Saturday, October 23, 2010

Changing the Ratio

So I had a bit of a scare with Evan's ketones yesterday. They dropped all the way down to a 2.9!!!! 2.9??? with no explaination as to why. Everyone who was with him had said he did not get a hold of anything he wasn't suppose to, so the reason for the drop is just unknown and it bothers me!!!

I decided to skip his lunch yesterday with the suggestion from Deb Snyder (the auther of the book keto kid..thank God for him bringing her into my life because she was the first to get back to me with what I should do..Evan's keto team took longer to get back to me..ughhhh). The skipping of his meal was a bit stressful as I had to listen to him cry that he was "hung-a-ree" but I just kept trying to keep him busy until it was time for him to go down for a nap. While he was napping, the nurse got back to me and his nuero decided to up his ratio from a 3.5:1 to a 4:1..hopefully we can get him into a stronger ketosis. He did have 2 seizures this week, one on sunday morning and again on thursday. He does better in the 5s and 6s and he has been in the 4s mostly other than when he dropped drastically yesterday.

On a seperate note, I have been reaching out more to the other mothers on the keto group and even started adding some of them to facebook. I have been on a kick to help raise awareness of epilepsy. People seriously do not understand how much of an impact this disability has on a whole family PLUS what it does to the individual that has it. Epilepsy has turned our whole world upside down and it has also been a roller coaster of emotions. I am fighting for Evan 100% and I am determined to get him to be seizure free. I know we can get there. We have already had periods of up to 3-4 weeks of seeing no seizures and I am praying to get back to that.

Evan is so bright and I know a lot of his frustrations and behaviors stem from him not exactly being able to verbalize everything. He is getting there slowly, but still needs improvement and help to get there along the way. Still waiting for the scheduling department to call me to get him started on speech therapy. I think I am just going to call them on Monday to see what is going on.

Thursday, October 14, 2010

2 Months on Diet

I haven't writtn much lately about Evan and the diet..We have just had so much craziness going on in our family. September was a horrible month!!! My husband's grandmother passed away and then 2 weeks later his aunt passed away as well. We did take Evan to the funeral home for his grandmother's viewing. It was an all day thing, 1-9 pm. Evan did fantastic!! There was lots of food around, so we did have to watch him closely, but overall he did no whining or crying. The actual wake the next day was a bit of a challenge, as it was the first time we have stepped foot into a restraunt since starting the diet. He was perfectly fine and was hapy just eating his chicken, cream, veggies, and butter. We did take along his snack with us as well, and I do have to say that eating out this time was a "success".

We did decide not to take EVan with us to the funeral home for my husband's aunt's funeral, but we did pick him  up so we could all eat as a family. This time the dinner was a disaster. He screamed, cried, and whined the whole time. I felt so guilty and angry at the same time. Guilty because my little boy has always been such a fabulous eater and now I can not just give him anything he wants. Angry because I am so fed up with this freaking epilepsy. Angry that my little boy was "chosen" to have to go through all this crap. It is so stressful to have to be on this diet, but I know in the end it is all going to be worth it.

Speaking of anger, I have been so angry lately. Like I have already said, I am so upset that my little boy has had to go through all of this. I am angry because only a select few releatives have really reached out to understand and have gone out of their way to try and make our lives easier because they know we are stressed out. My mother-in-law has done everything she possibly can to help us. Read the books, removed things out of view and reach..and most of all continuously tries to understand all of this. She watches him while I go to work, so it is nice not to have to "worry" that she is going to sneak something to him that he can not have. My husband's side of the family is always calling and asking how everything is going with least once a week they want some kind of update. Sadly, my side of the family only calls me when they want to share some sort of news of their own and then they quickly ask.."oh, how is evan." It is really upsetting to know that I really don't have much family support. Not one person on my side has asked what all this diet entails and have not showed one ounce of support. That is just how I feel and I can't help it and it really has been bugging me a lot lately.

