Thursday, December 1, 2016

New meds and a new year plan

On Tuesday 29 November, Asher had a follow up appointment with her neurologist. The above is the page that I had printed out to give them for her records. You can see from the graph on the bottom, in the middle, that this year she has now had more seizures than the previous two years. We definitely had a spike in seizures from weaning her off Epilim. She has averaged 7 or 8 seizures for a long time now, and that was drastically up to 17 and 16 for October and November.
The graph on the bottom left shows the total minutes of seizures though, and even with the increase, this is still lower than the previous years. At the end of November she had only had 200 minutes of seizure activity this year, compared to 255 and 279 at the end of November in 2014 and 2015. So we are extremely thankful for this.
The very telling graph though is on the bottom right - showing her "words". During the 6 months between her two previous IPs (Individual Plan) she had added 28 words. During September and October, while weaning off Epilim, she added another 32 words!!! I knew the words were coming so much more easily and so re-did that IP questionnaire. It confirmed what I was seeing. And it was wonderful to watch. In November the just kept adding and so I totalled her words up again, she had added another 20 in the month.
For the first time in her life, she is doing what most children do when they learn to talk - copy. She is now able to just copy words. So the words that are on the list are ONLY the words that she is using independently. There are LOADS more words that she is trying as she copies us. And the quality of her words have improved wonderfully too. Instead of wa-wa for Rachel, it's now Ra-chill. Hannah and Hezekiah used to be H (both of them) and now we have Ha-na and Ki-ah. It's wonderful.
So although she has had more seizures because of stopping Epilim, we are very confident that it was most definitely the right decision. Her EIE said it well when she said "it's like the fog has lifted". She works with Asher at preschool and has also enjoyed watching the wonderful improvement over the last couple of months.

At our last doctor's appointment the neurologist suggested starting another drug. So we discussed this again on Tuesday. We have decided to give the "next" one a try. Asher is still on Clobazam, the other daily AED that she has been on for a long time. Our prayer is that if we can find another medication that will work well, we could perhaps get her off having Clobazam on a daily basis. That would allow us to have Clobazam as a "back up" for if she has a cluster of seizures. This was how we originally used the Clobazam, but eventually needed to give it on a regular basis.
Another thing we discussed again was the Ketogenic diet. You can read more about it here. Many people have written to us asking if we know about it over the years, but we have never felt ready to give it a try. Something else that has changed is that there is now funding for children to be on the diet. That means that all the dietitian appointments and input will be free. As Asher's epilepsy is so rare and hard to control, she "qualifies" to get funding for this. So in the new year we will meet with the dietitian to discuss the diet fully. We can then be really honest about weather we think it will work or not. At this point I do feel we should at least give it a try.
One other thing that has changed since taking Asher off the Epilim, is that her appetite is much better. So at least the diet is something we can realistically look at now. When we last saw the doctor and discussed the diet, his main concern was with Asher's picky eating and low appetite. She is far more daring with new foods now too - so those are all great changes that make this possible to look into.

On the 1st of December Asher started her new AED. She is on a small dose for the first 2 weeks and then moves up to a more "normal" dose for her size. This is where I have a prayer request.
Firstly - pray with us that the medication would work to control her seizures, without side effects.
If however the side effects are going to be too severe and effect her too much, please pray with me that we would be able to see this very clearly. One of the major side effects is "Emotional liability - in young children, this may manifest with behavioural disturbance such as increase in aggression. At increasing ages, depression and mood disturbance can be seen."
As you know - we just want the best for Asher. We are constantly asking the Lord to guide us through each decision, and we constantly pray for her safety. We so appreciate your prayers for her too.

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