The EEG

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.

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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.

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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.

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*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!!!!

Hearing Test, April 2013

Why do I always get nervous attending the hospital for Asa’s hearing tests?!!

The old familiar ‘sicky stomach syndrome’ reared its head again as I drove to UHW, even though Jon and I suspected Asa’s hearing had improved. Walking in to the clinic, I was greeted by one of the audiologists who remembered Asa by name, immediately putting me at ease. Three minutes later we were called through to the testing room.

This time, the audiologists wanted to test Asa’s hearing without the use of the softband bone conductor, so they could build up a picture of the exact nature of his hearing loss. Today, he responded to sounds at 45 dB (decibels), which was the same as the last time in January. The difference between the two tests was that in January, Asa had worn his softband and today he didn’t. This shows that there is some improvement, however small, in Asa’s hearing. Normal speech is around 55 dB, although some speech sounds are quieter, such as ‘s’, ‘sh’, ‘th’, ‘f’ and higher in frequency. In other words, at the present time, Asa is responding to most sound levels and mid-range frequencies. Jon and I ‘test’ him at home regularly – one of us stands behind him, out of sight, and whisper ‘s’ or ‘sh’ and watch Asa’s reactions! He’ll be getting fed up of us sometimes. In fact, sometimes he doesn’t even respond to loud calls of ‘ASA’ – we think he’s protesting our amateur testing! :-)

The tymp test also showed his left ear is currently free of congestion (glue ear), but the right ear still remains congested although there may have been a tiny improvement. Glue ear can fluctuate though, particularly in Winter months. However, for now, we are praising God for these small improvements.

Asa’s next hearing test is the morning of July 16th.

Prayer points:

1. Praise God for the improvement in Asa’s hearing!

2. Pray that Asa’s hearing will continue to improve, that the glue ear completely resolves.

3. Pray that Asa’s speech will not be negatively impacted by his hearing loss.
(Other factors may affect speech too, so please join us in praying for Asa’s speech in general, that he would have good muscle tone to form the correct shapes and would be able to effectively communicate with everyone and be understood).

4. Pray that Jon and I would learn Makaton effectively and put it in to practice – we’re on a course in May – I’m excited!

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Thank you so much for your continued prayers for our little family :-)

Hearing Review – MAP

This morning we had Asa’s audiology Multi-Agency Planning (MAP) meeting at UHW. After a stressful time stuck in traffic and trying to park (one of the car parks was closed and it was absolute chaos – I was in tears!), I took Asa in to the hospital while Jon tried to park. I didn’t think he would be able to join me, but two minutes before we were called in, he arrived – phew!

I was a little nervous, as you might expect from me(!). This was our first MAP and it was all so new to us. Having Jon there with Asa and I was such a blessing. He is such a strength to me, a calming influence – my pebble. (I once called him my rock, and he replied that he didn’t think that was the case, and that he was more like a pebble than a rock, so it has become our little joke!).

We met with the hearing doctor, speech therapist, teacher for the hearing impaired and two audiologists. Most of the people we had already met and they were so friendly and welcoming. We discussed Asa’s hearing, whether he is wearing the softband regularly, what sounds he was making, the use of Makaton and any concerns or questions. Also Cath, the teacher, gave her report. At the moment, Asa’s favourite (read: only!) sounds (other than crying, giggling and wind!) are the ‘raspberry’ and a long vowel, ‘ahhh’. Everyone seemed pleased that Asa was making small progress with his sounds and Lowri, the speech therapist, even thought she heard a ‘b’ sound from Asa that we’d never picked up before. Subtle sounds aren’t easy for us amateurs to pick up on!

We asked Dr Roberts, the hearing doctor, whether Asa might now be suitable for conventional behind the ear hearing aids. Upon examination we were informed that Asa’s ears are still too small and so it’s not feasible. I must admit I was rather disappointed. The softband does help Asa’s hearing, but it’s hard work – it gives quite a lot of feedback when knocked or rubbed, especially if Asa is on the floor or in his highchair. I have to adjust it regularly as sometimes Asa pulls it, or it slips out of position. He also, somehow, manages to turn it off on occasions! But for now, it is the softband or nothing, and as we want to help Asa as much as we can, we’ll continue with it until a time when Asa’s ears are big enough for the alternatives.

