This past week I went back to work full time as I was running out of my FMLA and I didn't want to use it all up in case things get worse later on and I need the time. So, last Monday I went back full time and wow, was I tired! I was getting to work at 7 (leaving my house at 6) and leaving work about 4 and getting home about 5. It was hard to go back and leave Joshua, but I knew he was in great hands with Chip.
It was also the boys' last week of school (Joshua's last day was on Monday and Cole's last day was on Tuesday). Tuesday was super busy for Chip as he had his final out processing for the Air Force that morning (in which he had to take Joshua with him) and then he had to pick Cole up from school and then take Joshua to his speech evaluation in the afternoon. All 3 of them made it through the day and were still smiling when I got home. We should get the results of Joshua's evaluation soon and then hopefully will get a date for starting his speech therapy at Mary Bridge. We still have not made any progress on his OT and PT therapies as we are still on long waiting lists.
With Chip's final out processing he is officially done working and will be caring for the boys full time. They have been having a lot of fun together already and have some fun things planned to do together this summer. I am going to be very jealous going to work while the 3 of them get to play all day. We are lucky with timing though because it is so wonderful that Chip gets to be home with them, especially during this time.
The diet has been going well, but we had a set back Thursday when Joshua got into some cookies that Cole had hidden in his room that we did not know about. Chip found Joshua sitting in Cole's room enjoying a bag (small, the kind you would pack for a lunch) of cookies and saw that he had already finished another bag. We don't know exactly how many carbs he ate, but we know he at least had 20 which is more than he can have in a single day so we were VERY concerned about him having more seizures. He did have more seizures that night when he went to bed, but he did not have an increase in his daytime seizures so we were very relieved about that and he seems to be back on track now.
And, speaking of daytime seizures - we have good news to share. I hesitate in sharing it as I always feel like I'm jinxing myself, but I still have a need to celebrate when things are going well. So, here it goes - we have not seen a daytime seizure in a little over two weeks now!!!!! We are sooooo ecstatic about this because if we can keep this up, we will be talking to Dr. Korol in July about starting to wean Joshua off of Depakote which I want to do so badly. So, keep your fingers crossed that we can keep him controlled during the day. He is still having seizures when he is sleeping, but the numbers are continuing to decrease and we have had some really low number days. We just can't seem to be consistent with those sleeping Myos and they keep hanging around, even with the recent increase of Zonegran. We are on the 2nd week of the Zonegran increase and are still having seizures every night and nap, but maybe it will take longer? We will keep trying and see what happens.
We are doing much better on the diet ratios and seem to be pretty consistently hitting our goal of a 3:1 ratio (three times as much fat as carbs+protein). We were having big problems with the numbers when he was eating hamburgers because they had so much protein so we have switched to giving him sausage patties and it is working so much better. He still thinks they are hamburgers so we call them that so he will eat them (whatever it takes). We are getting much more confident with the diet and it is getting easier. He still eats very little variety so we haven't tried cooking a bunch of different things, but I hope to soon as I feel he will get sick of eating the same things. I guess we will cross that bridge when we get to it - for now, it is working so I will take it.
I have decided to go to the Ketogenic conference in Chicago in September to learn more about the diet and hear first hand from some of the best doctors in the country. I had enough airline miles to get my flight for free so I'm just paying for the conference and hotel room. There are a lot of other Doose parents attending from my online support group so I am extremely excited to meet them as we talk almost every day. I hope I will return with so much more information and knowledge.
I think that is all for this week - I hope things are a little more calm next week.
Saturday, June 23, 2012
Saturday, June 16, 2012
NW Epilepsy Walk
Today was the Tacoma NW Epilepsy Walk and Team Joshua was out in force! Everyone looked awesome in their Team Joshua t-shirts and the sea of purple was so neat to see. I really felt all the support and love for Joshua while we were there and teared up when I got home thinking about how lucky we are to have such an amazing support system made up of friends and family. Some friends we have known forever and some are new friends that we met through this journey, but both are so needed in our life right now. We had a great turn-out and Tacoma raised over $28,000 and beat Portland! Whoo Hooo! Team Joshua took top honors for the most money raised by a team with just a little over $3800 - yeah! Also, 3 out of the top 5 individual fundraisers were from our team so we were a force to be reckoned with! I am still amazed at the generosity of people to give to such a worthy cause and to show their support for Joshua and our family (we even had friends who were NOT walking, but came by to cheer us on and even made signs!). We are blessed. Here are some pics of the event.
