Ugh! Seizures Coming Back.....

I am incredibly frustrated tonight!  We had 1 blissful seizure free day last Thursday - we saw NONE during the daytime and NONE at night.  I was so elated and really thought we were heading in the right direction and that Joshua was going to be a "super responder" to the diet.  But, then.................the next day (and everyday since) his seizures have started coming back.  ARGH!!!

I started noticing his Myos were coming back at night (and then also during nap) when he was sleeping or transitioning to sleep.  It was an all too familiar feeling and pattern and with each passing day I began to get more and more nervous.  His day time seizures (absence and atonics) were staying away, but the Myos started increasing every day (even  going back up to pre-diet numbers on some days).  I began to fear that soon we would see the daytime seizures come back as well.  Last night he had a Myo when he was still awake and we were reading a book so that really sent my fears into over drive because the awake Myos have never been a good sign for us. 

Tonight he had an Atonic head drop at dinner (my Mom was babysitting) and he hit his head on the table.  My Mom texted me and told me as Chip and I were at the epilepsy support group meeting.  I just sank in my chair as I realized that now the daytime ones are coming back as well.  It is heart breaking to have that one day of no seizures and then right back into it.  Last week I was elated, this week deflated.  Here is how the last few days have been number-wise.

 Thursday - seizure free day
 Friday - 6
 Saturday- 7
 Sunday - 36
 Monday - 27
 Tuesday -  13 (understated b/c don't have numbers from his nap as he was at school)
 Today - 17 which included the 1 head drop and does not include numbers from his nap.

We had more blood drawn today and go back to the Dietitian on Friday so maybe we will get some answers then.  Perhaps we are doing something wrong with the diet and tweaking it will help get us back on track?  I can only hope and pray that it is indeed something we are doing wrong and that we can fix it.  The strange thing though is that his ketones are still high so I don't know what to think of that because you would expect his ketones to be low if he is having seizures.  All of this makes me fearful that we are not going to get full seizure control on MAD (which was always a risk) and that we may have to move to Keto in the future.  Although I will do it if needed, I really do not want to and was really hoping MAD would be our answer.  Our Dietitian and Neurologist want us to give MAD 3 months before making any decisions (and we will), but I have to start thinking about the possibilities of what the future may hold.  August 5th will be 3 months and if we do move to Keto I would like to do it before school starts back up in September since he will have to be in the hospital for 3-5 days and we will need to make arrangements for Cole.  I know, I am getting too far ahead of myself - stay in the present day Michelle.

Perhaps we are just going through a rough patch or perhaps he is out of sorts or who know what - other Moms on the support group have said they have seen the seizures come back sometimes with the diet and that tweaking sometimes helps.  Unfortunately only time will tell if his seizures are going to continue to come back or if we can get back to zero seizures like that one day.  It would have been so much easier if we were slowly declining and I was just in the middle of getting there, but the dramatic reduction and 1 day seizure free really got me hopeful and these seizures coming back are just crushing.

We are keeping up the good fight!  :-)