I'm going to be really quick about this, because frankly, my mind is really numb. It's not just that the Coats has become active again, it's just a whole lot of stuff around the house and the little fellow's tantrums, especially at sleep time.
Munchkin had an angiogram today. He did cry a bit - more because he was just plain scared rather than the actual pain of having a needle injected into a vein on his hand. And then he threw a tantrum because he had to have his blood checked for his haemoglobin levels. (He had his tetanus and typhoid boosters the Saturday before last, so he was really upset over all the needle pricks.)
Having looked at the angiogram, the doctor said he wanted to keep the vitrectomy on hold, describing it as 'major surgery' this time (sonny would need to be home for three weeks) and said he would rather do another round of laser and cryo. After six weeks, he would see how the response was and then decide on the vitrectomy. I know this sounds crazy, but I had kind of resigned myself to the vitrectomy so this came as a surprise. And while I was over the moon that my son didn't need actual surgery, the fact that he might still have to have it two weeks before his school (he's moving to a new one) reopens for the new academic year (June 1) and miss his first 10 days had me worried. (I had to change schools a lot when I was a kid because we moved around so much and I know how tough it can be to adjust to new surroundings.)
I still haven't been able to get the second opinion based on the tests - the other doctor hasn't responded over e-mail and I haven't been able to reach him on the phone either. (I wonder if I should be trying harder - like I said, my mind is so not functioning correctly right now!)
So that's the update for now. I hope to write again soon.
Saturday, March 27, 2010
Saturday, March 20, 2010
Epiretinal membrane due to Coats
Two weeks back, I took Munchkin for his six-monthly eye exam. And for some strange reason, I had this weird feeling in my gut that something wasn't right. It was that 15-month period again and I thought I was being superstitious or just plain idiotic. Unfortunately, we didn't get to hear that the disease was stable. There's now a membrane formed over the retina of his affected eye - the doctor says it's something related to Coats. It wasn't there when we had his last eye exam in August 09. His last procedure was in January 09 following the diagnosis that there was fresh leakage, in December 08
The only way to get rid of this membrane, is to surgically remove it - it's called a vitrectomy. Munchkin heard the doctor saying that and although he remained poker-faced through all the discussions I had with the doctor, he freaked out and started to cry soon after we had left the doctor's office and were waiting for the OCT and Fundus tests to be done. I was more or less crying myself, and therefore not the best person to be telling him that everything would be okay. He also seemed worried about the angiogram procedure that the doctor said he'd have to carry out before the surgery.
Eventually, we got the OCT test done and the doctor showed us the membrane. I then asked him to give Munchkin some reassurance and the reticent man that he is, he simply told him to not worry, he'd take care of everything. That didn't seem to go down pretty well with the little fellow. So I asked him to ask the doctor whatever he wanted. At which he promptly asked him whether his eye would get disfigured or if he could go blind during the surgery. While the doctor had explained that there was a 10% chance of retinal damage or detachment (I'm still quaking at the thought of that), he gave Munchkin a really reassuring pat on the shoulder and said: Absolutely not.
The kid's next question was: "Will the injection you give me for the angio hurt my veins?" To this doctor said: "A little. Do you remember how we gave you anesthesia the last time?" Munchkin has had three rounds of cryo and laser since 2007, so he nodded. "Well, it will be a bit like that," explained the doctor. "Okay, thanks." responded Munchkin and then was back to normal after that. Actually, a bit extreme, because he knew this was his opportunity to get me to buy him an insanely expensive and totally useless toy that he'd been hankering for for weeks. I admit, he read me right.
His last typhoid shot and five-year tetanus shot were due the following week and he dealt with those bravely enough. Now, I'm waiting to hear from our second consultant. Fingers crossed and hands joined in prayer.
Munchkin is moving ot a nwe school this June and is very, very excited about it. I wonder if he's worried that his eye will look worse after the vitrectomy and if he might get made fun of. Please pray for him - that the surgery, if we do have to have it, goes off well and he makes a quick and full recovery.
The only way to get rid of this membrane, is to surgically remove it - it's called a vitrectomy. Munchkin heard the doctor saying that and although he remained poker-faced through all the discussions I had with the doctor, he freaked out and started to cry soon after we had left the doctor's office and were waiting for the OCT and Fundus tests to be done. I was more or less crying myself, and therefore not the best person to be telling him that everything would be okay. He also seemed worried about the angiogram procedure that the doctor said he'd have to carry out before the surgery.
Eventually, we got the OCT test done and the doctor showed us the membrane. I then asked him to give Munchkin some reassurance and the reticent man that he is, he simply told him to not worry, he'd take care of everything. That didn't seem to go down pretty well with the little fellow. So I asked him to ask the doctor whatever he wanted. At which he promptly asked him whether his eye would get disfigured or if he could go blind during the surgery. While the doctor had explained that there was a 10% chance of retinal damage or detachment (I'm still quaking at the thought of that), he gave Munchkin a really reassuring pat on the shoulder and said: Absolutely not.
