Hewitt Update

Okay, well I have good news and bad news. I'll start with the bad news first.

Hewitt was still having seizures. That will always be in the bad news category (duh). He is mostly having absence seizures. The Dr. said around 4:30am they started increasing until he was having very short ones every 10 seconds after waking up. They seemed to taper off after a while, but I was definitely bummed to hear they were coming every 10 seconds.

Good news. In his quick check through his EEG he didn't see any myoclonic seizures. These are the ones that make his arm jerk involuntarily that I thought I had seen an increase of. He did say he could see why, that he was making some jerky movements with his arms but he said they were NORMAL little boy spasticness. I loved hearing that and I probably wouldn't have believed him until he showed it to me on the EEG reading.

The Dr. spoke at length with me about how Hewitt is doing in school and behaviorally. This is probably my biggest concern right now. He's behind. I know he's intelligent, that's not my concern. It's just getting the information to stick in that sweet little head of his. Hopefully this summer I will be able to spend more concentrated time working with him. His Dr. had a lot of great ideas of ways we could help him and also suggested finding a child psychologist to help us with some of the behavior modifications.

This is probably one of the hardest things we are dealing with right now. It is really hard to watch him with other kids. He really struggles with boundaries and appropriateness and it just breaks my heart to watch him struggle through this. I know God will use it as part of his story - but it hurts my heart. And, sometimes it breaks his. So, we will continue to fight for him this way. ..trusting that there is a purpose for it all.

Our next move is to remove the Keppra from his med routine. Just typing that makes me feel all fluttery and nervous. Hayden and I have talked for years about whether or not this med is contributing to his behavioral issues. It's so hard to know what does and doesn't at this point. He's been on this med since the very beginning though...April of 2008. So, we will take the next 8-9 weeks and very slowly wean him off of that. This is what I would really appreciate prayer for more than anything. This could mean that we might be dealing with exaggerated side effects for the next 8-12 weeks as his body adjusts to not having it. I feel like this is a good move for him, but I'm still nervous about it. We have a medicine picked out to add if we need to add one. I'm hoping we can just stay on the one, but we will see. The Dr. said that they don't treat absence seizures very aggressively at this age. But, if he's still having them when it comes to driving age we will revisit that. So, part of me is excited for this change and the potential for his behavior to normalize but part of me is terrified that removing it will throw us back into hundreds of seizures a day again. Deep breaths - lots of deep breaths. We would covet your prayers for this transition. It has potential to be a very difficult one.

It feels good to have a plan in place and this appointment behind us. We have a busy ministry summer so I'm excited to let go of the school year and jump into summer!

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!!!!

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!

 

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!

The New Black Cast

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

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.

Catching up

We had our appointment at Bastyr on Monday evening. Things went well, the care was great...but we didn't seem to make much progress or change much about Hewitt's treatment. They did a little bit of craniosacral therapy which was interesting. They recommended some supplements that I could've been doing on my own. They're ones that are talked about in a lot of different naturopath pages. I didn't buy any of them, they were Vitamin E, D and some B vitamins as well. I'm not sure what I was expecting...maybe a little more explanation as to their perspective on why this is all happening. They agreed that the removal of the refined sugar and dairy was a good move and we talked about getting further food intolerance testing done to see if anything else is irritating his system. So, that was the extent of that. I have an email address for the Dr. we were seen by. I think I will email her my concerns, observations and ask if she knows of any studies done. We saw two students initially and she closed things up at the end of the appointment. I asked the students about the research but they didn't have much for me. Maybe the Dr. we saw will!

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!

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!

Bastyr

I FINALLY made the call to Bastyr University today. It is a natural medicine university in Bothell that has a great reputation and is respected in the medical community. They were able to get Hewitt in on October 6th with one of their physicians! We are really excited to finally talk with someone that will at least acknowledge that nutrition is affecting the seizures and get their input on our changes and hopefully even lend an ear to all of my research findings. My desire is for a medical student or a physician who does medical research to see the importance of this and take it on as a research project. I know it might sound far fetched, but I don't think these discoveries we've made are meaningless. Especially when there are so many children suffering from this same syndrome. So, between now and October 6th I need to conduct another survey on my group of parents (or about 20 other parents with non-doose kids) and have them answer the same questions for their non-doose children. I want to have this all charted out when I go in and I think it will hold more weight if I have a control group to compare it too.

Hewitt is still doing well, although he did have a few seizures last night and today after we accidentally gave him vegetable broth that had sugar in it. It's crazy. I have been saying for the last few days that I don't know if it's really the sugar/dairy connection...maybe it's something else. It's not something you really want to test out though because who really wants to see another seizure? So, when he had one at the dinner table we were scrambling to see if he had eaten one of those two things...and sure enough, he had. We had another opportunity to test our theory, this time involuntarily. I believe it now though.

By the way...there is sugar in EVERYTHING! It's really quite ridiculous.

