Hewitt and Titus Update

It was recently brought to my attention that I hadn't updated about Hewitt since originally asking for prayer for him!  I'm sorry about that.  We all picked up the virus/bacteria, whatever it was he was dealing with and we were sick for the next couple weeks after.  Thankfully, we are now back to "normal" health.

As far as Hewitt goes - it is hard for me to answer how he is doing.  Sometimes I just hate the question.  There are so many variables that go into it that I feel really frustrated trying to determine what is really going on.  He is able to take his medicine without anxiety again.  That is a huge blessing to us.  And, although he still deals with some anxiety, it isn't as intense as it was that week.  Praise Jesus!  We are still dealing with a high range of emotions with him and I don't always know how to help him with those emotions and that can be frustrating.  We are still on the lower dose of medicine, he is still having noticeable absence seizures and we have an appointment scheduled on the 28th of this month to figure out what our next step will be.

We also will be taking Titus in to Hewitt's neurologist on the 27th for a Video EEG.  He started having some involuntary movements last week.  They came on fairly suddenly and with quite the intensity.  I am trying to remain calm about it but I don't always succeed in that.  I have some days where I freak out and cry about it and some where I am able to just abide in knowing that God knows what is going on and I can trust that. The hardest part right now is just waiting for answers.  I really want to say that I don't think they're seizures but I don't feel like I can rule it out yet.  They look like tics, and while that would definitely be preferred over seizures, it still makes my mama heart sad.  If they keep going on like they do, my sweet boy will likely be a target for teasing and THAT is really hard for me to swallow. Titus is one of the most joyful and fun kids I have ever known.  I hate the idea of someone ever taking that from him.  I know I can't protect him forever, whether he has a tic disorder or not, but that doesn't mean I don't want to!

We would definitely appreciate prayers for the VEEG - we will be there for about 24 hours and Titus is not one to sit still.  This medical stuff is all new to him so I hope it doesn't scare him.  Also, for wisdom in knowing what our next step for Hewitt should be.  Thanks!

Hewitt update

Since I've asked several people to be praying for Hewitt, I figured it would be a good time to do an update on here about what's going on.

We did a medicine increase a month ago and it is one that we have slowly been increasing him on over the last several months.  Every time we do an increase on this specific medicine we see a lot of side effects for a couple weeks.  They include erratic behavior, exaggerated emotions, anxiety and hallucinations at night.  That's normal stuff for him - when it's temporary.  Last week I noticed that he hasn't quite hit baseline yet.  He's still having hallucinations at night, his emotions are still all over the place and his anxiety has hit an all time high.  This week his anxiety was so high that he can't take his medicine without making it into a huge ordeal.  One of his meds gives him a stomach ache and he's gotten so anxious about it that he's made himself throw up just anticipating that he's about to take them.  This morning he refused to eat breakfast (which was a cinnamon roll for goodness sake) because he knew if he did there would be enough food in his stomach to take his medicine and didn't want to do that.  The problem is that if I give it on an empty stomach, he'll throw up anyway, with or without anxiety.  So we are in this place where we're trying to keep him distracted from thinking about it but he's giving himself a stomach ache every time it comes to mind.  So, that's the first issue.  Meds and stomach pain and making himself throw up.  The second issue is that his night hallucinations changed this week.  They have become these weird anxiety attacks where he can't articulate what's wrong he is just in a panic and can't get more than a few words out at a time.  The things we say don't make sense to him and it's just overall weird and it doesn't feel right to me.  I'm wondering if he's having complex partial seizures - I don't want to get ahead of myself, but it's such strange behavior.  The third thing is that he's also just been kind of odd in general.  Lincoln called it "delirious."  His eyes are kind of half open all the time and he's complained about his throat hurting but doesn't have strep or any other cold symptoms.  It's overall just really bothering me.  If it is a virus, it's the first one that's come into our 1400 sq foot house where 8 people live and spend almost all day together homeschooling where no one else has gotten sick.  That doesn't sit right with this mama.  We've also seen some very noticeable absence seizures throughout the day - ones that were much less noticeable before.  Right now he's outside playing with his brothers but I guarantee you that he will come in and be EXHAUSTED and even possibly fall asleep on the couch when he's done.  Not normal Hewitt behavior.

