Friday, April 1, 2011

more health worries

Ti and I spent a week in the childrens' hospital, our GP sent us straight to A&E when I brought him in because of strange flickering eye movements. A&E was hell, it really is a flawed system, where a baby with suspected seizures is sent to A&E instead of straight to the neurology department, to spend 6 hours on a ward with puking and coughing children. A&E was so full that some parents had to stand, balancing their children on their hip while a doctor would examine them! In the evening we were admitted to a ward, where we had a cubicle, as Ti hasn't had his immunisations yet. Having a room was quite lucky, as the ward turned out to have two children with Rota virus (stomach bug that can lead to serious dehydration in babies) and was closed to new admissions the next day, and worse still, was turned into 'the Rota ward' another few days later, having all the other sick babies from throughout the hospital transferred there.

A week of tests revealed that the doctors don't have a clue what's causing his eye movements, but thankfully some of the really scary possibilities like tumors and epilepsy, have been ruled out. On the downside, another eye exam during the investigations showed changes on his eyes, so he has been diagnosed with the same eye disease Emm has. It's been called quite early though, and he was lasered one week later, this monday, which hopefully will improve his chances of keeping his sight. There hasn't been any damage yet, but exudation, which means the disease is active, in one eye. We're lucky it was caught now, i don't know how much damage could have been done to his eye(s) by mid May, which was when they would have otherwise looked at him again.

After the laser operation (Emm had another EUA and FA on the same day) we talked to the neurologist again, and he still couldn't tell us anything about Ti's condition, only that the symptoms don't match anything, really, and they don't know what to look for next. They did mention that it's similar to Opsoclonus, which is often associated with Neuroblastoma, but his tests for that came back negative. Although as different tests were ordered by different doctors, I'm not sure any more whether they said the Neuroblastoma test came back negative, or the tests ordered by the Neurologist came back negative.

We're now to get another appointment for in two months time, unless there is any change to the worse in him. They think he might just outgrow it. He seems to not be bothered by the eye flickering, so I suppose we'll have to wait and see.

We got out of hospital just in time for his christening, we were home a mere 3 hours before the guests from Germany arrived on the Friday evening, but P had done great work during the week and with a bit of help on Saturday morning we had a great feast prepared for the guests at lunchtime. Here a little picture of the buffet:

my mum baked bread and brought it over, as well as some cured westphalian ham, there's a greek and a green salad the godmother brought, eggs from P's mum's hens, pasta salads and a fritatta from P, and lots more. We also had delicious cakes my neighbour made but I didn't get to take a picture of those. 

The tulips in the top right corner of the table didn't quite open up on the day, but half a week later they looked like this! 


  1. Sorry to hear about Ti's eyes. It's good they have caught it early. I hope you get answers soon. My daughter has a flicker in her eyes too (I think I've mentioned it before to you) It's a motor nystagmus. I'm sure the experts would recognise it though, if that's what Ti had... but maybe?

    The buffet looks yummy! I hope you had a good day :)

  2. Oh, I am not glad to hear this story. I hate that you had to sit through hours of A&E. And lazers. And now all the uncertainty. I hope everything turns out to be ok. xx

  3. You are going through so much with your children! I hope this all works out okay. I'm impressed that after all that you found the strength to organise a christening. The buffet looks lovely.

  4. (Sorry for getting here so late.)

  5. The christening was booked, if we had cancelled we would have had to wait until July! Plus, my family were on their way, so we just decided to stick with the date. Couldn't have done it without P. Or my mum and sis and BIL, who also helped with the food and candle and dress and and and... :-)