Wonderful Update

Wow it has been a long time since I have updated this blog. So much has happened in our lives. Here is a copy of the latest update that I posted on facebook on 8/24/2013

"The earth is the Lord's and everything in it. The world and all its people belong to him. For he laid the earth's foundation on the seas and built it on the ocean depths." ~Psalm 24:1-2

As I share this update with you I am reminded that everything, belongs to Lord. Everything we have, and everything that we are. All of our time, and talents belong to the Lord. Also, our children belong to the Lord. A wise friend once said to me, "Rebekka we present our kids to the Lord in these beautiful ceremonies in front of family and friends, but are we really willing to let the Lord use these children in the way that he sees fit?" I thought for a moment. Was I willing? I mean I had sung the songs, prayed the prayers, "Oh Lord use me, use my life," But at what cost? 

As we have watched Ethan have hundred's of seizures a day for the last two years, my prayers have changed. They had become, "Oh Lord please heal him." These prayers are not wrong by any means, but what if I wanted things my way? Trust was becoming an issue. Did he not hear me? Did he not hear the pleas of the countless people that were praying for Ethan? Well I believe that he did. But more than that I believe that Lord was right there walking with us through all of this. Another dear friend said to me, "We pray in our time and God answers in his time." 

My faith is growing and I am learning so many new things. I am learning to seek that healer and not the healing. I know that God loves us to much to not let us grow through this. 

Update:

The past few months have been challenging. The doctors once again said that they were out of options. No medication was working. So we weaned him off all medications. It was rough. The withdrawal seizures were unlike anything we had ever seen. They were intense, and sometime the rescue (emergency meds) didn't even work. But we know that the daily meds were only making him worse. So about six weeks after his last pill he had one week of seizure free days! It was amazing. We were overjoyed. But then the drop seizures returned. We continued to pray. I specifically was praying for direction. Then God sent another mom to me. A mom that had little boy with doose syndrome and had been on the ketogenic diet. She looked at Ethan's records and suggested changes in the diet. We slowly made those changes over many weeks. He started growing again. The drop seizures nearly all went away. 

As of today it has been over a month since his last drop seizure, and 15 days since his last grand mal seizure. If we see any seizures they are only at night while he is sleeping. This last month has been amazing. One week ago we let him take off his helmet. (That was harder for mom and dad than Ethan. I don't think that we will ever forget watching him slam his head into things. But we know that this is the next step for both him and us.) He is growing and learning by leaps and bounds. We had forgotten how much a toddlers brain can take in when they are not seizing. He is learning his letter sounds, colors, and shapes. We are excited for what each new day brings. 

Thank you so much to all of you who have been faithfully praying for Ethan, and our family. He is making big strides of improvement right now. We are down to just a few evening seizures. Keep the prayers coming. God is faithful in the good times and the hard times. May he bless you today.

Playing outside with no helmet! 

Faith takes time

Today was a 'good' day!! Only a few seizures in the morning.

Faith is something that takes time.

I need to remember to take one day at a time, or in our house one minute at a time...

Thank you for your prayers!

Rain Drops

Honest thoughts from a mom who is struggling with what it means to have a child suffering from Doose Syndrome:

It seems as though I have been watching life in slow motion lately. We have been told multiple times that Ethan is not responding to any treatment, and that the medical team does not know what else to try.  The thing is...there are other options. I just have to be the one to do the research, find the things that are working for other families and then suggest them to the doctors. (an honorary neurology degree...yeah I have one. :)  It is a long process though. After searching the web, reading article after article, to many medical journals to count, then it happens! You think you find something that might possibly work. SO  I call to make an appointment and the receptionist says, "Well we are all booked up at the moment. I can put you on a waiting list." (I really hate those 4 month waiting lists.) It is so hard to watch your son fall, and hurt himself continually and then be told by the medical team, "Well we have an opening in September with the doctor." Really? This is life threatening. You want me to wait 5 months to see the doctor? Craziness.

Then one day you find yourself in a place you never thought possible. You look around and 3 months have gone by. You have cleaned up blood so many times a day it just seems like part of normal life. You spend more time on the phone then you ever thought possible. (Who knew that doctors and insurance companies couldn't get along?) Well I get the privilege of playing middle 'woman.' This is what life looks like now. I had unknowingly kind of become use to it.

Then all of sudden I am smacked with the reality of the situation yet again. We are now getting letters from the insurance company wanting to know why Ethan is hurting himself so much. We now have to fill out reports as to 'why he fell,' 'where he fell,' and 'how he fell.' They are skeptical because there have been so many x-rays, so many doctor's visits, and so many injuries. Also his preschool teachers are very concerned. They say "Wow I can't believe how hard and fast he falls," or  "Are you trying any new medications?" I just cringe at the comments. If only they could come and live in my house for a day.

How come the doctors don't see the seriousness of the situation?


When Ethan falls down time after time during the day he is less motivated to try again. So we see him regressing. He has taken to crawling lately. It is sad, but I can't help but think I would do the same thing. If my brain kept turning off and I found my self lying on the floor in pain (not quite sure how I got there) over and over again, I would be hesitant to stand up.