The Appointment

Oh boy...where do I begin? I will do my best to control my virtual pen here as I share about our appointment today. Should I start with her lack of interest and friendliness with me and especially Hewitt? Maybe I should start with her condescending way of sharing information with me...or maybe I should just say it was NOT AT ALL what we were hoping for and leave it at that. In summary, everything I listed in the last post she was the exact opposite of. It couldn't have been farther from our hopes. So, now what? I am thinking maybe I shouldn't expect anything more form a Dr. specializing in this field. Maybe I should be looking for a more naturopathic Dr. like I've thought and talked about doing for so long and haven't done yet. Maybe this was just the push that I needed to do just that.

On Hewitt's end of things, he did amazing for his EEG this morning. He cooperated beautifully and things went smoothly. This afternoon he wasn't as cooperative, but I wouldn't have been either if I were him. She didn't even say hello to him when she walked in the room. She hardly acknowledged his presence, with the exception of staring at him like he was a parasite everytime he butted into our conversation like any normal 3 year old would do - bored out of his mind sitting in a Dr.'s office. I almost welcomed his fiestiness with her. I think I would have been sad to see him be nice to someone who was so rude to him. WHY WHY WHY do some adults not get that children are deserving of the same kind of respect that they are? And 10,000 times more WHY would you specialize in pediatric epileptology if you don't especially care for the little guys presence? It makes no sense to me whatsoever. Remember, this is me under control talking about this woman. NEEDLESS to say, we will not be returning to see this Dr. for Hewitt's care. We might try to get back in with her partner. But, for now, I think we'll continue with diet and if things start to get really bad then we'll reconsider an epileptologist. In the meantime I have a number of a nutritionist in Redmond that I will be contacting asap!

Thanks for your prayers. Although it didn't turn out like I had hoped I really believe it was because God has something else for Hewitt. Maybe another Dr., maybe another route entirely. We shall see!

still doing well

Tomorrow is the day we were supposed to go see our third pediatric epileptologist in the area. As it turns out, he's sick. He does, however, have a partner and we have the opportunity to see her tomorrow instead. It's not quite what we were hoping for, but we're trusting that God knows best - and leaving it at that. I do have a couple prayer requests for tomorrow.



The first: They have requested ANOTHER EEG. It's at 8:00 in the morning, he has to be sleep deprived and it's downtown Seattle at Swedish. We've got a few things working against us. First of all, they asked us to get him up 4 hours early...that is absolutely not happening. What on earth would I do at 3:00 in the morning with Hewitt that could possibly keep him awake? Our plan is to keep him awake as late as we can and then wake him up at 6. I don't think he'll have a hard time sleeping. But, this is the 3rd EEG he's had in 2 months, so I'm hoping he won't be too weary of it all! Also, we'll be in prime traffic time, so we're going to have to leave pretty early and he CANNOT fall asleep in the car, but only one of us can go, so that should be interesting. After the EEG, we come home and then go back downtown at 2:00 for our appointment.



The second request is for our time with the epileptologist. After our recent diet changes and results I am praying for someone that will be open to what we've discovered, and a desire to pursue why it's worked. We really hope we can help other people with this discovery. Our heart's desire is to have a physician that will see Hewitt as a person - a child who is hurting, missing out on a lot of life, and have compassion for him. We are hoping she will be a person that isn't so caught up in her knowledge that she isn't open to learning something new and someone that wants to work with us, not just tell us what to do. WOW! Not a whole lot of expectation, right?! Maybe I should print that out and take it with us...did I mention I was hoping for her to also have a cure for epilepsy that didn't involve horrible medicine? It could happen. Thanks for your prayers. I will update again after the appointment and EEG.

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!

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.

The Helmet

So, some of you have asked if he's gotten it yet. They accidentally shipped the wrong one so this is him with a sample they had at Children's. The therapist rigged it up so it would fit him until his comes. It has already saved his little noggin a few times! I did really good until we stopped by the church to show Hayden - and then I lost it for a minute...it's not something I ever dreamed I would be putting on him, but I know it's for his good and it will protect him.

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!

Little Trooper

I was thinking about Hewitt today and all of the things he's gone through in the last 2 months...although he doesn't know when the seizures are happening he is fully aware of all of the Dr.'s visits. So, I was making a list in my mind of all the things he's had done. I am posting it partly for my sake so I don't forget, but also to say "good job Hewitt!" he's been a little trooper through all of this.

Since March 8th -
We've been to the ER 5 times, twice in an ambulance, had 3 appointments with the pediatric neurologist, 2 with his regular pediatrician, a ct scan, an EKG, an EEG, an MRI, about 4 blood draws, toxin blood screen, urine screen, glucose check, x-ray on his shoulder, and more seizures than we could count...our estimate is over 1500. And, of those, 17 were tonic-clonic (grand mal) type seizures in a period of 5 weeks. Whew! I'm exhausted all over again just reading about it. We are now 6 days seizure free. And, that means EVERYTHING. No head drops, myoclonics, NOTHING. All I can say is Praise God!