Still Doing Great

Hewitt at Tolmie State Park last week with his cousins.


Things are going GREAT! Hewitt is still seizure free. The only thing that hasn't really improved is his sleep disturbances. We're coming to accept his wakefulness at night as part of this ordeal and hoping he will eventually grow out of it like he is hopefully doing with this awful condition! We are just thankful to have him well, with us, growing, listening, loving and just being an ACTIVE part of our family again. He LOVES his new baby brother and has been so sweet with him. It's still amazing to me that things stopped so suddenly and for so long now. Much praise going up to our Savior!

Some updates

May is a busy month for our family and I am so behind in blogging! Hewitt continues to be seizure free, although he had a fever last week and I could have sworn I saw some hand twitching in his sleep, but in the daytime we never saw any proof of it. I'll never know for sure, but rejoicing that they're still gone.

Praises - Hewitt is potty trained in the daytime - even through nap. I was beginning to wonder if this would EVER happen and haven't pushed it because of everything else he's been going through, but I feel like we're finally over the hump! (for now anyway)

Last week he woke up having hallucinations about spiders and was up for about 4 hours convinced there were spiders everywhere, including crawling on him and us. It was absolutely horrible, but thankfully it's all over and we haven't seen any more of this night time behavior since. We think it was most likely his medicine, but we're starting to see this side of Hewitt we haven't seen before...he's scared by things fairly easily. Much easier than his brothers. This has really caught us off guard as he tends to be the "tough" guy around here. It's nice to see his sensitive side though. This week there's been a bear roaming around Shoreline and he was very fearful that it was going to claw it's way into our house!

He is memorizing whole books and reciting them back to us as he looks through the pictures. This is amazing and such sweet music to our ears. Not only that but he's retaining all kinds of songs not only from the radio, but also from church. It's so fun to see him engage and have interest in these things again.

Prayer requests - Next week is going to be a very busy week for the whole family. Hewitt does not like leaving home often and we're going to be going A LOT. A few of the things happening:
-we're in the process of moving across the neighborhood, we'll be closer to the church, closer to the school we want for the kids and saving some money. we're halfway moved, but need to finish this weekend
- we have a civil court case on wednesday (27th) morning very early that we're nervous about. someone is trying to squeak 5k out of us, and we hope that the truth will prevail and we will not have to be stuck with this debt
- our annual graduation celebration is the 29th, the friday following our court date and we have much preparation to do for this. we have lots of help, but it's still a lot to be done in one week - hayden will be taking the teens to an event the following morning (30th) as well
- the following monday (june 1st) hewitt has a 24-48 hour eeg scheduled. we're checking up on his progress, trying to see if he's having anything going on in his sleep or seizures that we're not seeing. he still has days that he acts like he's had them even though we're not seeing anything.

So, if you're still with me. We covet your prayers and appreciate your support through all of this. My next update will most likely be after our court date or after the EEG.

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.

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.

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!

Appointment with Dietitian

We had our appointment with the dietitian yesterday. I wasn't sure what to expect going in, because we've seen such good improvement with what we've been doing we didn't know what else she would help us with. He is still having some lingering seizures, most of which come from deciphering which sugars are okay, or him eating something with dairy. Because of these, she wanted to just keep going down the road we're on instead of starting a whole new diet. I appreciated that because it seems silly to do something totally different when what we're doing is working! We still have our appointment next week at Bastyr as well, so hopefully between the two we'll come up with a good plan. For now, she wants me to cut ALL kinds of sugars out, not just refined, reduce his carbs and up his fat and fiber intake. I'm still trying to decide if I want to do this yet. Things seem to go really well as long as we're careful about what he eats and we keep him regular. He already has so many restrictions as it is, if we don't have to restrict more it would be really nice. On the other hand, if the seizures pick back up again, we'll gladly make changes and see if it helps.

The dietitian was nice, well organized and knew her stuff. I still couldn't get her to recognize the significance of the changes we've made and the results we're seeing. That was frustrating. But, hopefully next weeks appointment will be more helpful.

Hewitt is continually improving cognitively. His memory is functioning much better and he just LOOKS brighter and healthier. It's an amazing blessing and I'm so thankful for God's timing with all of this. I can't imagine trying to home school the boys and keep Hewitt safe from all of his falls!

Update on EEG

I finally got a message from the Dr. today about Hewitt's 24-hr EEG. She agreed that his diagnosis should remain MAE/Doose and not be changed to Lennox Gestaut Syndrome. We are thankful of this. Although they are similar, we would prefer to have an MAE diagnosis as the prognisis tends to be less grim for their development. Woo-hoo! Now we get ready for our appointment with the newest epileptologist next Friday and yet another EEG!

So Far, So Good

I can feel my optimism returning and I find myself guarding it carefully. We had our appointment with the epileptologist today and my first knee-jerk reaction is to say it went wonderfully. She listened, took notes, affirmed us, and suggested the things we hoped she would. It was everything we had hoped for. But, as I learn, (ever so slowly) that I don't like to eat my words. I am going to tell you instead that things went nicely and "so far, so good."

She suggested a 24-hour EEG, so we are scheduling one so she can get a good read of what's going on. She questioned the doose/MAE diagnosis, but I don't want to react until she gets a better read. The other diagnosis she was leaning towards has a much worse prognosis. But then again, it's just a label for what we've already been dealing with. It won't change that. She also suggested that we try the ketogenic diet! We were very excited about this, as we would rather try it then go through the long list of meds that are out there. And, from what I've read, a good epileptologist would see this as a very worthwhile effort to reduce seizures. The only problem is that there is a 6-month waiting period for the diet, as it has to be initiated in the hospital. An alternative would be starting on the Modified Atkins Diet until we can get in. We are excited about this oppurtunity. From what I've read it does similar things that the ketogenic but is not as rigorous and will be easier on our family and especially Hewitt. Some people have had complete seizure freedom on this diet. We are hoping and praying for that!

