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
Thursday, April 26, 2012
Saturday, April 21, 2012
A Couple Updates
Just a quick update on a few things.
1) Our 2nd appt. with the neuro psychologist was supposed to be yesterday morning, but it was cancelled by the Dr. because he got sick. We will now try to see if we can get him in next week to finish the testing.
2) Our appt. with the Dietician has been scheduled for May 1st. We should be able to start MAD very shortly after that appt. so it will be very soon.
3) So far things are going well on Zaranotin. We have not seen any side effects yet, but then again it's only been a few days. He does not like the taste of it, but takes it without putting up too much of a fight (luckily it is only a small dose right now).
4) Joshua is now on the waiting list for Physical Therpay and Occupational Therapy at Children at Play in Sumner. There are about 5 kids in front of him on the waiting list so hopefully it won't be too long, but we'll see. I am also going to put him on the waiting list at Good Sam Children's Therapy Unit (CTU) just to see if they call first, but I doubt it as they said it was about a 4 month waiting list. I am going to have him take speech at Mary Bridge as they had the shortest waiting list for speech at 1.5 months and the place in Sumner does not provide speech therapy. I was hoping to get him into the therapies for the summer while he is not in school, but we will see.
5) Seizure activity still remains about the same. We see daily absence (stares), Myoclonic (jerks and spasms) and Atonic (head drops). I continue to track them, but there doesn't seem to be a real pattern to them. He had a really big cluster of Myoclonic seizures last night when he went to bed that I thought was never going to end, but it finally did. It is hard to hold him and watch him having that many seizures (34) and know that there is nothing I can do about it. The persistent of the seizures in Doose kids is amazing and I can't wrap my head around the fact that he is on 3 anti-seizure meds and he still has so many seizures every day. I am really hoping MAD will work as I read some pretty bleak statistics last night of the chances of medications working after the first 3 have failed.
On a side note, Cole had 3 teeth pulled on Thursday by the Dentist and he is now doing well so glad that is done and over with. And, our dryer broke so we bought a new washer/dryer and when they tried to install it today the faulty valve broke off. We currently have a plumber at our house trying to fix - wonder how much this is going to set me back???
1) Our 2nd appt. with the neuro psychologist was supposed to be yesterday morning, but it was cancelled by the Dr. because he got sick. We will now try to see if we can get him in next week to finish the testing.
2) Our appt. with the Dietician has been scheduled for May 1st. We should be able to start MAD very shortly after that appt. so it will be very soon.
3) So far things are going well on Zaranotin. We have not seen any side effects yet, but then again it's only been a few days. He does not like the taste of it, but takes it without putting up too much of a fight (luckily it is only a small dose right now).
4) Joshua is now on the waiting list for Physical Therpay and Occupational Therapy at Children at Play in Sumner. There are about 5 kids in front of him on the waiting list so hopefully it won't be too long, but we'll see. I am also going to put him on the waiting list at Good Sam Children's Therapy Unit (CTU) just to see if they call first, but I doubt it as they said it was about a 4 month waiting list. I am going to have him take speech at Mary Bridge as they had the shortest waiting list for speech at 1.5 months and the place in Sumner does not provide speech therapy. I was hoping to get him into the therapies for the summer while he is not in school, but we will see.
5) Seizure activity still remains about the same. We see daily absence (stares), Myoclonic (jerks and spasms) and Atonic (head drops). I continue to track them, but there doesn't seem to be a real pattern to them. He had a really big cluster of Myoclonic seizures last night when he went to bed that I thought was never going to end, but it finally did. It is hard to hold him and watch him having that many seizures (34) and know that there is nothing I can do about it. The persistent of the seizures in Doose kids is amazing and I can't wrap my head around the fact that he is on 3 anti-seizure meds and he still has so many seizures every day. I am really hoping MAD will work as I read some pretty bleak statistics last night of the chances of medications working after the first 3 have failed.
On a side note, Cole had 3 teeth pulled on Thursday by the Dentist and he is now doing well so glad that is done and over with. And, our dryer broke so we bought a new washer/dryer and when they tried to install it today the faulty valve broke off. We currently have a plumber at our house trying to fix - wonder how much this is going to set me back???