I want so badly for things to look up. For Ethan to have some 'good' days. But that just doesn't seem to be the path that life is taking at the moment. We are stuck between a rock and hard place. The doctors don't know what else to try. We are praying and Ethan is still falling.

I am just being honest--Today was hard. Tomorrow is a new day and we will rise in the morning and try again.

"But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness.  "The Lord is my portion," says my soul, "therefore I will hope in him."

Lamentations 3:21-24

Twists and Turns

Since my last post Ethan has taken a turn for the worst. He had 6 amazing days that were seizure free. Then he started having grand mal seizures in his sleep. We were shocked. He was doing so well. I just kept thinking..."This is not happening.." Then the doctor calls to tell us that his labs (the ones that we had drawn 5 days prior) came back with to much depakote in his system. In other words he was toxic. I was honestly quite angry that no one called right away. Now he was having grand mals because the medication was to high. So we reduced his depakote by half a pill on the evening dose. For the first 4 days he seemed to do well, then Sunday came. We thought we saw a slight drop in the morning. As the day went on he had more and more. I was so upset. Not again!! 


This last week has been really difficult. His body is adjusting to less medication and the drop seizures have been terrible. He is hitting the ground fast and hard. Just imagine dropping a bowling ball. Ya, that is what it sounds like when his helmet hits the ground. Also all of the crankiness has returned. I guess it would though, I mean if I was hurting myself that much I would be REALLY cranky.
Today was the the first day since the medication decrease that he has been happy. He is still starring a lot and dropping lots, but he seems a little happier.

SO now we have decisions to make. Lots of them. Do we continue with the diet? It doesn't seem to be working anymore, and it is making our lives crazy. The medication is making him toxic at an increasingly lower dosage. So we have to keep removing it. But that causes major fall out each time. He is losing more and more learning time. His cognitive skills are not going forward. We can no longer justify waiting for something to change.

We have been looking into both steroids and brain surgery. (Did I really just type that?) I can't believe that we are considering brain surgery. But then I think of all Ethan has been through in the last 2 years and I just want him to have a chance at life without falling on his face constantly. Generally with Doose Syndrome brain surgery is not an option. But we are looking a corpus callosotomy. It is an option that worked for another little boy with Doose Syndrome. You can read more about it HERE. It would take some major convincing for the doctors to even consider this option. We however know that God will provide the right medical team if this is the direction that we end up going. 


Please, please being praying for us. The everyday issues that we face are enough to leaving me crying by bed time. We need the strength of the Lord to make it through. He is able to provide abundantly more than we could ever ask. We also need direction. Lots of doctors have told us that Ethan is not going to make it through this. He is a tough case. Doose Syndrome is so rare, but Ethan is more rare. Nothing is working. We will not give up praying. We know the one who made him, and we know that only He has the answers to all of these questions. 

Seizure Free

We are so completely overjoyed at the moment.

It is so hard to put into words all of the emotions that we are feeling.

Just short of two years ago Ethan had his first seizure. That seizure turned out to be the first of thousands. Our life was turned upside down. You can read more about that here. 

In recent blog posts I had stated how frustrated the doctors were, and that they didn't know what else to try. Ethan has failed every drug he has tried. The ketogenic diet did seem to lesson the amount of seizures he was having everyday, but slowly the numbers went back up. Soon he was back up to having 20-30 drop seizures a day and absent seizures every few seconds. So we continued to pray. 

Then last week as were asking the Lord want to do, he brought a person to mind that was able to offer another perspective. She is a specialist with the keotgenic diet. She suggested adding fish oil, COQ10, and folinic acid to his diet. For those of you not familiar with the ketogenic diet let me just say that this is not as easy as it sounds. I had to search out the right brand of each supplement making sure there was no sugar or carbs in them. Then I have to get him to take them. Remember he can't have sugar, and he has never swallowed a pill, so how do you hide them? The form they come in is a gel cap, almost like a vitamin E. So I knew I wasn't going to be able to crush them. It was big undertaking. So when the supplements arrived in the mail we opened the bottle of the fish oil and gave him one. He proceeded to chew it up and ask for more. Ewww! Isaiah and Isabelle were laughing and of course Ethan loves attention so it worked out well. Everyday since then he chews them up and we all tell him how great he is for eating them. 

Just two days after starting the supplements we noticed a huge decrease in the number of seizures he was having. Then on Monday he only had one slight twitch. Tuesday was our first seizure free day in nearly two years. It was an amazing day!

Today however marks day number three of being seizure free!! We are praising the Lord for his faithfulness through all of this. He is so good. 

Here is a video clip that we took at the end of day on Tuesday, February 26th 2013. It was his first seizure free day. 

Thank you so much for praying! 

God has done a miracle! 

Please keep praying for him as we know it will take time for him to heal.

"Give thanks to the LORD, for he is good. 'His love endures forever.'"

