Enjoying the reprieve

Lincoln and Everett headed out of the car to school.

More good news! Hewitt continues to be seizure free. This last Friday was 4 weeks without any "small" seizures. We had a couple relapse days with a few "big" seizures, but we've been without those for over 2 weeks now. He is running around helmet free, without behavioral issues, and we are thouroughly enjoying this time with him. He is showing good progression in potty training again, (self-initiated). It's just such a blessing to have him "back." When we get frustrated dealing with his normal 3 year old stuff, we just remind each other of what we were dealing with a month ago and it makes it much easier to deal with.

Here is a pic of him at our store. He has even been able to play the computer. He's been working on his alphabet and pre-reading skills. AMAZING! Thanks for your continued prayers for his health and that of our family. The two older boys have had a great transition into the public school system and it's been a great break for EVERYONE. I didn't realize how much they needed a break from all of this until they started. They're actually excited to see Hewitt when they get home in the afternoon, and I am enjoying the extra time with the younger two in the mornings. It feels great to be able to give a positive update, and pray it continues.

He's Back

I've been waiting to post this because it seems like whenever I do things change again, but I'll post anyway because it's just so exciting.

Hewitt hasn't had a seizure in 6 days.

It's amazing. Last week, Friday, Saturday, Sunday, Monday and Tuesday, we were absolutely distraught because he was having so many. Last Sunday we finally gave him his emergency meds to stop it because we thought he was in non convulsive status. He was just sitting, barely talking and constantly drooling. You couldn't carry a conversation with him. It was heartbreaking. Sunday, Titus came down with a fever and then passed it on to all the other kids thoroughout the week. Hewitt was the last to get it. It was the first serious fever he's had since we've started this whole journey and if all the seizures he was having before weren't enough, he started having more. In the time he was actually aware and conversational he was mean and angry and hard to deal with. We got his fever under control and the seizures slowed down and then on Thursday, we added a new med, Euthosuximide. It's a med to control absence seizures. He's on a fairly low dose, and only once a day. But, Friday, he woke up alert, happy and hasn't had a seizure since. He has been a doll all week. It's like we have him back completely. Usually when the seizures subside the behavior issues begin, but so far, things have been great. Still doing normal 3 year old things, but no more psychotic anger episodes. He's trying to obey, kissing and hugging everyone and he's told me twice (without prompting) that he doesn't have "ceasers" anymore. He's adorable and we're soaking up every minute of him.

Things are good now, but we know that could change at any moment. We certainly try not to live in fear of the seizures returning because it's way too early to tell if this med will make this change long term. But, we're learning (slowly)to take today and deal with what we've got!

He had an evaluation at the local school district yesterday and today to see if he will be able to be in a special preschool program for kids with developmental delays. This has been hard to swallow, but I think it will be good for him socially and developmentally. Without the seizures, he did great on most of the testing. It continues to amaze me how quickly his body recovers when they stop. We wait now to see what services they will offer and when he will start.

Thank you

Yesterday, I had the biggest weight lifted off of my shoulders. Let me explain.

The end of last week Hewitt continued to regress in his seizure activity. We were/are back to hours on the couch sitting, drooling, staring off and barely talking. I was in a panic because I no longer feel like I can trust the Dr. we had our care with and wasn't sure who to call. I emailed our pediatrician, who has been a huge support through all of this, and asked her for some ideas, options, anything. She started calling trying to get us into Swedish to the Dr. we were supposed to see to begin with. We didn't get in before the weekend, but yesterday we got a call at 2:00 saying the had a cancellation and could we come at 3:30?! We said, yes, closed down the shop and took him in. I hate going to appointments rushed and unprepared, but getting this appointment was an act of God, so I was trying to just trust He would give me what I needed when we got there. Our pediatrician had the opportunity to speak the epileptologist before we went in and she got him up to speed on our experience with Dr.'s and where Hewitt is at now.
This was the best appointment we've had since this all started 9 months ago. The Dr. was very knowledgeable without a major ego, we talked about med options, treatment options and the different things we've read about them. For the first time in all of this I felt like I was talking to a Dr. that had actually read and studied more about Doose and the treatment than I had. WOW! What a great feeling! I am just praising God right now for his intervention and provision. Hewitt still isn't doing great, but we have a plan in place and I feel quite hopeful about finding something to help him.

Thank you all for all of your prayers. We appreciate your support.