I was asked to speak at the opening ceremony today and I was nervous, but also excited to bring awareness to Doose Syndrome by sharing our story with so many people. I was toward the end of all the speakers and listening to everyone before me made me start tearing up while I was waiting to speak so I was really worried I would not get through it all. My first few words were a bit shaky (wanted to cry), but then I pulled it together and made it through! It felt so good when it was over that I was helping to make an impact on this beast that has taken so much from us. For those of you that were not there, below is the speech I gave.
Michelle's Speech
Our family did not know a lot about epilepsy before 2012 and we certainly did not understand the impact it has on people's lives and of the lives of those that love them.
My happy boy!
My nephew Ben and Cole showing off our shirts
The 4 of us - me, Joshua, Chip and Cole
Team Joshua group photo
Joshua's cape that my Mom made him
Riding in the bike trailer - too long of a walk for him
Another group photo of Team Joshua
I was asked to speak at the opening ceremony today and I was nervous, but also excited to bring awareness to Doose Syndrome by sharing our story with so many people. I was toward the end of all the speakers and listening to everyone before me made me start tearing up while I was waiting to speak so I was really worried I would not get through it all. My first few words were a bit shaky (wanted to cry), but then I pulled it together and made it through! It felt so good when it was over that I was helping to make an impact on this beast that has taken so much from us. For those of you that were not there, below is the speech I gave.
Michelle's Speech
Our family did not know a lot about epilepsy before 2012 and we certainly did not understand the impact it has on people's lives and of the lives of those that love them.
I am the proud mother of 2
young boys and in January of this year our lives changed dramatically. Just before Joshua's 4th birthday he started
hitting his head on tables and spilling his milk. We just thought he was clumsy or unbalanced. After researching the web to see what might
be going on, we feared these might be
Atonic seizures and took him to see our pediatrician. We had an MRI and EEG done and the EEG
revealed he was having generalized seizures about every 2-8 minutes. We were put on Depakote immediately and told
that Joshua had Epilepsy (it was 3 days after his 4th B-Day).
We were doing OK on
Depakote for a few weeks until Feb. 22nd.
At 5 AM I woke up to a strange noise and found Joshua in the middle of a
grand mal seizure on my bedroom floor. I
had never seen one before so I panicked when I saw he was foaming at the mouth,
turning blue and having a hard time breathing.
We called 911 and spent most of the day in the ER. After this Joshua started having absence
seizures, Myoclonic seizures and Atonic head drops on a daily basis. We were seeing on most days around 50+
seizures.
In March we were diagnosed
with Doose Syndrome which is a rare childhood epilepsy that is very difficult
to treat because the patient has multiple seizure types and the seizures are
often resistant to medications. Joshua
is on 3 medications twice daily and they have done little to control his
seizures.
Joshua has regressed in
most areas since his seizures started and sometimes he seems like a totally
different kid. He has issues with his
speech, focus, attention span, balance, gross and fine motor skills, memory and
preschool academics. He is often lethargic, irritable and overly
sensitive. He qualified for and now
attends special Ed preschool.
Now, let's get to the
positive stuff! On May 5th we started
the Modified Atkins Diet (MAD) which is similar to, but less restrictive than the Ketogenic
diet. We have seen over a 50% reduction
in his seizures and have almost completely stopped his daytime
seizures. We are now working to get rid
of his night time Myoclonics by tweaking the diet and adjusting his medications. If all goes well we could be weaning one of
his medications starting in July.
My ultimate goal is to get
Joshua seizure free and medication free and I won't stop until that happens.
Our
family is fighting WITH you and together we WILL beat this beast we call
Epilepsy.
Thursday, June 14, 2012
Talked to Neuro - Have a Plan
I am happy to report that I talked to Dr. Korol yesterday and we now have a mutually agreed upon go forward plan.
We have decided to leave his Depakote alone and increase his Zonegran to 125mg twice a day for one week and then increase again to 150mg twice a day (he is currently at 100mg twice a day). Dr. Korol first prescribed Zonegran specifically for his myo seizures and since those are the ones that are still persisting (and his Zonegran levels are low) she wants to try to increase it. Since I heard that Zonegran actually works well with the diet and pushes the child further into ketosis I was okay with this.
