Prior to the initial wean, Raquel was taking 1,650mg/day of meds. Seizures were probably happening maybe once a month and they were the tonic ones, where her arms would go above her head and she'd get stiff. At this point, I felt that the seizures were being triggered by deviations in her diet - eating or drinking a forbidden item in error. Dr. Mower thought it was pretty coincidental as well, since I keep journals and document everything, so the weaning began.
One med was reduced slightly, so her new daily dose was 1,400mg/day. She did really well at first - seemed a lot more alert, focused, did well working with her teacher at home. We found her to be more attentive and she had the ability to stay on task for longer periods of time. Yay!!!
About 2 weeks after this reduction, she began to develop what is called "drop seizures", where she would just randomly fall for no apparent reason. It would happen while walking across the kitchen (she actually cut her cheek on the kitchen counter once), in the bath, playing in her room, sitting in her chair watching tv. It was just a random thing - and not a good one. These types were new to her, so of course I called Dr. Mower, who was in the process of relocating to Northern California.
We tweeked the meds again after the drop seizures started, reducing one medication and increasing another so she was now taking 1,500mg/day. Again, she did pretty well initially, but to see the effects of the med increases/decreases can take anywhere between 2 days and 2 weeks with her. It's just a waiting game - all you can do is hope for the best, document everything, and pray.
Around the first week in August, she continued to have drop seizures, although they became less frequent (maybe 5 a day instead of 10), but she now started developing "absence seizures", which are by far my favorite. With these, Raquel would be sitting and then just briefly tip over and check out for a few seconds. Again, not good when it happens in the bath but for Raquel, these are the least evasive to her and the easiest for me to deal with. I don't freak out. :) These are also referred to as staring spells where it kinda looks like she's daydreaming. Who knows? Maybe she is.
So meds were adjusted again in mid-August, just a week or so before Dr. Mower's last day, and I was pretty stressed at this point. We reduced one med more and increased the other, putting her at 1,100mg/day and just went from there. I did speak with him one more time before he left and asked what his next recommendation would be, new medication choices, etc. I felt I needed to have that conversation with him because he has treated Raquel for so long, ordered up all the tests, analyzed test results, etc. There are 2 additional medications he said he'd suggest being tried, but before doing that, he said I should take the Keto Diet to the next level and instead of keeping her on the Low-Glycemic Index Treatment - the lowest level of the diet - to get with the nutritionist again (GREAT) and to start weighing and calculating meals more.
Towards the end of August, seizures increased to the worst they've ever been. The absence seizures were gone, but the tonic ones came back in full force - daily, even multiple times a day - and she continued to have drop seizures in addition to those. Good times. So, I re-read my journals over and over again, and reviewed the doses and the doses in each wean process and after a lot of thinking and soul searching, decided to put her back where I probably should have left her in the first place - at the original med level of 1,650mg/day - until our new neurologist is assigned and I can get in touch with my forever missing-in-action Keto nutritionist.
She has been back at her full dose for almost 3 weeks. I wish the seizures were gone, but she is starting to have good days and bad days, instead of just really, really bad days. She no longer has absence seizures or drop seizures - the two I seemed to handle the best - but tonics are still occuring a lot more frequent than I'd like to see. They are no longer contributed to her being cold, stressed, tired - they are random now, but are becoming less frequent. We are at a point now where she is even going a couple days seizure free. It may take a while to get her back to where she was. I don't know. Hope and prayer, that's all I can say.
She has also started weekly physical therapy and I've learned a lot. We had her fitted for orthodics to wear in her shoes...
And she's doing a lot of exercises to strengthen her legs and overall low muscle tone, such as kicking blocks...
And stepping on squishy ball things, which not only helps with the leg strength, but also improves balance.
Next week weekly speech therapy should be starting up as well.
