Dilation neeeded, sigh!

My son got his vision checked yesterday. First, the doctor's assistant ran through the usual chart with the occluder (covering one eye at a time) and then using the pinhole as well. He read most of the stuff and plainly said when he couldn't read a particular line. It looks like he will need glasses.

From what I could see the assistant writing on his chart, the vision in his good eye has fallen a bit since his initial Coats diagnosis. It's now 6/9, whereas it was 6/6 earlier. His Coats eye had a 6/9 reading then, and I'm not sure what it is now.

After the test, I asked him about the gray spot and he said it wasn't there. So it was probably a floater - coming and going.

There was a long wait after this, during which the brat got awfully impatient.

It was finally his turn and the doctor started to check his sight with various lenses. After a few minutes, the doctor said he couldn't do a proper job unless the eyes were dilated. This, he absolutely refused to do because he knew he'd have to keep his eyes closed for a long time. "Can we come back tomorrow?" he asked. The doctor's assistant tried to convince him to let him put the drops and that's when the little fellow burst into tears and buried his face in my arms.

I know he hates getting his eyes dilated, so I requested the assistant for another appointment. He finally agreed. So we have another appointment today. I pray for good news.

My mother has always ensured that he gets a balanced diet - enough of vitamin A, iron, etc. because she wanted her grandson to have good vision. I got my glasses when I was 16 and my husband doesn't use glasses at all. But if the little tyke needs glasses, so be it. Anything to ensure that his eyes aren't strained. Maybe over time, the vision in his good eye will further improve.

Another Gray Spot Scare

The little fellow was particularly boisterous all weekend. Last night, just as we were about to turn in, he came and asked me whether the redness in his Coates eye had increased. My heart skipped a beat. His eye has been very mildly red in the area where he underwent a second round of cryopexy in mid-October. The doctor says it will take time to fade away.

Anyway, I looked at his eye and it looked just the same. I asked him if he was in pain. He said the gray spot was back. (He'd mentioned this once in November and we took him to the doctor, who said it was probably fluid pressure. It would go away in a few days, he said, and sure enough, it did.)

I wrote down a few words which he can read, mixing them up with numbers and taking care to see that he couldn't look at what I was writing. I wrote it lightly in pencil, on a white sheet and we were in a room with no bright lighting. Then, I closed his left eye and asked him to read the stuff with his Coates eye. He did that without any problems whatsoever - without taking extra time and without tilting his head to peer out of the corner of his eye. He also said that the gray spot was there, but that the pencil was darker so he could clearly read everything.

I then made the mistake of asking him whether he saw any flashes, or floaters - bits of light appearing and disappearing - and what color they were: gray, orange, red? The story took a turn after that. He said it was orange and then green and now it wasn't there anymore. But he also drew me a proper picture of his earlier gray spot with his crayons.

To cut a long story short - and after having thought about this half the night, I think this is what happened. He probably does have a gray spot in his vision again but it is possible it has disappeared. I'm not going to worry about the other stuff because knowing him, it is possible that his imagination had interfered! But I do know he's not the kind of kid to have come and enquired about redness in his Coates eye if everything was fine.

We'll take him to the neighborhood eye doctor today. He was, after all, the person who first suspected that my son had Coates Disease. So I trust him. His specialist is in a hospital that's a fair distance away and there's usually a long waiting line. Besides, the little fellow hates to have his eyes dilated. I'm hoping that won't be necessary this evening.

Last night, I also explained to him how important anything about his eyes was. I told him it was more important than just about everything else. And if he felt anything out of the ordinary, he had to tell us as soon as he could. He seemed to understand, but was also impatient to have his bedtime story.

Dear God, please let this be a temporary problem with no greater negative implications.

Thank you, Almighty

This morning (Monday, December 24, 2007) we took our son to the doctor for his eye check-up. I have been waiting breathlessly and simultaneously dreading the visit. It was the day we would know whether or not the second round of cryotherapy worked. The little tyke hates these visits and I don't blame him. A hyperactive 6-year-old having to to sit with his eyes closed for nearly an hour is torture. Anyway, we somehow managed that with stories and "fact-stories" and occasional pick-me-up-and-carry-me-around requests.

Then it was time for us to go in. This doctor is a rather to-the-point kind of fellow. So he carried out his examination and with the same deadpan expression, proceeded to look at each and every page of the kid's hospital record. And we waited...and waited...and waited. I was sure my heart was about to fall right out of my mouth when he finally spoke: "Well, it is stable." The best four words I've ever heard.

We then asked questions to get some more details. Turns out that there has been no fresh leakage over the past 2 months, which means the condition has "stabilized." And then the doctor said something even more heartening. "If it stays this way, we can leave it as it is. The exudates (leakage) will get absorbed over time or we can do some laser to get rid of it."

I sat there gaping at him. I know I did. I couldn't speak and I couldn't gulp.

The kid's next check-up is in March to see if it he condition remains stable. My understanding is that if the second round of cryopexy worked, then he has a good chance at beating this thing altogether. Of course, the other doctor's words still haunt me: Be prepared for multiple treatments.

I am prepared, but today's results were God's doing and I thank the Almighty like I have never thanked Him before.

PS: Ever since I was around 8 years old, I've always had this "great expectation" feeling around Christmas. It's weird because we're not Christians, so the feeling that the day was somehow significant seemed baseless. Over the years, I learned to put it down to the whole commercialization of expecting a gift and doing up a Christmas tree and whatnot. (Score one for the Americanization of the world, etc.) Today, that void was filled...and how! It was the best Christmas gift I could have ever hoped for. So once again, thank you, God.

