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.

Back in the EMU

So we are back in the Epilepsy monitoring unit. Evan had a week or so where seizures were almost gone but now he is having a lot again. Currently he is on 5 meds-
Depakote
Onfi
Keppra
Vimpat
Zerontin
His dr discontinued the zerontin & lowered the night dose of Keppra.
We are starting ACTH while here in the hospital. Evan got his first dose Thais afternoon. I'm freaking out a bit about giving him shots & the side effects too. But if it helps it will be worth it.

To do Ketogenic diet or not

So this past friday we had an appt with the nutritionist to go over the ins and outs of the Ketogenic diet. We talked in depth with her about it and I was thinking we would go for it. But then I have been thinking further and I think I may want to wait. One factor is that Evan is starting a new school with a new teacher. Secondly, is that he seems to have not had any seizures since Thursday except for he had one yesterday. I really don't want to get my hopes up but I am starting to feel hopeful. I am so afraid that they will come back anytime.
Another reason I am thinking of starting the diet is to get him off of his 5 medications. He will be on some but maybe only 2 or 3. But then if this current combination works how can I take him off of any. That is scary.
Another thought I have is trying the ACTH and then putting him on the diet and weaning one or two meds. I just don't know.
I think I will wait to talk to the dr. more on August 14th and then go from there.
I just want the seizures stopped or reduced and the medications reduced as well.

Saturday of seizures

Yesterday I woke up & gave Evan his meds because I want to give him his meds close to the same time every day. He woke up an hour later. About an hour after that the seizures started. I called the dr because he had almost 10. I was told to give him a 10ml dose of Keppra & give it 20 mins. Evan was sleeping when I gave it to him. He woke up around 12 noon & by 2p had about 6 seizures so I gave him diastat as per dr order. It seemed to work for a few hours. They came back pretty steadily. I called the dr & he said I coul give another dose of diastat. So I gave it with all his other meds & he went to sleep. I really don't know if I should just let him have seizures or if I should push for more seizure control? He is already on 4 meds.

7-24-12 through 7-26-12 EMU Stay

So we headed off for another stay in the EMU. The child life staff at our hospital is so awesome. Evan got to have the iPad for about 2 hours.

This really helped to keep him occupied while he was being hooked up to the EEG. Evan is such a trooper. He just goes with the flow so well. He did not even fuss when he was being hooked up to the EEG. I know the iPad helped a lot with that but a lot of it was Evan as well. He knew the tech from our last stay and he did well with her that first time as well. There is one EEG tech who has hooked him up before and I think she scrubs too hard so he just cries when she walks in the room. I was so glad we did not have to put him through that this time.

Being in the EMU can be tough because it involves a lot of sitting but Evan does OK. We do take trips to the vending machine and to the playroom.

So now for the nitty gritty information. Evan's EEG was very active on our first day. So the Dr. ordered a steroid via IV. I will give Evan and the IV nurse a thumbs up for both doing such a great job. The night time EEG shows a lot of activity. So during Tuesday night Evan got an IV dose of Keppra and a regular gtube dose of Vimpat. Then he got a 2nd dose of Keppra. Wednesday morning we noticed a major improvement on the EEG. This was exciting. So we officially started the new medications and held 2 of his other meds. I still noticed quite a few seizures on Wednesday but the EEG looked much better in between the seizures. Wednesday night he got another dose of steroids and a big dose of his clobezam to help break the cycle at night. Thursday morning his EEG was looking so awesome. We were able to go home.

Evan was so happy to get his EEG leads off. He was happy to be off of the EEG tether as well. We hung out for a while after he was unhooked but soon we were heading for the elevators and home.

Evan helped carry some of our many bags.

So we went home on Thursday afternoon. I had not seen seizures all day. I was hopefull that we may have found good control. Then we get home and I am setting up his new car toy and bam- seizure. That night he had a few but I was OK with up to 5 in a day compared to the 20 that he was having. Friday they started coming back with a vengence. Friday night he had a ton and I was going to call the dr. but thought I should give his meds and put him to sleep and see what the next day brings. It was late and he was due for his meds.





Seizure Journey

Ever since Evan's seizures started back up in March we have been battling to get them under control. When they started back up we thought they were head drop seizures but they are not. Basically, Evan's eyes will roll up into his head and then he will blink rapidly. They last from 2-10 seconds. We noticed them coming back and called the Dr. who set up a quick 1hr EEG. I got a call later in the evening from the nurse practitioner as the Dr was out. She said that the EEG showed Evan was in Absence Status, meaning his brain was almost constantly in a seizure. The crazy thing was that you would never know to look at Evan that this was happening. His Dr. told me that there is a disconnect from his brain to his body. I don't know if it is good or bad. So at this time Evan was on only three seizure meds Felbatol, Zerontin and Clobezam. The Dr. immediatley took him off of the Zerontin and added the Depakote back in because in Nov 2010 he had the most normal EEG on the Depakote, Felbatol, Clobezam combination. So we started this and hoped it would do the trick. Had an EEG a few weeks later and we did not much of a difference but the Dr. wanted to give the meds more time to work. This put us into the end of May. During the month of June we did not notice a lot of seizures. We went on vacation in the end of June and that is when we started noticing more seizures. These were the eyes rolling into his head and rapid eye blinking.

 So after vacation we ended up in the hospital in the Epilepsy Monitoring Unit. We of course discovered that Evan was having seizures, he was also having seizures that would show up on EEG but not in a physical sense.

While in the hospital Evan spiked a fever adn was discovered to have a double ear infection. Poor guy was not feeling too well.

After some antibiotics he was feeling better and was doing his favorite past time of coloring on the white board.


 So after two days there we left on July 4, 2012 with the addition of a new med -Zerontin & we were going to start a 5th med Sabril. We had been on the Sabril about a week when I was still noticing a lot of seizures still. I called the Dr. almost in tears because here is my child on 5 seizure meds and I am still seeing tons of seizures. So we took away the Zerontin because it really was not working. We increased the Depakote, and sabril and decreased his Felbatol. A few days later I got a call that Dr. wanted us back in the EMU starting on July 24, 2012.

Update on Evan 7-2012

It has been a while. I am going to do a short bulletted update of important things that have happened.

August 2009- Make a Wish trip to Disney World

August 2009- Started Kindergarten in full inclusion classroom

Summer 2010- started having drop seizures

August 2010- started 1st grade in special ed classroom- best choice ever

October 2010- Hospitalized for Seizures, got gtube

November 2010- Beginning of seizure free period

August 2011- Started 2nd grade in same special ed class as 1st grade

November 2011- Tendon release surgery

March 2012- Seizures are back

Skipping Ahead

I'm not going to go into great detail to update on here but I hope to post more often.