Titus

Through all of this mess with Hewitt we have been amazed at how God has brought His light and love into our lives when things feel so very dark. One of the biggest ways He has done that over these last 9 months is with our other children...but, honestly a majority has been from Titus. Don't get me wrong, we adore all of our boys, but there is something different and special about a baby that the "big" boys have grown out of. We are so thankful to have our sweet, smiling and always entertaining Titus. He has brought so many extra smiles and laughs, it makes the anticipation of a 5th a little less daunting.

Quick Update

Just wanted to post asking for a little extra prayer for Hewitt's safety. Like I posted after our appointment almost 2 weeks ago, we've had a significant set back with seizure activity. We are 98% sure this is due to the reduction we made on his medication. We are hoping things will taper off soon, it's taken a lot longer than we've expected for him to adjust to the new dose and he's had a lot of hard falls this week. All seizure types are back, except the tonic clonics (which is good). We're back to a bruised forehead and we're trying to keep him safe, but sometimes even wearing the helmet around he still isn't protected. He had a really hard fall in the pet store the other night. He fell like a tree, it was bizarre. But, he landed on his face and his hand and we thought he broke it again, but ended up he just jammed his finger really hard. Nonetheless, it's depressing to see him go back to this state. It certainly makes me appreciate how far he's come, but I'm even more eager now to get back to where we were without seizures. I'll try to keep this updated, as we're hoping things will taper off as we hit the two week mark of the medicine reduction.

Changes for the New Year

This has more to do with our overall family, but wanted to share anyway. First of all, we're starting the new year expecting our 5th child in July! I'm almost 13 weeks and we're really excited about the arrival of another little one. Second, after much prayer and wise counsel, Hayden and I decided to purchase a local shipping/postal store. It is a really low key store, only open from 12-5 M-F. Things worked out financially, God opened all the doors so we just kept walking through them. We had our first official day on Friday and Tuesday I will have my first official day with just me and the boys! We'll do our school here along with naps and the other stuff we do. So far the kids are excited and we are too. It will definitely be an adjustment, but this suits us well. I have never been a homebody and staying home and homeschooling has been a challenge for me that way. I am excited to have a place to "go" everyday where we can do school, run a business and be a family! It's less than 2 blocks from the church and less than a mile from our house. Please pray for us as we start this new adventure!

Update - it's a long one.

I realize it's been almost a month since our last post, but not too much has changed. He seems to pick up something new every week which keep the seizures lingering. I always feel like a downer, so I've been avoiding posting, but we have a change coming that we feel hopeful about improving his quality of life.

We had a Dr.'s appointment on Wednesday. It was our first since the end of September. My one objective for the appointment was to convince the epileptologist to get Hewitt off of his current medicine and hopefully onto something else or nothing at all. When we changed Hewitt's diet and saw such a huge reduction in seizures, we also have seen progressively worse behavior from him. It has made life really difficult especially this last month and it's frustrating because with all the increase of seizure activity I just want to love on him, not be disciplining him all the time. (in love of course) But, the kind of behavior we're dealing with is beyond anything we've ever seen with him. The Dr. and I did not see eye to eye on the level of importance for our family and his behavior. She basically told me that I need to realize Hewitt has a difficult to treat type of epilepsy, there's not an easy fix and that I need to be willing to live with some side effects...I told her I don't think it's unreasonable for me to want to take my child off of a medication that changes who he is as a person. She was completely defensive, condescending about our situation and made me feel like we need to start looking for a Dr. that will be part of a team with our family and get their ego out of the way. It was so hard to keep my mouth shut through all of this. I was furious that she felt the need to tell me that Hewitt's condition is complicated and not easy to treat. GIVE ME A BREAK LADY! We've been doing this for 9 months, if there was an easy fix I think I would've found it and probably BEFORE YOU. I can't figure out what my problem is. Dr.'s don't respond well to my input on my child's condition. They can't seem to acknowledge or respect the fact that I know something, that I've spent some serious time researching and many times know more about a certain medication and efficacy of a treatment then they do. I'm sick of it. I don't come into appointments arrogant acting like I know it all. I do come in acting like I'm informed and have the ability to make decisions on Hewitt's behalf. My job as his advocate is not to make them happy, it's to make him well.

