Thursday, September 4, 2014

I feel like a pharmacist

Today I felt like a pharmacist. Over the last year we have tried to keep Asher on as little medication as possible and this week was again a time of big change. Perhaps more in my mind than physically - but it has been a big adjustment, never the less.

Perhaps some of you have picked it up by now (or know we well enough to know) that I often need to talk about what is going on in order for me to process it all properly. So with Asher's medication taking up quite a bit of time each day - I think it's good for me to just put it down on paper (as it were) and have this record of what each day is like at this point. And some of you may be interested in what is involved.

For the next few days she will be finishing off her anti-biotic course for the tonsillitis she had at the beginning of the week. So I won't include those 3 doses every day as that won't continue.

After breakfast (as she needs something in her stomach to lesson the side effects):
5ml Epilim.
This is the long term AED that she has been on since February. We increased this from 4ml to 5ml last Friday (29 Aug). It does need at least a week to be fully effective at the new dose.
5mg Clobazam.
This is half a tablet that needs to be dissolved in water (I have a tablet cutter). One of the nurses gave me a nice trick: I put the piece of tablet into the syringe and then draw up some water. Leave for a few minutes to dissolve and then give (this saves crushing the tablet which I have always done before).
This is the AED that we have had as a 2nd "emergency backup" to stop a cluster. We would normally give 1/4 tablet twice a day. We have this higher dose now for 10 to 14 days to make sure she has good "cover" until the new Epilim dose is working properly. The doc has said that we can then make the decision of dropping this down to 1/4 tab twice daily as an extra long term medication for her.
If the 1/4 tab is not enough then we will have to look at adding a different long term AED so that we can have the higher Clobazam dose as our "emergency" medication.
We do still have Midazolan (5mg) as our 1st "emergency" medication - especially for longer seizures that go over 5 minutes.

Just before morning tea (ideally on an empty stomach so the pro-biotic works better): All put in 40ml of water which she happily drinks (thankfully).
50mg Pyridoxine (Vitamin B6). This is a tablet. I put it in the water and leave to soften.
GI Pro Balance (an excellent pro-biotic and pre-biotic to help with side effects on her stomach).
1/2 tsp Ambrotose (an excellent glyconutrient which will help with her immune system and all cell to cell communication). This is what helps Asher drink this concoction as she loves the taste of it. This is also a key to helping her recover when she has seizures and I believe is what the Lord has used to help her not have major developmental delays. The doc is always amazed at how well she is doing developmentally.
Hemp Oil
Asher has been on Hemp oil since February. If any of you have heard anything about medicinal cannabis - specifically "Charlotte's web" - an oil made specifically to help children with seizures: Cannabis is illegal in NZ but Hemp Oil is not and is the closest we can get to the health benefits of these plants.

After her afternoon nap (this can't be given too late in the afternoon as these products are all great for helping with energy levels - so we don't want them to keep her from sleeping in the evening):
50mg Pyridoxine. Again into water and wait for it to soften.
1/2 tsp Ambrotose
Hemp Oil (I am going to start giving this twice a day now - previously it was just in the morning).

After evening milk or a later snack (again because she needs something in her stomach).
5ml Epilim
5mg Clobazam (again remembering to put the cut tablet into the syringe to dissolve).

It's been good to write this all down. It feels less daunting now. :-) And I know that really the only change that has happened this week is adding the regular Clobazam. We had already started the Vit B four weeks ago.

Added to this medication regiment we also started Asher on a grain free diet in the middle of July. If you want to know why - check out "Grain Brain" by Dr David Perlmutter.

There was a mental adjustment for me this week though. I had to come to terms with the fact that Asher is going to be on number of medications for a number of months (if not years). When I saw her neurologist on Monday morning the first thing he said to me was that he was really impressed with how well Asher has done. He had honestly expected her to be on far more medication for many months now. So we will take encouragement from that. All the extra effort we have been putting in (Ambrotose, Hemp Oil and diet) have not been able to take the seizures away, but they have helped in reducing the severity of her epilepsy and have helped to keep her on a minimal amount of AEDs. Even now she is not on nearly as much medication as many other children are on. And we thank the Lord for this.

We continue to pray that the Lord would heal her. And we pray that if her healing is not what He has planned for her now, that He would help her body cope with the medications and that she would not suffer from side effects. We pray that the medication she is on now would stop seizure activity and that if she does have any more seizures - that He would continue to protect her as he has done through this last year.

When the doc discharged us on Wednesday morning, as he was leaving he said "Many prayers". So all glory to God for how well Asher has done through this last year and for His wonderful protection and care.

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