Tuesday, April 17, 2012
Video EEG Results and Go Forwad Plan
Today we met with our neurologist to get results from Joshua's 48 hour Video EEG from last week. We received a bit of good news today in that Joshua's myoclonic seizures stop after he gets into REM sleep and he sleeps soundly the rest of the night. Our neurologist was worried that he was having abnormal brain activity (e.g. "discharges") all night while sleeping, but she said after REM sleep his EEG was clear. So, he is getting good sleep at night! Yeah!
On the not as good side she said that some of the discharges on the EEG were not correlating to any clinical activity that we could see which means that he is having some seizures that we cannot see, although I am not surprised by that based on his other two EEGs. We don't know yet if we will ever get these abnormal discharges (without us seeing something) to stop, but it is too early to worry about that now - we are concentrating right now on the ones we DO see.
I talked to her about his seizure reduction after we got home from the hospital last week and initially she didn't think it was caused by the Depakote bolis he received through the IV in the hospital because she said those only last about 8 hours. But then by the end of our conversation she started thinking it might be possible, but she's not sure (it could have just been a coincidence). In the end we decided to leave his Depakote dose the same for now because I don't want to endure the side effects if we are not for sure it will help. Plus, we are making other changes so don't want to do too much at once.
We are going to add a med called Zarontin to our regimen so he will be on 3 anti-seizure meds starting tomorrow. Not sure what the side effects of adding this one into the mix will be, but it is worth a shot. The neurologist is adding this to help with his absence (staring) seizures as they are becoming longer and longer. The absence seizures becoming longer concerns her because she does not want these absence seizures turning into a "status" episode which is a prolonged seizure that can last hours to days and they can be very dangerous. She thinks this new med might help with the absences, but we'll see.
The other thing we decided is that we ARE going to go ahead with MAD (Modified Atkins Diet). Yeah - feels good to have a plan! The dietitian is going to call me to setup an appt. and then we will get started. I'm really nervous, but also hopeful and excited that this could be our secret weapon that brings his seizures under control. Chip and I are preparing for the big change and are already starting now to change some little things. We could be on MAD within a few weeks.
Another bit of good news (if you can call it that) is that I found a great website to track his seizures last night. It is great and does everything I want and creates reports that you can print or send to the doctors and it's free! I'm busily updating all my old calendars into this new tool, but it will take me awhile. I put all his seizures in there today and I'm liking it already. Bad news is that he had an Atonic head drop this morning and unfortunately he was standing in front of the kitchen table and smacked his head pretty good on the table. He now has a mark below his right eye to remind us that we can never be too careful. It might be time to try again to get him to wear his helmet, although he really hates it! I hate the head drops - they just come out of nowhere and if he is near anything hard, he gets injured. He's such a trooper though - a few minutes later he told me "put me down. Can I play angry birds?". LOL.
On an unrelated note my debit card has been hacked! Got a call this morning about fraudulent activity on my card so we cancelled them. When it rains, it pours....................
On the not as good side she said that some of the discharges on the EEG were not correlating to any clinical activity that we could see which means that he is having some seizures that we cannot see, although I am not surprised by that based on his other two EEGs. We don't know yet if we will ever get these abnormal discharges (without us seeing something) to stop, but it is too early to worry about that now - we are concentrating right now on the ones we DO see.
I talked to her about his seizure reduction after we got home from the hospital last week and initially she didn't think it was caused by the Depakote bolis he received through the IV in the hospital because she said those only last about 8 hours. But then by the end of our conversation she started thinking it might be possible, but she's not sure (it could have just been a coincidence). In the end we decided to leave his Depakote dose the same for now because I don't want to endure the side effects if we are not for sure it will help. Plus, we are making other changes so don't want to do too much at once.
We are going to add a med called Zarontin to our regimen so he will be on 3 anti-seizure meds starting tomorrow. Not sure what the side effects of adding this one into the mix will be, but it is worth a shot. The neurologist is adding this to help with his absence (staring) seizures as they are becoming longer and longer. The absence seizures becoming longer concerns her because she does not want these absence seizures turning into a "status" episode which is a prolonged seizure that can last hours to days and they can be very dangerous. She thinks this new med might help with the absences, but we'll see.
