Wednesday, September 3, 2014

Asher update 21 Aug to 3 Sep

Asher's last seizure (that I wrote about) was on Sat evening 9 Aug. At that point we decided we would start her on Pyridoxine (Vitamin B6) to see if that would help. We knew it would take a few weeks (even up to 6 weeks) to really help - so we felt it was definitely time to get started on that.

She had almost 2 weeks of things being nice and quiet. On Thursday evening (21st Aug) she ended up getting some wild bouncing in and so we were not too surprised when on Friday morning (22nd Aug) at 7am she had a seizure. It was a 3 minute tonic. She had been happily playing when she shouted and went stiff. Thankfully she did get a few breaths in through the seizure.

On Sunday morning (24th Aug) on our way to church she had her first seizure in the car. It was a 3 min vacant. She had been drinking some water and Ruth said "Asher, you are wetting me" and then we saw that she was having the seizure and so had allowed the water bottle to fall over to the side (and drip on Ruth). She again got a few breaths in, but did go a bit blue. We noted that she had bumped her head the day before when she swung herself back as I was walking in the passage - and knocked her head on the wall.

On Monday 25th at 10:20am she had a 3 minute vacant / mild tonic (so not totally stiff like her normal tonic but still more stiff than she normally is with a vacant). Her breathing was not good and she went rather blue. She then slept till 12, had lunch and then was very sleepy. At 1:30 (while lying with me falling asleep) she vomited and then was wide awake.

Just before 5pm she had a short (almost 2 min) vacant / mild tonic and again breathing was not good and she went blue. After a sleep she had a very big dirty nappy and so our wonder is if today's seizures were triggered by a viral infection.

At 7:30pm, just as I was getting her ready for bed, she had a short (almost 2 min) tonic clonic (Grand Mal). I then also noticed that her temperature was up to 37.5. So something was definately brewing and most likely the cause of the three seizures today.

She was fine through Tuesday and Wednesday but on Wednesday evening (27th Aug) at 6:30pm she had a 4 minute vacant seizure. Her high temperature also returned and she had a high temperature through the night.

Again she was fine through Thursday but at 6pm on Thursday (28th Aug) she had a short (almost 2 minute) vacant seizure. She was not breathing and we heard the now familiar clicking sound in her mouth when this happens. She lay still for a little and then tried to move around. Finally she took a big breath as it ended and after a bit of restless time she fell asleep.

So although we had only started the Vit B less than 3 weeks before, we knew we could not wait any longer and would need to increase her Epilum from 4 ml BD to 5 ml BD. This was the plan we had discussed with the doctor when we saw him in July, so knew he was behind us in all the medication decisions we have made over the last month. It was also good to know that this was the maximum he would take her Epilum up to.

She was fine through Friday and Saturday and then Sunday 31 August ended up being quite a day.

It started at 5:40am with me waking from hearing her making a different noise. I quickly got to her and saw she was having a clonic tonic seizure. It went for a further 8 minutes but was rather frightening as it stopped and then started again twice. Each time we thought it had stopped and then a few seconds later it started up again. So after this happened twice there was no hesitation in giving her a dose of Midazolam. After it stopped she then started crying and was still very stiff. We were not even sure if this was another seizure and so phoned the ambulance. Although she stayed rather stiff for a while - far more than with previous seizures - she did eventually get into a nice relaxed sleep and so we called and cancelled the ambulance.

After church (at 11:30am) Asher was having fun playing with our Pastor's beard when he turned to me because she had jerked and I could see she had started a milk tonic seizure. She was not breathing well but thankfully it only lasted for about 2 minutes. I then gave her a dose of Clobazam, our 2nd "emergency" medication when she has had more than 1 seizure in 24 hours.

Having a sleep with Dad after her 4pm seizure.
At 3:45 that afternoon she had around 1 minute vacant seizure from sleep. She had been having her afternoon nap on me and suddenly lifted her head and opened her eyes and then I noticed the compromised breathing. We were thankful it did not last long and also realized that the Clobazam may not be at full "cover" yet - so knew the next few hours would give a better indication of whether the Clobazam was enough to stop a cluster or not. During the afternoon her temperature also started to go up and got to 38 already. So we knew something else was brewing too.

When at 6pm she had a 2 minute Tonic seizure, Brendon and I immediately knew Asher and I would be heading into hospital.

Thankfully Asher dose have a "Blue card" which allows her to go straight to CAA (Child Acute Assessment) rather than having to be seen by a doctor in the Emergency Department (ED) and then being transferred. They were incredibly busy in CAA this evening though, so we had a bit of a wait in ED (thankfully not needing to give all the details and have her checked ect while we waited).

While we were there though, at 8:20pm, she had a 1 1/2 minute vacant seizure (easy to be very accurate at seeing the time when in hospital as there are so many clocks about with seconds shown). At this point a doctor did come in to check if help was needed. After a quick chat with her she was happy for me to give Asher another dose of Clobazam. When this was first prescribed to her for giving extra "cover" while her long term AED had time to get working, she was put on this twice daily - so I knew this would be her neurologists advice. The doc was happy with that and so I gave her that extra dose.

