Billys Journey with Amblyopia

Update

2010-03-28T13:43:00.002-04:00

Things have been hectic in our world. Which has prevented me from updating. So a quick update...

Billy's last eye appt. was a good one. He is now seeing 20/40 in his left eye, that is with correction of course. He was at 20/100 with correction so this is a HUGE improvement. We don't believe that his eyesight will improve much without correction in that eye, but he is seeing so much better now. And he actually prefers to wear his glasses because of it.

The funny thing is, with the pair he picked out and the fact that he has been wanting to grow his hair a little longer, he is now being called Harry Potter everywhere he goes. He liked it at first, but is now growing tired of it. I find it amusing.

The school year is almost done. I will post another update around the end of school. Thank you so much everyone for your support!!

New Year 2010

2010-01-04T10:45:00.005-05:00

Christmas time was a very busy time in our house. Billy's mom works in retail and Billy's dad works in the restaurant business, so not a lot of down time adding the stress of the holidays.
Billy had a great holiday though. Got everything on his wish list. Also got him another pair of glasses. We got them as a back up pair in case he lost his or they got damaged or whatever.
He picked out Navy blue Converse, and he likes them better than his first pair. He wears these all of the time.

We have our follow up appointment with the eye doctor today. Thank God! I am anxious to see if the glasses has helped him at all. I am not that optimistic though because he has been having trouble patching. It gives him a headache and causes his eyes to hurt. So what was supposed to be an hour a day of patching has been more like 15 minutes. I will be talking to the doctor about this and see what other options or advise she has.

I will post how the appointment goes. Keeping my fingers crossed for improvement!

November 13, 2009

2009-11-14T11:05:00.002-05:00

Today we had Billy's follow up appointment for his wrist. He got the all clear to go back to behaving like a normal rough and tough 6 year old. This is really good news. He hated not being able to go on his swing set or his trampoline. I have already seen a difference in the amount of incidents of getting hurt compared to how he was before getting his glasses. I really just thought he was accident prone. It never occurred to me that it could have been his sight causing him to get hurt so often.
He still fights the patch. He hates wearing it. It does make him clumsy. So when he wears it, he usually just sits and watches TV. I try to get him to color or do other brain stimulating activities, but he is still resistant. I am hoping that repetition will help and he will give in and stop complaining so much about it. What is sad about it at his age is that he feels as though he did something wrong, and that is why he has to wear glasses and a patch. It breaks my heart to hear him say things like that. I keep telling him that he didn't do anything wrong.
Billy said today that he hates wearing his glasses. Which was kind of strange because he has been really good and automatic about his glasses. I knew he hated the patch. He has told me over and over how different it looks with and without his glasses. He says everything is blurry without them, and sometimes I catch him lifting them and seeing the difference. He has also said that he didn't know he couldn't see until he got glasses. His blurry world was "normal" to him.
All I can do is to keep reassuring him. He will be wearing glasses or contacts if he can for the rest of his life, and I guess eventually that will be his "new normal"

Patching

2009-11-08T18:00:00.004-05:00

Patching has been quite challenging. He was really good about it for the first two days. Not so much since then. The eye doctor recommended this web site that sells these fantastic patches! The site is called Patchpals.com. They go right over the eyeglass lens that you want to block out. Completely blocks the peripheral on the side. He picked out this patch. Billy's favorite color is green and he loves frogs. I was hoping if he picked it out he would be more agreeable about wearing it.
It has been 8 days since he has gotten his glasses. And he is really good about wearing them, but patching is a struggle. He is supposed to be doing an hour a day. So far we are lucky to do half an hour. Anything longer than that and he starts to get a headache. He has such a hard time seeing with his "lazy eye" that he also runs into things. It is so sad to watch him go through this.
I have searched for support on the web for patching, and there really isn't much. We do continue with the half hour, I set the egg timer and he literally carries the timer with him so he can make sure the patch comes off when it rings.
I am nervous to think that we will have to do this for the next few years.
This is a learning process for him and for all of us too. He goes back to the doctor to see if there is any improvement in the eye in 2 months.
I am going to look into seeing what it would take to get legislature to pass a bill making it mandatory for all school age children to be screened properly for amblyopia before entering school.
Looks like we both have a long road ahead!

November 1, 2009

2009-11-08T17:28:00.003-05:00

First full day with glasses. This was on what we in our family call "the birthdays" My husband and my middle son share November 1st as a birthday. And of course being the day after Halloween, we usually have a very active weekend. Although this time I was pretty sick and they had their festivities without me.

Billy is adjusting pretty well to his glasses. He is starting to realize that he does see better in them. I have had to adjust them a couple of times because they were hurting him behind the ears, but it was an easy fix.

He looks handsome in them. It is hard to get used to seeing him wear them. But I am happy that he isn't fighting wearing them or acting sad about having to wear them.

In the pictures he is wearing a brace on his wrist because he had broken his wrist a over a month earlier and he needs to wear the brace for two weeks after the cast was removed.

Billy has voiced concern about how the kids are going to react to him wearing them on Monday. He doesn't want to be laughed at. But after talking to his teacher she said that she knows how to approach it with the kids so that they think it is a cool thing not a funny thing. So, I am comforted about that.

October 31, 2009 HALLOWEEN

2009-11-08T16:48:00.003-05:00

Got the call early in the day that Billy's glasses were ready. We went to pick them up and have them fitted for him. He wasn't feeling well so it made it difficult to see how he felt about the whole thing. At first Billy said everything looked weird and bigger. He was acting really blah and I wasn't sure if he was depressed about wearing the glasses or if it was because he wasn't feeling well. After a couple of vomiting sessions and naps, I figured it was because he wasn't feeling good. With some Motrin he was feeling good enough to go trick or treating. He said that he was the Spongebob that is searching for jellyfish, because Spongebob always wears glasses while searching for jellyfish. He seemed to be OK with it.