The other thing we decided is that we ARE going to go ahead with MAD (Modified Atkins Diet). Yeah - feels good to have a plan! The dietitian is going to call me to setup an appt. and then we will get started. I'm really nervous, but also hopeful and excited that this could be our secret weapon that brings his seizures under control. Chip and I are preparing for the big change and are already starting now to change some little things. We could be on MAD within a few weeks.
Another bit of good news (if you can call it that) is that I found a great website to track his seizures last night. It is great and does everything I want and creates reports that you can print or send to the doctors and it's free! I'm busily updating all my old calendars into this new tool, but it will take me awhile. I put all his seizures in there today and I'm liking it already. Bad news is that he had an Atonic head drop this morning and unfortunately he was standing in front of the kitchen table and smacked his head pretty good on the table. He now has a mark below his right eye to remind us that we can never be too careful. It might be time to try again to get him to wear his helmet, although he really hates it! I hate the head drops - they just come out of nowhere and if he is near anything hard, he gets injured. He's such a trooper though - a few minutes later he told me "put me down. Can I play angry birds?". LOL.
On an unrelated note my debit card has been hacked! Got a call this morning about fraudulent activity on my card so we cancelled them. When it rains, it pours....................
Monday, April 16, 2012
Frustrating Day
Today Joshua had an appt. with a neuro psychologist to get testing done so we can capture his baseline cognitive functioning. This baseline will enable us to test him later (6 mos., 12 mos., etc.) from now to determine if he has regressed in his cognitive functioning. The appt. was scheduled from 8:30-2:00 so I took the whole day off work on FMLA, which means unpaid. We get there and go over the history of why we are there which took well over an hour. Joshua was good about playing with the toys while we were in the office during this time. Then it was time to start testing. I stayed in the room with the Dr. and Chip and went to the waiting room. Joshua did good for the first few questions, but then grew tired of answering them (I think he was frustrated because he couldn't answer some of the correctly). He asked for his Daddy and began to be uncooperative. So, I stepped out of the room and Chip went in with him. About 15 minutes later Joshua and Chip returned for a "break" and Chip told me that Joshua was not cooperating much. Sigh. We go back in after a break and we all go in this time. Joshua is still uncooperative and won't answer the Dr.'s questions. Big Sigh - need this assessment done and he won't cooperate and it is now looking like more days off from work will be needed as it is not looking good to finish today. The Dr. suggests a "lunch" break even though it is only 10:30 to see if that will help. So, we go out for a bit and get him some food and come back to the Dr.'s office. We all go in again to see if he will cooperate. He is more cooperative this time and does some of the test (games) with the Dr., but is still uncooperative at times. We gave him frequent breaks, but were only about to accomplish 1/2 of the total tests that the Dr. needs to complete his baseline evaluation. So, we need to go back for a 2nd appt. to get the tests completed. Chip will be taking him back this Friday morning at 9:00 AM - I will be at work. Hopefully they will be able to get through the rest of the tests on Friday and we won't need a 3rd appt. The Dr.'s report will take about 10 business days after testing is complete and then Chip and I will meet with Dr. to get the results of the test.
This afternoon I tried to call around to get Joshua on the waiting lists for physical, occupational and speech therapy and that proved to be frustrating. A lot of places had no one I could talk to (leave a message - someone will call you back), passing me around from person to the next, etc. I've left messages at some of these places before and never received responses. I finally did talk to someone at Mary Bridge and the waiting list for physical/occupational therapy there is 3-4 months and speech is about a month and 1/2. The speech wouldn't be too bad, but I'm waiting for other places to call me back so I know who has the shortest waiting list and I'll get him on those ones.
I also called Sweedish Hospital to try to inquire about their Keto program and how long their waiting list and I got tossed around from one person to the next who knew nothing of what I was talking about even though it was on their website and I called the number listed. After explaining myself several times over to different people and getting routed around I finally talked to someone who knew what the Keto program was. Their waiting list is not as long as I thought it would be - they could get us in as early as May 21st (I've heard it can be several months). It also sounded like they had lots of openings further out so if we started later like July or August or something it sounded like it would not be an issue. I was too annoyed to call Seattle Children's hospital to check on their waiting list so that will have to wait for another day.
