Quick Update

This will just be a quick update. Evan is doing so well. I feel like I am waiting for the other shoe to drop but hopefully, we will have a long run of nothing to exciting happening.
Lately, Evan is just talking so much. It is mostly not understandable but he has been saying mommy, dad, gabe, oh yeah, I want that and a few other words more clearly. Now his speech is far from clear and it would probably take an outsider a while to understand him. He basically says words with vowels and misses the other sounds. This is caused by #1 his brain malformation and the speech area of his brain is very malformed. Other children with the same type of malformation-polymicrogyria usually have some sort of speech delay or are mostly non verbal. This new burst of speech is awesome and it is showing some cognitive maturity on  Evan's part which is so awesome as well. He has really made strides in the last 4 months. And we noticed even more once we started the ketogenic diet and got a better control on his seizures.
Seizures are doing awesome. Which means we aren't seeing them at all. He did have one after christmas and has had a few suspicious episodes. But really that is nothing compared to the crazieness we went through with him having 40-100 a day at some points. I have a love/hate relationship with this diet. I love that it is working and I hate that I have to weigh and measure all of his meals and mostly that I have to tell Evan no to foods or in some cases more food. Lately, he is wanting to eat so much and I feel like I should be encouraging that and not telling him no. But how can I not continue this diet if it is working. We see Evan's neurologist on January 10 and have an EEG on January 9th. I am honestly freaked out abou the EEG. I am worried we have lost our good control and Evan is having a lot of subclinical seizures which are the seizures we do not see but happen in his brain. This in not an unfounded fear because in March 2012 that is exactly what was happening. I will be holding my breath when we have the EEG until it turns on and I can see what is going on in that sweet brain of his.
We had a great November and December. I am happy that he is doing so well and I hope it continues well into 2013. Next post will have pics and some more fun info. I am trying to update this blog a few times a week.

Catching Up

I haven't been updating this blog much because we are without a computer and it is too hard to do on the phone. So a quick update on my sweet little boy Evan.

Evan turned 8 years old on October 22, unfortunatley we were in the hospital for seizures but they made it so special and the bonus was we got to go home that day as well. The Child Life team at Sutter Memorial is awesome.

They made a huge sign for him, He loved it.

He also got a pillowcase full of toys and stuff.

The Bucket full of Dinosaurs was his favorite.

 

We had a small birthday party for him a few weeks later at home. It was nice and small and just what we needed.

 

Ketogenic Diet-

 

 Back in September when we started the Ketogenic diet it was more of a modified Atkins version of the diet. When Evan began having clusters of seizures again in the middle of October and we ended back up in the hospital we decided along with the dietician to switch to the more traditional ketogenic diet. This means that Evan has 4 meals a day and each item is weighed in grams. It is a high fat, low carb and low protien diet. It is a lot of measuring especially if I want to make him a recipe such as pizza, pumpkin pie, pancakes, muffins etc. I made him a Keto cupcake for his birthday party and he loved it. He was content to eat his cupcake and did not make too much of a fuss over the fact that other kids had different cupcakes.

So far the biggest challenge we are facing is that Evan wants to eat more than what is allowed. But his dietician has assured me that his calorie intake is the same. We usually just try to distract him until he can eat again. Evan still gets formula as well.

 

 

So the big question you are wonder I'm sure is how are the seizures now that we have started the traditional diet?

 

I try not to get too excited or get my hopes up but I am happy to report that seizures are being held at bay right now. We had an EEG in early November and visited the neurologist on November 20th. He was excited at how great the EEG looked while Evan was awake. We eren't able to get Evan to go to sleep so we will do that in a couple of months at our next visit. I have noticed some intense staring periods where I come upon Evan and he just has this horrible blank stare on his face and he usually takes a few seconds to come around or answer to his name. I'm pretty sure these are seizures but as along as they don't start coming every day or in clusters I'm happy.

 

School-

 

Evan seems to be perking up and being more active in his classroom. I am not getting daily phone calls about him so that is great. Right now I am working on getting Evan some important supports that he needs at school. The school district wants to move Evan to a lower functioning classroom.  The whole process is frustrating. I just want them to look past his medical needs and see the smart boy who can and will learn. I was thinking about just giving in because I thought they were right and he did regress due to seizures but after visiting the classroom they want to move him to I changed my mind. He is at a higher level than most of the kids. While I love the school I am afraid he will lose progress if he is not being challenged. I'm in the process of talking with an advocate to see what my next steps will be.

 

Here is a pic of Evan's birthday party and his pathetic little Keto cupcake that was too soft to hold the big old 8 candle I bought. LOL

 

All in all, life is going very well for us and Evan. If we can keep up his good run of few to zero seizures I will be thrilled.



Ketogenic diet update

So far Evan is doing ok on the ketogenic diet. He has some favorite foods that he can't have but he is getting used to the foods he can have.
This week we r noticing an increase in seizures. So we met with the dietician & have a plan. I definitely see an improvement in seizures when his ketones are higher. Behavior has been better too. I hope we can make it work for us.