On a lighter note, Evan really is doing pretty good on the diet. Since starting he has had a total of 7 seizures, but still an improvement. I can name almost every reason he has had a seizure since this diet. His first few seizures appeared because of the keppra wean...a few of them because he got a hold of some sugary drinks he wasn't suppose to have, and this last one I think due to a diet pop that had splenda in it instead of aspartame. Splenda has sucrolose in it and I think that may have caused is seizure. I quit giving him that drink, so hopefully we wont see any more seizures.

Evan's speech is still not very good, but is slightly improving. He had an evaluation and qualified for speech therapy, so we are just waiting now for the scheduling department to call us and get things started. In December, he has an appointment with the Child Developmental Unit at children's hospital. It is a 2 to 3 hour appointment to see where they think he is developmentally and to see what else we can do with his impulsive behavior. We shall see what they have to say about all of that. I have a feeling this is going to be a very interesting appointment :)

Tuesday, September 14, 2010

A Month on the Diet

Evan has been on the diet for a little over a month now. WOW! I swear it feels longer though!!! He has been doing fairly well on it and so far, no major side effects. About 2 weeks into the diet we decided to wean Keppra because Ronnie and I could no longer handle his behavior. He went 3 weeks without any seizures, but about a week into the wean we started seeing some breakthrough ones.( 3 seizures to be exact) We also decided to taper up his lamictal, but the wean was faster than the tapering. Once he was on the higher dose of lamictal we stopped seeing seizures (for now, anway) and it has been 2 weeks since his last seizure.

Evan had his first keto clinic today and everything went fairly well. He did awesome at his appointment. Ever since the start of this nightmare with  epilepsy back in December, he has been horrible at doctor visits and hospital stays, but today he did fairly well. The only thing he hated was the labs that had to be done. My poor little guy :( We have decided to go up on his ratio to 3.5:1 and increase his calories from 1160 a day to 1300. So, we are pretty happy about that and hopefully the increase in calories will help with the "hunger".

The only thing that made my heart sink was hearing for the first time that Evan is definetly delayed in his expressive speech. Something I just knew for the longest time, but never could get a doctor to agree with me on , and to be honest it did NOT feel good to be right this time. I just wish that I would have fought harder for the speech therapy and maybe he wouldn't be as delayed. Anyway, while we were at the hospital this morning, the doctor gave me the number to the speech pathology department and I stopped in and filled out paperwork and he has an evaluation on thursday morning. So glad I called when we were waiting for Evan to be called back for lab work because if I wouldn't have called when I did, we would have had to wait until almost January to get him an appoinment!!!

I was talking with a friend today and venting out my frustrations. I love my son with all my heart and he is definetly one of the best things that has ever happened to me, but part of me is angry that we have to deal with this demon called epilepsy. I keep finding myself asking "why"..why is this happening to my son?? My friend then reminded me that God does not give you anything more than you can handle and that God chose me to be his mother because he knows I will watch out and take care of my special little boy. I am really not trying to drown my self in "self pity" but who really wants there to be something wrong with thier child??

I want the best for my son and I am going to do everything in my power to make sure his life is the best one possible. I am going to fight for him and I am going to make sure I do everything possible to help him through his struggles. Evan deserves that...and I am going to make sure he knows he can be anything he sets his mind to be..

Thursday, August 12, 2010

Rough Couple Days

This diet is a lot of work, but that really isn't the stressful part of it. Trying to give Evan his meds are the worst. Before the diet, his meds were all flavored and he never gave us a hard time taking them. Going to call the dietitian first thing on Monday(since she is out of town) to see what "free foods" we can try to hide them in.

The other thing that is so heartbreaking is Evan crying, and I mean full blown out temper-tantrums that he is hungry. I know I am doing what is the best thing for him now, but seriously this part of the diet is so hard!! I remember on the news a year or two back when a little girl was starved to death by her parents. That really takes some sick deranged people to do such a thing to their child. I seen what Evan went through in the hospital from refusing the eggnog and not having any food at all. It did NOT take him that long to get very sick from it.  What my husband and I are doing for our son is to help him get better and I could never imagine starving him out of abuse!!!