My frustrations also grew out of his seizure activity today and yesterday. I mentioned in my last post that we had seen his seizures reduce since getting out of the hospital and I was starting to get my hopes up that maybe the meds were finally working. Well, the seizures came back yesterday afternoon as we saw all of them again - Atonic (head drops), Myoclonics (jerking or spasms) and absence (stares). Although we always see them every day and are used ot it now it hits you harder when you haven't seen them for a few days as you begin to get your hopes up that "maybe this is it" and then your hopes get crushed right before your eyes. His seizures have continued into today and so we seem to be back into normal seizure mode. I am wondering if that Depakote Bolis they gave him in the hospital through the IV is responsible for the reduction so I am very anxious for our EEG results tomorrow with Dr. Korol. I don't know if it was that was a fluke or coincidence and I want to be sure it was that extra med that did it before I increase his meds anymore as we have enough side effects and I don't want anymore unless it is really going to help.
And, he still has glue in his hair! I know this sounds trivial, but I have not been able to get all the glue out of his hair from the EEG. One of the Moms told me to try olive oil which I did last night and I thought I got it all, but today I noticed several spots where he still has glue. It was so hard to get it out last night and he was so upset so I hate the thought of having to do more to him to get the rest of it out (it is painful for him for me to try to comb it out of his hair as it is stuck to his scalp). ARGH.
Some days are better than others and I guess this is just not one of the good ones. I just want to protect him from all of this.
This afternoon I tried to call around to get Joshua on the waiting lists for physical, occupational and speech therapy and that proved to be frustrating. A lot of places had no one I could talk to (leave a message - someone will call you back), passing me around from person to the next, etc. I've left messages at some of these places before and never received responses. I finally did talk to someone at Mary Bridge and the waiting list for physical/occupational therapy there is 3-4 months and speech is about a month and 1/2. The speech wouldn't be too bad, but I'm waiting for other places to call me back so I know who has the shortest waiting list and I'll get him on those ones.
I also called Sweedish Hospital to try to inquire about their Keto program and how long their waiting list and I got tossed around from one person to the next who knew nothing of what I was talking about even though it was on their website and I called the number listed. After explaining myself several times over to different people and getting routed around I finally talked to someone who knew what the Keto program was. Their waiting list is not as long as I thought it would be - they could get us in as early as May 21st (I've heard it can be several months). It also sounded like they had lots of openings further out so if we started later like July or August or something it sounded like it would not be an issue. I was too annoyed to call Seattle Children's hospital to check on their waiting list so that will have to wait for another day.
My frustrations also grew out of his seizure activity today and yesterday. I mentioned in my last post that we had seen his seizures reduce since getting out of the hospital and I was starting to get my hopes up that maybe the meds were finally working. Well, the seizures came back yesterday afternoon as we saw all of them again - Atonic (head drops), Myoclonics (jerking or spasms) and absence (stares). Although we always see them every day and are used ot it now it hits you harder when you haven't seen them for a few days as you begin to get your hopes up that "maybe this is it" and then your hopes get crushed right before your eyes. His seizures have continued into today and so we seem to be back into normal seizure mode. I am wondering if that Depakote Bolis they gave him in the hospital through the IV is responsible for the reduction so I am very anxious for our EEG results tomorrow with Dr. Korol. I don't know if it was that was a fluke or coincidence and I want to be sure it was that extra med that did it before I increase his meds anymore as we have enough side effects and I don't want anymore unless it is really going to help.
And, he still has glue in his hair! I know this sounds trivial, but I have not been able to get all the glue out of his hair from the EEG. One of the Moms told me to try olive oil which I did last night and I thought I got it all, but today I noticed several spots where he still has glue. It was so hard to get it out last night and he was so upset so I hate the thought of having to do more to him to get the rest of it out (it is painful for him for me to try to comb it out of his hair as it is stuck to his scalp). ARGH.
Some days are better than others and I guess this is just not one of the good ones. I just want to protect him from all of this.
Saturday, April 14, 2012
Ketogenic Diet or Modified Atkins Diet?