So, enough whining about the appointment. This is where we're at now: she only offered me one other med option and she knew it was one I won't use - she even said that as she offered it. Our next step is to start the Modified Atkins Diet. Hewitt will be on 10g of carbs a day! We haven't started yet, but we're hoping to start next week. She also switched his medicine to a tablet form and we had to reduce it by about a 1/4. The liquid solution has sugar in it so we need to switch to the tablet form for the diet. Since we've started this reduction Hewitt has been having massive amounts of seizures again. We're hoping it's just an adjustment, but it's been quite the throwback to see so many again. He's back in his helmet fulltime and we hope things will calm down within a few days. Please pray for his safety as he's already had some really brutal drops and his face his getting all bruised up again. He's resisting his helmet a lot more than he did before.

That is where we're at. I appreciate all of you that have been asking me how things are going and wondering why I haven't posted. Now you know!

Roller coaster

Another week gone by and another week of fighting colds and tummy bugs and the seizures keep creeping in. I've been really discouraged all week by this return of seizures. He had probably 20 today and 2 big ones already this week. I keep hoping it's just a little tummy bug that Titus seems to have too, but I don't know for sure, he has minimal symptoms. This has me guessing whether or not the diet changes are really going to be the ultimate answer for him like I hoped they would be. They aren't enough to keep all of them away, so we need to figure out what our next step will be. I can't believe it, but I've been considering adding a new med and seeing how it goes. I have been doing a lot of reading the last couple nights about some more recent research on MAE and they in the medical articles they narrow down the treatments that seem to be effective for kids with it. I think we need to be open, there's still a couple drugs that aren't as heavy duty that we would be willing to try. This article affirmed that for me, so now I think we just need to wait out this illness (or maybe winter) and decide what to do next. It has made me realize that it is easy to become complacent with "just" a few seizures a day. I need to get back to fighting any and all seizures. It's not fair to him for us to settle for anything less.

I have tried to make an effort not to overthink things with this. If I get all stressed out and worried it doesn't help anything, especially him. But, this week, seeing more drops...watching him fall 2 feet away from me and not being able to catch him has been pushing me back down that road. Everytime he gives me his sweet smile and I see his little gray tooth (that's gray because he fell on it) it's a reminder of the battle he's in. His behavior continues to decline and I often don't know how to deal with it - which leaves all of us frustrated. This week, the idea of a seizure dog has popped back into my mind. I can't help but wonder if it would be a good distraction for his horrible behavior. Only problem is these dogs can cost up to $15,000 depending on what company you go through. But, lots of people do fundraisers to cover the cost of it all. So, I will research and see what I can find.

Brain Frustration

So, for the last 2 weeks now Hewitt has had a slight increase in seizures. It started with one big one and then he's been having drops about 5-10 times a day again. Sometimes they're not as violent as they used to be, and then sometimes they're really hard. He's really resisting wearing his helmet again because he hasn't had to wear it for a while, but now we need him to for his safety. The first week I thought he was fighting a virus, Titus had a really bad cold. But, now on the second week of this I'm not sure what's going on. We talked about taking gluten out, but it isn't a noticeable trigger like the other two diet changes. So, I think I'm going to need to start a food journal and be really committed to recording everything that's going on so we can look for some patterns somewhere. He's been really onry again, but then also very sweet on the upside of things. I don't want to have to do introduce any new meds, so I'm praying that God would show me something else that we can do here to help him.

On a different note, below is a link to an article that was just released about causes of epilepsy. It's a study done in Italy and is talking about the immune response. It's really encouraging because so many of our parents can see this obvious change in our children's seizures when their immune systems are compromised, but without much explanation from the Dr.'s. This makes sense and it's exciting to think they might have a new method of treatment in the future.

http://news.yahoo.com/s/nm/20081124/sc_nm/us_epilepsy_3

Feeling Blessed

Yesterday on my yahoo group for parents with children that have MAE I requested parents to all chime in and say where they are at and what their experience has been so far. I'm still fairly new to the group compared to some people that have been on there for years and thought it would be helpful for all of us to hear other people's stories and share our own. One of the things that is most encouraging when you're in the fire with this is to hear from people that are on the other side of it. Or, even from people that have learned to cope and live with it daily.

I wasn't prepared to read all the responses. There's been a good amount of parents chiming in their stories and I'm so grateful, but it's hard to read the stories sometimes. I've only read about 3/4 of the stories so far, many with tears and understanding and some with awe and a heavy heart.

