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".
Friday, August 24, 2012
Saturday, August 11, 2012
Down, but not out
I have been trying to post on here for almost a week now and have been so busy every night that I haven't gotten a chance to (until now).
We have surpassed another milestone - we have been on MAD for over 3 months now (3 month anniversary was last Sunday). I remember the dietitian telling us that we had to commit to trying it for 3 months and I felt like that was soooo long and well, here we are!
Camping turned out to be difficult with the diet and we ended up having a lot of struggles with Joshua while we were there. He had started entering another cycle of not eating a couple days before we left and that continued while we were camping. He either didn't want to eat or didn't want to eat what we brought for him that he could eat. He had quite a few meltdowns over food while we were gone and they were tough to deal with. One night I had to walk away and ended up taking a walk around the campground so Joshua didn't see me break down and cry in front of him. It is soooo hard to hear him cry for food that he cannot have, but sees other people eating. Most of the time he does really well, but those were some really tough days for us. Because he was not eating much, he was very lethargic and had little energy. He spent most of the time sitting in the bike trailer (we use it as a stroller) as he was too tired to walk. We took the boys swimming and he only got in the water for a couple minutes and then just sat on the sidelines watching. It is difficult to watch him sitting on the side and not participating in life and knowing that epilepsy has taken a lot from him. We had fun camping, but it was also stressful and a lot to deal with so I came home pretty depressed and wondering how in the world I was going to deal with this diet for approx. another two years (it can be very daunting to think about).
After coming home from camping I was pretty down in the dumps for a few days and feeling sorry for Joshua, Cole, myself and Chip in all we have to deal with regarding epilepsy and this diet. It doesn't just affect Joshua - it really has an affect on all of us and I realized that I was quickly starting to run out of all the positive energy I have had dealing with all of this since January of this year. I try really hard to stay positive and look at the bright side of things, but my positive energy tank was nearly depleted by last week and I needed to refill it quickly! I posted about my feelings on my online Doose Syndrome support group and another mother (Dawn) graciously emailed me privately and told me she would talk to me on the phone if I would like as she was right where I was two years ago. I jumped at the chance to talk to her so I could commiserate, learn, ask questions, find out how in the world she had made it this long, and how her son was doing. Dawn and I talked for 90 minutes and as we talked I could just feel the stress coming off my shoulders and I was beginning to relax. Dawn offered me a lot of great ideas and tips on eating, preparing MAD and keto foods (her son was on both diets), how to deal with holidays, parties and how I might be able to tweak things to get Joshua seizure free. Dawn was amazing to talk to - I really didn't know how great it would feel to talk to someone who truly understands exactly what it is like being on this diet day to day and all that it entails and just truly how difficult it is. As I am typing I am starting to tear up as I am recalling our conversation as it just meant SO much to me. Dawn really made me feel like I could handle Keto if we have to switch from MAD, which is something I am very anxious about. One of the tips Dawn told me about was making cereal for Joshua (one of his favorite pre-diet meals). We give him 8g of rice krispies (not much at all) and Keto "milk" (heavy cream diluted with water and liquid splenda). We tried it the very next day and Joshua was so excited and ate every bite of it - he has had cereal for breakfast everyday since then. :-) After talking with Dawn it made me realize how much we truly need a support group at the hospital for parents of kids on MAD and that I really need to get moving on that with our dietitian so that we can create the group. How fantastic would it be to create a place where parents could come together and talk about everything related to the diet and share recipes. I really need to make this happen because we all need support as this is tough stuff!
This week has been much better - Joshua is back to eating again (so happy about that) and he has a lot more energy. Even when he is driving me crazy it is so nice to see him with some energy as he didn't have any for so long. We are still not back up to pre-seizure levels of energy, but I'll take it!
Regarding his seizures, we are continuing to make progress. We are still daytime seizure free, but his sleeping Myos continue to hang on and be my arch nemesis. He averages less than 10 seizures per day, but it varies a little bit day to day - we have had a couple 1 seizure days. For the month of July he had 137 seizures!!!! Although that still sounds like a lot (and it is, we want 0), it is AMAZING progress. For comparison, he had 332 in the month of June so we had over a 50% reduction in his seizures from June to July. In early July I posted on here we would have a good month if we reduced down to 155 seizures and we beat that and got to 137. I hope and pray for continued reduction of seizures in August. One day I really hope to post on here that we had a seizure free month - I am determined to get there!
We are still in the process of weaning Depakote and it will take longer since we decided to slow down. This coming Friday we will go down another pill which mean we are 1/2 way done as that will be 3 pills (out of 6) gone. We have seen some behavior issues with the wean of Depakote, but I was told to expect that as the drug is removed from their system. He is also still having issues sleeping (or staying asleep I should say), but that is just becoming a way of life for us. Our Dr. told us to get Benadryl (which I did), but the online support group told me not to use it as Benadryl often causes seizures in Doose kids so we decided not to use it. I think we may try to get some Melatonin to see if that will help any (most Doose kids take Melatonin to help with sleep issues).