So, the research I have done and read about points to a diet called the Ketogenic Diet (Keto) being the most successful in stopping seizures in Doose kids. A lot of doctors use this as a 2nd or 3rd line treatment, but the other parents I have talked to on my yahoo support group say this should be a 1st line treatment and not to wait long to get it started. The results on this diet vary from kids who obtained total seizure freedom to seeing seizure reduction to seeing no change, however it seems that most of the parents I have talked to have at least seen SOME improvement. So, that is the good news.
The bad news is that the Keto diet is HIGHLY restrictive and requires the child to be medically monitored and have an entire Keto medical team that treats the child (and family). The diet is high fat - usually you get the child to a 4:1 ratio which means the child has 4 times as much fat in their meal than carbs or protein. So, if you were eating something that was 100 calories, 80 calories would need to come from fat. Everything on the diet is weighed to the gram and every meal has to have a specific balance in order to keep the child in a ketosis state which is what they think keeps the seizures at bay. If the child eats or drinks more or less than they are supposed to, then they can have breakthrough seizures. Items that children usually eat every day on the Keto diet are oil, butter, heavy whipping cream - everything is about getting the highest possible fat content. In addition to the ratio, you are also restricted on calories so if your child is still hungry you cannot given them more food. The diet is a huge committent (usually have to be on it for 2 years). Here are some things I have found out about the diet in my research and talking to others.
Well, it is similar to Keto, but less restrictive. The ratio is lower (like 2:1 instead of 4:1) and you do not have calorie restrictions. You do not have to be hospitalized to start, but you do have to be medically monitored and still have a Dietician to work with to be trained on the diet and to help make adjustments. This is different than typical Atkins - instead of high protein it is high fat. You still have to eat things like oil, butter, heavy whipping cream, mayonaise, etc. and you are only allowed 10g of carbs per day and do NOT get to add in more over time like traditional Atkins. You still have to be tested prior to starting to ensure the child is healthy and we would still need to be trained by the Dietician on the diet. You still have to test the urine for ketones, have blood draws and take vitamin supplements. We would still have to prepare all his food and take with us as he would not be able to eat food at restaurants or other people's houses or daycare.
After hearing about MAD and reading about it, we think we are going to try MAD first and if it does not work or we only get partial seizure control than we may move to Keto after that. We think it will give us a good introduction to this new diet life and it will allow us to see how Joshua will tolerate the diet because if he can't tolerate MAD he certainly won't tolerate Keto. So, what is success rate with MAD? I had one Mom tell me that her child has been seizure free on MAD for the last 9 months and they were weaning him off of his last med. I had another parent tell me they saw reductions on MAD, but not total reduction so moved to Keto after 6 months and then got seizure free. She thought MAD was a good way to start this out.
We are going to talk more to the neurologist about the diets on Tuesday when we go in to get the results of his EEG, but this is the direction we think we are going to head in.
P.S. Seizure activity has been really reduced the last few days. He has not had a head drop since Tuesday night and his Myoclonics seem to be reducing. I'm not getting my hopes up too high as we have had his drops disappear before only to come back later, but I don't think his Myoclonics have ever been this low. I'm not sure what to think about it - we'll see if it continues and if it does we will discuss with the neurologist what it means. As I understand a lot of the Doose kids do this - have some good days and then have bad days (you just never know).
The bad news is that the Keto diet is HIGHLY restrictive and requires the child to be medically monitored and have an entire Keto medical team that treats the child (and family). The diet is high fat - usually you get the child to a 4:1 ratio which means the child has 4 times as much fat in their meal than carbs or protein. So, if you were eating something that was 100 calories, 80 calories would need to come from fat. Everything on the diet is weighed to the gram and every meal has to have a specific balance in order to keep the child in a ketosis state which is what they think keeps the seizures at bay. If the child eats or drinks more or less than they are supposed to, then they can have breakthrough seizures. Items that children usually eat every day on the Keto diet are oil, butter, heavy whipping cream - everything is about getting the highest possible fat content. In addition to the ratio, you are also restricted on calories so if your child is still hungry you cannot given them more food. The diet is a huge committent (usually have to be on it for 2 years). Here are some things I have found out about the diet in my research and talking to others.
