For us, it has been, and still is, a long and hard road that took a turn for the worst lately, because even though we have been going with Yon to doctors since he was six months old, it still took us three years to get to a full and correct diagnosis. So I am sharing here our story in all its details so you can see what we’ve been through and still go through.
Our story begins when Yon was born, and his left eye’s pupil tended to move to the inside of his eye, but because babies sometimes do that and is supposed to be alright by the time they are six months old, we waited.
The starting point is the GP. We’ve been living in Gibraltar for only 2 months by that time, and didn’t really know what to do so we went to the regular GP. It turned out to be a good choice because we learned that even if you think about going to a private doctor after that, even if the doctor says you are over-reacting, you still need the GP to send the reference letter to the eye-hospital (or eye department in a regular hospital in our case) and since it can take around 3-4 months from your first appointment at the GP to actually getting to the eye-doctor, it is better to start this waiting game as soon as possible.
The next step is waiting. One of the more important lessons I learned over this whole crazy road is that patience is actually a virtue. One I, personally, do not posses. So our second stop was the private doctor in Spain. The private doctor will usually see you within a week and charge a lot. Even though Yon was just 8 months old his cooperation level was quite good, but the test still couldn’t reveal much. The private doctor said what we would hear so many times over the years again and again – Yon is a borderline case. So he advised patching the strong eye everyday for around 3 hours, so the weaker eye would not become “lazy”(basically to force the brain to use the weak eye, otherwise the brain will “shut it down” and will not use it. That is what is called a “lazy eye”), and come back in about 2 months to check the need for glasses. Surgery, he said, is only cosmetic and anyway not advisable before the baby turns 3 or 4 years old.
By that time we got the appointment date to the hospital, but it was still a month or so of waiting time, and like I said – we are not the waiting type, so we made some calls to doctors in Israel that said that the patching is the first step, and there is no need to hurry with operations and the like.
Third step was the eye department in the Hospital when Yon was 9 months old. They started checking his eye-reflexes. Apparently the important test is the “Tell me what can you see” test, like the chart one they do for everyone basically, but because babies can’t read letters, or say what they see anyway, they have carton-cards with very lightly painted cars or boats or fish, at different strengths and position on the card, and you see how long it takes the baby to spot the painting. The main problem is, well actually there are two – one it’s not really accurate and the second and it will come back in every test – the results are very much dependent on the child cooperating. After that you do the always-fun drops test and the looking at the back of the eyes.
The diagnosis at that point was that Yon is far-sighted (always a confusing definition, which means he cannot see well from up-close) and also has a squint in his left eye, so he needs to continue with the patching and he needs glasses. An operation in this case is just cosmetic – you might fix the squint, but not necessarily the far-sightness, and in any case outside of Israel, they don’t really like to operate on really young babies because the glasses might “fix” the squint or you might need to repeat it in a few years when the eye develops.
Fourth step is getting the glasses. Hidai – as a former glasses wearer – was a bit worried about this part. He was afraid it will be like the olden days when kids glasses were, let’s face it, horrible, and Yon will look funny. That is not the case at all. We got Yon the cutest golden rims square glasses that complemented his colouring perfectly. In the UK, under NHS you get it for free, but in Gibraltar (and Israel) it costs money. It was around £90 for his first glasses, and in every place (UK & Gib) it takes about a week or two to get the glasses. In Gib we collected it from the shop, in London it got sent to our home.
Fifth step, for us, was another private doctor. This time in Israel, because you know how it is, Israelis are crazy about everything medical. So we went to Israel and had Yon tested by one of the three best kids eye doctors there. We brought all our material from Gibraltar and Spain, went through the same tests, and got told the same. Yon is far-sighted and has a squint. Because the glasses reduce the squint by 80%, it becomes almost unnoticeable so no need to operate for now. Patching, glasses, and plenty of waiting to see what happens. There are 3 options – it all goes away as the child grows, the glasses fix the squint, or nothing helps and we will need to operate. At least he changed the glasses a bit, so we felt like we are doing something.
Sixth step, the monitoring. This was the longest of them all, because we were left in the “there is nothing to do but wait and monitor” situation. So you go to the hospital every 6-12 weeks, do the “Tell me what you can see” test, patch, don’t patch, every 6 months check the glasses prescription, and so on and so forth. During this 2 years period we went through 3 or 4 doctors, another pair of glasses (this time round ones, just for the fun of it) and Yon moved on to being able to say which picture he sees (or in his case doesn’t see), and by the end of this period (he was almost 3 by then) we started to feel a bit uneasy about the fact that he couldn’t see from afar even though they kept saying the problem was he is far-sighted, but because he didn’t really like cooperating with those tests and we were on our way out of Gibraltar we waited.
Seventh step, again with the private doctor. Again we went to Israel, and again to the same specialist, and this time was probably one of the most horrible doctor experiences we’ve ever had. Yon wouldn’t cooperate since the doctor was very cold, condescending & unfriendly to Yon, and was very close to operating on him on that same minute and finished it all with accusing us that we are endangering Yon’s eyes. But in the end, after we questioned those harsh statements, he said the diagnosis stays the same and that we need to wait for Yon to grow a bit older so we could test him properly and, of course, operate.