I called his neurologist and talked with a nurse and the info relayed back to me was to reduce his medication by a little bit for a couple weeks and see if things improve.  I'm not super comfortable with that (although we are doing the reduction) so I took in him to the pediatrician yesterday to see if he would do blood work and possibly order an EEG.  He did a strep test to rule it out and wanted to wait for the fever to subside before he ordered anything else.  We go back in Monday.  As of today, he still has a 99.4 fever though.  I really hope that I'm wrong and that there isn't an increase of seizures or a potential blood issue or toxicity from his meds....that would all mean some scary changes for how we're treating his seizures currently and I really don't want to walk down that road we were on before.  The thought of having to take him off of the med that is causing these other problems is actually terrifying to me.  This med was our miracle.  I also plan to call his neuro again if the Dr. thinks it's necessary to order more tests.  Best case scenario is that he has some odd virus that is giving him a fever and it exaggerating the side effects of his meds.

That's where we're at.  Hoping it's nothing serious, but mostly just want some answers.  I'm trying not to get ahead of myself but I want to be his advocate and his voice and I have to do some reading and inform myself if I'm going to do that appropriately.  I've been educating myself on some of the more serious negative side effects of his med so that when I go in on Monday I can be armed with some information! I know that God already knows what's going on and there's great comfort in that.  Now I just need to relax and trust that He is in control and that is what is best for all of us!!!!

Hewitt Update

Okay, I'm trying this again.  I did this from my phone earlier and it didn't publish, so now I will do it from my computer, and I'm guessing the phone one will publish shortly after. :)
Hewitt did fantastic in the hospital.  I was so proud of him, he was happy to sit in that bed and just chill for almost the whole time.  We kept him distracted with movies, a game boy, puzzles, books, board games and some fun visitors! 

Our results so far:  Hewitt is still having seizures.  They are more frequent than we had realized and that was definitely disappointing news. Sitting with him for that much time gave me the opportunity to witness what I had been missing.  And, even though they are still there they are very brief and don't seem to be affecting his cognitive development.  He is having absence and some myoclonic throughout the day and during sleep.  While he sleeps the Dr. said he saw one about every 4 minutes, which shocked me.  But, then on the other hand, it might explain why he is tired a lot and sleeps so hard when he actually sleeps!  We didn't catch a night episode but we concluded that since he isn't falling down we are going to keep his treatment the same.  The Dr. said if he was a teenager having this many they would treat it more aggressively just so he could drive, but at this point, he (and we) are comfortable with how it is as long as things don't get worse and he stays safe from the falls.  His cognitive development seems fine, I tend to be more concerned with his social development and his attention span from time to time.  We are going to try to get another evaluation from the school district.  He hasn't had one since he was 4, so it might be good to see if he has any issues that I'm missing as his teacher.  I don't have a lot of experience in learning issues, so I'm definitely not above seeking help to make sure he doesn't have any!

As a child with epilepsy, Hewitt is at higher risk for early puberty.  We have been aware of this and have been looking for any signs.  Well, he has recently started having body odor pretty strong and asking for deodorant!  I mentioned this to the Dr. and he consulted with an endocrinologist.  That Dr. requested to have a bone age test done on his hand and a couple blood tests to see if he is progressing too quickly.  I really haven't researched this, so I'm not even sure what the course of treatment would be and if it's something they can slow down/stop.  Hopefully I'll get an opportunity to research that while we wait for test results!

We really appreciate the thoughts, prayers and encouragement for Hewitt while he had the testing done this week.  It's been 2 years since he's had anything like this, so I didn't know how he would do.  The amount of adaptability kids have in these situations amazes me at times!  God has equipped him so beautifully for this. 

I will post results when we receive them! And, I have some pics to upload as well!

Much love,
Colleen

the appointment

the conclusion:

Hewitt was really excited for the appointment, I'm not really sure why - but he was really looking forward to it.  We had a fantastic technician who worked so well with him, I praised her tremendously because she seemed to know just how to put him at ease!  When we got in there though and they got him all "hooked up" his nerves kicked in.  He told me he was scared and that he felt like he was going to be there for "ten years!"  I reassured him it would be less than an hour and he settled in for the test.  Hands down, it was the easiest EEG we've ever had.  Amazing how much easier an EEG is with a 6 year old than a 3 year old!

