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Kaleb's Search for Answers

Lisa Phillips
Posted 06/14/2005

Our first son, Kaleb, has been called an "interesting case" one too many times. We had seen numerous eye specialists and had many tests done before we finally found someone who knew what was wrong.

At 3 months of age, right about the time of his pedi appt, Kaleb, developed nystagmus. We took him to see Dr. M at Texas Children's Hospital. She was concerned it might be Optic Nerve Hypoplasia (ONH) so she sent us for a sedated MRI, blood work, and to see a pediatric endocrinologist. Those results all came back that everything was normal with his optic nerve & the hormone levels were fine. No answers there. Then, shortly after his 6 month check up to the pediatrician and set of shots, he started crossing his eyes (strabismus). Originally the crossing was alternating. So, Dr. M talked to us about surgery and had us begin patching. Kaleb hated this. We ended up having to put mittens on his hands so that he couldn't take the patch off.

At one visit, Dr M mentioned Ocular Albinism and sent us for a second opinion to Dr. Richard Lewis. He had no diagnosis for us either and again mentioned what an "interesting case" Kaleb was.

Dr. M contined to push the surgery. We hesitated to do the surgery and finally did some research. Learning that only 15% of eye surgeries for crossing come out right the first time and Vision Therapy had a 90+% success rate made it an easier decision. Dr M leaving Texas Children's Hospital helped as well. Finally we were forced to look for someone else.

In our researching Vision Therapy, I had emailed back and forth a little with Dr. Desiree Hopping. She was so kind and answered many of my questions. And as an extra incentive, she was very close to us. So we went to get her opinion.

Turns out that Kaleb very badly needed glasses. His vision was 20/700+ without. He had adapted so well that no one could tell. Because he went so long without the glasses, he started crossing to try to see better. This allowed him to focus really hard with just one eye. We left our first appointment with Dr. Hopping with our son's first pair of glasses and a big hug from her. She promised that if he needed surgery she would tell us, but that we were going to try some Vision Therapy first.

We started patching with atropine. It was much easier than arguing with an 18 month old about keeping a patch on. And we would put it in while he was asleep at night. It didn't wake him and we didn't even have to hold him down! After a while of patching, he suddenly switched which eye he was crossing! So we had to start patching the other eye.

Dr Hopping sent us to have a VER done at University of Houston Eye Clinic. It was performed by Dr. James Walters. He told us that the test showed one eye had a stronger signal than the other, but not to base anything on the test. He said there was a lot of interference and the test is unreliable.

So at this point we still didn't have a diagnosis. So, we started researching it with a list of Kaleb's eye conditions at hand:

• Astigmatism,
• Low vision (20/200 corrected & 20/600 not)
  Note: 20/200 is considered legally blind.
• Photo-sensitive/Light sensitive
• Strabismus
• Nystagmus
• Not a single picture of him without red-eye in it!

We found ocular albinism and he fit right into the description. We brought the information to Dr. Desiree Hopping. We stuck with that diagnosis until April 2005.

Aug 2004- Kaleb started Vision Therapy sessions with Dr. Hopping. She has confirmed that he does use both eyes and has some sense of depth perception, although it is not near as good as most of us. He will still sit down on stairs to walk down them, even at the age of 4. We are using Atropine drops every other day on his left eye. His right is apparently crossing in a little more than his left, so we are going to try to even out the usage of both eyes. Dr. Hopping said it shouldn't take long to correct this.

April 2005 - we did an ERG & another VER at Baylor College of Medicine and it showed that Kaleb had a problem with his retina and it ruled out the ocular albinism. Because of those test results, Dr. Hopping requested, that we take Kaleb to see Dr. X for a second opinion and to see if she could give us a diagnosis, since the OA was ruled out. After a very upsetting time trying to get drops in Kaleb's eyes, she was not able to get much of a look, because he didn't trust her (or anyone else there). I should have taken all the kids crying in the waiting room as a sign. Anyway, she gave us a diagnosis of macular degeneration pretty much based upon his records and said she wanted to sedate him to get a better look and to run other tests. Our insurance refused to pay for it, so we were not able to do this since it was going to run close to $10K. After the appointment we had, I was uneasy with this anyway. (Note: The macular degeneration diagnosis was ruled out later in May by a new piece of equipment in Dr. Hopping's office that took pictures of Kaleb's retina.)

May 2005 - Back in the fall, a good friend of mine mentioned that she had been using hyperbaric oxygen treatment (HBO) for her daughter who was cortically blind and has cerebral palsy. The HBO treatment had made huge improvements in her daughter and she now can see! This month she reminded me of the treatments and again encouraged me to call. So I did and one of the doctors called me back. He was so very kind and talked to me for over an hour. So, I made an appointment and went in and met with Dr. Sprague. He was also very kind and they really thought that this treatment would improve Kaleb's eyes. So, we started hyperbaric treatment at South Coast Hyperbarics for Kaleb on May 2nd 2005. The reason being, that in normal day-to-day we are only exposed to 21% oxygen. By putting him in a pressurized chamber and giving him a hood filled with 100% oxygen, that gives him the equivalent of 150% oxygen. That oxygen can get into his body and repair damaged nerves/cells. Dr. Sprague feels that Kaleb's eye problems are brain damage due to vaccine injury.