Common Misconception about raising a child with special needs

It is hard for me to understand how someone can think that a child who has special needs & requires extra care & attention would be a burden on a family or that parents would feel relief if the child passes on. Every child I've met that has special needs is so happy & love life. They have a special something about their personality or spirit that makes you smile & feel happy. I see it in my own son & I've seen it in friends children.
Yes, a child may need to be carried or lifted & it may hurt the back. There are solutions to that. Yes, the child may not have good vision but they "see@ more than we know. Yes, a child may not talk but they say so much. They may have a feeding tube, a trach or other tubes etc. Yes we as parents may have to fight endless battles to get what they deserve. We may cry in our rooms at night. But we get up every morning put on a happy face & get ready for whatever the day holds.
I don't think it is always easy to raise these special children, it is hard & exhausting but it is usually not the children that make it so hard it is all the fighting insurance & red tape that is hard. It is seeing your child cry because they are being put through a medical test or them not crying because they are so used to it. It is hard watching them have countless seizures or even one seizure.
It is not the feedings or suctioning or diaper changes or therapy appts.
The best part is the child. The sweet smiles, the cuddles, the amazing spirit this child still has & the fight. It is something not everyone is lucky enough to experience. Some wont ever see it. A reality that we have to face is that our children's time on earth could be shorter. Some parents know this as a certainty & some don't know if it could happen but know there is a chance. Of course there is a chance anyone could die at anytime. But some special needs children are medically fragile, they get sick easier stay sick longer & r more prone to hospital stays due to illness. Others have epilepsy & that is a risk as well.
All of our children deserve a happy & full life. A disabled child needs more care in most cases. Being Evan's mom is so awesome! He makes it so special.

Home Again

 So we finally got to go home yesterday(friday). Evan's dr came in on Thursday evening and we talked about a plan for once we got home in regards to seizures. His Dr. wants me to call if he has more than 5 in a day and if I see more than 10 I need to get his rescue med. Evan did great with seizures and then about 30 mins after the dr. left he had one and then about 7 more the rest of the night. Of course it happens that way.

Evan hanging out in the ER, not too thrilled with the O2 monitor on his finger.

 

Evan always like me or his dad to hold his hand when he is trying to sleep. I think it comforts him. And we are of course happy to do it.

Pretty out of it from the dilantin he got on Sunday night

Still pretty out of it on Monday too.

Then we head to the PICU and give him lots of Vallium and he needed a bit of O2

Still kind of out of it on Wednesday but he hadn't eaten either. Was just getting IV fluids

He was still needing a bit of O2 support so the nurse did what they call blow by. She puts the tube in a cup and then puts it near Evan's mouth and he breathes in the O2 and it helped.

You can see he is feeling better because he was using the cup as a telephone. It was so cute. He was also twirling it around.

 

So needless to say we are so glad to be home. Seizures are still very few if any at all. But we have been here before. Evan is doing well tolerating the Ketogenic diet and not getting to eat anything he wants. He still is not wanting to eat too much so that helps. He loves hard boiled eggs and he can have those so that is great. He can have hot dogs and those are one of his favorites. My hope right now is that we can keep good seizure control and not have to be back on the EEG or in the hospital anytime soon.





Day 3 in the EMU-Moved to the PICU

Today we moved to the PICU (Pedatric Intensive Care Unit) so that Evan could be put on what is called Vallium protocol. They give him high doses of Vallium and he has to be put in the PICU to monitor his oxygen because Vallium is a respiratory suppressor. So we started the vallium today around 2pm(it is 6:40pm as I write this). So he fell asleep pretty quickly. His EEG is still very active while sleeping but it is looking better in the awake times. He is still have frequent seizures and I think I will have a better idea tomorrow if the Vallium has a good effect on him.
We are also starting the Ketogenic diet tomorrow. He hasn't had anything to eat or any formula since last night at 8pm. I thought we were starting the diet today so I am kind of annoyed that he is being fasted because he keeps asking for milk and we have the formula but we have to wait to talk to the dietician to get the volume of formula that he can have each and also to be taught how to admisiter the diet. Right now we have to put cotton balls in his diaper and then I get to put them in a syringe and squeeze the urine into a cup so that we can see if he is in Ketosis. Oh the fun you can  have with a child with special needs.
Evan's neurologist came in today and we had a great conversation about what our goals are for Evan. He wants Evan to be completely seizure free and have a better EEG. I told him before he said this that I just wanted less seizures. I would even take 10-20 a day. He said well I want him to have zero. I love that. He hasn't given up on our sweet boy. He isn't going to say that this is the best he can do given Evan's brain malformation. He wants the best for our son as much as we do. So he said we would be here likely to the end of the week. I am ok with this as I don't want to have to go home and come back again in a few days or weeks or even a month. One thing that is so comforting in this crazy times is that we or Evan have a great team of Drs. who care about him, a great hospital with awesome staff to turn to. I also want to again thank everyone for their prayers and thoughts.

