It's been nearly a year and a half since Munchkin's last two surgeries (a cryo and laser in April 2010 and a vitrectomy in May 2010). We have an eye exam coming up towards the end of the month. And already, the dread is starting to build. Why? Because we've never gone so long without surgery ever since his condition was diagnosed back in July 2007. He's nine now (tenth birthday coming up in Jan) and the doctor has said that there is a possibility of the disease stabilizing as a child grows older. Coats invariably tends to throw up 'side-effects' like cataracts (that's what the vitrectomy was for - a thin film had formed over his retina, creating 'macular pucker').
And he positively hates the thought of going through another round of laser - he says he hates having to be hungry for so long, gets scared of 'falling asleep' and hates the smell of the anesthesia. What's worse, he surfaces from the anesthesia rather badly, usually kicking and screaming, literally. When he was little, I would scoop him up and try to calm him down. Last year, I realized I could no longer do this.
His mid-term vacation begins on the 24th. We have a mom-and-son holiday lined up at the beach for 4 days. The 'practical' person that I am, I figure he can still have the laser and get back to school in time even after the holiday. I've lost count of the number of holidays I've planned for us and then not made reservations because we had an eye exam coming up and what if he needed cryo and laser... well, no more. I want nothing more than for this disease to have stabilized and get another four-month breather. Please pray for my little munchkin!
Thursday, September 15, 2011
Sunday, August 7, 2011
Late update on April 2010 eye exam
Things went well, otherwise I'd have posted earlier (I think!) The swelling (macular pucker) has totally subsided (the vitrectomy took place in May 2010) and it's taken that long for things to return to 'normal'.
It's been one long year since then. Possibly the worst year yet for our family as a whole. But the silver lining has been that Munchkin's Coats has been stable for over a year now.
The next eye exam is due in late September/early October. That'll be 18 months since his last cryopexy and laser. Wouldn't it be such a blessing if that eye exam came out clear too?
It's been one long year since then. Possibly the worst year yet for our family as a whole. But the silver lining has been that Munchkin's Coats has been stable for over a year now.
The next eye exam is due in late September/early October. That'll be 18 months since his last cryopexy and laser. Wouldn't it be such a blessing if that eye exam came out clear too?
Friday, October 15, 2010
Some more relief
We went back for the follow-up eye exam last Saturday. Munchkin got slightly irritated as usual with all the waiting. But after I agreed to Chinese for lunch, was not just well-behaved but was more or less stuck to me like super glue.
The doc said the condition was stable - and for the first time in the 3+ years that we've been seeing him - said that there was some evidence that Coats tended to stabilize for longer periods of time as children grew older. The younger you are when it gets activated, the more aggressive it is. (Munchkin was 5-1/2 when his condition was diagnosed and the doctor reckoned he'd had it for 2-1/2 years at the time.)
The OCT test showed that the macular pucker had more or less subsided completely and even the Fundus photos clearly showed fewer exudates. Thank you, God.
The vision in his Coats eye still isn't completely clear, but it is a lot better than it was. And the eye pressure is under control.
The doc also mentioned that Munchkin was the first child he'd operated upon for a vitrectomy due to Coats Disease. (I remember he'd done three other vetrectomies that day on children, but I guess now we know those weren't cases of Coats.)
(Oh, and there was a new and weird medical technician/optometrist who did Munchkin's refraction test to check his vision. We've never seen her at the hospital before. She didn't give him the regular test spectacles (don't know what they're called) into which the slip in the different lenses. Instead, she made him cover that eye with the palm of his hand - and I could see he was uncomfortable - and made him read the eye chart. If he adjusted his arm, she roughly pushed it up again! I bore around 5 minutes of that, before I stood up and asked her why she wasn't using the regular testing spectacles. She ignored me and made him read some more. But the next time she pushed his arm up again, I nearly shouted my question again. She didn't bat an eyelid, but did put those spectacles on and finished the exam. Mission accomplished.)
That evening, he rode his bicycle outside the apartment complex onto an outside road to come to a temple near our house. It was a Hanuman temple (we'd been to the Hanuman temple on Tughlaq Road in New Delhi back in May to ask for blessings ahead of Munchkin's vitrectomy) and though my heart was in my mouth for most of the time (the road goes uphill, is narrow, and has plenty of blind curves and a lane every 100 feet!) he managed it with aplomb. I was so proud. I love to see him ride his bike. I was able to learn it only when I was 13, and then I didn't get to practice much so I still can't ride one. :o( So I absolutely love to seem him whizz about.
postscript: He lost his second pair of glasses back in September and I had another one made. And the morning we had to go to the hospital, we couldn't find that pair either. Six days down, we still haven't found them. Glasses cost a pretty packet, and I'm really just tired of him misplacing important stuff - he has two sets of strings and really attractive looking glass cases and everything, but he just can't keep his things in a safe place. Sigh...