Wednesday, August 11, 2010

The Starting of the Diet

Evan was admitted into the hospital on Monday, August 2. We arrived at about 11:30 am and were taken straight to his room where they put in an i.v. and lots of blood was drawn for tests. They checked all his vitals and weighed him and measured his height. They also administered an EKG which totally freaked him out after already being poked and prodded. He was NOT a happy camper to say the least.

The one thing I wish someone would have told me was that we could have fed him a regular breakfast. So, he had not eaten since the prior evening. I thought once they brought him the ketogenic eggnog that he would guzzle down the drink, but the exact opposite occurred. He wanted absolutely nothing to do with that eggnog. We started forcing it down by holding him down and using oral syringes and we did get about 6 oz of the eggnog in him. Over night, Evan got extremely sick and kept throwing up. I would have to say that this was the worst night of my life. Tuesday morning arrived and all Evan did was sleep, and this is not my son at all. My son is usually a very energetic boy that I have to fight to get to sleep and now he is barely responding to us.

We finally met the dietitian that will be an important part of the keto-team. We told her how he wanted nothing to do with the eggnog. She said she could add flavoring and some liquid sweetener to make it taste better, so we agreed and tried that with Evan..Nope he still wanted nothing to do with it. Again on Tuesday, we are forcing it down his throat. Since he wasn't drinking the proper amount and hadn't had anything to eat since Sunday night, he went into acidosis. His co2 levels fell down to a 5, and a "normal" person should be at least a 30 and on this diet they want you to try to maintain between 13 and 15, so a 5 was not exactly good. The interns and resident at the hospital just kept looking at the numbers and kept trying to discourage us from going further. Seriously, not even 2 full days and they want me to give up?? I said " no way, we came here to try this and we are trying this!". I kept pleading with the dietitian and doctors to just allow him to start actually eating foods allowed on the diet.

Wednesday morning, the dietitian came to his room and then took me to her office and showed me how to use the ketocalculator and how to use the gram scale and weigh his food. She decided we could start the actual diet by giving him solids. His first ketogenic lunch was grilled chicken, butter, green beans, and heavy cream and guess what?? Evan ate every last drop of it and the only time he actually drank the whipping cream. Things really started to look up from there and he was more awake each day, but then the doctors on the floor kept getting concerned with his "numbers" again. They started loading him up with sodium bicarbonate orally and through the i.v. . His levels would be steady during the day and then drop again overnight. They even went as far as to tell us he could become comatose and die and that really scare my husband and I into almost giving up on this diet. But, when the actual doctor, who we will be dealing with during the ketogenic diet, said she is not worried about his numbers as long as he isn't looking lethargic, my husband and I bucked up and said okay..we are NOT giving up.

Honestly, the most stressful part of this whole diet is that we had to switch all his meds over to sugar free. He now gets actual pills that we have to crush up and so far everything we have tried to put the meds in hasn't really worked. Nothing has masked that nasty bitter taste for him. I thought I found a solution by putting all his meds into the sodium bicarbonate and then mixing in a pinch of sugar free jello powder. He took it just fine the first day, but now it is back to me having to pin him down and forcing it in him. I hate having to do this and hopefully i can find something that will work!!

The most rewarding part of this diet.... EVan has not had a single seizure since Tuesday Aug 3!!!!

The Decision For The Ketogenic Diet

I had read briefly the info on the ketogenic diet and had also asked the epileptologist about it. She didn't really seem all that for it because of Evan only being two. What she wanted us to do was really consider the VNS (vagus nerve stimulator). It is considered a "pacemaker for the brain" and requires non-invasive surgery. During one of our hospital stays, she sent us home wilth a ton of info on it. I really was not "feeling" this. After all, the fact that Evan has no known cause for his epilepsy, he has a good chance of out growing it. The question in my head was "do i really want to put my baby through surgery?" and the answer i kept coming to was "NO".

