Tuesday 28 August 2012

MRI Results

Just too cute
Felix finally had his appointment with the Paediatrician today. A couple of months ago I got a call from his Office to say that he needed to get together with us to discuss Felix's MRI scan. I was a little bit worried because we had already talked to him about Felix's MRI (and the fluid on his brain), so I wasn't sure why he needed to see us again. We had already agreed to a follow up MRI scan in 12 months time to check that the fluid hadn't increased in his ventricles, and we were all pretty confident that the levels would stay the same. I rang to make an appointment, but couldn't get in until today so it's been a long wait.

I was relieved to find out that the only reason why the Paediatrician wanted to see us, was because he had received a copy of the MRI pictures and wanted to show us exactly what was going on inside Felix's brain. We had seen so many pictures of the ventricles in Felix's brain when I was pregnant with him because they were measured on the ultrasound every 2 weeks, from 25 weeks onwards. The MRI pictures were even clearer, and were quite amazing to see. The Paediatrician pointed out the enlarged ventricles and also mentioned that there appeared to be other 'spaces' in his brain which appeared to be larger than they should be. These, he said, indicated that Felix's brain possibly didn't develop fully (nothing to do with Down Syndrome). We both agreed that it doesn't seem to have affected Felix's ability to learn and develop. It will be interesting to observe him over the coming years and see if it makes any difference then. Until then, we will stick with our original plan to do a follow up MRI early next year, and if the results are stable, we'll be able to wait another 5 years before repeating the scan again.

Put the camera away Mum
While I was with the Paediatrician I remembered to get a referral for the Opthamologist next month. Felix will have his eyes looked at through some more sophisticated machines, to make sure he doesn't need glasses yet. I also picked up a request for his next lot of blood tests (which he hasn't had for 12 months). Kids with Down Syndrome are regularly checked for any thyroid problems, which are common in people with Down Syndrome. Sometimes medication is required, from a very young age, to keep thyroid function under control. The benefit of being tested regularly means that any issues with the thyroid can be quickly addressed before they become too much of a problem.

The other part of the blood test is to check for leukaemia. Unfortunately children with Down Syndrome, under the age of 5 years old, have a slightly elevated chance of developing leukaemia than other children. Medical opinions vary as to how often they should have their bloods checked for leukaemia. Some Doctors may recommend it every few months and others, like our Paediatrician, only check it once a year. The wait for the result of this particular test is always nerve racking, even if your child appears to be healthy. The thought that they have been tested for something so horrible is a daunting one. I couldn't bring myself to take Felix to have his bloods done today, so I'll have to steel myself and take him tomorrow.

Doing some walking and showing off
his perfectly straight crease on his
left hand ( a unique trait of Down Syndrome
Several times today I looked over to see Felix toddling across the floor, taking more and more steps on his own, which makes me so proud. The Paediatrician was very impressed that he is walking and also with the amount of signing he can do. He has no concerns at all with Felix's development as far as gross and fine motor skills. Felix has put on some weight, although he is still very tiny (almost at the bottom of the Down Syndrome weight chart, with his length at the very bottom). I think he's only going to be a little shorty when he's grown up but, as we all know, good things come in small packages!




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