We also talked about what to do with Depakote. Dr. Korol said if Joshua's head drop seizures stay at bay for the next few weeks she would be okay with starting to wean him off Depakote. YEAH!!!! I'll be extremely nervous about it, but very excited at the same time. So, now we just have to hope and pray that his drop seizures stay controlled so we can start weaning Depakote sometime in July. It would be fantastic if Joshua could be off Depakote (and down to 2 drugs) by the time he went back to school in the fall. The wean will be slow as you can't just stop the medicine, but it will be awesome at the end of the wean. Of course if he starts to have head drop seizures when we take the Depakote away then we will need to increase his dosage back up, but let's not dwell on that possibility. We should know within a few weeks if increasing the Zonegran is going to help with his sleeping myos.
When Joshua goes seizure free (she said "if", but I'm saying "when") then we will talk about when to try to wean his other meds and how long he will need to be seizure free before we do that. I don't want to get ahead of myself, but that possibility hanging out there gives me hope. Dr. Korol kindly reminded me that a lot of kids still require being on 1 med even while on the diet and my response was that Joshua was going to be the exception to that rule. :-)
We increased his Zonegran today so we will see within the next few days to a week if he has any side affects from the increase. We typically see him being more tired for a few when we increase his meds until he gets used to the new dosage. His last day of school is next Monday so it should not affect him at school, even if it does make him more tired.
Michelle
We have decided to leave his Depakote alone and increase his Zonegran to 125mg twice a day for one week and then increase again to 150mg twice a day (he is currently at 100mg twice a day). Dr. Korol first prescribed Zonegran specifically for his myo seizures and since those are the ones that are still persisting (and his Zonegran levels are low) she wants to try to increase it. Since I heard that Zonegran actually works well with the diet and pushes the child further into ketosis I was okay with this.
We also talked about what to do with Depakote. Dr. Korol said if Joshua's head drop seizures stay at bay for the next few weeks she would be okay with starting to wean him off Depakote. YEAH!!!! I'll be extremely nervous about it, but very excited at the same time. So, now we just have to hope and pray that his drop seizures stay controlled so we can start weaning Depakote sometime in July. It would be fantastic if Joshua could be off Depakote (and down to 2 drugs) by the time he went back to school in the fall. The wean will be slow as you can't just stop the medicine, but it will be awesome at the end of the wean. Of course if he starts to have head drop seizures when we take the Depakote away then we will need to increase his dosage back up, but let's not dwell on that possibility. We should know within a few weeks if increasing the Zonegran is going to help with his sleeping myos.
When Joshua goes seizure free (she said "if", but I'm saying "when") then we will talk about when to try to wean his other meds and how long he will need to be seizure free before we do that. I don't want to get ahead of myself, but that possibility hanging out there gives me hope. Dr. Korol kindly reminded me that a lot of kids still require being on 1 med even while on the diet and my response was that Joshua was going to be the exception to that rule. :-)
We increased his Zonegran today so we will see within the next few days to a week if he has any side affects from the increase. We typically see him being more tired for a few when we increase his meds until he gets used to the new dosage. His last day of school is next Monday so it should not affect him at school, even if it does make him more tired.
Michelle
Tuesday, June 12, 2012
Med Levels
We routinely have to get Joshua's med levels checked to ensure he is at a high enough level to keep him protected - what the doctors call the "therapeutic level". We had Joshua's blood drawn on May 30th and when we got the results last week, two out of his three meds were below the appropriate levels. This was strange because the last time before that his levels were all good and we have not changed his dosages since, but we did start the diet so it got me thinking that perhaps the diet had something to do with it?
His Depakote level was 33.8 and it should be between 50-100. His Zonegran level was 9.2 and it should be between 10-20. His Zarontin (the newest med) was at an appropriate level. The day of his blood draw was a bit "off" and we got his blood drawn later than we should have so I started wondering if that could have affected the results. When Dr. Korol called that evening to discuss next steps with me she suggested we increase his Depakote because his levels were so low. My first thought was "No Way - we are on MAD to eventually get rid of the meds, not increase them". I explained the off day we had and she suggested we take his blood again just to be sure we got an accurate reading.
So, last Thursday we had his blood drawn again. Let me just digress here and say that he is such a trooper at blood draws now! He never cries anymore and sits in the chair and puts out his arm. We call it getting his "Joshua juice" taken out of his arm so he has now started saying that. Too funny! Anyway, today I got the results from the blood draw and although they were a bit better, they are still not where Dr. Korol wants them to be.
