" and the player becomes more confident in his/her ability to handle, see, and react with the puck.

To play hockey at a high level you need to be able to combine:

  • Focusing
  • Vision and Balance
  • Eye-Hand Coordination
  • Tracking, and
  • Eye movements

We also recently purchased Belle some new sports goggles. The photo at the top of this blog entry shows her wearing them.  The old ones that she had (an older style of the Rec Specs) weren't fitting well under her helmet and kept fogging up.  So, she had been wearing a pair of her day to day glasses that had polycarbonate lenses (as all her glasses do) and fit well under her helmet (which has a facecage).  Given how often she was skating, I knew we needed to get her new sports goggles.  We went with RecSpecs Maxx-20 (MX-20) model.  She loves them and they stay on her head well (they have a strap) while still fitting comfortably under her helmet.  I actually took the helmet with me to the store when we bought them.  Surprisingly, the cheapest place I found was Wal-Mart and I had a great experience dealing with the optical shop there. Her goggles took about a week to be made but the savings was worth the wait - they cost under $100 which at several of the places I'd shopped around the frames alone cost that.  

But, back to where I started... Sharing about this fabulous program for special needs children that has changed my daughter's life.

And that’s just what their time spent on Sunday mornings at the Ocean Ice Palace is for every parent of a special needs hockey player in the Stars program — pure joy.
It certainly has been for MaryTara Wurmser, whose daughter, 6-year-old Isabelle, has been with the Stars since its beginning in 2009 and currently is the only girl in the program.
Isabelle has a neurological disorder that affects her eyesight, making focusing on anything difficult, particularly moving objects. She used to wear eye patches to help try to correct her vision, but hasn’t worn a patch since March, and MaryTara says it has everything to do with Isabelle playing hockey.
“She still has some issues with the puck going left to right, but she’s doing really well,” Wurmser said. “She used to be a little shy and introverted. But this program has done wonders for her. It’s given me my daughter back.”

4 part series of articles & video linked below:

Brick Stars program brings hockey to the special needs community

Players enjoy social interaction within Brick Stars program

Parents of Brick Stars players sing program's praises

Volunteers make the difference in Brick Stars program

Related Link:

Overcoming vision challenges

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