Psalm  136:1

12 days

We are 12 days into the depakote wean and he is doing well. To be honest he is a little better than well. He is talking and playing with his siblings. This makes my heart so happy.

The first 8 days (or so) after we decreased the medication we saw an increase in seizures. There was an increase in both number and intensity. I remember on one occasion (he did not have his helmet on) he had a drop seizure in his brother's room and put a big goose egg on his forehead. They were playing with legos and he was standing to close to the book shelves. Lots of ice and a few hours later he was ok. Although the goose egg was so big that his helmet didn't fit for awhile.

We see him get better after each decrease of medication. It just takes about 8-10 days for his body to adjust to the change. But after that time he is so much happier, and he has less seizures. The last two days have been wonderful. We have seen just a few slight jerks. (Insert big smiles here) In this roller coaster of seizures we know that his body will slightly increase seizure activity again soon. Then it is time to drop the medication again. It is almost as if his body is saying, "This stuff is making me sick." But we can't take it all away at once or he will have bigger problems. Believe me I wish we could.

Also we have consulted another specialist on the ketogenic diet and she has recommended adding several supplements to Ethan's diet. So far we have added fish oil, and COQ10. He cracks me up because he will just take the pills and chew them up. ewww!! The other kids laugh, which makes him want to do it even more. He doesn't know how to swallow pills yet and I was concerned about how I was going to get him to take them. They are oil gel caps, much like vitamin e. Tonight we will add folinic acid to the list of supplements.

It has been really nice to have a few restful days.

Much prayer would be appreciated for the next couple of days. After church today we caught him in his room with Isabelle's tootsie pop she brought home from her class. I was a little surprised. He doesn't really ask for food from anyone because he knows that he can't have it. However, as he has been coming off of the medications he has become more and more alert. He is not so "zombie like," anymore. He is now aware that he is missing out on things. We are all praying that his ketones stay high through the night and that he doesn't have a grand mal from the sugar.

One day, one step, one moment at a time.

Thank you again for your prayers.

********UPDATE:  2/25/2013

No seizures in the night and his ketones remained high!! Praise the Lord. Today he attended his preschool class and the teachers were shocked that he didn't have a single seizure in class!! So excited! They usually see to many absence seizures to even count them all, and about 6-10 drops (where he actually hits the ground) in the two hours that he is there. We are hopeful that God is answering prayers! Thank you all so much for praying.

Faith is a Journey

"Faith is the confidence that what we hope for will actually happen, it gives us assurance about things we cannot see." Hebrews 11:1

Some times I have moments where life seems hard, a little to hard. At those times it is easy to fall into a pattern of heart ache, and selfishness. Then all of sudden perspective hits. While sitting in hospital rooms I see other parents losing their children to cancer. I see single moms who are being told that they may only have a few hours left to hold their sweet babies. I am blessed to get to hold my child every day. He is still with us, and I am so very thankful. 

After nearly two years of daily seizures (some days 100+) our faith is what has kept us going. We know that God is with us. We have been asked many times over the last two years, "How do you have faith in a God that is not healing your son?" Our answer, "God is God and we are not." I have the faith to believe that Ethan will be seizure free some day. It may not be while he is still here on earth, but someday he will be. Right now God has asked us to be faithful and trust in his plan. That is incredibly hard for this control freak momma to do sometimes, but I know that God is the one in control not me. As I was reading through Hebrews 11 today I was reminded of all of the people throughout the Bible who had enough faith to do what God asked them to, even though they really never got to see the outcome. 

So as we take the next step in this faith journey we are asking for your prayers. We got word just last week this team of doctors in Seattle is out of ideas. "Ethan is puzzling us," they said. No medications have worked thus far, so trying new ones doesn't seem like a good option. Currently his blood levels are showing that the medication is hurting his liver, and his kidneys. After much prayer we have decided to wean the last medication that he is on. It is not an easy decision as nothing we do with this child seems to calm the seizures. However this particular medication and ketogenic diet seem to be interfering with each other. There have been quite a few parents that have reported their kids get better when the medication is removed. The hard part is removing it. It has to be done incredibly slow, and each reduction brings on more seizures. But the long time in-between reductions is very important. It gives his blood enough time to level out, and his brain can adjust to the change very slowly. Ethan is on such a high dose of medication that it could take over a year of weaning to get him all the way off. That is  going to be quite a journey. 

A promise from the Lord found in Isaiah 30:18-21:

"So the Lord must wait for you to come to him so he can show you his love and compassion. For the Lord is a faithful God. Blessed are those who wait for his help. O people of Zion, who live in Jerusalem, you will weep no more. He will be gracious if you ask for help. He will surely respond to the sound of your cries. Though the Lord gave you adversity for food and suffering for drink he will still be with you and teach you. You will see your teacher with your own eyes. Your own ears will hear him. Right behind you a voice will say, 'This is the way you should go.' "

We are asking for your prayers as we start this new leg of our faith journey. We are calling on the Lord for help and we believe that God is faithful to his promises. So no matter if we get to see the outcome or not we must be faithful to what he has asked us to do.