Depakote - 36.7
Zonegran - 10
I have done some asking on our yahoo support group to find out if the diet can affect med levels and it turns out they can and a lot of kid's levels went down after starting the diet. I also found out that Depakote can actually counter-act the diet because of the way it is metabolized in the blood. I won't go into the technical mumbo jumbo of it, but some kids didn't go seizure free until AFTER Depakote was reduced or weaned. Of course, there are kids that are the opposite and had to have more Depakote - every situation is different (which is frustrating). So, I started thinking maybe we should not increase Depakote and if I take it a step farther maybe we should start decreasing Depakote? It seems counter intuitive to me to increase meds when overall he is having less seizures, but I am not a Dr. I shared a lot of this with the nurse who said she would pass it along to Dr. Korol and then get back to me. Later the nurse called and said Dr. Korol wants to increase his Zonegran. I like that idea better than the Depakote as I have heard that Zonegran actually works with the diet to put you further into ketosis, but I still am hesitant to increase at all when we are having less seizures. But, then again Zonegran was added to help with the Myos and those are the ones we have the most difficulty with so maybe it would be best to increase it? I can't help but wonder if maybe we should increase Zonegran and start to wean Depakote, but I'm also afraid because that drug might be what is keeping the grand mal seizures away. It is so hard to know the right thing to do because there is no science in this and it is all trial and error. We will probably leave the Depakote alone and increase Zonegran at this time, but I will keep those thoughts in my head. The way I see it, if the Depakote is already at a sub therapeutic level and therefore not "protecting" him, why keep him on it? I don't know, I am not a Dr. I did ask the nurse to have Dr. Korol call me tomorrow so we can talk it through and hopefully figure out together the next best course of action. One of the many things I like about Dr. Korol is she always includes us in treatment options and we make a joint decision on what to do.
Seizure Activity
Since I last wrote he had drop seizures the next two days (making 3 days in a row), but we haven't seen any since last Thursday. One of those drops sent his head into the kitchen table in front of my dear friend Amy and her daughter. It left a nasty bruise on his chin where he hit and he cried when it happened so I was worried it would scare Amy's daughter, but it didn't. :-) So, that means no daytime seizures in the last 5 days (today being 5) so we may be getting back on track. He is still having Myos during nap and bed time, but they seem to be stabilizing a little in regards to numbers (around 20 per day), but the violence of them seems to be coming back a bit. When I say "violent" I mean bigger - like the ones that are big enough they wake him up out of a deep sleep. I am keeping an eye on them.
We did get a piece of good news from his blood draw. On May 30th his blood ketones were low (1.4) and when they took his blood last Thursday they were much higher (4.2). The highest we have seen is 6, but we want 4 or higher. That means we are doing some things correctly on the diet - yeah! We still haven't gotten to a 3:1 ratio (can't get him to take in enough fat), but have been hovering around 2.5:1 and 2.7:1 so we are getting there.
In Other News
I was asked today to speak at the opening ceremony on Saturday's NW Epilepsy Foundation walk. I said yes, but now am nervous about speaking to that large of an audience and trying not to cry. They want us to share our story and how epilepsy has affected our lives. I think I will only have a few minutes (like 2-3) to talk so not sure how to condense everything down to that, but will try. I definitely want to talk about Doose Syndrome and bring awareness to everyone as even a lot of people with epilepsy don't know about Doose Syndrome. Please pray that I make it through my time to talk - so nervous!
Good night.
Michelle
P.S. Have to share a quick story. Joshua is so darn cute! Daily I check his urine for his ketone levels and when I do this I follow him to the bathroom and put the stick in his steam and check out the color it turns. He has gotten so used to this now that every time he goes to the bathroom he says "Mom - come check my thing". Then a few days ago he must have figured out the word ketone after hearing us saying it a million times and so now he has started saying "Mom - come check my ketones" every time he goes to the bathroom. I find it hilarious and he amazes me every day at how he deals with all of this.
His Depakote level was 33.8 and it should be between 50-100. His Zonegran level was 9.2 and it should be between 10-20. His Zarontin (the newest med) was at an appropriate level. The day of his blood draw was a bit "off" and we got his blood drawn later than we should have so I started wondering if that could have affected the results. When Dr. Korol called that evening to discuss next steps with me she suggested we increase his Depakote because his levels were so low. My first thought was "No Way - we are on MAD to eventually get rid of the meds, not increase them". I explained the off day we had and she suggested we take his blood again just to be sure we got an accurate reading.
So, last Thursday we had his blood drawn again. Let me just digress here and say that he is such a trooper at blood draws now! He never cries anymore and sits in the chair and puts out his arm. We call it getting his "Joshua juice" taken out of his arm so he has now started saying that. Too funny! Anyway, today I got the results from the blood draw and although they were a bit better, they are still not where Dr. Korol wants them to be.
