Where do I start with this blog post?! The past few days have been incredibly stressful, worrying and full of prayer. Yesterday, Asa was in hospital for the day, in the Children’s Ocean ward. But let me start at the beginning.
A few months ago I discovered an amazing website, www.noahsdad.com. It’s a blog written by the parents, primary the dad, of a little boy called Noah who was born Down’s syndrome. (In America, the terminology is Down syndrome). Noah’s dad writes the majority of the blog posts, and his mum, who is a paediatrician, writes the medical posts. I read lots of this very informative and honest blog when Asa was very young. One stuck out in my mind. It was about Infantile Spasms, a form of baby epilepsy, which, if left untreated, can cause cerebral palsy / brain damage and regression in development. It is much more common in children with Down’s syndrome so it is something to be aware of. I filed it away in my brain with most of the other information I processed.
A few weeks ago, Asa started doing some odd little movements. I can’t really describe it effectively, but his eyes would widen, he would shudder all over and his mouth opened in a strange and unusual way. Sometimes his arms would come out at 90 degrees to his body. At first, these ‘movements’ were 1-2 seconds long. Blink and you’d miss them. I didn’t tell anyone about them at first, hoping it was just my eyes. I think I was avoiding the issue. I was scared. One day I mentioned it to Jon, who had also been noticing them. After a couple of weeks, they seemed to be lasting longer and were happening more frequently. This past weekend, these ‘episodes’ were occurring as much as ten times a day, each lasting for up to five seconds. All of a sudden, I was frightened. Friends were around for tea on Saturday and one of their children asked me, “What’s Asa doing? Why is he shaking like that?” I was terrified Asa might have Infantile Spasms.
On Monday, I called Dr Kontos, Asa’s paediatric consultant in Llandough. She was busy so I left a message with the receptionist. About ten minutes later, Dr Kontos called me back and told me she would like Asa to be seen at the Children’s unit of UHW as soon as possible. She had already contacted a doctor in UHW and both agreed Asa needed to have an EEG to find out what was going on – did Asa have Infantile Spasms? I was told I would receive a phone call. It was all a bit surreal.
At 8.30am yesterday, I had a phone call asking me to take Asa to UHW as soon as possible and they were booking him in for an EEG. I packed a little bag of food and clothes for Asa, and snacks for me, and headed off. We arrived at the Ocean ward of the Children’s unit and Asa was admitted as an inpatient. I later found out this was because he would receive an EEG quicker than as an outpatient, and then, depending on the EEG results, if medication was needed then Asa would stay in overnight.
Asa’s EEG wasn’t until later on in the afternoon, so I was feeling rather nervous and sick the whole day. The mum of a small baby girl opposite us was very friendly, but I felt myself getting teary talking about Asa. I gave Asa his lunch, which he refused. He even cried on his yogurt which is very unlike our sweet-toothed (or sweet-gummed?!) boy!* I just had time to wolf down my lunch before we were called for the EEG.
The EEG itself wasn’t as scary as I’d imagined. The lady conducting the test was very nice, but factual. I can’t remember her name or her job title. I’m normally not too bad at remembering these details, but I think I was feeling the strain! It turned out she was a Christian too. Isn’t it wonderful that when we’re in stressful or difficult situations, God often reminds us that He is there with us? She pasted little wires to Asa’s head, whilst explaining the procedure. (For some info on EEGs, click here).
Asa would need to asleep for half of the test and awake for half, as the electrical signals in the brain are different when we’re sleeping. The wires were linked to a computer which recording the brain’s activity as waves, with peaks and troughs. When Asa was awake, he had bright lights flashed very close to his face for set periods, as well as letting him play. A camera was recording the whole time to capture any ‘episodes’. About 35 minutes later, we were done. It felt like forever, especially as my arm and shoulder felt paralysed from holding Asa still! The neurologist would look at the results and decipher what the various waves meant. We were taken back to Ocean ward to find Jon waiting next to Asa’s empty cot. It was amazing to have him there. I will tell Asa one day of how his daddy was there for him, awaiting his return.
Finally, the results were back, albeit very late in the afternoon and we thought we’d been forgotten about. The hospital doctor we saw on admission came to tell us the good news that Asa’s EEG showed no signs of infantile spasms and that as he wouldn’t need medication, we were able to go home straight away! She said that although Asa had no EEG evidence of IS, she couldn’t rule out other abnormalities – if we notice anything we are unsure about regarding Asa’s behaviour, that we are to see Dr Kontos.
So, for now, we are relived to be home with Asa having had the all-clear for IS, and we are thanking God for this good news.
*The reason Asa refused lunch and desert was because later that day, as I was giving him his milk and snack before leaving hospital, he was very sick. Twice. One vomit completely covered me and I had no spare clothes. How miserable! And then the poor little lad was sick a further three times in the car on the way home. D&V bugs really are not fun!!!!