Hewitt is still having seizures.  During the EEG there is a 5 minute period where he has to breathe deeply.  It's pretty challenging for a 6 year old (or anyone I would think) - we put a little pinwheel in front of him and he blows on it to make it spin for 5 minutes straight.  He did a fantastic job.  It was during this period that he had a few absence seizures.  We met with the Dr. after the EEG and she recommended upping his dose of the medicine for the absence seizures.  She is thinking that a lot of the odd behavior is related to the increased seizure activity as well.  The EEG was nothing like it was when things were out of control, but also not as "good" as it was 2 years ago when the seizures first stopped.  We will up his dose, check his blood levels in a few weeks and go back in September for a longer 24-48 hour EEG.  Hopefully the increased dose will be more appropriate for his increased size!  He was 4'3" and 58lbs!  When they gave him the dose - I don't know how tall he was but he weighed around 42lbs!  He was 99.7% for his height and I think 90% for his weight!  I knew he was tall for his age, but that caught me off guard!  It seems fitting that for that much of an increase that his dose should bump up.

my response:
What is there to say?  After she told me there were some seizures on the EEG, I fought to hold myself together for the rest of our appointment.  I went into this appointment with the door closed on this part of our life.  I had said goodbye, I had convinced myself that the seizures were gone and that he'd grown out of it.  I am so far past where we were 2 years ago I hardly knew how to respond when she came back and said he had some absence seizures on the EEG.  Not only did he have a few on there, they happened when I was sitting in front of him, holding the pinwheel in my hand watching him blow on it.  I didn't even notice.  I didn't even notice.  He was sitting in front of me and I didn't even see them, how is that even possible?  My pride was hurt.  I felt like a failure and I know I can't beat myself up over it, I had no way of knowing, but  I have been following my "mom gut" through this entire process and to be so far off base really threw me.  I guess I got a little ahead of myself and maybe even confused my fantastic ability of disconnecting myself from things I hate with an actual peace about the situation.  At this point none of that really matters.  What matters is that we have a new plan in place.  What matters is that we are still fighting this beast.  And as much as I want to mourn the reappearance of these wretched seizures I have much to be thankful for:

*Hewitt is no longer wearing a helmet to protect himself!
*The seizures are brief enough that they aren't noticeable to us.
*Hewitt is learning, growing, progressing in all stages of life, including spiritually and that is beautiful, regardless of seizures.
*We live in a place where we have access to state of the art diagnostic tools and we have an extraordinary Dr. that knows how to use them and cares about Hewitt.
*We have health insurance
*We have a beautiful, thriving, smart, compassionate, imaginative, spunky 6 year old that God uses in our lives to challenge us to grow, to love, to look out for the underdog, and to fight for life!

 

Scar Tissue

  Okay, so I'm not looking for you to feel sorry for me, (although i would accept a hug if you feel led, and you're not creepers about it).  I just have this in my head and since this is my virtual journal I'm going to blog about it! 
    I am so thankful for the time we've had without any seizures in our lives.  But, as time moves along I am realizing how we are scarred from that intense year and I wonder if it's permanent.  Because, just when I think that I don't have to think about seizures any longer, something little happens to bring it back. 
   For instance, when Phoenix was born Hewitt was about 5 months without seizures.  Watching Phoenix sleep, and do all those "normal" twitchy baby things freaked me out until he was about 6 months old.  I did not enjoy one bit of it (his twitchiness and eyerolling).  Even though I'd watched 4 other babies do all of those things, I was convinced he was having seizures.  Every flail of his arms and roll of his eyes sent me straight back to that familiar place.  Hayden would reassure me that everything was fine, but in my heart (okay, and out of my mouth)  I worried we were on that path again.  After about 6 months of that, I finally relaxed and realized he was okay (For now anyway. Don't roll your eyes, I'm not a worrier. It could happen, you don't know).  
   Occasionally Hewitt will move a certain way, give me a certain look or fall down a certain way that makes my heart stop until I can see that he's okay. Sometimes when I hear a kid give a loud thud I go straight back to all those awful falls he had and how we were so accustomed to the sound of him hitting the floor.  I hate it.  I look for it in the other boy's too.  I read once that 1/3 (roughly) siblings of kids with epilepsy have a higher chance of having some kind of neurological issues.  We are just resting in where we're at and incredibly thankful for the health of our children.  We are.  But, we also know better now the vulnerability of that health, and so with the thankfulness comes a healthy fear of what could be.  I continue to pray that we are officially and forever done with seizures. Forever. I know and can say with confidence there will be no seizing in heaven.  Maybe some crazy dancing, but no seizing. 
  Oh, and if you just read this and have no idea what I'm talking about you can click on the Hewitt or seizures link under "labels" on the left side of the page and you can read more about it.  Although, I don't really recommend it, it's sad and depressing and sometimes makes me cry. 

