When I last wrote I stated we were going to start weaning Depakote and we have started that, but we are going slower than my Dr. suggested just to be safe. After posing a question to my online support group of Doose parents I got a lot of responses regarding the need for a really slow reduction so as not to see seizures or have other side effects (mood swings, irritability, appetite issues, etc.). So, after thinking about it for awhile we have decided to go down 1 pill every two weeks (instead of every 1 week). It cannot do any harm to go slower so we decided better to be safe than sorry and it is okay if it takes longer to wean than we thought (about 10 weeks instead of 5). So far we have only gone down 1 pill (from 3 to 2 at his evening dose) and so far it seems to be going okay. This Friday we will also reduce his morning dose from 3 pills to 2 which will make his total dosage for Depakote 2 in the morning and 2 in the evening.
We have seen 3 "possible" absence seizures since we started the wean which is another reason we are being extra cautious. I am not sure if what I saw were seizures or just him spacing out and ignoring me, but they were long enough to cause me to pause and panic. Had he been having seizures regularly I would have marked them as seizures, but since we haven't seen any in over 6 weeks I am really not sure. At the end of one of them he smiled so I don't know if he was just being "funny" and ignoring me or what. Ugh - I wish I knew for sure! We still have not seen ANY drop seizures which is great, but I worry about the possibility of the absence seizures sneaking back in. This diagnosis is such a roller coaster.
Overall the diet has been going pretty well, but I have been having a hard time the last few days. We have had family in town and have been out busy sight seeing, going places and attending events and the diet is sooooooo hard when doing those things! He has had a few meltdowns regarding food in the last few days and I almost broke down crying in front of him one day. It is so hard to see your child beg for food and know that you cannot give it to him because it may harm him, but you know he doesn't understand why you are telling him no. It is heart breaking in a lot of ways for him not to be like the other kids and indulge in what he wants. Most of the time he does pretty good, but he has his moments where I am sure he is saying to himself "this isn't fair!". And, I would whole-heartily agree with him - it is not fair. I am sure we will go through a lot of this over the next several years while he is on the diet and I'm sure it's all normal - it is just getting to me right now. We are also trying to plan vacations and trying to find a place to go where I can still keep him on his diet is tough and I feel like our options are limited. What can I say? Doose sucks!
On the positive side though the diet is keeping most of his seizures away. We still have not had a seizure free day since that one a few months ago, but I continue to hold out hope that we will get there some day. I continue to pray and hope that his brain will one day heal and that he will recover from all the damage that has been caused.
We are finally starting to make some progress on his therapies. He starts speech therapy at Mary Bridge next week and he will be going once a week for 12 weeks (to start). He is also scheduled next week to have his OT (occupational therapy) evaluation at Good Sam CTU and so hopefully after that he will start having regular OT appointments. We are still on the waiting list for PT (physical therapy), but hopefully we will start soon.
We are going camping for 3 days (leaving tomorrow) at Penrose State Park. I will be packing and preparing his food tonight (sigh) and we will hopefully have fun despite the weather not being so great right now. If all goes to crap, we can always head home as it is only an hour away from the house. I am a bit concerned as Joshua has not eaten since lunch yesterday (refused his dinner last night and everything today, including his favorite peanut butter ball) and slept for nearly 4 hours today after swim lessons. I hope it is just a phase and that he is not coming down with something. If he doesn't eat he won't have energy while we are camping which will make for us not being able to do much. We'll see how it goes - maybe tomorrow will be a better day for him. Until next time....
P.S. Chip retired last Friday from the Air Force after 22 years (the reason we had family in town). His ceremony was great and we celebrated that evening and we had a great time. I am very proud of him and glad that he is able to now stay home with Joshua during this time. He is an amazing father and husband and I'm lucky to have him. Thanks for your service, honey!
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