This is a quick note to update you on our week. I'll be doing a longer post about it soon as it will be therapeutic for me to write about it but here is a shortish version.
About 13 days ago, our little girl suddenly developed a 'squint' - by that I mean that one of her eyes started turning inwards so that she looked cross eyed. I immediately knew that this was potentially a very serious medical situation and took her to a hospital to be assessed. To cut a long story short, it took six days, two hospital visits, two GP visits and a visit to a paediatric eye specialist before she was properly assessed. The specialist found that her optic nerves at the back of her eyes were 'swollen' indicating that she had increased intercranial pressure. This means that the pressure in her brain was rising for some reason - possibly a brain tumour, haemorrhage, abscess etc. It then became an emergency sitation and we rushed to hospital. After 30 awful hours that included an emergency MRI (for diagnosis) and lumbar puncture under general anaesthetic (to check for infection and relieve some of the pressure on the brain) they found a 2-3 cm blood clot had blocked off one of the veins that drains the cerebral spinal fluid from the brain, causing the CSF to build up in her brain - causing raised intercranial pressure which caused the optic nerves to swell. She was given (and still is on) serious drugs to reduce the brain swelling and stop further clotting and this has worked very well. After 7 days in hospital, we came home last night, still on the drugs which include injections twice daily to reduce the risk of further clotting. She is out of danger and the brain swelling has mostly gone but her optic nerves are still swollen. We went back to hospital today for her to be reviewed and they were very happy with her. She needs another brain scan on Wednesday to see if the clot is gone yet.
The clot was caused by an ordinary middle ear infection which caused inflammation in the vein near the ear which drains fluid from the brain - a very rare complication.
Obviously, it was a very serious condition but as we were facing the very very real possibility of a brain tumour diagnosis, we were absolutely ecstatic that it was 'only' a blood clot. We had an absolutely out of this world medical team taking care of Greta - well, actually - several medical teams. We had a team of eye specialists looking after her eyes, a team of neurologists looking after her brain (they were in ultimate charge), a team of ear, nose and throat doctors making sure the underlying infection in her middle ear/mastoid bone was cleared up and a team of haemotologists supervising the drugs for the blood clot and clotting issues. We actually saw one of the top neurologists in Australia soon after we arrived, who has been working in neurology since the 1950s and retired this week. So we were extremely lucky to have him in charge. He was an expert long before the technology of MRI, CT scans etc and was able to tell us what he thought the most likely diagnosis was based on her symptoms/history before it was confirmed by the MRI. (The longest 30 hours of my life while we waited to rule out brain tumours).
I want to reassure everyone that she is doing really really well and say an enormous thank you to all our wonderful family and friends who have been supporting us with love and meals and visits to hospital and helping take care of my big girl while Gret and I were in hospital.
I am veering from elation at being home to exhaustion, but it is all good. She is safe and sound and in a few more weeks, we can hopefully be finished with the drugs and procedures and back to normal life.
If anyone out there happens to google "sudden onset squint" (as I did) and finds this post, PLEASE if this has happened to your child (or you), get an immediate medical assessment as it is potentially a symptom of a life threatening condition. One of our neuro specialists described it as a "red flag" event.
About 13 days ago, our little girl suddenly developed a 'squint' - by that I mean that one of her eyes started turning inwards so that she looked cross eyed. I immediately knew that this was potentially a very serious medical situation and took her to a hospital to be assessed. To cut a long story short, it took six days, two hospital visits, two GP visits and a visit to a paediatric eye specialist before she was properly assessed. The specialist found that her optic nerves at the back of her eyes were 'swollen' indicating that she had increased intercranial pressure. This means that the pressure in her brain was rising for some reason - possibly a brain tumour, haemorrhage, abscess etc. It then became an emergency sitation and we rushed to hospital. After 30 awful hours that included an emergency MRI (for diagnosis) and lumbar puncture under general anaesthetic (to check for infection and relieve some of the pressure on the brain) they found a 2-3 cm blood clot had blocked off one of the veins that drains the cerebral spinal fluid from the brain, causing the CSF to build up in her brain - causing raised intercranial pressure which caused the optic nerves to swell. She was given (and still is on) serious drugs to reduce the brain swelling and stop further clotting and this has worked very well. After 7 days in hospital, we came home last night, still on the drugs which include injections twice daily to reduce the risk of further clotting. She is out of danger and the brain swelling has mostly gone but her optic nerves are still swollen. We went back to hospital today for her to be reviewed and they were very happy with her. She needs another brain scan on Wednesday to see if the clot is gone yet.
The clot was caused by an ordinary middle ear infection which caused inflammation in the vein near the ear which drains fluid from the brain - a very rare complication.
Obviously, it was a very serious condition but as we were facing the very very real possibility of a brain tumour diagnosis, we were absolutely ecstatic that it was 'only' a blood clot. We had an absolutely out of this world medical team taking care of Greta - well, actually - several medical teams. We had a team of eye specialists looking after her eyes, a team of neurologists looking after her brain (they were in ultimate charge), a team of ear, nose and throat doctors making sure the underlying infection in her middle ear/mastoid bone was cleared up and a team of haemotologists supervising the drugs for the blood clot and clotting issues. We actually saw one of the top neurologists in Australia soon after we arrived, who has been working in neurology since the 1950s and retired this week. So we were extremely lucky to have him in charge. He was an expert long before the technology of MRI, CT scans etc and was able to tell us what he thought the most likely diagnosis was based on her symptoms/history before it was confirmed by the MRI. (The longest 30 hours of my life while we waited to rule out brain tumours).
I want to reassure everyone that she is doing really really well and say an enormous thank you to all our wonderful family and friends who have been supporting us with love and meals and visits to hospital and helping take care of my big girl while Gret and I were in hospital.
I am veering from elation at being home to exhaustion, but it is all good. She is safe and sound and in a few more weeks, we can hopefully be finished with the drugs and procedures and back to normal life.
If anyone out there happens to google "sudden onset squint" (as I did) and finds this post, PLEASE if this has happened to your child (or you), get an immediate medical assessment as it is potentially a symptom of a life threatening condition. One of our neuro specialists described it as a "red flag" event.
Will post more soon including a photo of my girl with the turned eye so you can see exactly what I mean. Her beautiful eyes now look normal again and her vision does not appear to have been damaged. The swelling of her optic nerves is going down and should continue to go down over the next few weeks.