Depakote - 36.7
Zonegran - 10
I have done some asking on our yahoo support group to find out if the diet can affect med levels and it turns out they can and a lot of kid's levels went down after starting the diet. I also found out that Depakote can actually counter-act the diet because of the way it is metabolized in the blood. I won't go into the technical mumbo jumbo of it, but some kids didn't go seizure free until AFTER Depakote was reduced or weaned. Of course, there are kids that are the opposite and had to have more Depakote - every situation is different (which is frustrating). So, I started thinking maybe we should not increase Depakote and if I take it a step farther maybe we should start decreasing Depakote? It seems counter intuitive to me to increase meds when overall he is having less seizures, but I am not a Dr. I shared a lot of this with the nurse who said she would pass it along to Dr. Korol and then get back to me. Later the nurse called and said Dr. Korol wants to increase his Zonegran. I like that idea better than the Depakote as I have heard that Zonegran actually works with the diet to put you further into ketosis, but I still am hesitant to increase at all when we are having less seizures. But, then again Zonegran was added to help with the Myos and those are the ones we have the most difficulty with so maybe it would be best to increase it? I can't help but wonder if maybe we should increase Zonegran and start to wean Depakote, but I'm also afraid because that drug might be what is keeping the grand mal seizures away. It is so hard to know the right thing to do because there is no science in this and it is all trial and error. We will probably leave the Depakote alone and increase Zonegran at this time, but I will keep those thoughts in my head. The way I see it, if the Depakote is already at a sub therapeutic level and therefore not "protecting" him, why keep him on it? I don't know, I am not a Dr. I did ask the nurse to have Dr. Korol call me tomorrow so we can talk it through and hopefully figure out together the next best course of action. One of the many things I like about Dr. Korol is she always includes us in treatment options and we make a joint decision on what to do.
Seizure Activity
Since I last wrote he had drop seizures the next two days (making 3 days in a row), but we haven't seen any since last Thursday. One of those drops sent his head into the kitchen table in front of my dear friend Amy and her daughter. It left a nasty bruise on his chin where he hit and he cried when it happened so I was worried it would scare Amy's daughter, but it didn't. :-) So, that means no daytime seizures in the last 5 days (today being 5) so we may be getting back on track. He is still having Myos during nap and bed time, but they seem to be stabilizing a little in regards to numbers (around 20 per day), but the violence of them seems to be coming back a bit. When I say "violent" I mean bigger - like the ones that are big enough they wake him up out of a deep sleep. I am keeping an eye on them.
We did get a piece of good news from his blood draw. On May 30th his blood ketones were low (1.4) and when they took his blood last Thursday they were much higher (4.2). The highest we have seen is 6, but we want 4 or higher. That means we are doing some things correctly on the diet - yeah! We still haven't gotten to a 3:1 ratio (can't get him to take in enough fat), but have been hovering around 2.5:1 and 2.7:1 so we are getting there.
In Other News
I was asked today to speak at the opening ceremony on Saturday's NW Epilepsy Foundation walk. I said yes, but now am nervous about speaking to that large of an audience and trying not to cry. They want us to share our story and how epilepsy has affected our lives. I think I will only have a few minutes (like 2-3) to talk so not sure how to condense everything down to that, but will try. I definitely want to talk about Doose Syndrome and bring awareness to everyone as even a lot of people with epilepsy don't know about Doose Syndrome. Please pray that I make it through my time to talk - so nervous!
Good night.
Michelle
P.S. Have to share a quick story. Joshua is so darn cute! Daily I check his urine for his ketone levels and when I do this I follow him to the bathroom and put the stick in his steam and check out the color it turns. He has gotten so used to this now that every time he goes to the bathroom he says "Mom - come check my thing". Then a few days ago he must have figured out the word ketone after hearing us saying it a million times and so now he has started saying "Mom - come check my ketones" every time he goes to the bathroom. I find it hilarious and he amazes me every day at how he deals with all of this.
Tuesday, June 5, 2012
1 Month on MAD
Well, it's official.......we survived the 1st month on MAD! Wow, hard to believe as it feels like we just started, but it also feels like we have been through the war in the last month. :-) We have learned a lot, but I still feel like we have a long way to go as well. We have been tracking everything (fats, proteins, calories, etc.) since Saturday and are doing a better job of staying within the numbers we were given by the Dietitian. Our new Excel spreadsheet seems to be working well and is user friendly for the most part. I have a few questions since our last meeting so have another call into our Dietitian and will hopefully get answers tomorrow.