One day, while I was browsing through Facebook, I came across a friend's post. It was video of her collegue speaking about the ketogenic diet and how it had cured her son of seizures. This woman's name was Debbie Snyder. She wrote the book "KETO KID". Her son went on the diet at 4 years of age and stopped having seizures 3 weeks into the diet. He was on the diet for 2 years, one year of which he was on meds and the other with none. He is now 11 years old and still seizure free and a "normal" boy.

My friend got me in touch with Deb and we talked. She sent me her book and my husband and I were convinced that this is definetly worth a shot!!! I contacted his epileptologist and told her we want to give this a try. I was told to buy the book "Ketogenic Diet" written by Dr. John Freeman. I did weeks and weeks of research. I swear I was consumed by learning as much as I could about this diet because I wanted to be educated and prepared! After reading all the success stories on Charlie Foundation website, I had no doubt at all that we were doing the right thing for our little one!

The Backround Info

So where do I start?? I guess I can start off with talking about the last 9 months.

Well, My husband noticed the seizures first, at the end of Novemember. He would tell me Evan was making a jerking move with his left arm. I told him he was crazy and that maybe he was just imagining things. I, in no way, shape or form, wanted to think there was anything wrong with my baby boy!

Then, on one of my nights off, It happened right in front of me. He was roaming around the living room with this glazed look in his eyes and both his arms jerking up. This lasted for about fight minutes and Evan then layed down and went to sleep. This was at 7:30 p.m on December 7, 2009. I will never forget the first time I seen him take a seizure!! I told myself, "okay i will call the pediatrician first thing on Monday." It kept happening though. He woke up early saturday morning and his arms started doing the jerking thing and again in the afternoon. Sunday morning comes and it happened twice in the morning. I decide that this is really scaring me and we call the doctor who tells us to take him over to children's hospital because what we are describing, indeed, sound like seizures.

We arrive at the E.R. and are asked a million, maybe even a trillion, questions. The E.R. doctor even went as far as to tell us we could put a gun to his head and he would insist they weren't seizures, but he would call a neurology doctor in anyway. The neurologist asked a bunch of questions and examined Evan. From what we were telling her, she was sure Evan was having seizures. The doctor ordered a CT scan right away and a ton of lab work and she admitted him into the hospital. All the tests done that night come back normal, so she ordered and EEG for the following morning. The EEG was a horrible experience for Evan and not because it hurt but because in order for them to put all the leads on him with out him stopping them, we had to restrain him. He screamed and cried so bad and I was crushed. I felt so horrible for him because he had no idea or understanding of what and why this was all going on. He only just had turned two not even two months prior yet. My poor little guy!

The EEG results came back ABNORMAL. At the time, I really don't think I truely understood what that meant. He had even had quite a few seizures while he was in the hospital and then it hit me, Oh my god, he has epilepsy!! How could this be?? Is this my fault?? Did i do something while i was pregnant that caused this?? I was devastated and all I wanted was answers. I spent hours and hours doing research on epilepsy and I hung onto every word the doctors said to me, but I still wanted to know "why" my little boy was going through this.

The neurologist started him off on zonegran and then a few days later we went home. He still continued to have seizures on a daily basis, so the doctor added trileptal, but that only made the seizures worse. We weaned him off of trileptal and the neurologist sent us to an epileptologist. That doctor ran a bunch of genetic testing to see if there was a cause for his seizures but those all came back normal as well. She added klonopin and keppra, but Evan was still having seizures everyday. So, the epileptologist added lamictal and still no changes. We then went into the hospital again to have an overnight EEG done and to push the drug dilantin in hopes that would be our answer. When we left the hospital Evan was very wobbly and could barely stand up straight, but didn't have a seizure for about 2 days. After 2 days, he started having seizures again, so we kept upping his dose of dilantin. Evan did NOT do well with this what so ever. He was way too drugged and everytime he went to go take a step he wopuld fall. I called up the nurse and said this just is not working we need to get him off of this drug, and that is what we did. We took him off of the dilantin. We then took him in for a spinal tap..the last of all the tests that could be done to find out a "reason" for his epilepsy..again this came back NORMAL..So Evan has idio-pathic epilepsy. There is no known cause for it and he just has it..