Joshua had his 1st speech therapy appt. this week and Chip said it went well. They are working with him on "what" questions since he struggles with those and they are the easiest to learn so that is where he is starting. We are also working on 1-step commands because Joshua cannot follow more than 1-step. The pathologist told us that we need to eliminate all distractions from the room, make sure we have Joshua's full attention and then give him a 1-step direction. After he completes that step, we then tell him the next step. For example, normally you might tell a child to "go upstairs, get your shoes and coat and come back downstairs". That does not work for Joshua - he looks at you blankly if you do that. So, we need to tell him to go upstairs and then once he is up there we tell him to get his shoes and after he does that we tell him to get his coat and so on. It's a learning process for all of us.
Joshua also had his OT evaluation this week at Good Sam's CTU (Children's Therapy Unit). As was found during his school assessment, he has trouble in this area (as does most Doose kids) and so they are going to begin therapy. We have (more) paperwork to fill out and then we will get put into a weekly therapy session. We are still waiting to be seen for PT, but hopefully that will be soon. I don't know how we are going to fit in all of his therapies once school starts, but we will figure it out.
Joshua and Cole are in swim lessons and Joshua is really loving it, at least now. The first few sessions he cried and didn't want to get in the pool, but we are over that now and he just loves it! We love the program because it uses a belt system that keeps him a float so we feel it is safe, even if he were to have a seizure. He is now even jumping off the diving board and going down the slide into the pool. It makes me happy that he can still enjoy some activities, especially one that is pretty scary when you have an epilepsy diagnosis. The boys attend twice a week and we will keep it up even after school starts because they love it so much. Cole is getting really good and learning a lot - making way more progress than he ever did at the YMCA.
I have decided to sign Joshua up for soccer as he is finally old enough to play and he wants to play sooooo badly. His Dr. has said that soccer is the safest sport so I am going to put him in fall, indoor soccer at the Y. He is so excited and I can't wait to see him play. I am not sure he will be able to keep up with the other kids in regards to energy and running around, but we'll see how it goes. I don't want his diagnosis to hold him back from anything so we are going to try it out and see if he can do it. I can't wait for his 1st game!
This coming Tuesday morning I am going to Washington DC for work and won't get home until late Thursday evening. This will be the first night I have been away from Joshua since he started having seizures in January. I am not nervous as he is in great hands with Chip, but I am a little sad that I will be so far away and that if he happens to spiral downward, I will not be home to be with him. I am hoping he will be great for the few days I'm gone and that it will go by quickly (I am sure Chip hopes the same - he he).
I think that about covers everything - phew! This was a long update, but I guess that happens when I wait too long in between posts.
We have surpassed another milestone - we have been on MAD for over 3 months now (3 month anniversary was last Sunday). I remember the dietitian telling us that we had to commit to trying it for 3 months and I felt like that was soooo long and well, here we are!
Camping turned out to be difficult with the diet and we ended up having a lot of struggles with Joshua while we were there. He had started entering another cycle of not eating a couple days before we left and that continued while we were camping. He either didn't want to eat or didn't want to eat what we brought for him that he could eat. He had quite a few meltdowns over food while we were gone and they were tough to deal with. One night I had to walk away and ended up taking a walk around the campground so Joshua didn't see me break down and cry in front of him. It is soooo hard to hear him cry for food that he cannot have, but sees other people eating. Most of the time he does really well, but those were some really tough days for us. Because he was not eating much, he was very lethargic and had little energy. He spent most of the time sitting in the bike trailer (we use it as a stroller) as he was too tired to walk. We took the boys swimming and he only got in the water for a couple minutes and then just sat on the sidelines watching. It is difficult to watch him sitting on the side and not participating in life and knowing that epilepsy has taken a lot from him. We had fun camping, but it was also stressful and a lot to deal with so I came home pretty depressed and wondering how in the world I was going to deal with this diet for approx. another two years (it can be very daunting to think about).
After coming home from camping I was pretty down in the dumps for a few days and feeling sorry for Joshua, Cole, myself and Chip in all we have to deal with regarding epilepsy and this diet. It doesn't just affect Joshua - it really has an affect on all of us and I realized that I was quickly starting to run out of all the positive energy I have had dealing with all of this since January of this year. I try really hard to stay positive and look at the bright side of things, but my positive energy tank was nearly depleted by last week and I needed to refill it quickly! I posted about my feelings on my online Doose Syndrome support group and another mother (Dawn) graciously emailed me privately and told me she would talk to me on the phone if I would like as she was right where I was two years ago. I jumped at the chance to talk to her so I could commiserate, learn, ask questions, find out how in the world she had made it this long, and how her son was doing. Dawn and I talked for 90 minutes and as we talked I could just feel the stress coming off my shoulders and I was beginning to relax. Dawn offered me a lot of great ideas and tips on eating, preparing MAD and keto foods (her son was on both diets), how to deal with holidays, parties and how I might be able to tweak things to get Joshua seizure free. Dawn was amazing to talk to - I really didn't know how great it would feel to talk to someone who truly understands exactly what it is like being on this diet day to day and all that it entails and just truly how difficult it is. As I am typing I am starting to tear up as I am recalling our conversation as it just meant SO much to me. Dawn really made me feel like I could handle Keto if we have to switch from MAD, which is something I am very anxious about. One of the tips Dawn told me about was making cereal for Joshua (one of his favorite pre-diet meals). We give him 8g of rice krispies (not much at all) and Keto "milk" (heavy cream diluted with water and liquid splenda). We tried it the very next day and Joshua was so excited and ate every bite of it - he has had cereal for breakfast everyday since then. :-) After talking with Dawn it made me realize how much we truly need a support group at the hospital for parents of kids on MAD and that I really need to get moving on that with our dietitian so that we can create the group. How fantastic would it be to create a place where parents could come together and talk about everything related to the diet and share recipes. I really need to make this happen because we all need support as this is tough stuff!
