Crazy Week

Wow!  What a long week and I'm sure it was much worse for Chip than for me since he was home with the boys. 

Monday set the tone for the week and not in a good way.  I woke up to find Joshua in the kitchen with his medicines sprawled out in front of him and his liquid medicine spilled all over the counter.  When I asked him what he did he said he filled up the little medicine cup dispenser with the medicine and drank it.  I put water in the cup and measured it out and if he drank it all he would have had 20 MLs which is 4 times the dose he is supposed to have!!!  Additionally, one of his Depakote tablets had been broken into, but I couldn't tell if he had taken any of it and all 6 of his vitamins for the rest of the week were gone (he ate them).  We of course panicked and called poison control who were AWESOME and we spent most of the morning on the phone with them.  Joshua ended up puking twice that morning and sleeping 1/2 the day away as he was really drowsy and we had to wake him every 30 minutes to ensure we were able to arouse him.  After about 1:00 in the afternoon poison control told us we were past the critical point of time and they thought he was going to be fine.  Luckily he was, but we were a nervous wreck and had to call his neurologist to figure out what to do about his medicines after that (do we give them to him, how much, when, etc.).  It took two days, but we got his meds back on track.  It was REALLY scary!  He has never gotten into his meds before and the pills are in a weekly counter that you have to get into and the liquid has a child proof cap on it - I guess not so child proof after all!  Needless to say, the meds are now in a cupboard that is LOCKED! 

In addition to the meds, Joshua has been getting into food.  When we turn our backs for just a minute, he gets into the cupboard or refrigerator and even once our garbage can.  Yes, that is right - he went into our garbage can and dug out some food and ate it!  He has cheated so much on his diet starting with Sunday at my cousin's house with a banana that he has not been in ketosis all week!  So, we have now moved all the food into one cupboard that we have now locked and we have locks on the refrigerator.  However, he has already figured out the locks on the fridge so today while Chip was in the shower he got into the fridge and ate two yogurts which is more carbs than he can have in a whole day.  He is so far over today there is no way we can recover and give him enough fat to overcome all the carbs.  IT IS SO FRUSTRATING!!!  We literally cannot leave him alone for 1 second or he will get into something so it has become extremely tiresome with no breaks (especially for Chip when he is home with Joshua by himself).  I am really not sure where to go from here because there are no other locks we can put on the fridge. 

So, you may be wondering what kind of seizures we have seen with all this cheating???  The answer is NONE and I'm very perplexed about it!  I don't get it - it makes no sense and goes against everything I have been told by everyone.  I even called his dietitian today and she told me she cannot explain it because usually kids will have breakthrough seizures when they cheat on the diet and that it is very strange that he has not with his large cheats.  So, of course this got me thinking about what this means and do we need to be as strict or is the diet working the way we thought or is it something else?  Are we just lucky?  Are the seizures going to hit in the next few days or weeks?  Of course there are no answers to any of these questions - which is frustrating in itself.  All kids with seizures are different and no cases are alike - argh.  Our dietitian urged us to continue with the diet with the same vigilance as we always have as we don't want to lose the control we have gained and I will, but I still cannot wrap my mind around this.  Don't get me wrong, I am THRILLED he isn't having any seizures as a result, it is just very unusual and does not correspond with anything we have been told and has got me questioning everything.  We are also still weaning Depakote so that even makes it more strange as he is on less meds than before and his diet is not where it should be and we still have not seen any activity.  Feeling very blessed, but confused. 

We have started having other issues as well over the last week or so.  Joshua has starting pooping in his pants, urinating on the floor, getting into EVERYTHING and having serious behavior issues.  This is beyond frustrating to both of us because he knows better about going potty and the urinating appears to be very purposeful.  I talked to our dietitian about it and after hearing about all the cheating she told me that she thinks all of this acting out behavior and toileting issues all stems from the food.  She said it is common for kids to have issues like this because they cannot control their food or anything surrounding their food and so they look for other areas (anything) to control.  So, all of this may be about control and she told me to work on giving him some control in other areas of his life and try giving him choices.  One thing we have struggled with lately is Joshua wants to be in his PJs 24 hours a day.  She suggested we give him a choice about what to wear and if he chooses to wear PJs all day, then so be it.  Her thought was if it gives him some control and helps with the other issues, who cares if he is in his PJs all day - we have bigger fish to fry.  She is right so I think we will try that.  We also talked about whether or not we should take Joshua to a therapist to help with some of the issues we are seeing and she thought it was a good idea and said it is not uncommon for kids on the diet.  She said that so much revolves around food in our society and so he is really grieving the food and acting out in response to our restricting him so much so some therapy may be good for him.  She said that although the diet stops the seizures, it can cause other problems like eating disorder type behaviors (e.g. digging food out of the garbage) and we can try to work with a therapist to help in those areas.  So, if we continue to see issues we may talk to our pediatrician about getting a referral for a therapist, but we are going to see if things improve any over the next few weeks as we finish the wean.  Sigh. 

Seizures remain about the same - still seeing myos every time he falls asleep at night or for naps.  We are 1/2 way through the Depakote wean and we have not seen a reduction in seizures so I'm beginning to think that it is not going to be the miracle I was hoping for.  I will be really glad to get off 1 med and be down to 2, but I was hoping it would reduce his seizures to 0 based on the info that the Depakote interferes w/ the diet.  I will give it some more time, but I just feel in my heart that it is not going to get us there.  So, we will need to decide if we continue on like we have or if we switch to ketogenic diet to try to eliminate the remaining seizures.  I really don't want to switch, but the thought of seizure freedom is just too good not to try.  I am going to the ketogenic conference in Chicago in September and I hope to gain some answers there and maybe even get to talk to a few specialists that will be there speaking.  Dr. Kossoff  (keto guru Dr.) said recently to another Doose Mom that Doose is the one condition where they have seen a difference in switching from MAD to Keto to eliminate seizures.  And, I have had several Moms tell me their stories as well that MAD reduced their seizures, but after a few days on Keto their child's seizures were eliminated - extremely enticing!  Like I said, I hope to gain lots of information that will help make the next informed decision on where we go next.

I hope everyone has a great weekend.  We are hoping for a calmer one, yet somehow I don't think we are going to get it. 

P.S.  Weaning Depakote is awesome!  Joshua is starting to act more like his old self again and has more energy.  You can tell that he is not as drugged up as he used to be and I can only think this will help him as we start school in two weeks.  I can't wait for the day when he will be off ALL drugs and not living life through a "hazy fog".