The doc said the condition was stable - and for the first time in the 3+ years that we've been seeing him - said that there was some evidence that Coats tended to stabilize for longer periods of time as children grew older. The younger you are when it gets activated, the more aggressive it is. (Munchkin was 5-1/2 when his condition was diagnosed and the doctor reckoned he'd had it for 2-1/2 years at the time.)
The OCT test showed that the macular pucker had more or less subsided completely and even the Fundus photos clearly showed fewer exudates. Thank you, God.
The vision in his Coats eye still isn't completely clear, but it is a lot better than it was. And the eye pressure is under control.
The doc also mentioned that Munchkin was the first child he'd operated upon for a vitrectomy due to Coats Disease. (I remember he'd done three other vetrectomies that day on children, but I guess now we know those weren't cases of Coats.)
(Oh, and there was a new and weird medical technician/optometrist who did Munchkin's refraction test to check his vision. We've never seen her at the hospital before. She didn't give him the regular test spectacles (don't know what they're called) into which the slip in the different lenses. Instead, she made him cover that eye with the palm of his hand - and I could see he was uncomfortable - and made him read the eye chart. If he adjusted his arm, she roughly pushed it up again! I bore around 5 minutes of that, before I stood up and asked her why she wasn't using the regular testing spectacles. She ignored me and made him read some more. But the next time she pushed his arm up again, I nearly shouted my question again. She didn't bat an eyelid, but did put those spectacles on and finished the exam. Mission accomplished.)
That evening, he rode his bicycle outside the apartment complex onto an outside road to come to a temple near our house. It was a Hanuman temple (we'd been to the Hanuman temple on Tughlaq Road in New Delhi back in May to ask for blessings ahead of Munchkin's vitrectomy) and though my heart was in my mouth for most of the time (the road goes uphill, is narrow, and has plenty of blind curves and a lane every 100 feet!) he managed it with aplomb. I was so proud. I love to see him ride his bike. I was able to learn it only when I was 13, and then I didn't get to practice much so I still can't ride one. :o( So I absolutely love to seem him whizz about.
postscript: He lost his second pair of glasses back in September and I had another one made. And the morning we had to go to the hospital, we couldn't find that pair either. Six days down, we still haven't found them. Glasses cost a pretty packet, and I'm really just tired of him misplacing important stuff - he has two sets of strings and really attractive looking glass cases and everything, but he just can't keep his things in a safe place. Sigh...
Sunday, July 25, 2010
Eye pressure's OK
We weren't able to meet the Glaucoma specialist last week, so there was little choice but to spend another Saturday morning at the eye hospital. Thankfully, there was no dilation of the eyes involved. And after a bunch of other tests (refraction and eye pressure) the consultant finally said that Munchkin didn't need the eye drops any more. :o)
We go back in September for a regular follow-up.
We go back in September for a regular follow-up.
Saturday, July 17, 2010
Post-vitrectomy update
We had another follow-up exam at the hospital today. (The last one was on June 19, but I couldn't post right after - too much going on.) They did an OCT and progress seems good. The pucker is not so bad and 'high' any more. It seems to be subsiding. But the doctor says it will take time for it to go back down completely. Which means that Munchkin's vision is still a little blurry. But thank heavens it's not affecting his vision.
He's in a new school since the start of the new academic year (June) and likes it very much. He hasn't complained about any vision issues. So I'm just keeping my fingers crossed.
We couldn't meet the glaucoma specialist today, though. The post-vitrectomy medication was steroid based and caused his eye pressure to surge. He's been on eye drops to keep the pressure under control and it'd fallen significantly today. The retinal surgeon said it would be a good idea to check with the glaucoma specialist as to whether or not the drops needed to continue. (At our June visit, the glaucoma specialist had said that the drops would probably have to continue well into August.) We'll probably go back next Saturday and check on that.
Saturdays are really crowded at the hospital. Despite my best efforts, we didn't get there until 9.20 am and that led to everything else getting delayed. Not that I can do much to speed things up - nothing works... but I digress.
The retinal specialist wants to see us in 10 weeks' time, so I'll keep praying, keep my fingers crossed and hope for the best.
He's in a new school since the start of the new academic year (June) and likes it very much. He hasn't complained about any vision issues. So I'm just keeping my fingers crossed.
We couldn't meet the glaucoma specialist today, though. The post-vitrectomy medication was steroid based and caused his eye pressure to surge. He's been on eye drops to keep the pressure under control and it'd fallen significantly today. The retinal surgeon said it would be a good idea to check with the glaucoma specialist as to whether or not the drops needed to continue. (At our June visit, the glaucoma specialist had said that the drops would probably have to continue well into August.) We'll probably go back next Saturday and check on that.
Saturdays are really crowded at the hospital. Despite my best efforts, we didn't get there until 9.20 am and that led to everything else getting delayed. Not that I can do much to speed things up - nothing works... but I digress.
