A Hard Week

I don't know specifically why the last few days have been hard, but they just seem to be.  I think the flood gates have finally opened (at least a little) as I started crying this week a few times.  I don't know if that is good or not, but it is has come.  Maybe now that I'm working less I have more time to slow down and reflect on things where before I was too busy to sit down and really think about all that is going on.  Either way, it's a been a challenging week for me. 

Last weekend was hard because it was so nice and sunny and I just wanted to be out enjoying it, but everything I thought of that I wanted to do I had to think about whether it would be safe for Joshua or not and most were not so had to think of something else.  I didn't want to take him to the Puyallup Spring Fair because I wasn't sure if he should go on the rides (and let's face it - taking him and telling him not to go on the rides was not going to happen).  I thought about going to Lake Meridian which is one of our favorites, but he is not supposed to go in water.  I thought about having him ride his bike, but he is not supposed to do that either.  I felt a bit trapped and it made me wonder what are we going to do all summer???  We did get out for a family bike ride on Saturday evening and we put Joshua in the bike trailer where he just sits and Chip pulls it.  That worked out okay.  On Sunday we did end up taking him to the park (against our better judgement), but we made him wear his helmet and knew we would be on him like white on rice.  Of course as soon as we get there a kid makes a rude comment and asks "why is he wearing a helmet?".  Luckily Joshua was off in his own world and didn't hear it nor pay any attention so I didn't even bother answering the child.  He then went on the swings with Chip and had a head drop seizure while on them so Chip promptly took him off the swing and came over to me and said "yeah, we are done with the swings".  Joshua was fine and did not fall off, but it scared Chip enough to take him off.  We didn't stay at the park much longer after that.

On Monday night I was giving Joshua a bath and he was laying on his tummy playing and he had a head drop seizure which sent his head completely under water with no warning.  Luckily I was sitting right there and pulled him up out of the water immediately, but he was gasping and crying and wanted to get out immediately.  It scared the hell out of me!!  You know when you have small children you never leave them in the tub alone and when we found out he had epilepsy we were told again NEVER to do that as they can drown in a very small amount of water - well this just reinforced it big time!  I haven't left him and I'm SO THANKFUL that I was right there, but it really rocked me to my core knowing what could have happened had I not been there.

I am getting more and more anxious about starting MAD.  We meet with the Dietitian next Tuesday and plan to start that weekend (need a few days to go shopping and get ready).  I have read the Ketogenic book and have been looking up recipes.  I'm nervous about all the changes we have to make and how he is going to adjust to it and wondering if he is going to eat the food or if he will fight it or if he is going to lose more weight (he has already lost weight and his appetite has changed a lot).  I want to hope that we will see seizure reduction on MAD, but also don't want to get my hopes up too high in case we do end up needing to go all the way to Keto at some point.  There is just a lot running through my mind about all of this right now.  I'm sure my nerves will be better once we have been on the diet for a little while.

We increased his new med (Zarontin) from 1 ML twice a day to 2 MLs twice a day and you can really tell.  He has been pretty out of it the last two days and acts "high" for awhile after he gets his meds (he now takes 3 meds twice a day).  He is having a hard time putting sentences together and is extremely unbalanced.  I had to walk up behind him on the stairs because it looked as if he was going to fall over at any minute.  He has huge dark circles under his eyes, but those seem to be there all the time now.  I hope he adjusts to the new med, but we increase even more next week.  He was like this for several weeks when we increased his Depakote, but he eventually got used to it and adjusted so I hope that happens again.  I hate seeing him all drugged up and seeing what it does to him.  It doesn't help that he still has so many seizures every day that its hard to know if the meds are doing anything and you hate to think you are drugging your child with no benefit. 

He had 6 head drops today so that always stresses me out when he has more than normal (averages about 3 of those types per day).  I hate the drops the most so it bothers me when those increase or change at all.  He continues to have lots of Myos and some absence seizures every day as well.  Today he had a real long absence seizure (probably the longest one he has had so I don't like that either).

I have been tracking his seizures in a computer program which generates reports for me.  So far in the month of April I have tracked into the system 376 seizures.  However, I know this is severely understated because I didn't start counting all his cluster seizures until about 1/2 way through the month and up until a few weeks ago I wasn't keeping track of the number of seizures per day, just the types of seizures per day.  So, the number is probably more around 500 or so.  I don't know if this is high or low compared to other months because I didn't keep accurate count before, but the number is startling to think about.  I will have an accurate count for May which will be more important as we are starting MAD and will need to see if there is improvement or not.

One of the positive things this week -  I went to the parents of children with epilepsy support group last night and I always leave there feeling better (I have met some absolutely wonderful people and received a wealth of information).  I got some great information about a program to get Cole into (it is for siblings of children with a chronic illness) that I think will help a lot.  Cole has been feeling left out and like life is "just not fair" since this all this started so I think a program that is all about him will be helpful.  He told me at dinner tonight "I wish Joshua never started having seizures".  I just looked at him and said "Me, too".  What else is there to say? 

I guess that is it for now.  I will be posting next week after our appt. with the Dietitian on Tuesday and his assessment for special education preschool on Wednesday.  Oh, and the 2nd round with the neuro psychologist is tomorrow morning (Chip will be taking him).  We won't get the results of that for several weeks.

P.S.  Less than 2 months to join our team or donate/sponsor a team member for the Epilepsy Walk on June 16th.  There is a link on the top right hand page of the blog - find Team Joshua in the Tacoma walk.

Michelle