Not much to report at the minute as we are waiting for the appointment at Moorfields on Thursday to find out next steps regarding Aaron's congenital glaucoma treatment.
On the one hand it's hard to wait - we want to know what the future holds for our little man. On the other hand, we are enjoying these few days with Aaron as we're anticipating at the very least he may be kind of uncomfortable in a week from now. We don't know exactly what to expect after Thursday's appointment, only that we've been asked to plan to stay overnight as surgery on Friday is very likely.
We don't know what the surgery would be but from the bit of research I've done it could be a goniotomy or a trabeculectomy. We received a hard copy of Aaron's referral letter from the PRUH to Moorfields and it has his corneal diameters measuring at 11mm (left) and 12mm (right) so based on that alone (and bearing in mind I am not an opthamologist and one week ago had never even heard of congenital glaucoma) it looks probable that it would be a goniotomy.
But who knows! Given the surprise of this diagnosis (as Clark Griswold once said, if I woke up tomorrow with my head sewn to the carpet I wouldn't be more surprised than I am right now) anything goes I suppose. We are going with the flow for now, ignorance is bliss and we'll enjoy our happy holding pattern.
Showing posts with label eye health in infants. Show all posts
Showing posts with label eye health in infants. Show all posts
Monday, 17 October 2016
Sunday, 16 October 2016
This is how you give an infant eye drops
Aaron is on two types of drops to control his congenital glaucoma before surgery and we had tried a variety of methods to get them into his eyes including:
I did a bit of searching and found the most helpful video from Moorfields for giving eye drops to infants or young children:
https://www.youtube.com/watch?v=d3wtEWX7HxU
I went with the method of putting him between my legs, sitting on his arms, squeezing the drops into the corner of his eye and then gently working his eyelids until the drops go in. Pleasant it's not but there's less screaming each time and it's been 100% effective. Fingers crossed that these drops help!
- Holding him like a newborn and leaning his head back (he pinched his eyes so tight we'd have needed a vice to get in there)
- Putting him over the shoulder and bending over (see above)
- Putting him in the jumperoo, tipping the jumperoo upside down and one of us distracted him with the toys while the other squirted drops (this was mildly effective but hit and miss)
It's tricky enough trying to get him the drops spaced 12 hours apart as his sleep is so erratic right now. Couple that with the fact that Adam can't always get home from work before Aaron's bedtime (and none of the above methods can be attempted solo, at least not in our house) and we were desperate.
I did a bit of searching and found the most helpful video from Moorfields for giving eye drops to infants or young children:
https://www.youtube.com/watch?v=d3wtEWX7HxU
I went with the method of putting him between my legs, sitting on his arms, squeezing the drops into the corner of his eye and then gently working his eyelids until the drops go in. Pleasant it's not but there's less screaming each time and it's been 100% effective. Fingers crossed that these drops help!
Friday, 14 October 2016
The first screening
Adam, Aaron and I had just spent two beautiful weeks visiting family and friends in the US and so Aaron and I were a bit jet lagged when we went to the PRUH for what was meant to be the screening to check out his squint.
The poor kid also had a cold from travelling and was sound asleep to boot when we arrived at the PRUH, so it took a while for the orthoptist to get a look at his eyes. I told her about noticing the squint in photos and that a few of my cousins have had squints. The orthoptist told me how misleading photos can be in diagnosing a squint and that it's really only immediate family members having a squint - not twice or three times removed cousins - that would indicate Aaron was genetically predisposed. At that point, I thought maybe I had overreacted by bringing him in.
However, once Aaron opened his eyes and engaged with the tests, the orthoptist immediately said 'This isn't what I'd expect for his age' (5.5 months). She did a few more tests and wanted to bring in a specialist for a second opinion. The specialist ended up being gone for the day but another doctor, one from Great Ormond Street and so very experienced with children, was available and she joined us in the exam room. The two doctors looked at Aaron's eyes and spoke back in forth in medical terms but I was able to pick up a few things: Aaron was very sensitive to light and his cornea looked cloudy - things Adam and I had noticed but hadn't realised were symptoms of possible serious problems.
They released us with a promise to get Aaron back in immediately to see the specialist they'd been trying to find earlier. The NHS isn't big on preventative maintenance so the sense of urgency was an instant red flag.
Naturally I couldn't resist having a look on Google once we left. I know, I know searching online usually leads to descriptions of rare diseases featured on web sites you wouldn't trust to diagnose dandruff let alone vision problems but the Type A personality I am needed to get at least a sense of what we might be dealing with.
However, on this occasion the search was useful. I learned that sensitivity to light is caused by pressure in the eyes and this eventually led me to congenital glaucoma. The results were all from sites like www.glaucoma.org and congenital glaucoma was pretty much the only thing coming up that could be the problem. The disease sounded scary, rare (1 in 10,000 babies are affected) and treatable mostly by surgery.
Meanwhile, within 10 minutes of leaving the PRUH (!) I got the call that we needed to come back the next day for an eye clinic with the specialist. Friends and family advised me to stay positive and avoid assuming my Dr. Google diagnosis was accurate.
Dinner at our house that night was subdued but we thought there must surely be some other reason for Aaron's symptoms - the rarity of congenital glaucoma made it seem too implausible. All we could do was wait for the clinic.
The poor kid also had a cold from travelling and was sound asleep to boot when we arrived at the PRUH, so it took a while for the orthoptist to get a look at his eyes. I told her about noticing the squint in photos and that a few of my cousins have had squints. The orthoptist told me how misleading photos can be in diagnosing a squint and that it's really only immediate family members having a squint - not twice or three times removed cousins - that would indicate Aaron was genetically predisposed. At that point, I thought maybe I had overreacted by bringing him in.