The retinal specialist wants to see us in 10 weeks' time, so I'll keep praying, keep my fingers crossed and hope for the best.
Thursday, May 20, 2010
Pause
I'm stopping the posts on this blog after last night. A lot happened that shouldn't have. But it did. I will post updates on Munchkin's Coats condition. And I will reply to anyone who wants to know more about Coats and cryo and laser and vitrectomy. (He's recovering quite well, thank God.)
The centre of my universe - the raison d'etre for this blog - well, let's just say the axis has shifted, leaving me with wounds that are raw and bleeding. It's a long story, but we're probably just on living through chapter 2. Some day, when I have the strength, I will restart the non-Coats part of this blog. Until then ...
The centre of my universe - the raison d'etre for this blog - well, let's just say the axis has shifted, leaving me with wounds that are raw and bleeding. It's a long story, but we're probably just on living through chapter 2. Some day, when I have the strength, I will restart the non-Coats part of this blog. Until then ...
Wednesday, May 19, 2010
Swelling scare
It's the one thing I was dreading...the most natural instinctive action first thing in the morning is to rub your eye - especially one that's had ointment kohl-ed into it the previous night. For all my hawkeyed monitoring, I couldn't grab the kiddo's hand in time to stop a solitary rub of his eyelid (yes, the one that had been operated on). An hour later, the eyelid was swollen and I was panicking.
His doctor was going to be in surgery today, but his assistant asked us to bring the kid along by 2 pm anyway. When we go there, we learnt that the surgeon was going to be delayed because two unexpected cases had come in. We finally met another surgeon, who said - bless him - that the eye was 90% healed and that swelling could be expected. It was likely a result of that one rub in the morning, but that was nothing to worry about. Phew!
The doctor who saw him also allowed him an hour of TV every day, in bursts of 30 minutes each. But that wasn't enough for the kid - he was still fixated on getting a Lego set.
It's well nigh impossible to find a choice of Lego sets in Bangalore. And Lego doesn't ship to India so you can't buy the stuff online either. Most sets are imported and therefore really expensive. He has an old one of mine he plays with, courtesy my mother who has the of preserving stuff like new. And we've managed to buy a few smaller vehicle kits (an ambulance and a race car) every now and then without breaking the bank. But now he's been wanting another set which is way beyond any reasonable price for a set of plastic pieces, no matter how legendary they are. Don't get me wrong - I'm a great fan of Lego - but this is just getting to be a bit much. The hospital visit meant I got into the office only by 3.30pm and left by 8.30pm. By that time, all the shops were downing shutters. I thought I'd convinced him on the phone about the delay to tomorrow, but even as I'm writing this, he's sulking - and looking quite like he's going to throw a tantrum - about having to wait 23 hours for a Lego set, instead of the 6-7 hours he'd imagined. Talk about wanting instant gratification... (to add to which my cold and cough is now so bad that my voice is cracked and the pain is just about bearable with a couple of painkillers!)
Anyway, I'm just glad the swelling was nothing to be scared of. Now to go manage the tantrum before it turns into a full blown epic battle.... sigh.
His doctor was going to be in surgery today, but his assistant asked us to bring the kid along by 2 pm anyway. When we go there, we learnt that the surgeon was going to be delayed because two unexpected cases had come in. We finally met another surgeon, who said - bless him - that the eye was 90% healed and that swelling could be expected. It was likely a result of that one rub in the morning, but that was nothing to worry about. Phew!
The doctor who saw him also allowed him an hour of TV every day, in bursts of 30 minutes each. But that wasn't enough for the kid - he was still fixated on getting a Lego set.
It's well nigh impossible to find a choice of Lego sets in Bangalore. And Lego doesn't ship to India so you can't buy the stuff online either. Most sets are imported and therefore really expensive. He has an old one of mine he plays with, courtesy my mother who has the of preserving stuff like new. And we've managed to buy a few smaller vehicle kits (an ambulance and a race car) every now and then without breaking the bank. But now he's been wanting another set which is way beyond any reasonable price for a set of plastic pieces, no matter how legendary they are. Don't get me wrong - I'm a great fan of Lego - but this is just getting to be a bit much. The hospital visit meant I got into the office only by 3.30pm and left by 8.30pm. By that time, all the shops were downing shutters. I thought I'd convinced him on the phone about the delay to tomorrow, but even as I'm writing this, he's sulking - and looking quite like he's going to throw a tantrum - about having to wait 23 hours for a Lego set, instead of the 6-7 hours he'd imagined. Talk about wanting instant gratification... (to add to which my cold and cough is now so bad that my voice is cracked and the pain is just about bearable with a couple of painkillers!)
Anyway, I'm just glad the swelling was nothing to be scared of. Now to go manage the tantrum before it turns into a full blown epic battle.... sigh.
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