Time to play Catch-up!!

Can you believe it has been 2 months since Abigail was discharged from her most recent stay at Primary Children's? I said I would post when we got home, but that never happened. Every day I thought "I really need to do that"..I'm really sorry about that!
     Not too much has changed though since October. Abigail is still having on average 8 seizures a day (sometimes more, sometimes less). She is overall pretty calm but we are still battling tummy problems. I really hope we can get her off of the iron supplement she is on and see if that helps with the tummy and constipation issues. We started her on Iron back in August because she was having those breath holding spells, if you remember. Her Iron wasn't low, but it was on the low side of normal and sometimes low Iron can cause those spells I guess? The pediatrician didn't think that was the cause or would be the cure, but we decided to try it anyway....now I am more than ready to get her off of that..It's just a pain now for everyone, in my opinion..but what do I know? I'm just the mom. I've mentioned it to her pediatrician on several occasions and each time he tells me that it takes a few months for the Iron supplement to make a difference because we have to give time for the bone marrow to make new red blood cells. But in our last visit I asked if we could get a level at her 1 year check up and if the numbers look right to take her off of it, he said okay..we got her levels checked 2 days ago and I called Dr. Larsen (her pediatrician) to leave him a message about the levels being sent to him and to take a look due to how anxious I was to stop giving it to her. Dr. Larsen is wonderful, we love him as a pediatrician for Abigail and I think he's probably really annoyed about me asking, but I really want to get her off of this silly stuff! It's gross, it's not doing anything, she hates taking it, I hate giving it to her, and it's most likely the culprit of her constipation and tummy issues! If we take her off and she still has all those tummy issues and/or starts having breath holding spells again then I will know I was wrong and put her right back on it...but for now I REALLY want her off of it.
     Actually, Abigail has recently started holding her breath longer at times while she is crying, but it's not the same as before, but I'll keep my eye on it still.  
The meds we are currently on are: Vimpat, Keppra, Prevacid, Gabapentin, and Iron. We have recently taken her off of clonazepam, per my request, and there hasn't seem to be too much change in seizure activity or anything once that was cleared out of her system. Abigail has started having some sort of "twitches" though that started slight (about a week before thanksgiving) and have become more prominent and seemingly more constant. Last night as she was falling asleep she easily had 100-150 twitches before finally falling deep asleep. They don't seem to bother her really, like she doesn't get upset or angry when having them, and as far as i've seen doesn't seem to have more after she's been angry or upset..They do, I think, tend to be more common around falling asleep though. She also just recently, within the last 2 weeks, has started waking through the middle of the night with crying/screaming. If I leave her be she will go back to sleep and will sleep in until pretty late but it's still new, and not necessarily cool. I would have never connected the twitches to coming off of clonazepam before Thursday after talking to Tanner, someone who also has seizures (he's 28, so a little older than Abigail) but he is also on Keppra and Clonazepam. He said the Clonazepam helps him with twitches like that. I explained a little bit what Abi's looks like and he said that was very similar to what would happen to him and even would explain back to me things I've seen that I didn't mention. IDK - maybe I'll mention it to the doc and see if that's something he thinks may be a correlation as well...I did mention to twitches to him a while back but haven't been able to get a good enough video to send him to show him what I'm talking about. It happens so often you would think that is something I could do, but it's harder than it sounds.
     We are starting a new medicine, Potiga, within the next week or two also that I may wait and see what and if that helps with any of these things before worrying about it. Like I said, the twitches don't seem to bother her, and I just don't know if they mini seizures or closer to the myoclonic jerks that she has always had while falling asleep..or if they are something different entirely. I would like to see them go away, but I don't feel them to be a pressing concern just yet.
    About Potiga though, we have high hopes for it, but are being "cautiously optimistic" because it is still a new drug and there is still much research to do on it. But there are several accounts of parents using it and it working wonders with their children (who all have the same genetic mutation as Abigail). We do still have to be cautious of two bigger side effects of urinary retention and retinal detachment...the second one sounds way more scary than the first, but every 3 months or so we will go in for an eye exam to be sure things are still looking on the up and up there. I have only talked with one parent who has seen any side effects from this drug and it was the urinary retention, which essentially just means they can't pee. The doc said this is more of an inconvenience than something serious, but if left unnoticed or untreated it can (obviously) become serious so just to be on the look out for decreased urinary output. We are getting Abigail in on a trial with this medicine so what we see with her will be on the books! That's kinda fun, huh? I also have heard from one parent who's child was put on this medicine specifically for increased cognition. That their child hasn't had seizures in quite a while, but was put on potiga for the cognitive benefits - I like to hear stuff like that! Medicinally, I would love to get Abigail off of gabapentin (which we already got he 'OK' for and have started to wean) and Iron. If all seems to go well with Potiga I would also love to try to decrease her vimpat and keppra doses as well. Getting her off of those completely would be phenomenal, but I don't think that is realistic by any stretch, so a decrease will do. I would love to have Abigail on only 4 medicines instead of 6 or 7 (Right now she is only on 5, but that is because we took her off of clonazepam).
    My TRUE desire is to try Cannibas Oil with Abi..it's absolutely killing me how badly I want to try it. The doctors won't even talk to me about it since its so 'new' and not even obtainable here in Utah..although there is a big push for it everywhere. I have been trying to find Neurologist's information from Colorado who I could get involved with to try to see if it's even something that would be a viable option for our particular situation, but that's presenting itself as a bigger challenge than you would think also. In due time, I guess, but i'll just keep trying.
    In summary:
- We are in the process of playing with Abigail's medicines (still/again) to find a cocktail that works until I can get my hands on Cannibas to try that.
- Abi's seizures have plateud to about 8/day
- Abigail has periods of being very alert, playful, and strong. We are working on getting her to sit up and sometimes she does very well with that.
- Despite some tummy issues and continued seizure activity, Abigail is overall a happy baby.

Thanks for keeping posted! Pictures to come next.

This is AbiNormal