However, once Aaron opened his eyes and engaged with the tests, the orthoptist immediately said 'This isn't what I'd expect for his age' (5.5 months). She did a few more tests and wanted to bring in a specialist for a second opinion. The specialist ended up being gone for the day but another doctor, one from Great Ormond Street and so very experienced with children, was available and she joined us in the exam room. The two doctors looked at Aaron's eyes and spoke back in forth in medical terms but I was able to pick up a few things: Aaron was very sensitive to light and his cornea looked cloudy - things Adam and I had noticed but hadn't realised were symptoms of possible serious problems.
They released us with a promise to get Aaron back in immediately to see the specialist they'd been trying to find earlier. The NHS isn't big on preventative maintenance so the sense of urgency was an instant red flag.
Naturally I couldn't resist having a look on Google once we left. I know, I know searching online usually leads to descriptions of rare diseases featured on web sites you wouldn't trust to diagnose dandruff let alone vision problems but the Type A personality I am needed to get at least a sense of what we might be dealing with.
However, on this occasion the search was useful. I learned that sensitivity to light is caused by pressure in the eyes and this eventually led me to congenital glaucoma. The results were all from sites like www.glaucoma.org and congenital glaucoma was pretty much the only thing coming up that could be the problem. The disease sounded scary, rare (1 in 10,000 babies are affected) and treatable mostly by surgery.
Meanwhile, within 10 minutes of leaving the PRUH (!) I got the call that we needed to come back the next day for an eye clinic with the specialist. Friends and family advised me to stay positive and avoid assuming my Dr. Google diagnosis was accurate.
Dinner at our house that night was subdued but we thought there must surely be some other reason for Aaron's symptoms - the rarity of congenital glaucoma made it seem too implausible. All we could do was wait for the clinic.
Why start this blog?
My husband Adam and I are 37-year old first-time parents to one adorable infant son called Aaron. Despite being born via emergency c-section this past May, Aaron has been reasonably healthy the first five months of his life.
When Aaron was about two months old I noticed he had a squint (lazy eye) in some of his photos and upon closer attention, could see it in person on occasion. Sometimes if something was particularly exciting, both eyes would roll around as if his mind was blown with amazement.
I raised it with the health visitor in July who promised to refer us to an orthoptist. It took three months and multiple chases to finally get the screening appointment scheduled and along the way Adam and I noticed some other things about Aaron's vision that were cast off as arbitrary, things like:
Fast forward to the screening appointment in October, where I walked in with Aaron expecting recommendations for patching, glasses and exercises. Instead I walked out with more questions than answers, a rising suspicion that Aaron's condition was the incredibly rare congenital glaucoma and another appointment to take place the next day.
To answer the question 'why start this blog'...
It's for our friends and family who want to share in the journey as we work to help our baby boy live with congenital glaucoma.
It's for all other parents, who hopefully after reading this will believe even more firmly in their instincts as moms and dads and not hesitate to raise things or push the issues with health professionals, even if they feel silly. I wish now I had pushed even harder to get Aaron's appointment and maybe if I'd mentioned any of the above we'd have been seen in August vs. October.
And it's for other parents of children with congenital glaucoma, I hope they will take comfort that they are not alone in dealing with this horrible but treatable disease. We've struggled to find much online to read or many support groups given how rare congenital glaucoma seems to be.
Our journey has only just begun. I have no idea where it will lead or how much damage has been done but Adam, Aaron and I are taking it one day at a time and keeping the most positive outlook we can until it doesn't make sense to do so.
Thanks for reading.
When Aaron was about two months old I noticed he had a squint (lazy eye) in some of his photos and upon closer attention, could see it in person on occasion. Sometimes if something was particularly exciting, both eyes would roll around as if his mind was blown with amazement.
I raised it with the health visitor in July who promised to refer us to an orthoptist. It took three months and multiple chases to finally get the screening appointment scheduled and along the way Adam and I noticed some other things about Aaron's vision that were cast off as arbitrary, things like:
- Cloudy eye (diagnosed over the phone to the GP as conjunctivitis as Aaron poked himself in the eye)
- Occasional watery, red eyes (they look like allergies, the poor kid gets a rash if he spends too much time outside in a light breeze)
- Eye rubbing/eyes frequently closed even during activities like baths, changing, etc. (we assumed he was tired - most days we're lucky to get him to take three 30 minute naps)
- Dislike of bright lights/sunlight (I myself want sunglasses even if it's cloudy, so...)
Fast forward to the screening appointment in October, where I walked in with Aaron expecting recommendations for patching, glasses and exercises. Instead I walked out with more questions than answers, a rising suspicion that Aaron's condition was the incredibly rare congenital glaucoma and another appointment to take place the next day.
To answer the question 'why start this blog'...
It's for our friends and family who want to share in the journey as we work to help our baby boy live with congenital glaucoma.
It's for all other parents, who hopefully after reading this will believe even more firmly in their instincts as moms and dads and not hesitate to raise things or push the issues with health professionals, even if they feel silly. I wish now I had pushed even harder to get Aaron's appointment and maybe if I'd mentioned any of the above we'd have been seen in August vs. October.
And it's for other parents of children with congenital glaucoma, I hope they will take comfort that they are not alone in dealing with this horrible but treatable disease. We've struggled to find much online to read or many support groups given how rare congenital glaucoma seems to be.
Our journey has only just begun. I have no idea where it will lead or how much damage has been done but Adam, Aaron and I are taking it one day at a time and keeping the most positive outlook we can until it doesn't make sense to do so.
Thanks for reading.
Subscribe to:
Posts (Atom)