A couple quick links:
http://leroyfam.blogspot.com/2008/05/walking-through-what-if.html,
http://leroyfam.blogspot.com/2008/08/optimism-or-something-like-it.html
http://leroyfam.blogspot.com/2008/05/little-trooper.html

Hewitt

I haven't posted anything about Hewitt in a long time.  He is still seizure free and it has been a year and a half.  I seriously love being able to type that in there.  His next neuro appointment is in December.  If Hewitt is still seizure free at that point we will schedule an EEG for January and if that is "normal" and seizure free we will begin the slow wean from the Keppra.  If things continue to go well, then we will also slowly wean the ethosuximide.  I cannot wait for this to happen and to see what my boy is like without all these meds in his system.

I have had a lot of people ask me if we think he could grow out of the seizures.  A long time ago I posted about how kids have about a 60% chance of growing out of this type of epilepsy.  I can say, that in my soul, I feel like he's grown out of it.  I really think it's gone.  I know there is that small chance that I could be wrong, but the mom instinct in me says it's over.

Hewitt is 5 and these are a few of the things he's doing that we rejoice in!
1. Riding a two wheeled bike!
2. He knows all of his letters, letter sounds and is reading simple 3 letter words.
3. Coloring, writing, cutting and enjoying all kinds of kid crafting.
4. Running, jumping, climbing trees, riding bikes and scooters and exploring outside.
5. Being obedient, kind to his siblings (not always, of course), and having an overall happy attitude!

He is no longer wearing a helmet, scooting on his bottom to get places, zoning out, falling down, throwing screaming raging fits or sleeping his life away.  And, although there are things about him that still concern me, they are things that can change with environment and training.  They aren't influenced by the force of seizures anymore! 

Rejoice!

Still seizure free

Yesterday was 6 weeks without any little seizures! 4 weeks without any at all. We continue to enjoy having our boy back, and love watching him play like a 3 year old should. We just praise God for this change and are trying to enjoy it while it lasts! Thanks for your continued prayers. He is still struggling with getting a full nights sleep. He wakes often, scared and crying. We think it's a side effect of the new med and hope it goes away soon. It has been 6 weeks though, so I'm beginning to wonder! It would be a prayer request for the whole family. He often wakes up the other boys when he wakes up screaming or crying, not to mention us! We are all slightly sleep deprived these days. I will try to get an update again soon.

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!

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.

Sorry Sarah

We had a leadership retreat for church over the weekend so we had to leave the kids with other people, yet again!! So, this time we split them up, and Hewitt and Titus stayed with friends of ours that also have 3 & 1 year old boys. Lincoln and Everett came with us to camp and stayed at the Mallory's. It was nice to have someone along. After dropping Hewitt and Titus off, I went home, packed the other two and us up and left to head out to Camp Gilead, where the retreat was. Just before leaving town, we got a phone call from my friend. It hadn't even been 5 hours yet and Hewitt had already injured himself. Ergghh. He had been having such a great week so I wasn't making him wear his helmet. He had a random drop that afternoon and cut his head on a toy! He had to go to the er for stitches - but ended up getting glued! I felt so bad all over the place. I felt bad for him that we weren't there to comfort him, I felt bad for our friends for having to deal with an ER trip on a Thursday night, and of course I felt bad for myself because I don't like to let other people do things for me. :-) Everything was fine, he did great! He has this great purple glue on the cut and everything is fine. And, some wise woman told me that I need to let people do these things for us because it's good for other people to be able to serve and bless us this way. I had to agree. It was such a blessing for them to take the boys when they have 2 of the same ages at home! I don't envy having 4 kids 3 and under! We were definitely thankful of their willingness to have Hewitt and Titus for the weekend. Praise God for good friends!