(Originally posted on Monday, December 24, 2007 on an earlier blog)

Why my son can probably never be a fighter pilot

My son has a rare eye condition: Coats Disease. It affects 1 in 350,000 people. Some abnormal blood vessels in the back of the retina begin to leak and the leakage begins to collect in the retina. Eventually, if the case goes undetected, when the leakage starts to collect in the center of the retina, it affects the vision, prompts all kinds of other painful symptoms which I don’t want to think about. Worst case scenario: the retina detaches, can’t be surgically reattached, and results in blindness in that eye. Sometimes, the eye has to be removed and replaced with a cosmetic eye.

Now for the good news. The doctors tell us it’s been detected early (stage 2A) so the chances of arresting the progress of this condition are “very good.” They did the first round of laser – to blast off the existing leakage – and some cryopexy to freeze the abnormal blood vessels. A doctor from whom we took a second opinion told us to be prepared for multiple sessions of cryopexy. So we were. No, change that. We knew he may need multiple sessions. But we weren’t prepared for it.

Another talk with the second-opinion doctor reveled that they can do this kind of treatment only around 4 times.

That’s because every time you send that sub-zero beam into the eye, you freeze (read: destroy) that portion. So while cryopexy is just about the only thing that can control this disease, it is also slightly destructive in nature.

Oh, and he will probably never be able to go up in a roller coaster because those kind of fluctuating pressures can worsen the condition. What am I going to tell him when he insists he’s old enough to try out the more adventurous rides in an amusement park? He can probably never become a pilot like he wants to. Yes, all boys want to become pilots at some point in their life, but having the choice taken away from you sucks, right? And this is a kid who can spend eons acting out dogfights with two of his toy fighter jets!

Anyway, once the cryopexy is done, you need to wait for a month or two before you know if the treatment is working. But before that, you need to get through the procedure, done under general anesthesia. That’s always scary. Everyone in my family has been under GA at least twice. I don’t remember ever being so worried before. Is it because I’m older, or because this is my son we’re talking about?

The second time he went in for the treatment, I waited outside and mouthed prayers incessantly. I was a nervous wreck already – partly from worrying myself sick, and partly from not being able to display my emotions. I was ashamed of myself, because unlike most of my countrymen, I hadn’t been able to make a vow with a deity. I should have done what I had commonly heard: heal my son and I will bring him to your shrine within a year. Why hadn’t I been able to do it? The thought had crossed my mind a hundred times over. Was I weak, or just plain practical and scared? What if I made a vow but was unable to fulfill it? Besides, my family has never been into these things. Our faith is private and personal. Was I being tested? Was my faith not strong enough? Should I have been telling the Almighty: “I know you will heal him,” instead of saying, “please heal my son”?

Coats Disease can sometimes inexplicably reverse itself. A miracle, in other words. Should I have been praying for a miracle? Sworn to change my religion, like many others had, if my son was cured? Or done something equally intense? Was I too selfish? Was I not taking this thing seriously enough?

I was still saying my prayers when a woman with a cute one-year-old baby came up to me and asked me which member of my family had been taken inside the operation theater. I’d seen her when we’d come in. She was bottle-feeding her baby. The child looked like her left eye was smaller than her right eye. I told the woman briefly what had happened. She told me her story in turn.

Poppet came out on a stretcher this time, with an oxygen mask and drips. And his eye was bandaged. He wasn’t crying and howling in a semi-conscious state like the last time, but this was scary too.

I later saw the woman and her husband talking to the doctor. She looked worried, he was asking a lot of questions. The doctor, a reticent fellow, was answering their questions with the same expression he always wore: deadpan. So it was difficult to make out much. After a little while, I went over to ask them. This time, she kept quiet. Her husband did all the talking. “They are saying they could not reconnect the nerve,” he said. A nerve had been disconnected? “They tried, but they could not reattach it. So now they are saying nothing can be done.”

What did that mean? Would she be blind in that eye? “They are saying there is no vision in that eye already,” he said. “They are saying it will become smaller and smaller and they will replace with it with a cosmetic eye. But I will take her somewhere else also. This is very serious.”

And then it hit me. Their daughter was already blind in one eye. And they couldn’t accept that. He was talking about taking her to other places. She was very quiet.

I wanted to run away from there.

My son's procedure had gone well. Of course, we’d know only by December whether it had worked. And if it hadn’t, he still had two more shots at a cure. Was this curable? I’d never heard or read about a cure to this condition? Was it simply ‘managing’ the condition? Would Poppet need to worry about this, or ‘manage’ it for the rest of this life? That suddenly seemed preferable to what I had just heard. For one second, it seemed like some bizarre way of destiny preparing me for what was to come.

And I couldn’t deal with it. Not then, not that day.

So I ran away. Very selfish, very petty, and very cheap of me. But that’s what I did. I mouthed some nonsense about not losing hope, feigning misunderstanding of what they had just told me. And then I fled. Back to my son demanding to know when we could go home.

“Just as soon as you can keep some food down,” I told him. “Twenty minutes after that, we can leave.”

An hour later, after he had managed to keep down two idlis for 15 minutes and shown no signs of throwing up, we left for home.

Post Script:

The little brat has been chosen to MC a part of his school's annual day celebrations (Kindergarten section). Last year, he was in a dance which he really enjoyed. A few days before the show, he came down with high fever. Although he recovered, he was really weak on the day of the show and couldn't take part. His teacher later told me his partner, Chinmayee (who tied a rakhi on his wrist that year) cried her heart out. This year, he told his teacher he didn't want to be in the dance. So they've made him an MC. His check-up is due the Monday before the show. From what we know, whatever the doctor tells us that day should not affect his performance on the day of the show. I continue to pray...

(This was originally written in November on an earlier blog, now deleted.)