The kid's next question was: "Will the injection you give me for the angio hurt my veins?" To this doctor said: "A little. Do you remember how we gave you anesthesia the last time?" Munchkin has had three rounds of cryo and laser since 2007, so he nodded. "Well, it will be a bit like that," explained the doctor. "Okay, thanks." responded Munchkin and then was back to normal after that. Actually, a bit extreme, because he knew this was his opportunity to get me to buy him an insanely expensive and totally useless toy that he'd been hankering for for weeks. I admit, he read me right.
His last typhoid shot and five-year tetanus shot were due the following week and he dealt with those bravely enough. Now, I'm waiting to hear from our second consultant. Fingers crossed and hands joined in prayer.
Munchkin is moving ot a nwe school this June and is very, very excited about it. I wonder if he's worried that his eye will look worse after the vitrectomy and if he might get made fun of. Please pray for him - that the surgery, if we do have to have it, goes off well and he makes a quick and full recovery.
Sunday, October 4, 2009
It's still stable
I can't apologize enough for not having posted this 6 weeks back when we first got the news - which tells me I was doing too much and not thinking straight.
Munchkin's Coats is STABLE and our poker-faced, near-reticent doctor went to the extent of saying it was "better" - which must be true, because he's asked to come after SIX months! :o) Now that's what I call GOOD NEWS!
Thank you, dear God.
Munchkin's Coats is STABLE and our poker-faced, near-reticent doctor went to the extent of saying it was "better" - which must be true, because he's asked to come after SIX months! :o) Now that's what I call GOOD NEWS!
Thank you, dear God.
Monday, May 18, 2009
Yay!
The Coats is stable!! Even better, some of the exudates seem to have been absorbed! :-)
The wait for the appointment seemed interminable. The April 19th date got pushed to the 23rd, which got pushed to May 16, and then today, the 18th. We called ahead to confirm that Munchkin's doctor had actually come in and then set out to the hospital, a 45-minute drive from our house.
When we got there, we found he had been called away for an emergency surgery. Decided to wait it out. Got the little fellow's vision checked (status quo maintained, another reason to cheer!) and then got his eyes dilated. This time, he cribbed very little.
In fact, it was kinda the opposite from a year ago. His father and I used to tell him stories to keep him occupied. This time, he was the one telling me stories - all with his eyes closed.
Even after his eyes had dilated, we had to wait a good hour, during which time he got impatient, so he and his father went for a walk around the hospital. And I actually fell asleep in the crowded waiting room. Then suddenly, the doctor's assistant was calling us and we were in his room. Munchkin settled into the chair and the doctor carried out his exam.
"It's better," was the first thing he said, and I nearly gasped from sheer relief! He then went on to explain that some of the exudates had absorbed. Then said to come back in three months and keep a look out for any complaints regarding deteriorating vision. His macula is still safe (thank you, dear God) but we should be careful.
And that was that. :-) A three-month reprieve, but a reprieve. And for that, I'm grateful.
The wait for the appointment seemed interminable. The April 19th date got pushed to the 23rd, which got pushed to May 16, and then today, the 18th. We called ahead to confirm that Munchkin's doctor had actually come in and then set out to the hospital, a 45-minute drive from our house.
When we got there, we found he had been called away for an emergency surgery. Decided to wait it out. Got the little fellow's vision checked (status quo maintained, another reason to cheer!) and then got his eyes dilated. This time, he cribbed very little.
In fact, it was kinda the opposite from a year ago. His father and I used to tell him stories to keep him occupied. This time, he was the one telling me stories - all with his eyes closed.
Even after his eyes had dilated, we had to wait a good hour, during which time he got impatient, so he and his father went for a walk around the hospital. And I actually fell asleep in the crowded waiting room. Then suddenly, the doctor's assistant was calling us and we were in his room. Munchkin settled into the chair and the doctor carried out his exam.
"It's better," was the first thing he said, and I nearly gasped from sheer relief! He then went on to explain that some of the exudates had absorbed. Then said to come back in three months and keep a look out for any complaints regarding deteriorating vision. His macula is still safe (thank you, dear God) but we should be careful.
And that was that. :-) A three-month reprieve, but a reprieve. And for that, I'm grateful.
Tuesday, April 28, 2009
Why me? The question I was dreading
Last week, I was prepping my son for his quarterly eye-exam (the doc told us on Jan 19, "I'll see him in 3 or 4 months.") and he finally asked the question I've been dreading ever since he was diagnosed with Coats in July 2007.