We had a Halloween party and as the guest started to arrive, he was happy to retreat to his room and take his glasses off and relax. His fever came back so we gave him more Motrin and he asked before he went to sleep if he had to wear his glasses anymore. I explained to him that it was going to be really important that he did so that his eye would get better. He seemed to be OK with that. And I was keeping my fingers crossed that we wouldn't end up with a constant daily battle.

October 30, 2009

2009-11-08T16:35:00.003-05:00

Today was crazy hair day at school, he looks so cool!

I had a parent teacher conference with Billy's teacher today. I explained the findings at the eye doctor. She was surprised as she said that he hasn't ever complained about not being able to see things. I was surprised that as a teacher she hadn't heard about Amblyopia before. That just confirmed to me that there isn't enough awareness out there. And also confirmed to me that parents need to know about it so they can have their children screened to protect their vision.

I have started to seriously think about what it is I can do to encourage awareness and hopefully make it mandatory that all children be screened by a professional ophthalmologist before entering Pre-K or Kindergarten which ever they are entering first. I know that when Billy had his Kindergarten physical they half-a@@ screened his eyes. They checked with only both eyes open and not each eye individually. So they passed him. It was as though he just kept falling through the cracks.

If he would have been screened before kindergarten he would have been 5 years old. We could have started the therapy and he had an 80% chance of completely restoring his vision in that eye. The younger the better the chance. If he was 3 his chance could have gone up to 100%. That is what is frustrating about this. Part of you feels so guilty for not knowing something was wrong and part feels guilty for not being more pro-active on all medical screenings.

October 29, 2009

2009-11-08T16:12:00.003-05:00

All lot of prep work, with Halloween coming and the birthday's. I took a couple of vacation day's from work so I could prepare. While I had time off, I continued to research amblyopia. I did find a promising research done on children 7 to 17 and with wearing corrective glasses and patching they still showed some improvement in the "lazy eye". Very promising. The depressing part is that they aren't as likely to reach 20/20 vision even with correction, and they will more than likely need to patch as sort of a maintenance in order to encourage constant communication with the brain. And I have come to terms with the fact that Billy will be wearing glasses for the rest of his life.

The most frustrating thing has been so far, that I had no idea this was going on. In hind sight I can recognize certain behaviors that were obviously caused by his vision. At the time, it didn't seem to be a problem though. He would move closer and closer to the TV. He would sometimes cover one eye when he was concentrating on something, but I thought it was a nervous habit of his.

He also didn't do well enough in Kindergarten to move forward to first grade. He is in TK1 program this year. They told me at the school that his chronological age and his developmental age didn't match and that is why he wasn't ready for first grade. I am now questioning that. Mostly because Billy has a memory to beat all memories. And I feel that he was struggling but never said anything. He never complained about not being able to see something and he never had any headaches. There weren't really any signs of what was going on.

With the research I have done, I have found that it is very common that there are no signs with this form of this disorder. And that it is a leading cause of vision loss in children. But only 2 out of every 100 children have amblyopia, and only 1.7% of those children have the "refractive amblyopia". This also got me thinking. How come there isn't more information out there about this disorder so parents are aware that they should have their children screened before entering preschool. I also want to look into why he was screened this year at school and not in Kindergarten.

October 26 2009

2009-11-08T15:22:00.003-05:00

A week earlier I had received a letter from the school. It was results to an eye screening they did. And according to the letter if your child passed you wouldn't be receiving the letter. Which would make since, because this was literally the first time I had ever received anything regarding any of my children being screened at school. In the letter it informed me that Billy's left eye had a vision of 20/100 and his right eye was 20/30. It recommended he see an opthamologist. So I made the appointment.

That appointment was sort of like being put into a tunnel and you really aren't sure which way you are pointing because it keeps spinning and spinning. She proceeded to tell me that Billy's left eye had stopped communicating with his brain and that we were running out of time to help the two to learn to communicate! She told me that his left eye was in fact 20/200 (the schools only goes to 100) and his right eye was 20/35. And considering the right eye is doing all of the work, it was still struggling a bit. She informed me that this condition is called "Refractive Amblyopia" I haven't ever heard of such a thing in my life. I am a mother of three boys. My oldest is 19 my middle son is 13. I went to school for medical assisting, and I was a medical assistant for a few years. And still I hadn't ever heard of this condition before.

The worst part of the whole thing...really is the realization of what is really going on. Even with a very strong prescription on the left eye, his left eye only gets to between 20/80 to 20/100. His right eye is now corrected with glasses.
The eye doctor told us he will have to wear his glasses all day every day. That even if we cannot correct the left eye, she would want his right eye to be protected at all costs. We would also be patching him an hour a day.

Patching is when you cover the good eye completely to block out all vision in order to force the brain to recognize the forgotten eye.

The eye doctor told us that the best time to get the communication going is before the child is 7. He will be 7 in February and that would leave us with a very short window to help his eye.

She explained everything to Billy so that he understood how important it was going to be to wear his glasses. And then we went out to pick out his new glasses. He picked out the pair he liked the best. And I paid for them and was told they would be in within 10 days.

After we went home, of course I cried. Then I started to do some research on Amblyopia. And to my surprise, there really isn't a whole lot on the web about it. There are several sites but they say pretty much the same thing. There just aren't enough resources about this condition. And I am determined to help change that.