2 Months on MAD

Today is a milestone for two reasons.  First, it has been exactly two months since we started MAD (Modified Atkins Diet).  Second, Joshua has been daytime seizure free for 4 weeks today!  Yahoo - mini celebration!  Daytime seizure free means that he has not had any seizures while he is awake over the last 4 weeks so no head drops and no absence seizures.  The diet IS working!!! 

Daytime seizure freedom is so awesome and it is great that he is not slamming his head into the nearest object out of the blue and hurting himself.  I am still not "comfortable" and every noise I hear I go look to see if he hit his head, but it is still amazing that we have not seen any of them in 4 weeks.  I'm not sure how long it will take me to get comfortable, used to it and not worrying, but until then I am enjoying the daytime seizure freedom and all that comes with it. 

As far as sleeping seizures - he is still having them, but the numbers have been reduced greatly.  We are seeing on average 3-6 Myoclonic seizures per day when he sleeps (either during his nap or at night).  This is a great number from where we came from as before he would be anywhere from 10-30 (sometimes more) every time he fell asleep.  We have increased his Zonegran over the last few weeks to try to eliminate these remaining Myoclonics and at first I didn't think it helped all that much.  But, after going back and looking at his seizure reports his Myoclonics did reduce after his medicine was increased (good news).  We continue to hope that we will find a way to get rid of the remaining sleeping Myoclonics, even if it means switching to traditional Keto at some point.

Here is a look at this seizure count by month.
April - 490
May - 375
June - 332
July - 19 (through July 5th) 

By looking at this you might think that MAD is not helping that much, but you have to look a bit deeper.  First, I think the April number is severely under stated and was probably more around 700 or more.  The reason it is under stated is 1/2 of that month I wasn't counting the number of seizures (just the types) and so I know I missed a lot of his Myos.  I also wasn't using Seizure Tracker until part way through the month which I know skewed some of the data.  May and June are accurate and you might think that a difference of 43 seizures is not that much, but you have to remember that the Myos have always been our high producing number as they come in clusters and can happen in rapid fire and they really drive up the numbers.  We have eliminated the daytime drop and absence seizures, but those accounted for approximately 10/day so it doesn't look like we have gotten rid of a whole lot in terms of numbers, but we really have in quality of life.  If April really was 700 then in May we reduced them almost in 1/2 and then further reduced in June.  If he has 5 Myos every day for the month of July he would be at a total of 155 for the month which would be another 50% reduction.  To think about going from approx. 700 seizures a month down to 155 a month in 3 months time all due to diet - pretty amazing!  I am a believer. 

I talked to Dr. Korol this week and shared the good news about the daytime seizure reduction and she was very happy to hear it.  She said we would talk about the possibility of weaning him off Depakote at our next appt. which is July 19th (in two weeks).  She said if he continues to stay daytime seizure free she would consider it.  Some people might think we are crazy to try to wean a drug so soon after starting diet therapy, however I have found that Depakote can actually counter act the diet and some Doose kids have not obtained seizure freedom on the diet until they weaned off of Depakote.  So, it is something I want to try to see if that will work to get rid of his remaining Myos and I would love to get him him off one of his drugs!  Let's all pray for continued daytime seizure freedom so we can have that discussion in two weeks.  We will also be talking about next steps if we cannot obtain seizure freedom and when/if we should switch to traditional Keto diet.  It will be more difficult than what we are doing now, but if we need to go that route, we will.  I don't know exactly how it would work, but I'm thinking we would give MAD at least a few more months before we switched.  But, I think if he is still having daily seizures when Halloween comes around I will be seriously talking about alternatives. 

Joshua had his speech therapy evaluation at Mary Bridge last week and he qualified for speech therapy.  It upset me, but I'm not really sure why as I already knew that based on his school assessment and the child neurologist assessment.  I guess I tricked myself into thinking that he was doing so much better lately on the diet and that maybe he had improved so much he didn't need therapy - it was possible, right?  No.  We received the written report in the mail and it was noted that both his receptive language skills and expressive language skills were delayed.  Additionally, they have concerns regarding his attention and cognition.  Sigh.  Now we wait to actually have him start attending speech therapy.  And, we are still on waiting lists at two places for OT and PT - ugh. 

We are in full swing here for summer.  I have been back at work full time for 3 weeks now and Chip has been home with the boys.  Cole started  playing T-Ball and we have been spending the weekends out and about finding new adventures.  Tomorrow we are going camping at Belfair State Park for the weekend - the boys are so excited!  I am nervous about Joshua's food, but we are only an hour from home if something happens and we need to come back.  We are packing everything ahead of time and luckily camping food contains a lot of stuff he can eat (hot dogs, hamburgers, eggs, etc.).  We are getting more comfortable with it and so we decided to "go for it" and continue to live our lives.  We will see how it goes and I will post some pictures next week.  I have also signed both boys up for swim lessons (yes, I said both boys).  I found an awesome place that does lessons and they are willing to work with us to ensure Joshua is safe at all times and it is a small pool and Chip will be sitting right there the whole time in case anything happens.  He will NEVER be left in the pool without someone holding onto him or him being supported.  He is so excited and it feels good not to let Doose take another thing away from him and just let him be a kid.  Swim lessons start next Tuesday so I will let you all know how it goes. 

I think that brings everyone up to date (for now).  I hope everyone had a happy and safe 4th of July.  Ours was a bit different due to seizures, naps, diet and my being sick, but we made it through and still had fun.