Eighth step, arriving to London, we went through the whole GP-reference-three-months-wait process until we got to Moorfields Hospital, where they again ran all the tests, and again Yon’s cooperation was not at a high level for the “Tell me what you can see” test (we had the most un-child friendly tester in the history of the world that day), but he did cooperate in all the other tests (they put animals pictures on the screen for him), and that is when the great doctor there told us she has some concerns about the fact that he can’t see from afar properly, even when we explained about the unfriendly tester. She went through all of his medical history and said they raised the same concern there, and after she tested him she said there might also be a problem with the color of the back of the eyes. So she set up a new test for us, all it takes is a three months wait…
Ninth step – EDD test. That is what you do to test the brain’s reaction to visual stimuli, so apart from the child needing to look at the screen, he doesn’t need to tell you what he sees. Sounds easier doesn’t it? Well, the truth is it is a three hour test in which your child has electrodes stuck to different places on his head, including under his eyes, on his forehead, at the back of the head, etc. and he has to sit at different positions and heights in front of an old TV set that shows black and white stripes and cubes, at different speeds and sizes, and as intermission he get flashes of bright lights shone directly into his eyes. His very-sensitive-to-light eyes. And you get told off by the very young girl who has no children of her own because your 3 years old is refusing to sit quietly after a couple of hours.
Tenth step – Full diagnosis. After the EDD test they don’t tell you anything, just send you outside for some fresh air and chocolate muffin, and then you come back for the regular clinic (by that time it’s 2pm and you’ve been there since 9am), go through all the regular tests again, and in the end see a new doctor who tells you that “it’s a good time you decided to start treating the child now”. After you don’t kill her or shout at her (because you have Hidai who remains cool in the face of idiocy), you (okay, Hidai) calmly ask to see the other doctor, who actually read the file. Then you get to your old great doctor who says, yes, according to the preliminary results from the EDD your child has Albinism.
After you try to get as much information out of her while in a daze and not really succeeding, all you can really tell is unchanging stable genetic disorder, causing him to see only around 70%. Please wait three months to the specialist.
Eleventh step – the nursery. While you are busy reading everything you can and waiting for the specialist you are faced with a new problem – the nursery teacher has detected a number of, let’s say, different and curious behaviors that your son is demonstrating, and in the parent-teacher meeting tells you your child might have a new problem – behavioral this time, and let’s bring in the school psychologist.
Twelve step – the retina-genetic-specialist. You waited three more months, read everything you can on the internet, and then the moment arrives – it’s time to see the specialist and get some real answers. Yeah, not really. They made Yon do all the regular tests before we saw a young doctor who quizzed us about our genetic history and made us sit down and have our eyes tested because in 80% of the cases you can see the different color at the back of the eye of the mum even though she is just a carrier. He was not successful. We then waited some more to the arrival of the mighty professor who checked Yon, again, and then gave us almost no explanations, no answers and a lot of condensation and attitude. He left us with “he is a mild case and the only thing that will be affected is his ability to drive. Oh yes, and he has around 60% vision and not 70% like you thought. Have a nice day”.
Thirteen step – The school psychologist. After a week of waiting she comes to the school and observes him and then we all have a meeting, in which they talked to us about working with him to be able to verbally express and react to negative situation (instead of crying); saying what he wants / needs; his need for order and routines and the need to be more flexible; the fact that he does not like initiating interactions with other kids on the one hand but will be very happy to play when approached; his love of animals. We talked about his vision problems and explained the possible effect they might have on social interactions like not always seeing clearly facial expressions, and inability to recognise people from afar, and about his need for clear boundaries and structures and his tendency to try and “stretch” those boundaries and about his stubbornness. And about how much of ourselves and of Ron we see in Yon. We ended the session with a clear plan how to help Yon to overcome this difficulties.
I put all of it here, because later we discovered how much of it is related to his vision, so like i said before – make sure you and the school understand the meaning of his vision problems.
Fourteen step – fill the CDT form. That is the Child Development Team referral form, for the full check that will determine if Yon has a behavioral problem as well as an ocular one. I can’t even start to tell you how much fun it is to see all the little things your child is doing “not up to norm” written down. The writing somehow makes it a thousand times more awful.
Fifteen step – back to regular monitoring. So you go back to the regular doctor, go through all the regular tests, but now Yon has moved on to matching letters in the “what can you see” test – he gets letters on the screen and is supposed to say which letter it is on the piece of paper he is holding. He did cooperate and still got the same results, and we got numbers for the first time – 0.55 in one eye, and 0.45 in the other (0 is the best in those numbers). It means he has around 60% vision (because the eyes help each other). Also he got a new pair of glasses (we chose electric blue this time, with Zebra stripes on the inside), and the saying that, well, the doctors are now no longer worried, and we can come back every six months instead of three. And that basically yes, his condition has stabilized now that we have a diagnosis, the last three tests showed the same vision results, his squint and eye-sight are the same and this is how it will remain forever. And that the only thing affected is Yon’s ability to drive. Have a lovely day.
Sixteen step – back to school. So our great nursery teacher found us an outreach program for kids with sensory difficulties, and they sent an advisor who specializes in vision problems and she observed Yon and met with us, to say that well, it’s not only his ability to drive that is affected. She talked about a lot of the problems that the nursery teacher raised, but connected them to the vision thing and not necessarily to behavioral problems, like his inability to locate his friends on the playground, fear of new activities because he can’t see what people are doing, his need to be “safe” – safe activities, safe routines, safe toys. She also told us more about what was affected – his difficulties with depth perceptions – going down the stairs, or on narrow planks; his need to use a special keyboards, and learn to type without looking at the letters; he will need to wear a hat at all times even on cloudy days, even in London. He will need assistance in school – tutor, magnifier glass, iPad, sitting in the front of the class, etc. She finished by telling us to think about registering him as partially-sighted, since it will ensure that he will get all the help he will require in any school since they legally have to do it.
That’s it. This is our story to date – April 20th, 2013. We have hurdles ahead – starting school, telling Yon, learning to live with it. But we’ve come a long way and we are sure we will be able to overcome what is still ahead.