This week has been much better - Joshua is back to eating again (so happy about that) and he has a lot more energy. Even when he is driving me crazy it is so nice to see him with some energy as he didn't have any for so long. We are still not back up to pre-seizure levels of energy, but I'll take it!
Regarding his seizures, we are continuing to make progress. We are still daytime seizure free, but his sleeping Myos continue to hang on and be my arch nemesis. He averages less than 10 seizures per day, but it varies a little bit day to day - we have had a couple 1 seizure days. For the month of July he had 137 seizures!!!! Although that still sounds like a lot (and it is, we want 0), it is AMAZING progress. For comparison, he had 332 in the month of June so we had over a 50% reduction in his seizures from June to July. In early July I posted on here we would have a good month if we reduced down to 155 seizures and we beat that and got to 137. I hope and pray for continued reduction of seizures in August. One day I really hope to post on here that we had a seizure free month - I am determined to get there!
We are still in the process of weaning Depakote and it will take longer since we decided to slow down. This coming Friday we will go down another pill which mean we are 1/2 way done as that will be 3 pills (out of 6) gone. We have seen some behavior issues with the wean of Depakote, but I was told to expect that as the drug is removed from their system. He is also still having issues sleeping (or staying asleep I should say), but that is just becoming a way of life for us. Our Dr. told us to get Benadryl (which I did), but the online support group told me not to use it as Benadryl often causes seizures in Doose kids so we decided not to use it. I think we may try to get some Melatonin to see if that will help any (most Doose kids take Melatonin to help with sleep issues).
Joshua had his 1st speech therapy appt. this week and Chip said it went well. They are working with him on "what" questions since he struggles with those and they are the easiest to learn so that is where he is starting. We are also working on 1-step commands because Joshua cannot follow more than 1-step. The pathologist told us that we need to eliminate all distractions from the room, make sure we have Joshua's full attention and then give him a 1-step direction. After he completes that step, we then tell him the next step. For example, normally you might tell a child to "go upstairs, get your shoes and coat and come back downstairs". That does not work for Joshua - he looks at you blankly if you do that. So, we need to tell him to go upstairs and then once he is up there we tell him to get his shoes and after he does that we tell him to get his coat and so on. It's a learning process for all of us.
Joshua also had his OT evaluation this week at Good Sam's CTU (Children's Therapy Unit). As was found during his school assessment, he has trouble in this area (as does most Doose kids) and so they are going to begin therapy. We have (more) paperwork to fill out and then we will get put into a weekly therapy session. We are still waiting to be seen for PT, but hopefully that will be soon. I don't know how we are going to fit in all of his therapies once school starts, but we will figure it out.
Joshua and Cole are in swim lessons and Joshua is really loving it, at least now. The first few sessions he cried and didn't want to get in the pool, but we are over that now and he just loves it! We love the program because it uses a belt system that keeps him a float so we feel it is safe, even if he were to have a seizure. He is now even jumping off the diving board and going down the slide into the pool. It makes me happy that he can still enjoy some activities, especially one that is pretty scary when you have an epilepsy diagnosis. The boys attend twice a week and we will keep it up even after school starts because they love it so much. Cole is getting really good and learning a lot - making way more progress than he ever did at the YMCA.
I have decided to sign Joshua up for soccer as he is finally old enough to play and he wants to play sooooo badly. His Dr. has said that soccer is the safest sport so I am going to put him in fall, indoor soccer at the Y. He is so excited and I can't wait to see him play. I am not sure he will be able to keep up with the other kids in regards to energy and running around, but we'll see how it goes. I don't want his diagnosis to hold him back from anything so we are going to try it out and see if he can do it. I can't wait for his 1st game!
This coming Tuesday morning I am going to Washington DC for work and won't get home until late Thursday evening. This will be the first night I have been away from Joshua since he started having seizures in January. I am not nervous as he is in great hands with Chip, but I am a little sad that I will be so far away and that if he happens to spiral downward, I will not be home to be with him. I am hoping he will be great for the few days I'm gone and that it will go by quickly (I am sure Chip hopes the same - he he).
I think that about covers everything - phew! This was a long update, but I guess that happens when I wait too long in between posts.
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