- Before you start the diet you have to have a battery of tests run to ensure you are healthy enough to start as the diet is very hard on the body.
- In order to start the diet you have to be hospitalized for 4-5 days and monitored by the Keto team. They starve (fast) the child for the first 24 hours and then start giving them Keto foods.
- Most kids get sick when they start the diet (vomiting, diahhrea, dehydrated, etc).
- The parents get intensive training from the Keto team during the hospital stay and continue to work with that team to make adjustments to the diet after being released.
- You have to test the child's urine regularly (not sure how often) to test for their ketone level and then make adjustments to the diet based on the level.
- You have to have frequent blood draws to ensure the child is staying healthy on the diet.
- The child has to take many supplements because the diet is so restrictive they don't get many of the nutrients they need.
- You have to change the child's medications if any of them are liquid and mixed with a sugary substance.
- You have to change the child's toothpaste and I've even heard their soap
- You have to eat EVERYTHING on your plate at every meal - you cannot leave anything or your ratio will be "off".
- He can never eat at a restaurant or school or someone's house, etc. - we will have to prepare all his foods and take them with us or send them with him wherever he goes.
- Not all hospitals have Keto teams (Mary Bridge Children's hospital does not) and some have long waiting lists (months) to get in. If we do this, I will have to be referred to Seattle Children's or Swedish as they both have Keto teams. I haven't called to find out the wait times for these two places yet.
- Some kids bodies cannot tolerate the high fat diet and/or they refuse to eat the foods. In those cases, the kids have to be removed from the diet.
Well, it is similar to Keto, but less restrictive. The ratio is lower (like 2:1 instead of 4:1) and you do not have calorie restrictions. You do not have to be hospitalized to start, but you do have to be medically monitored and still have a Dietician to work with to be trained on the diet and to help make adjustments. This is different than typical Atkins - instead of high protein it is high fat. You still have to eat things like oil, butter, heavy whipping cream, mayonaise, etc. and you are only allowed 10g of carbs per day and do NOT get to add in more over time like traditional Atkins. You still have to be tested prior to starting to ensure the child is healthy and we would still need to be trained by the Dietician on the diet. You still have to test the urine for ketones, have blood draws and take vitamin supplements. We would still have to prepare all his food and take with us as he would not be able to eat food at restaurants or other people's houses or daycare.
After hearing about MAD and reading about it, we think we are going to try MAD first and if it does not work or we only get partial seizure control than we may move to Keto after that. We think it will give us a good introduction to this new diet life and it will allow us to see how Joshua will tolerate the diet because if he can't tolerate MAD he certainly won't tolerate Keto. So, what is success rate with MAD? I had one Mom tell me that her child has been seizure free on MAD for the last 9 months and they were weaning him off of his last med. I had another parent tell me they saw reductions on MAD, but not total reduction so moved to Keto after 6 months and then got seizure free. She thought MAD was a good way to start this out.
We are going to talk more to the neurologist about the diets on Tuesday when we go in to get the results of his EEG, but this is the direction we think we are going to head in.
P.S. Seizure activity has been really reduced the last few days. He has not had a head drop since Tuesday night and his Myoclonics seem to be reducing. I'm not getting my hopes up too high as we have had his drops disappear before only to come back later, but I don't think his Myoclonics have ever been this low. I'm not sure what to think about it - we'll see if it continues and if it does we will discuss with the neurologist what it means. As I understand a lot of the Doose kids do this - have some good days and then have bad days (you just never know).
Wednesday, April 11, 2012
48 Hour Video EEG in Hospital
We are currently in the hospital for a 48 hour VEEG (Video EEG). The time sitting here in the hospital allowed me to put this blog together. The purpose of the VEEG is to get a longer term EEG while he is awake and asleep and to video him so they can not only see his EEG patterns, but also what his seizures look like on him when they happen. A parent has to be with him at all times to record all of his seizure activity. If he has a seizure you hit a button, talk out loud regarding the type of seizure he had and then write it down on a sheet of paper. After a few times, you get it down to a science! He had a lot of seizures while he was here so they will have a lot to look at when they review it. He had Absence (staring), Myoclonic and Atonic (drop) seizures all while he was here. We used up two log sheets (front and back) recording his seizures. At one point I counted 22 in 30 minutes (while he was sleeping).