Joshua has taken a bit of a back slide in the eating department. He is starting to refuse meals again and is not eating too much. I'm hoping it is just a phase and won't last long as he did have two hot dogs for dinner tonight which was great because he had not eaten most of today. I really don't want to go back to where we were when he was sleeping 18 hours a day and not eating.
Joshua's seizures are still hanging on, although I did not expect them to disappear over night and figured it might take a few weeks of the diet tweaking. We were only seeing seizures when he was sleeping so we felt pretty good that the drop seizure he had last Wednesday was an anomaly because he had no nap that day and his meds were late in the morning due to his blood draw. Apparently I spoke too soon because I was telling my sister on the phone tonight that it had been almost a week since we saw his last daytime drop seizure and it must have been due to an "off" day. Not more than 30 minutes later Joshua had a drop seizure while sitting at the island and then about 45 minutes after that he had another one in the bath tub (I think I need to learn NOT to say things like that, might have jinxed it). He had his meds on time today, had a long nap and his ketone levels were high so not sure what to think about it. It is definitely frustrating, but I'm not letting myself get freaked out about it. I know I need to give the diet time to work and to get the kinks worked out so we'll panic maybe in a few weeks or month. If I have learned anything in the last 5 months of dealing with this it is that nothing is a certainty and every day brings with it challenges and that we are living on a constant roller coaster. The part I hate the most is that I can never get comfortable because just when I am about to "bam!" - something hits and I go right back to where we were. It doesn't help that I hate the drop seizures the most so they annoy me more than the "average" seizure. LOL - that was a very strange sentence to read back over - like there is anything "average" about having a seizure. But, in an unfortunate way it has become our reality and is now just part of our everyday lives. His seizure count has been in the mid 20s per day for the last several days which is still better than where we were so I will take some joy in that and continue to hope we will see further reductions.
For some super awesome news - we have raised $3500 to date for the NW Epilepsy Foundation walk! This is amazing and I have been overwhelmed with people's generosity and willingness to donate, join our team and get involved. Team Joshua is currently #1 for the Tacoma teams for the most money raised, but I don't know if we will end up there as I know there are teams who have not input all their money yet. If you have not donated yet, but would like to - please hurry! The walk is on Saturday, June 16th. I ordered our Team Joshua shirts and they will get here this weekend. I cannot wait to finally get out there and "do" something after feeling helpless for so long. I think it will be an amazing day and I am so looking forward to it.
To donate go to: http://www.nwrunwalk.org/faf/home/default.asp?ievent=1015666&lis=1&kntae1015666=7A7AA561E86B48B2A0E7B45856B22FB0
Joshua has taken a bit of a back slide in the eating department. He is starting to refuse meals again and is not eating too much. I'm hoping it is just a phase and won't last long as he did have two hot dogs for dinner tonight which was great because he had not eaten most of today. I really don't want to go back to where we were when he was sleeping 18 hours a day and not eating.
Joshua's seizures are still hanging on, although I did not expect them to disappear over night and figured it might take a few weeks of the diet tweaking. We were only seeing seizures when he was sleeping so we felt pretty good that the drop seizure he had last Wednesday was an anomaly because he had no nap that day and his meds were late in the morning due to his blood draw. Apparently I spoke too soon because I was telling my sister on the phone tonight that it had been almost a week since we saw his last daytime drop seizure and it must have been due to an "off" day. Not more than 30 minutes later Joshua had a drop seizure while sitting at the island and then about 45 minutes after that he had another one in the bath tub (I think I need to learn NOT to say things like that, might have jinxed it). He had his meds on time today, had a long nap and his ketone levels were high so not sure what to think about it. It is definitely frustrating, but I'm not letting myself get freaked out about it. I know I need to give the diet time to work and to get the kinks worked out so we'll panic maybe in a few weeks or month. If I have learned anything in the last 5 months of dealing with this it is that nothing is a certainty and every day brings with it challenges and that we are living on a constant roller coaster. The part I hate the most is that I can never get comfortable because just when I am about to "bam!" - something hits and I go right back to where we were. It doesn't help that I hate the drop seizures the most so they annoy me more than the "average" seizure. LOL - that was a very strange sentence to read back over - like there is anything "average" about having a seizure. But, in an unfortunate way it has become our reality and is now just part of our everyday lives. His seizure count has been in the mid 20s per day for the last several days which is still better than where we were so I will take some joy in that and continue to hope we will see further reductions.