The doctor suggested we do an impromptu hearing test because Asa was sat up with minimal support. Off we trotted to the testing room. I’m glad I didn’t know that this test was on the cards as I would probably have been very nervous and I’d have worried about it the night before! Asa sat on my knee and the audiologists looked for a response from Asa to show that he had heard a variety of sounds. When he heard a sound, he was quite consistent in his response – he stilled, eyes widened and if he liked the sound he would smile and move his feet. He seems to prefer high pitch noises such as ‘sh’ and ‘s’ and he smiled consistently upon hearing these type of noises.

The second test the audiologists did was a tympanometry – a test to see how freely the ear drum vibrates to conduct sound to the inner ear. Asa had one in September which showed ‘glue ear’ in both ears, resulting in a moderate hearing loss. Today’s test showed one ear ‘glue ear’ as expected, whilst the other ear showed some ear drum movement which implies there is less ‘glue ear’ than a few months ago. We know that ‘glue ear’ fluctuates (i.e. can get worse and improve throughout the year), but we also know we have a healing God! We’re praying the ‘glue ear’ gets less and less over the coming months and will remain that way!

We went back to the meeting room to discuss the results. Today Asa heard sounds at 45 decibels, wearing the softband. We were thrilled with this! ‘Normal’ speech level is around 50 to 55 decibels, so this test shows that Asa is probably hearing a very good range of different sounds needed for speech. It is interesting that Asa responded so well to the higher pitched ‘soft’ sounds such as ‘sh’ because previously the audiologists thought that this was the pitch of hearing he most struggled with. We are praising God for such a good hearing test today.

PRAYER POINTS:
If you are a Christian reading this blog and pray to God, then please join us in praying for Asa’s hearing, that the ‘glue ear’ would decrease and that his hearing would improve in order to develop good speech.

Some photos of Asa enjoying his tea later on that day…

P1090823 P1090824I think Asa is quite proud of the mess… He certainly looks very contented!!!

 

Orthoptics

10.30am today, Asa had his second orthoptic appointment at UHW. I wasn’t so nervous this time. Probably because I assumed the eye tests would not be as invasive as before… I was wrong! The same pattern of three lots of eye drops ten minutes apart, followed by a call in to the doctor’s office. There were two trainee doctors in with the senior doctor today. He explained what he was going to do – check the eye condition, followed by a developmental eye test. Just like before, Asa didn’t stay still or keep his eyes open, so he needed to have the anaesthetic eye drops before the nurse held him down so the doctor could clamp his little eyes open, one at a time…

Asa howled, much like he did before. Even though I knew what to expect, I still got so upset – and again, mummy ended up in tears! The poor trainee doctors didn’t know where to look as I sniffled and rummaged for a tissue in my bag. They were male and probably not used to crying women! I hated being there on my own. I know, I need to ‘man up’ as Sian Hampson would say! I think though that any mother hearing her baby scream while being held down and seeing metal clamps in their baby’s eyes would probably get upset too… It really isn’t a pleasant experience for me, let alone Asa…

Next, the doctor told me he was going to check Asa’s eyes to see if he would need glasses, even at this early stage. Oh wow, I hadn’t known this was possible at such a young age, and ‘sicky stomach syndrome’, as I call it, reared its ugly head. Asa sat in my arms as the doctor dimmed the lights and shone various lights in to Asa’s eyes to track his eye movements. I prayed all through this stage, silently of course. When the doctor was finished he told me that at the moment Asa’s eyes are the same as any other typical baby and his eyesight is ‘normal’. Asa will need regular eye exams as about half of all people with Down’s syndrome will have vision problems. Our next appointment is in August, so for now we’re thankful that Asa has healthy eyes, that he doesn’t need glasses and that we have a few months to breathe before his next check up comes around.

Please join us in praying that Asa’s eyes remain healthy and that he won’t need glasses! (Not that there’s anything wrong with glasses, I wear glasses! But I’m not sure about glasses on a baby or toddler – I can imagine they would get pulled off a lot and easily damaged!!!).

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Mummy&Asa 22 weeks old
Much needed cuddles with mummy… Oh, how we love you and your sister.
You are both amazing! -x-