So, that's about it for now. We aren't going to add any meds, which we are quite pleased with. Hopefully we will be seeing a dietician soon. If we don't, I'd like to start him on the MAD diet on my own. It seems very manageable. I am thankful for all of the people that have been encouraging me to follow my instincts as his mother. Hayden and I have made some hard decisions the last couple weeks regarding meds. But, each time we've made a change we've had a complete peace about it. Even now, I feel hopeful again. He is still having seizures, but I feel like we have some alternatives other than doping him up on drugs. Not that the diets are without possible side effects, but he should maintain his cognitive development on them.

We went to the park for the first time without Hayden today. We had a friend and her 2 boys with us, so that definitely helped. It was hard. He was having a hard time walking for some reason and was spacing out a lot. He also had his hockey helmet on which makes him stand out ever so slightly ;-). But, he didn't get hurt, and they all had fun. Mission accomplished. We are going to try to do everything we can to maintain a "normal" childhood for him. Sometimes I think the obstacles lie with my own issues than they do with his. Letting go is hard. I am thankful for today. I notice I am smiling easier. I think the break we got this weekend was just the rejuvenation I needed to face this with a little more fight than I have been.

Short Update

Despite our concerns about Hewitt's increased seizures we continue to be turned away at Children's. Last Thursday one of his legs started freezing up and he could hardly walk on it. I took him in to the ED with the concern of that and the amount of seizures he was having and they sent me home without an explanation and without an evaluation from a neurologist. We are really frustrated right now. We are trying to focus on the positive though. We were told they wanted to schedule an EEG at Children's this week. That might expedite the process a little bit. Otherwise we will wait to see an epileptologist on July 21st at Children's. I am still concerned about his leg. It is acting up again today and we have no idea why. It seems like to me it would be something you would do an EEG on WHILE it was happening, just in case it is a focal seizure...I don't know if it will still be happening later this week. His neurologist in Tacoma wanted to add a fourth med to take care of it WITHOUT even seeing him to evaluate him. I refused to do that as we're seeing a new Dr. in a couple weeks. Thanks for your continued prayers. Please pray for patience for us. Also, for Hewitt's leg. I keep having these visions of it being something really horrible and him losing his ability to walk or something. It's just scary. That's probably not a possibility, but with everything else going on, it would be nice if his legs worked properly! We're out at camp this week so hopefully it will be a good breather for all of us.

EEG results

I was just looking back over the page and realized I never posted anything about his EEG. I talked to the neuro while she was reading it and she said it didn't look good and that he was having a lot of seizure activity. (I could have told her that without an EEG.) We talked about it again last week and all she told me is that it still reads abnormal. This is good and bad. Good in that we're still dealing with the same thing. But, bad because we're still dealing with the same thing. One of the reasons she wanted to do it was because he had been having some leg stiffening for a week or so and she thought it might be a focal seizure: meaning it's coming from one place in the brain. When you have focal seizures it's a good thing, (as far as seizures go) because they can pinpoint where it's coming from and it makes you a possible surgery candidate. Hewitt's continue to come from all over which rules out surgery for him. If you have any more questions about that let me know and I can explain that further. For now, we just have to control them with other means, which we are doing rather unsuccessfully! We just finished day 3 of lowering his depakote sprinkles (the med we introduced 3rd) and he continues to drop a lot everyday and now his absence seizures have increased. He might be having withdrawal seizures though. We won't know for a little while how he's really doing with it all.

Appointment update

I have mixed feelings about our appointment yesterday. Hewitt acted like a drunken child the whole time. This was good for the Dr. to see, but hard for me to watch because it just affirms that he is drugged and how it's affecting his little body. She has seen smart, funny, strong minded Hewitt and he did not show up to the appointment on Friday, drugged Hewitt did. He is quickly regressing since he's been on this second med and I am going to have to continue to push for him to be taken off. She wants to give it one more week, but I think I've seen enough to know that it's the medicine. His seizures continue to increase daily, even though we upped his dose last Tuesday. Every day is getting more frustrating to watch him in this state. His drops and absences increased a lot today, and although he hasn't had a tonic/clonic in several days...these are just as bad, in my mind, and harder to manage. We have another EEG scheduled for June 2nd. While I am interested to see how it has changed since this all began, I am also a little nervous because I know the seizure activity has increased so much and I'm not sure how that will read differently on the EEG. I need to do some reading this week on that. You can pray for boldness for me as I speak with the neurologist. It is not worth another week of his life for me to watch him be like this...especially since he's having seizures anyway.

Update

As I posted before, Hewitt's seizure streak was broken last Wednesday while my Dad was watching him. Since then, he has continued to gradually have more seizures. Friday morning he had a big seizure in bed with us, we had to use the emergency meds to stop it which we've never had to do before. We were a minute away from having to call 911.

Before we went to sleep the night before, we talked about how wierd it would be to see a big one since it's been over 3 weeks since he had one. That is a praise. But, now he's had 2 more since Friday and thankfully they've stopped themselves. They continue to increase but we go in tomorrow to meet with the neuro again. I do not like the second medication she has added. He has been having odd side effects that leave us very uneasy: anger, aggression, sadness, wierd thoughts. Not to mention, the increased seizures this last week. If anything significant changes after tomorow, I will let you know.

She prescribed him for a helmet this week. We have mixed feelings about it, but know that we should probably do it for his safety. He had a drop on the concrete Monday night and nailed the back of his head pretty hard. Poor baby. He braves it all very well though and is very tough!