For some super awesome news - we have raised $3500 to date for the NW Epilepsy Foundation walk! This is amazing and I have been overwhelmed with people's generosity and willingness to donate, join our team and get involved. Team Joshua is currently #1 for the Tacoma teams for the most money raised, but I don't know if we will end up there as I know there are teams who have not input all their money yet. If you have not donated yet, but would like to - please hurry! The walk is on Saturday, June 16th. I ordered our Team Joshua shirts and they will get here this weekend. I cannot wait to finally get out there and "do" something after feeling helpless for so long. I think it will be an amazing day and I am so looking forward to it.
To donate go to: http://www.nwrunwalk.org/faf/home/default.asp?ievent=1015666&lis=1&kntae1015666=7A7AA561E86B48B2A0E7B45856B22FB0
Friday, June 1, 2012
Diet Tweaking and 1st day of Preschool
Diet Tweaking:
We met with our dietitian today for a follow-up visit which I was very anxious about because I wanted her to tell me I was doing something wrong that was causing his latest spike in seizures. Although she could not say for sure it was the diet or something else, she did find some things we needed to fix in administering the diet. Thank Goodness!! We have hope again!
After reviewing our food journals from the last two weeks she discovered that Joshua is getting too many calories and too much protein and that causes his ratio to be lower. By ratio I mean we want him at a 3:1 ratio which means three times as much fat as carbs + protein. While his carb numbers were good, his protein was too high so that means his ratio was off. And, although you do not have to restrict your calories on MAD (like on Keto) we do have a calorie goal and he was way above it and that can also cause you to have seizures. So, we will now be monitoring and tracking his protein, calories, fat, and carbs for everything he puts in his mouth to try to stay within our daily allotments (we were only tracking carbs before). She is restricting his hot dogs to two per day as he was getting too many calories and protein from them and reducing his goal of two KetoCals per day to 1 (which is a relief as we could never get him to drink 2). She also switched part of his fat from coconut oil to butter because we haven't been successful in getting much of the oil into him so now we have a goal of 30 grams of butter per day. Anyway, I created an Excel spreadsheet to track everything so we start tomorrow and will see if it impacts him in a positive way (I sure hope so).
Joshua's blood was drawn earlier this week in anticipation of today's appointment and we have some good news. His metabolic panel was all good and his acid levels have gone back to where they need to be. Last time he was acidotic so we have been giving him 1 caffeine-free diet pop per day with baking soda in it. We also have to give him 1/8 tsp. of salt by the end of each day as those two things help to fight off the extra acid in his blood. She said both are working so we are to keep doing that. Yeah! She said his levels all looked good so we don't need to take them again for 3 months. The bad news was that his blood ketones have gone down since our last blood draw (he was at 6 before, now at 1.4). He is still in ketosis, but not to the level we want (4 or higher) so we have work to do there. The blood ketone levels are more reliable than the urine ones I do at home so it is good to know what the blood level says. We have work to do for improvement in this area so that gives me hope we can still get to seizure freedom on MAD.
After today's meeting with the dietitian, the planned tweaking we are going to do and the help/suggestions/guidance from my online support group I am feeling much better tonight. I have hope again that we will get there, but it just may take some time and some tweaking. I have to remember not to beat myself and understand this diet is going to be a marathon and there will be ups and downs. It was just so hard not to get excited when his seizures dropped so dramatically.
I am attaching a link for a great article regarding the Ketogenic Diet. It was written in 2010 by a parent of a child on it and it was published in the NY Times. To date is the best article I have read on the diet and explains it very well. Although we are not on the Keto diet, MAD is very similar and it will give you a good feel for what the diet entails for us. I think everyone should read it and pass on the information as it has the ability to help so many other people.
http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html
Preschool:
Today was Joshua's first day of developmental preschool and he did great. I figured he would be scared with it being a new school and all new people and thought he may cry. He was a little clingy to us for the first few minutes, but then began exploring the classroom by himself. When it was time for us to go, he gave us a hug and was fine. What a big boy! And, I didn't cry either. He He. :-)
We had already met his teacher (and she is great), but this morning we got to meet the teacher aides in his classroom as well and they were all very nice. They sat Joshua next to a kid named Blake and by the end of the day the teacher said they were BFFs. :-) We also got to meet the school nurse as we had to drop off Joshua's diastat (rescue medicine in case of a grand mal seizure). I feel comfortable as they have several other children at the school with seizures and emergency rescue plans as well. If he has a big seizure there, they will know what to do.
When we picked him up he said he had fun. He got to play with play-doh, play on the computer and have snack (his words). He didn't eat all of his packed snack, but most of it and his teacher said it wasn't an issue. We took his helmet to school for the playground, but since it was raining they did not venture outside so no wearing his helmet today.