May 2nd week - Kaleb is pointing out letters on signs as we travel in the car. This is very new!

May 14th 2005 - After only 10 hyperbaric treatments we had a true sign that this was working. Kaleb has always sat and scooted down stairs. Even now at the age of almost 5 he did it. This day he started walking down them spontaneously! And they were new stairs that he had never been down. And they were about 20-30 steps long! None of them had the markers on the end of the step to mark where the drop off was either. My husband and I sat with our mouth wide open in amazement. He went down 3 new flights of stairs this day! Later during the same day he took his coke bottom glasses off and said he didn't want to wear them. And that he could see better without them. And that things were bigger with them off. He has barely worn them in the 4 weeks since. The 2 times that he has put them on, he has quickly taken them off because they were too dirty, despite me having just cleaned them. Prior to hyperbarics, ice cream could be smeared on them and he wouldn't notice.

May 25th 2005 - I took Kaleb down to Kemah and ran him down a whole bunch of new stairs. This time he walked down all of them with his glasses OFF!!!

June 11th 2005 - Put the kids in the car and took them into Houston. Kaleb was so excited about the freeway! This sounds weird, huh? But he kept saying, "MOM, look at all of those trees over there!" "MOM, look at all of those buildings that are next to each other over there (apartments)" and these things were at least a block away from the freeway! He begged to get back on the freeway saying that it was fun like a rollercoaster ride and that he liked being up high where he could see everything. He has never pointed out things before while we drove down the freeway.

We have noticed that with his glasses off his eyes are usually very straight and not crossing. Very unlike before we started hyperbarics. This is how his eyes were with his glasses on. With them off, prior to hyperbarics, one eye was usually crossed inward.

And his coloring and drawings have gotten amazing. He has been spending a lot of his time now coloring and drawing beautiful pictures. They have gotten so detailed and his coloring so much more controlled and within the lines. If I could show you a picture of before hyperbarics and now you would be amazed at the difference.

June 16 2005 - Today we met my husband for a quick lunch at McDonalds. Poor Kaleb got himself all the way to the top of the indoor playset and sat up there just crying. He was terrified to come down. He couldn't tell how deep (depth perception) the steps were to come down. I was in tears. My husband had to climb up to get him because Kaleb wouldn't let even a teenager help him down. Poor kid was really upset. I took him over to Space Center Houston afterwards to meet some friends. He sat and scooted down every step there. It really felt like a huge set back.

July 14 2005 - We took Kaleb for an eye doctor appointment last week and our eye doctor was completely amazed. After 40 dives his prescription has been cut in half. His eyes are barely crossing any more (with his glasses off!!!) and he has been pointing out letters on signs, trees & apartments that were a block away (seen from the freeway), he can now identify us (where before he couldn't identify his dad or I at 10 feet away), etc, etc. The list of changes just goes on & on. His eye doctor was so impressed with his changes that she asked for the contact information for the hyperbaric center we are going to. She said she is going to start referring patients over there. Our eye doctor calls this a "significant improvement"! We actually saw his eye doctor last Friday and again yesterday (Thursday) and she said that he had improved his prescriptions from +5.0 in April (before hyperbarics) to +2.75 on Friday to +2.5 on Wednesday. His vision has gone from 20/200 to 20/50 & 20/60. She also said that glasses were only correcting his vision by about a foot and that she wouldn't bother putting him in glasses right now. We are more than thrilled with the changes and are now continuing with the hyperbaric treatments. All of this is permanent and will just keep getting better.

August 10, 2005- Kaleb went for another eye doctor appointment to Dr. Desiree Hopping. After 3 more weeks of hyperbarics (we went on vacation for a week) his prescription has improved to +2.25 & +1.75 and his visual acuity is now 20/50 in both eyes! We are continuing with they hyperbarics! This is amazing!

September 13, 2005- Kaleb saw Dr. Desiree Hopping today. He has shown more improvement! His visual acuity is still 20/50, but he was able to see a foot further away. His prescription has improved to

Table Showing Kaleb's Improvements

*Note: we started hyperbaric oxygen treatment on May 2nd, 2005.

February 2006 - Dr Desiree Hopping gave us a prescription for reading glasses. These were to help him be able to see the letters while reading a little better. He wore them for a few hours on 3-4 different days and then we lost them.

May 1, 2006 - Still searching for Kaleb's glasses. We haven't been back to the eye doctor because I am not willing to admit that we lost a $400 pair of glasses (and have to buy another pair).

I will continue to put updates on Kaleb's progress in an attempt to help other parents who are searching for answers. Don't give up & remember you know them best. Feel free to contact me if I can help in anyway. I don't want anyone else to have to go through what we have been through. -Lisa Phillips

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