Monday, September 9, 2013

Asher's epilepsy update

Just after 5:30 this morning Asher had another seizure. I had fed her at 4am and she had gone back to sleep as she normally does. I got up just after 4:30 and went to sit by the fire with Brendon to read for a while. Then I headed back to my room to get a bit of reading done on the computer. While I was sitting there I heard Asher and wondered if she needed to go to the potty (as she will often stir if she needs to go). I was listening and trying to decide if I should take her or if she was going to get back to sleep on her own and eventually I went over to her. As I got to her I realized she was having a seizure. Thankfully Brendon did not have an early 5am start and he was still here. I quickly called him and he brought the camera so we could get some video footage of it. (These are very helpful for watching again later and noticing little details that could help in treating it). I was sitting with her watching the time and just reassuring her that we were with her and that everything was ok.
Eventually I got the medication ready and gave that to her at around 5 minutes and Brendon called the ambulance (this was the plan agreed upon with the doctors at our last hospital visit). By 10 minutes it had not stopped so I gave her another dose. By this stage she was drooling again - so I am not sure how much of the meds I actually got to stay in her mouth. About 2 minutes later the seizure stopped. So at least 12 minutes this time (I don't know how long it was going before I actually got to her).
Again the Lord gave much peace and calm through the seizure for both Brendon and I and we just sat with her, talking to her and gentle touching her head to reassure her that we were there. The first response was again with us just as it stopped. This time we did not need to give her oxygen but she was again in that typical postictal state (when you still don't feel yourself after a seizure) while I got bags ready for our trip to town (this time I remember to take lots of toys for her). I was not sure if it was needed but the ambulance staff said that it was standard procedure for her to get in to the hospital to see her doctors. Especially as this was the agreed upon course of action at our last visit. So off we went.
Asher was not very happy for the first half of the trip and was crying inconsolably. I realized once she was asleep that she could have been having pain somewhere and that was most likely the cause of the crying. Often people can experience headaches or stomach ache after a seizure but wee Asher can't tell me what is wrong. We also don't know what reaction her body had to the medication and so that was another variable in today's episode. It was great to have her finally sleeping peacefully and when we got to the hospital she was again happy and friendly and bringing smiles to many faces.
The doctor in the Children's Acute Assessment ward was the same one we saw after Asher's first "episode" at 4 months. So it was nice that he had already met Asher and knew a bit about us. Other than checking her vitals a couple of times through the day there was no more testing that needed to be done. I think this was just the quickest way for us to see the doctors and to discuss our "plan of action".
As I had expected - their suggestion was to start Asher on AED (Anti-Epilecptic drugs). I had good discussions with the doctor about the benefits over the strong side effects. Thankfully he had to take a call half way through our chat and so I could call Brendon. We agreed that we did not want to start the AEDs at this stage and I was very thankful to the doctor for his understanding of our feelings. On the discharge notes it says "Mum not keen to start this yet, as feels she can mange seizures at this current frequency. Advised that frequency may increase and does have potential to delay developmental milestones vs. drowsiness caused by medication."
Before making our decision I had asked the doctor about what negatives these seizures had on Asher. He confirmed my thought that there was no real damage being done - other than possible developmental delays if they become very frequent. As the very common side effect of AEDs is drowsiness he could see our thoughts that at this stage the side effects out way the benefits.
They have given us a script for the AED and we can start that at any time we feel the seizures are getting too many. If we do start the AEDs we have to make a follow up appointment a week after starting though as they need to check very carefully how the child is responding to them. This just gives you a bit of a picture as to how strong the AEDs are.
I think what helped the doctor feel ok about our decision is that I think he feels very confident that Asher is getting very good care. We are very aware of her in so many ways and I think he knows we will keep a good record of any seizure activity (not only the grand mal seizures but also the smaller vacant episodes that she has - she had one last Sunday - 1 Sep). He also told me how impressed he was with how calm I was through her seizure and told me a did a great job of keeping track of the time, giving the medication and even getting video footage so they could see it too. I think it can be so frightening for some people that they just panic and get nothing done. And let me make it clear that it is only by God's grace that I am not that panicking mother. Again I have seen how God has been my solid Rock. He is so faithful and I really can trust Him with everything.
Two weeks ago I had taken Asher to our homoeopath and she had her first dose last Monday (the medication only arrived on the Monday - after her Sunday episode). So although it is disappointing that the first remedy was not spot on - it can often take a bit of time to find the perfect fit. I had been in communication with Christine through the morning telling her about this last seizure and after consulting with a colleague she said she had found a remedy that she felt would be a very good one for Asher.
Christine will actually be leaving for an overseas holiday on Thursday - so although having a 2nd grand mal just 3 weeks later was not ideal - it was a blessing that it happened now and not in 2 or 3 weeks time when Christine is away. I am also so very thankful that the doctors are happy with us giving it more time (we will have a follow up appointment with the doctors at the hospital within 6 weeks to 3 months time). We are praying that God has really guided Christine so that she has been able to find a remedy that is exactly what Asher's body needs to help with her epilepsy. We know that every detail of this all is in God's hands and we pray that He would give us the wisdom to make the right decision for Asher and to do the very best we can for her.
I see many answered prayers through today and I thank the Lord for that.

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