For these long EEGs they glue the electrodes to your head and it is a long process to get hooked up (1 hour). However, unlike the other EEGs he was pretty cooperative and we did not have to hold him down or restrain him. We distracted him and he allowed the technicians to do what they needed to in order to get him hooked up. I was relieved because I thought this process was going to be VERY painful for all of us. Once you are hooked up you have to carry around a backpack that contains the device that is hooked up to the electrodes. This has to be with him every second! Most of the time he wore it like a backpack and we called it his "jet pack" like the Lego guys have that his brother plays with. He thought that was cool, but told me "I can't fly though". So, we got used to carrying his "jet pack" with us everywhere while we were here. He was not allowed to leave his room, but could go anywhere in the room and he had a bathroom in his room to use. The whole process was better than I imagined! He tolerated everything really well and only started complaining and itching his head last night. My dude is a trooper! Attached are several pictures of him during the EEG from hooking up to being in the room to being disconnected.
While he was here in the hospital they checked his level of Depakote again and for the first time since we started he was at a therapeutic level. They want it between 50-100 and he was at 69. The good news is that we know he is up to a good level on Depakote - the bad news is that he is still having seizures while at this level. Dr. Korol wanted to see if increasing his Depakote would help at all so she gave him an IV of Depakote (380 mg) yesterday so she could compare his EEG from the first day to the 2nd day to see if there was any improvement. Since we were here it was a safe environment to check in and allowed her to see on the EEG how it would affect him. The reason is that we do not want to raise his Depakote dose any higher if it is not going to affect his seizures in a positive way. We don't have the EEG results back yet, but I can tell you his seizure activity did NOT decline. In fact, he had more drop seizures yesterday (4) than the day before (3) and continued to have absence and Myoclonic seizures. I don't have a lot of faith that she will see any improvement on the EEG with the extra Depakote and if that is the case, we will not raise his levels. He already experiences side effects from the Depakote as it is so we don't want to increase it if there is no benefit to it.
While here we got a visit from 3 pitchers from the Tacoma Rainiers (Seattle Mariners AAA team). They were great with him and he had a lot of fun. He got his picture taken with them and they put it up on the Tacoma Rainiers facebook page. Our little Joshua is famous! Check out the pic!
We will be leaving here in a couple hours and are so looking forward to going home and sleeping in our own beds. We will get the EEG results next Tuesday (April 17th) when we meet with Dr. Korol again. At that time we will talk about next steps and what to try next. Chip and I already have an idea of where we want to head next with his treatment, but we'll cross that bridge next week.
P.S. A big huge shout out and thank-you to my Mom who came to the hospital both evenings to keep me company after Chip left to get Cole from school. Mom kept me company and helped to keep me from going insane. She also made Joshua the COOLEST cape - it say "Brain Defender". How true - that is what we are doing (defending Joshua's brain from these horrible seizures). It may be a LONG battle, but we ARE going to win!!!!
For these long EEGs they glue the electrodes to your head and it is a long process to get hooked up (1 hour). However, unlike the other EEGs he was pretty cooperative and we did not have to hold him down or restrain him. We distracted him and he allowed the technicians to do what they needed to in order to get him hooked up. I was relieved because I thought this process was going to be VERY painful for all of us. Once you are hooked up you have to carry around a backpack that contains the device that is hooked up to the electrodes. This has to be with him every second! Most of the time he wore it like a backpack and we called it his "jet pack" like the Lego guys have that his brother plays with. He thought that was cool, but told me "I can't fly though". So, we got used to carrying his "jet pack" with us everywhere while we were here. He was not allowed to leave his room, but could go anywhere in the room and he had a bathroom in his room to use. The whole process was better than I imagined! He tolerated everything really well and only started complaining and itching his head last night. My dude is a trooper! Attached are several pictures of him during the EEG from hooking up to being in the room to being disconnected.