Figuring things out

I strongly believe that God gives us peace about things when we need it...when we need to be okay with our circumstances, or a decision we've made...since this began in March, I have been searching for that peace in many different areas. Our decisions about Dr.'s, medicines, treatments, etc. I have received peace in those areas as we've sought new options, treatment, new Dr.'s and taken him off of some of his meds. One thing I have never had a peace about is the origination of the seizures. There is so much about seizures that the medical field doesn't know yet. There is a large percentage of people that have epilepsy that have no explanation for why. So, although Dr.'s are pathological and pharmacological by training, when it comes to seizures (and i'm sure other things) the only explanation they can give is that there isn't one, and then prescribe us a med to stop them. Maybe if that first med would've fixed everything I never would've questioned any of this. But, it didn't. So, here I am 6 months later, unsettled and looking for answers.

A couple weeks ago I posted a survey on my yahoo group for parents with kids that have Doose. I asked them a lot of questions about what their kids are eating and if they have any external symptoms that they might not have thought to relate to what they're eating. For instance, Hewitt has huge tonsils, sounds nasal (most likely swollen adenoids as well), is constipated a lot and gets eczema when he has a lot of dairy. I've been doing a lot of research and discussion with a friend of mine that knows a lot about the effects of diet on our bodies. A lot of things Hewitt's Dr. has no problem admitting she doesn't know much about because she wasn't trained in it. I got over 20 responses and about 90% of the kids eat a lot of the foods I asked about and have one or more of the symptoms asked about! I was pretty blown away by the results and I'm now researching and praying about what to do with them.

We cut dairy out about a week and a half ago...hadn't seen much change in the 10 or so seizures we were having. Well, today - as I write this at 4:00pm I can say that I've only seen 1 seizure today. ONE! It's amazing. I still want to make sure it's diet, but feel pretty sure that they're related. After a few weeks without dairy, we'll reintroduce it in a small amount and see if it makes a noticeable change.

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!

Blasted Bubble Tea

We have done our best to cut refined sugar out of Hewitt's diet for the last 2 1/2 weeks. We hadn't seen any definite improvement initially. But we are beginning to wonder if it's making a difference. The last 4 or 5 days he starts out having a rough morning and then usually around mid to late afternoon things have slowed down and we hardly see anything for the rest of the afternoon and evening. But, yesterday was the first day of Hayden's vacation and we went out to eat to celebrate. After dinner we went to Bubble Tea...one of the boys' favorites. (fruit smoothies with fruity jelloish things at the bottom) We let Hewitt have one, and he only drank half. I can't even imagine how much sugar is in those things. This morning he had a short tonic clonic - mixed with something else because he was crying through the whole thing which has never happened before and it only lasted a minute. He hadn't had a tonic clonic for well over month. So, maybe there's something to the whole sugar intake thing. We're still letting him have natural sugars. (fruit, agave) I guess only time will tell.

A Helping Hand

I had a meeting with a social health person a couple weeks ago. I had Hewitt and Titus with me at the meeting and had the opportunity to share with the woman, what we've been going through with Hewitt. She had the opportunity to witness what we've been dealing with (he was having a lot of drops that morning). She was very sweet and about a week later I received a lovely message on my voicemail from her. She said she couldn't get my adorable little boy out of her head and she wanted to do something to help us. She made a referral for a public health nurse to come meet with us. She said the nurse would be available to help us find our way through the system.

So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.

Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.

Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.

A Breather

Some pics from breakfast this morning. Yesterday, Hewitt was pushing a big plastic car on the floor in the nursery and had a drop, faceplanting onto the car. We took him to the ER later that day to make sure nothing was broken. The bruise kept creeping up his face and it was so swollen we needed to make sure! We decided to give him his "rescue" med yesterday afternoon. He was having so many drops it was hard to keep him safe. We were also hoping it might break the cycle of all the seizures he's been having. It has given us a temporarily breather! We haven't seen a seizure since we gave it to him yesterday. I know it's temporary, but it's been a nice break nonetheless!

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.

More seizure video

It's still not great because it's from my phone. I need to start using the video on the digital camera. I just don't have the batteries charged often enough! This is a typical stretch of what they look like. These are myoclonics, myoclonic astatic and atypial absence. The myoclonics are the arm jerks, the myoclonic astatics are when his head drops forward, and the atypical absence you can't really see, but his eyes are staring off and he's twitching. They often happen together in groups like this.