He was fussing about the stinging he has to bear because of the eye dilation drops they put into both his eyes when he suddenly blurted: "Why did this happen to me, Mamma?"
I had anticipated this question, but I still didn't have an answer that was convincing.
"Well..." I hesitated, but then decided it was best to simply state the facts. "We don't know, baby. A man called George Coats discovered this condition, but the doctors still haven't figured why it happens."
"Does anybody in our family have it?"
"No, and it doesn't run in families. It just...happens."
"How can something just happen?"
My mind flashed back to the innumberable times when he'd dropped milk/juice/other stubborn liquids on the sofa or left his toy cars on the floor, almost causing a serious skid accident...and I smiled, grateful that I could manage a smile.
"Well, sometimes they just do. Take me...all the joints in the left hand side of my body are kinda loose."
"Loose? How did they get that way?"
"No idea. My left arm broke when the doctors were taking me out of your Grandma's tummy. And I can do some neat tricks with my left thumb. And you already know the doctors put in a screw below my left knee to prevent it from getting dislocated over and over."
He was quiet a bit, then said: "But the eye drops really sting." I was just grateful he's never complained about the cryo-related pain (mostly managed with painkillers and he doesn't remember the psot-op thrashing around).
"I know, baby. And I'm really, really sorry you have to go through that. But you see, the eye drops help the doctor look right into your eyes and see if everything's fine." He needs regular eye exams for the rest of his life, but I didn't feel like saying that out loud just then.
"Did it pain when they put the screw into your knee?"
I gulped - I still freak out a bit when I recall the pain of the dislocation. "No, they put me to sleep when they did that..."
"You had anaesthesia too!"
"Yes, I did. And then they put a cast on my leg with a little window at the knee to check on the stitches."
"Did you have to use a stick to walk?"
"Well, I had to use crutches first. And the first time I lowered my leg from the bed after the surgery, it was so painful that I had tears flowing down my face although I didn't mean to cry."
And then I told him about how I had stood there, at the foot of my bed, refusing to budge for God knows how long, hanging on to the railing for dear life. How I had finally taken three steps and was ready to collapse, too exhausted to climb back into bed. How I had learnt to walk, first with two crutches, then with one and then with a walking stick, and how my knee wouldn't bend much in the first few months so I would upturn a waste basket to rest my leg on at my very first job. And how I had one day phoned my doctor, without letting my mother know, and asked him if I would ever be able to fully bend my left knee again. "It will take time. Have faith," said my surgeon.
With Coats, time is not part of the equation.
Faith is all we have.
That's what I told my son: We may not know why, but we do have faith in the Almighty.
He nodded his head and cuddled up to me to go to sleep.
Munchkin's eye exam has been delayed to mid-May because his specialist is away attending a conference in Florida.
He was fussing about the stinging he has to bear because of the eye dilation drops they put into both his eyes when he suddenly blurted: "Why did this happen to me, Mamma?"
I had anticipated this question, but I still didn't have an answer that was convincing.
"Well..." I hesitated, but then decided it was best to simply state the facts. "We don't know, baby. A man called George Coats discovered this condition, but the doctors still haven't figured why it happens."
"Does anybody in our family have it?"
"No, and it doesn't run in families. It just...happens."
"How can something just happen?"
My mind flashed back to the innumberable times when he'd dropped milk/juice/other stubborn liquids on the sofa or left his toy cars on the floor, almost causing a serious skid accident...and I smiled, grateful that I could manage a smile.
"Well, sometimes they just do. Take me...all the joints in the left hand side of my body are kinda loose."
"Loose? How did they get that way?"
"No idea. My left arm broke when the doctors were taking me out of your Grandma's tummy. And I can do some neat tricks with my left thumb. And you already know the doctors put in a screw below my left knee to prevent it from getting dislocated over and over."
He was quiet a bit, then said: "But the eye drops really sting." I was just grateful he's never complained about the cryo-related pain (mostly managed with painkillers and he doesn't remember the psot-op thrashing around).
"I know, baby. And I'm really, really sorry you have to go through that. But you see, the eye drops help the doctor look right into your eyes and see if everything's fine." He needs regular eye exams for the rest of his life, but I didn't feel like saying that out loud just then.
"Did it pain when they put the screw into your knee?"
I gulped - I still freak out a bit when I recall the pain of the dislocation. "No, they put me to sleep when they did that..."
"You had anaesthesia too!"
"Yes, I did. And then they put a cast on my leg with a little window at the knee to check on the stitches."
"Did you have to use a stick to walk?"
"Well, I had to use crutches first. And the first time I lowered my leg from the bed after the surgery, it was so painful that I had tears flowing down my face although I didn't mean to cry."