We then headed over to CAA and had a good catch up with Dr Sam (who we have seen many times in the past). He contacted Cameron (her neurologist) and got a "plan of action" for the night. We then headed down to the children's ward and I was very thankful to have a nice spacious room. The sleeper couch I got was also a lot better than another I had experienced. So although not a bed I was still very thankful for our "accommodation". It was wide enough for me to nurse Asher lying next to me - which I was doing a lot more frequently with her high temp.

At midnight Asher's temperature got up to 39.5. I had felt she had gotten hotter, so I had called the nurse and asked that she come and take a reading. Normally they only check every 4 hours, but I wanted to check as I knew it was hotter than before.

So on Monday morning, 1 September, 12:15am, she had a 2 minute vacant seizure. Sam was called down and he explained that they would give her a Levetiracetam drip. This is a different one to the one she has had twice before. Sam explained that Cameron also wanted to see how she reacted to it as it may be an option for another long term AED (as there is an oral dose also available).

First we had to get a line in. Sam did a great job and took some blood for tests as soon as the line was in. Asher was more upset about being held than the "sharp bit" (as Sam put it). He always speaks so gently and kindly to the children and he did the same now - even though Asher was quite sleepy.

The drip went well and Asher slept through it all. I eventually only got to sleep around 2am but thankfully did have really good rest.

I was also really thankful to see Asher just looking so much better today. Cameron came to see her just after 9. One of the first things he said to me was that Asher has done so very well. He said that he had honestly expected her to be on a lot more medication for many months already.

While he was with us, 9:30am, she had a 3 1/4 minute tonic clonic. It was good that Cameron was with us as I could point out very common things for her tonic clonic ones. At about 3 minutes he said he was going to get some medication. I asked if he wanted Midazolam as I had that in her bag right there. He said not to worry and headed out. It stopped before he got back though.

It was really good to be able to discuss things with him. The Lord also helped me mentally to be prepared for her getting more medication. I had thought it would be about perhaps changing her AED, but as she is now on her "highest dose" of Epilum, it is more a matter of adding another. So for now she is on two doses of Clobazam a day. It's a higher dose than what we used on Sunday but he has said that if all is going well in 2 weeks, we can look at dropping this down to the "old" dose and just make it a permanent medication. This higher dose just gives her Epilum time to really kick in. We spoke about possible future changes too.

He suggested we get Asher onto an antibiotic for her inflamed tonsils. We didn't know for sure if it was a bacterial infection, but with her reaction to the high temperature we felt it was safer in this case to rather start them. Again I was thankful for his understanding of our feeling about antibiotics and they way in which he explained his feelings on why it was suggested (rather than just saying "she must go on antibiotics").

I must also make the note here on how thankful I was for the wonderful food that we got. I had mentioned on Sunday evening that Asher was gluten free and for the first time she had a breakfast specifically for her. Normally that first meal after arriving can be a matter of "is there any extra". So I was so pleased. Asher ate what she could and then there was still enough for me to have enough food through our stay (and I am also gluten free - so it was a real blessing as I could not just fill up on the parents bread that they always have available).

The day went well despite her temperature still being high. Through Monday night it got even higher and I got a bit of a fright when we saw that it was up to 40. The Lord graciously allowed me to have a lovely Christian nurse who had wonderful suggestions on how we could help just bring it down a little. She got us a fan and gave me the idea of wetting Asher's hair (as she didn't want a damp cloth on her - but tolerated having a quick wipe to wet her down a bit).

There has been a change in the medical field now and they don't give paracetamol for high temperatures any more. So it goes with our thinking of leaving the temperature to do the work that it is there for (to fight the infection). We don't normally allow a temp to get up to 40 though, so with not having my belladonna on hand (which I would use at home first) I asked for a dose of paracetamol for her. This helped bring the temperature to a safer level and also helped Asher have a good night's rest.

The temp was lower on Tuesday morning when Cameron came to see her. I told him she had had paracetamol, so it was possible it would go up again (which it did). He did however say that he would prefer me to stay in hospital another 24 hours though - just to make sure things were fine. We don't live 5 minutes away - so that does need to be taken into account. I felt totally comfortable with that and in the afternoon I was very thankful for that decision.

Around 5pm Asher was sitting on my lap and vomited. She had not had lunch but all that she had eaten from breakfast came up. The nurses quickly got a bath run for her and she enjoyed that. Not long after that her temperature came down and stayed down. I was thankful we had not been on the way home when it all happened and I am also thankful none of it got onto my clothes (as I had only packed just enough).

I was also glad we had spent the extra night in the hospital as Asher had a really hard night.

We had a good chat with Cameron on Wednesday morning. He actually asked me how I felt and I said I felt fine heading home. It was nice to know that if I had any concerns I could have stayed even longer. I was sure the temperature was going to stay down now though and also knew that Asher would just cope better being home. Now that the temperature was normal she was not sleeping as much - so she was starting to get a bit bored. We did have a number of her favourite toys and DVDs from home - but there is "no place like home" after all.

For those of you who are wondering - Cameron is fully aware of our Germany travel plans and we will most likely see him again before we are due to leave. We have already been discussing different scenarios and I know he is confident we will not put Asher at risk.

I had expected Brendon to head into town to fetch us after work but he managed to leave by lunch time and so we were home well before dinner which was a great help.

Again there were so many things over the last few days that I was so very grateful for. It would take me a few paragraphs to list them all. I thank God for all His wonderful goodness, care and provision.

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