I am relieved that it went well and that we got over the "1st day" hurdle. He has been at his daycare for so long that I really thought the transition would be harder on him, but he is such a trooper! We go back Monday and I think he will be looking forward to it. He looked so darn cute wearing his backpack and carrying his lunch pail just like a big kid. :-)
That is it for today. Goodnight!
We met with our dietitian today for a follow-up visit which I was very anxious about because I wanted her to tell me I was doing something wrong that was causing his latest spike in seizures. Although she could not say for sure it was the diet or something else, she did find some things we needed to fix in administering the diet. Thank Goodness!! We have hope again!
After reviewing our food journals from the last two weeks she discovered that Joshua is getting too many calories and too much protein and that causes his ratio to be lower. By ratio I mean we want him at a 3:1 ratio which means three times as much fat as carbs + protein. While his carb numbers were good, his protein was too high so that means his ratio was off. And, although you do not have to restrict your calories on MAD (like on Keto) we do have a calorie goal and he was way above it and that can also cause you to have seizures. So, we will now be monitoring and tracking his protein, calories, fat, and carbs for everything he puts in his mouth to try to stay within our daily allotments (we were only tracking carbs before). She is restricting his hot dogs to two per day as he was getting too many calories and protein from them and reducing his goal of two KetoCals per day to 1 (which is a relief as we could never get him to drink 2). She also switched part of his fat from coconut oil to butter because we haven't been successful in getting much of the oil into him so now we have a goal of 30 grams of butter per day. Anyway, I created an Excel spreadsheet to track everything so we start tomorrow and will see if it impacts him in a positive way (I sure hope so).
Joshua's blood was drawn earlier this week in anticipation of today's appointment and we have some good news. His metabolic panel was all good and his acid levels have gone back to where they need to be. Last time he was acidotic so we have been giving him 1 caffeine-free diet pop per day with baking soda in it. We also have to give him 1/8 tsp. of salt by the end of each day as those two things help to fight off the extra acid in his blood. She said both are working so we are to keep doing that. Yeah! She said his levels all looked good so we don't need to take them again for 3 months. The bad news was that his blood ketones have gone down since our last blood draw (he was at 6 before, now at 1.4). He is still in ketosis, but not to the level we want (4 or higher) so we have work to do there. The blood ketone levels are more reliable than the urine ones I do at home so it is good to know what the blood level says. We have work to do for improvement in this area so that gives me hope we can still get to seizure freedom on MAD.
After today's meeting with the dietitian, the planned tweaking we are going to do and the help/suggestions/guidance from my online support group I am feeling much better tonight. I have hope again that we will get there, but it just may take some time and some tweaking. I have to remember not to beat myself and understand this diet is going to be a marathon and there will be ups and downs. It was just so hard not to get excited when his seizures dropped so dramatically.
I am attaching a link for a great article regarding the Ketogenic Diet. It was written in 2010 by a parent of a child on it and it was published in the NY Times. To date is the best article I have read on the diet and explains it very well. Although we are not on the Keto diet, MAD is very similar and it will give you a good feel for what the diet entails for us. I think everyone should read it and pass on the information as it has the ability to help so many other people.
http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html
Preschool:
Today was Joshua's first day of developmental preschool and he did great. I figured he would be scared with it being a new school and all new people and thought he may cry. He was a little clingy to us for the first few minutes, but then began exploring the classroom by himself. When it was time for us to go, he gave us a hug and was fine. What a big boy! And, I didn't cry either. He He. :-)
We had already met his teacher (and she is great), but this morning we got to meet the teacher aides in his classroom as well and they were all very nice. They sat Joshua next to a kid named Blake and by the end of the day the teacher said they were BFFs. :-) We also got to meet the school nurse as we had to drop off Joshua's diastat (rescue medicine in case of a grand mal seizure). I feel comfortable as they have several other children at the school with seizures and emergency rescue plans as well. If he has a big seizure there, they will know what to do.
When we picked him up he said he had fun. He got to play with play-doh, play on the computer and have snack (his words). He didn't eat all of his packed snack, but most of it and his teacher said it wasn't an issue. We took his helmet to school for the playground, but since it was raining they did not venture outside so no wearing his helmet today.
I am relieved that it went well and that we got over the "1st day" hurdle. He has been at his daycare for so long that I really thought the transition would be harder on him, but he is such a trooper! We go back Monday and I think he will be looking forward to it. He looked so darn cute wearing his backpack and carrying his lunch pail just like a big kid. :-)
That is it for today. Goodnight!
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