EMU Again 9-2-2012

Gosh it seems that I just posted that we were in the EMU on August 20th. We were. We left there on August 23rd after having tried 3 doses of ACTH which our neurologist felt did not work well. We added Felbatol back in and discontinued Zerontin again. We had minimal to zero seizures for about a week then they started coming back again and by Saturday they were coming back with a vengeance. Evan had 75 by Saturday afternoon at 2pm. These are the seizures where is eyes roll up and he blinks really fast, sometimes his head will fall to one side and occasionally his right side will twitch. I gave Evan his rescue medication but that did nothing as I suspected it wouldn't but I knew that I had to try that before I called the neurologist on call because that is what they would tell me to do.
Around 11am I called the Dr. and reported what was going on. This was a neurologist that had I had not dealt with and who did not know Evan. She increased his Keppra in the AM. I kept tracking until 2pm but stopped because I was making my self crazy. Evan continued to have seizures averaging every 2-5 minutes.

Sunday morning he woke up and the seizures started almost immediately again. I tracked until 9:30 and called the Dr again. Same Dr was still on call. Her advice was that it was time to take Evan to the ER and possibly be admitted to the EMU. I was having a hard time with this decision because I was fearful that we would get to the hospital and another Dr. would start messing with Evan's medication etc. I was trying to stay home and just bide my time until his regular neurologist returned on Tuesday but it was really just killing me to sit and watch him have so many seizures so we went.

Once at the ER he was given an IV and blood was drawn so that they could measure the levels of medication in his blood. The ER dr consulted with the on call neurologist and they decided to admit Evan. While in the ER the on call neurologist also ordered a mega loading dose of Dilantin. She gave this in hope to stop the onslaught of seizures. All the medication really did was make Evan really sleepy and acting weird. On top of this he had vomitted twice.

Evan got the dose of Dilantin at 3pm. He slept for almost 5 hours and was then acting very weird where he would wake up and be interactive and then suddenly have a seizures and go right back to sleep. My husband and I were very worried for him at this point and did not realize the amount of medication he had been given. The on call neurologist was not very much help and was telling us that the crazy activity in Evan's head is his baseline. We were just frustrated and scared. So we made a plan just to wait it out until his regular neurologist came back. Evan went to sleep and pretty much slept well most of the night.

Monday morning came and we found out that his regular neurologist was on his way home and would look at the EEG and come up with a plan. I felt hopeful that things would get better now. I did not feel that Evan wasn't getting good care I just felt like the Drs. that were trying to help him did not really know him well enough nor did they know the neurologists plans or thinking as to why he was on 5 meds etc.

So today Evan has perked up a bit and is still having a lot of seizures. I spoke to his regular neurologist on the phone and he really wanted to try adding one more medication back in to see if there is any improvement in the next 24 hours and we are going to fast forward on starting the ketogenic diet which we were going to start on Thursday or Friday anyway. I will be talking in more depth with the neurologist tomorrow about why Evan is acting so different but the Dr. feels his EEG is not that much different. My thought is that perhaps Evan's body is catching up to his brain. His brain has always been much worse than his body.

On top of all of this Evan started having a fever. He had a chest xray done and they are looking for pneumonia because there is a good chance that he aspirated possibly when he was throwing up. This could be very worrisome too.

This is our fourth stay in the last 2 months. The other times it has felt casual and that we were really there to see if new meds would work. This time feels so much more different and emergent. Our Dr. is pretty much almost done with being able to try new medications. Our next step is the ketogenic diet which we are starting but if that doesn't work then we have to consider brain surgery. That is pretty scary.

Now we are waiting on a chest xray to see if he has pneumonia. This thought scares me too. 

At this point I don't even think I can hope for complete seizure control. I just really want less seizures, less medications and maybe a better night EEG. I am not wanting anything unreasonable. I don't want to subject my son to brain surgery. Especially one that may not even work. We have been battling these seizures for only 3-4 months but it feels like forever. I just want them to get better. I want my sweet boy to not lose any skills or have regressions.

This is one of the hardest things about having a child with special needs. All of these decisions that we have to make as parents. What is right? More meds, less meds, being in the ICU with our child in a coma, brain surgery, special diets. And none of these are a cure or a guarantee. We could very well find a great combination and then again be back in this situation in a year or so. So we listen to the Drs, we talk with eachother, I pose questions to other special needs parents and then we hope the decision works or is the right one. When his Dr. offered the ICU on a vallium protocol I almost said let's go for it. It is a desperate feeling when typical things don't work and even what the Dr. calls the nuclear weapon does not work.

Even though this is all so hard at sometimes. We keep on fighting for a better quality of life for our son and for our family. He is the most amazing child and he loves life in spite of it all. He has an amazing big brother who is the sweetest kid and accepts this craziness so well. He also has a caring big sister who he runs and give hugs and kisses too. We have an amazing support system in our parents, other family members and friends. Without that I don't know how we could get through these harder times.