I say this with some reservation, mostly out of fear of sounding redundant and like a cliche. But, I sit here tonight amazed again at God. I just feel so blessed that we found something to help Hewitt. He was doing so bad. So incredibly bad, we had lost him for weeks at a time, only getting glimpses of "him" for minutes at a time. I really believe that God led us to where we're at. He unsettled my heart with all the meds. He led me to information on diet changes. And, while some people might argue that it was God who made this happen to Hewitt to begin with...I praise Him for giving me my son back. For getting to watch him play on the playground again, walk like a child without a disability, talk and use his imagination, he even remembers what kind of car one of his church teachers drives right down to the color. I have this beautiful, thriving boy. (I have 4 for that matter) And 2 months ago, he was still beautiful, but he was a mess and hurting so badly and I was terrified for his future...and while I still worry about his future, it's a lot easier to deal with today and enjoy what we have right now. And, although we are not 100% seizure free, I think we have found something and when we're diligent enough it seems to be working.

My hearts go out to the families that are dealing with this weeks, months and years without relief, or the ones that might have had a time of seizure freedom and then had their hopes dashed when the beast returned. We might be one of those families someday, but today my prayers and my pleading are for them and all they have to deal with today and my thanks go up for our Hewitt and our miracle.

Baby steps

So, things have simmered done slightly around here. The massive screaming, hitting, kicking, biting fits have calmed down a little bit and we are able to do normal things like get dressed in the morning. I feel like I'm able to see what sets him off a little better so I'm doing my best to avoid those confrontations. Although, sometimes it's impossible to avoid them when it's something like Hewitt throwing his couscous all over the kitchen table and floor making a huge disaster and my least favorite thing to clean up - pasta. Some things I just have to put my foot down on. But, it seems like the fits aren't lasting as long and with the threat of losing a toy to the garbage can he usually snaps out of it.

I had a very encouraging moment yesterday as we were driving in the car. We drove by an office that we drive by all the time. About 5 months ago I had an appointment at that office and I brought Hewitt in with me. He was doing really bad at the time, dropping, drooling like crazy and really out of it cognitively. Hayden ended up coming in to help me out because I had Titus with me as well. On our way out we ran into someone in the hallway that had a rat and he got to see it and pet it. Yesterday as we drove by Hewitt said "mommy, do you remember that place we went" and he pointed to the building. "remember how I went there with you, and Daddy came, and we saw the rat?" I know this probably sounds really trivial, but it was such an encouragement to me. At the time it happened I wouldn't have thought he was cognitive enough to even remember it at all. And, now, 5 months later he is pulling it out of his memory somewhere. It was amazing and it completely made my whole afternoon. I love how this diet is giving him enough of a break from all the seizures that his mind is able to work again like it's supposed to. He even did a page out of his preschool workbook this week!

It's little steps, but they're in the right direction.

The New Black Cast

Just in time for Halloween, he picked a black cast.

Help

This last week has been a really rough week for Hewitt behaviorally. His seizures are still very minimal, but there has been a big change in him and we aren't sure why. He has made almost everyday this last week SOO difficult. I'm exhausted and at my wits end by naptime and not really sure what to do with him. He seems to lose all sense of what's normal and acceptable...you know the built in filters we all have that help us make decisions about things: it's like they're suddenly gone and he's freaking out about everything and being aggressive toward his brothers, even Titus. It's beyond his normal challenging of authority...it's something different and I hope to get to the bottom of it. He's also been having strange pains in his left arm and leg and we're not sure what's going on there and if it's related to anything. He had a different kind of seizure on Sunday than we've ever seen before and when it was over he couldn't move his left arm for several minutes even though he was awake and aware of what was going on.

Please pray for wisdom for me in dealing with him. I really feel like something else is going on and it's not just him acting out. Thanks.

The Cast

Hewitt got his cast on yesterday and was so excited. He thinks it is so cool and he got to pick out a very nice shade of blue! We also found out yesterday that he actually broke both wrist bones. Ouch! They call it a buckle or a torus fracture, so it's not a complete fracture of the bone. One side just buckles. It should heal quickly. He'll have this cast on for two weeks, then they'll take it off, re x-ray and hopefully put a short one on.

OB/GYN Elephant

This mural was in the wall of Hewitt's room in the ER last night. I can't decide how to describe it...disturbing? creepy? inappropriate? humorous? It's just wierd. Not really sure what they were thinking. It gave us some good laughs while we were there though.