While he was here in the hospital they checked his level of Depakote again and for the first time since we started he was at a therapeutic level. They want it between 50-100 and he was at 69. The good news is that we know he is up to a good level on Depakote - the bad news is that he is still having seizures while at this level. Dr. Korol wanted to see if increasing his Depakote would help at all so she gave him an IV of Depakote (380 mg) yesterday so she could compare his EEG from the first day to the 2nd day to see if there was any improvement. Since we were here it was a safe environment to check in and allowed her to see on the EEG how it would affect him. The reason is that we do not want to raise his Depakote dose any higher if it is not going to affect his seizures in a positive way. We don't have the EEG results back yet, but I can tell you his seizure activity did NOT decline. In fact, he had more drop seizures yesterday (4) than the day before (3) and continued to have absence and Myoclonic seizures. I don't have a lot of faith that she will see any improvement on the EEG with the extra Depakote and if that is the case, we will not raise his levels. He already experiences side effects from the Depakote as it is so we don't want to increase it if there is no benefit to it.
While here we got a visit from 3 pitchers from the Tacoma Rainiers (Seattle Mariners AAA team). They were great with him and he had a lot of fun. He got his picture taken with them and they put it up on the Tacoma Rainiers facebook page. Our little Joshua is famous! Check out the pic!
We will be leaving here in a couple hours and are so looking forward to going home and sleeping in our own beds. We will get the EEG results next Tuesday (April 17th) when we meet with Dr. Korol again. At that time we will talk about next steps and what to try next. Chip and I already have an idea of where we want to head next with his treatment, but we'll cross that bridge next week.
P.S. A big huge shout out and thank-you to my Mom who came to the hospital both evenings to keep me company after Chip left to get Cole from school. Mom kept me company and helped to keep me from going insane. She also made Joshua the COOLEST cape - it say "Brain Defender". How true - that is what we are doing (defending Joshua's brain from these horrible seizures). It may be a LONG battle, but we ARE going to win!!!!
Sickness and Seizures
About two weeks ago Joshua developed a fever, was very lethargic and sleepy and would not eat. He had had a persistent cough that we had checked out previously, but it was not going away. We took him to the pediatrician and he had a chest x-ray that revealed an upper respiratory infection and sinus infection. He was put on antibiotics to help.
Being sick or tired lowers a person's seizure threshold so any amount of sickness is problematic for someone with epilepsy as their seizures increase. For several days Joshua's seizures were put into over-drive and he was having around 100 per day on some of the bad days. The Myoclonic seizures that he has when he sleeps were very pronounced and happened often and since he slept so much during those days the seizure numbers really went up. I held him once during a nap and he must have had a seizure at least every minute or 30 seconds for over an hour. It is hard to get good rest when you are having constant seizures, but you need that rest so the seizures can be reduced (it is a vicious cycle). Also during this time period he had a lot of Myoclonic seizures when he was awake and he usually has those when he was asleep so that was new for us as well. I was EXTREMELY fearful during that week he would have another grand mal seizure because he was having so many of them and he was so sick. Thankfully he did not, but I didn't get much sleep because I was watching him like a hawk.
We have to be very careful to not let him get too sick before getting him on the right medication to get better as the added seizures were very stressful for us and very disruptive for him.
I hope he does not get sick again for a long time! He is doing better now and seems to be over his virus - thank goodness!
Being sick or tired lowers a person's seizure threshold so any amount of sickness is problematic for someone with epilepsy as their seizures increase. For several days Joshua's seizures were put into over-drive and he was having around 100 per day on some of the bad days. The Myoclonic seizures that he has when he sleeps were very pronounced and happened often and since he slept so much during those days the seizure numbers really went up. I held him once during a nap and he must have had a seizure at least every minute or 30 seconds for over an hour. It is hard to get good rest when you are having constant seizures, but you need that rest so the seizures can be reduced (it is a vicious cycle). Also during this time period he had a lot of Myoclonic seizures when he was awake and he usually has those when he was asleep so that was new for us as well. I was EXTREMELY fearful during that week he would have another grand mal seizure because he was having so many of them and he was so sick. Thankfully he did not, but I didn't get much sleep because I was watching him like a hawk.
We have to be very careful to not let him get too sick before getting him on the right medication to get better as the added seizures were very stressful for us and very disruptive for him.
I hope he does not get sick again for a long time! He is doing better now and seems to be over his virus - thank goodness!
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