And then I told him about how I had stood there, at the foot of my bed, refusing to budge for God knows how long, hanging on to the railing for dear life. How I had finally taken three steps and was ready to collapse, too exhausted to climb back into bed. How I had learnt to walk, first with two crutches, then with one and then with a walking stick, and how my knee wouldn't bend much in the first few months so I would upturn a waste basket to rest my leg on at my very first job. And how I had one day phoned my doctor, without letting my mother know, and asked him if I would ever be able to fully bend my left knee again. "It will take time. Have faith," said my surgeon.
With Coats, time is not part of the equation.
Faith is all we have.
That's what I told my son: We may not know why, but we do have faith in the Almighty.
He nodded his head and cuddled up to me to go to sleep.
Munchkin's eye exam has been delayed to mid-May because his specialist is away attending a conference in Florida.
Monday, January 19, 2009
Post-cryo eye exam & Back to school
I made a big mistake this morning. I told my son that his eye exam today would not involve dilation drops. I thought I was right because the doctor had never had his eyes dilated so soon after a round of cryo. But this time he did, and I was in the dock for my 'false promise'.
Worse, it took inordinately long for our turn to come (which meant I didn't get to work until lunch!) during which time the little rascal whined and whined (until we forced him to eat something - he was better after that.)
When we finally got to the doctor, he said the cryo had been effective. The next check will be in late April/early May.
We had a bite to eat at the hospital canteen (they make the most wonderful idlis - Munchkin's favourite food after 'red chicken') but had to wait some more because a couple of details on his discharge summary were incorrect. In fact, there are still some errors - but we didn't have the time - and I didn't have the patience - to wait around some more.
I actually wanted to take an autorickshaw and go to the office straight from the hospital, but DH said they would drop me in the car. And then we go into a series of some seriously demented traffic jams, during which time the cacophonous offspring nearly drove me deaf and mad. I made some very loud threats and sulked for the hour it took to travel 12 km!
Anyway, the little tyke goes back to school tomorrow. I need to have a word with his class teacher not to mollycoddle him needlessly. I'm a bit worried about Munchkin's behavior - he's been trying to leverage this condition to get new toys and eat junk food. And constantly whines! About the stupidest things. I'm at my wits' end, trying to balance his tantrums with his eye condition. I hope his teacher has better luck!
Worse, it took inordinately long for our turn to come (which meant I didn't get to work until lunch!) during which time the little rascal whined and whined (until we forced him to eat something - he was better after that.)
When we finally got to the doctor, he said the cryo had been effective. The next check will be in late April/early May.
We had a bite to eat at the hospital canteen (they make the most wonderful idlis - Munchkin's favourite food after 'red chicken') but had to wait some more because a couple of details on his discharge summary were incorrect. In fact, there are still some errors - but we didn't have the time - and I didn't have the patience - to wait around some more.
I actually wanted to take an autorickshaw and go to the office straight from the hospital, but DH said they would drop me in the car. And then we go into a series of some seriously demented traffic jams, during which time the cacophonous offspring nearly drove me deaf and mad. I made some very loud threats and sulked for the hour it took to travel 12 km!
Anyway, the little tyke goes back to school tomorrow. I need to have a word with his class teacher not to mollycoddle him needlessly. I'm a bit worried about Munchkin's behavior - he's been trying to leverage this condition to get new toys and eat junk food. And constantly whines! About the stupidest things. I'm at my wits' end, trying to balance his tantrums with his eye condition. I hope his teacher has better luck!
Saturday, January 17, 2009
Out of the haze...somewhat
It's been an awful couple of weeks in terms of endurance. The one bright spot has been that the swelling in Poppet's eye is so much lower now. He's going to have a black eye, though, now that the swelling is down.
He's been very cranky - throwing tantrums and whatnot. He broke his spectacle frames a fit of anger last week and I've had to shell out a nifty sum for a new pair because the lenses were too small to fit into any new pair we checked out. He'll get his new pair next Thursday. Which means he'll have to wear plain glasses to school on Tue & Wed. We have a follow-up doctor's appointment on Monday morning: and I'm hoping that the doctor will give him something to make the swelling go away quickly.
We spent the day out with my mom today. First to the opticians, then to a store, then to a great meal at restaurant. It was nice, really.
He's been very cranky - throwing tantrums and whatnot. He broke his spectacle frames a fit of anger last week and I've had to shell out a nifty sum for a new pair because the lenses were too small to fit into any new pair we checked out. He'll get his new pair next Thursday. Which means he'll have to wear plain glasses to school on Tue & Wed. We have a follow-up doctor's appointment on Monday morning: and I'm hoping that the doctor will give him something to make the swelling go away quickly.
We spent the day out with my mom today. First to the opticians, then to a store, then to a great meal at restaurant. It was nice, really.
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