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.

My Infinite God

Two weeks ago at church a couple friends of mine sang "Great is thy Faithfulness" inspired by another mom at our church who just found out she has cancer and just started all of the chemo and process of fighting it. I found it slightly ironic it was the song my friend, Sarah picked. When all of this started with Hewitt I stopped sitting downstairs with Hayden and the boys and started sitting in the balcony by myself to be closer to the nursery. (I didn't want to be more than a few steps away if something happened). It was kind of like a safety net, but it was also a place for me to have it out with God every week as I tried to sing worship songs to Him, but I was so hurt and angry, half the time I just cried. This song, in particular, I couldn't get out.

The words:
Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.
Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see. All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

I didn't feel like God had compassion on us, I felt hurt, helpless and alone and I couldn't see beyond my today. I certainly didn't feel like I had strength for the day or hope for tomorrow - I just wanted to turn the clock back and for all of this nightmare to go away. I wasn't looking at it from an eternal perspective. I wasn't trying to see God's purpose in it, I didn't even care. I just wanted it to stop.

I sat downstairs and sang this song 2 weeks ago and I sang it with all my heart to God. And, although I can't say now that I understand why God let this happen to Hewitt, and I probably never will. I can say that I am learning things about God that I thought I already knew. I always knew God was bigger than me. I didn't always process the fact that in that bigness, He is going to do things that I don't understand. I have missed that the way I process things in my finite mind doesn't compare to how His infinite mind works. So, while I process this experience with human understanding, God sees it with God understanding. Something I will never see while I'm on this earth. So, instead of trying to understand why it's all happening, I am resting in the promise that God does have a plan for my life and a plan for Hewitt's and that plan is better than mine!

and Hewitt has been seizure free for the last 2 days again.

Epsilepsy

The last few days Hewitt's interaction has been so encouraging. I think I had forgotten so many of the things he was doing before the seizures hit. He's been saying some funny things. I think one of the cutest comes when we're reminding him to put his helmet on or sit where the blanket is at the table. He says in a very matter-of-fact, (and assuring at the same time) voice - "I have to wear my helmet because I have epsilepsy and I might fall and hit my head." or " I need to have this blanket here because I have epsilepsy and I hit my head sometimes." I love the EPSILEPSY. It's so funny...we can't even correct him, because it's amazing that he is even trying to explain it to us. He's been so bright, talkative, imaginative and fun this last week. We have been praising God for this change.

starting a new count

So we broke the streak. Hewitt had this tiny little seizure in bed with me this morning but then didn't have anything for the whole rest of the day...I wish I could just pretend it didn't happen, but I can't. So, we will start our count over. (hopefully tomorrow) He is getting fiesty again, so I think this is a good sign? I say that with a question mark because it seems like he does this as he's coming to cognitively. We moved him into Lincoln and Everett's room today. I am praying that this will be a good move and he won't just be the pesky little brother.

Day 3 and counting!

Another seizure free day! It's getting harder to get him to wear his helmet and scooch on his bottom when he's not wearing it. I want to let him take it off, but it's all still so fresh. He still has a slowly fading black eye he got last week from dropping on the toy box...it just doesn't seem worth it yet. Now that I think about it, wasn't I just wishing for him to care about the helmet a few posts back? God knows our hearts!

Teriyaki

We took Hayden to Ichi Bento for lunch today. (It's a local teriyaki place). While the kids and I waited for him in the parking lot, the following conversation manifested. I should note, we were listening to the Christian radio station.

Lincoln says in a sincerely syrup sweet voice "Mom, do you know what my favorite word is? It's Christ. Christ is my favorite word."

Everett chimes in, obviously trying to one up Lincoln: "Mom, do you know what my favorite word is? It's God."

Hewitt eagerly joins the conversation: " Mom, guess what my favorite word is?" long pause "my favorite word is" another long pause "teriyaki"

And, that, in a nutshell is Hewitt. He wants to be a part of things, but could care less if he's different. This serves him well these days as he eats much differently than the other 2. I'm sure it will serve him well in life! I love it about him. These guys are so funny. I wish I had something where I could just secretly record some of the things they randomly say. In their pursuit of Godliness, and learning "how" to be a Christian, I love hearing what comes out of their mouths!

We are at the end of our SECOND seizure free day! Woo-hoo.

A lovely day

Today, Hewitt had his first seizure-free day since the beginning of May. And, while 4 months may seem like a long time to wait I know many people that wait years for one day without something! So, we are thankful and hope it continues.

the zoo

Monday, Hayden and I left for Cannon Beach, Oregon. We wanted to spend some fun family time together before we left so we took the boys to the zoo on Saturday. We had a great time exploring and seeing all the animals. There's so much to see, it's more than a day trip especially with Hewitt and Titus' ages. We've talked about getting a zoo membership, but I think this solidified it for us. It would be nice to go and take in a little bit at a time so we could really enjoy it all. Hewitt had a great day and only had a couple drops all day! It made for such a relaxing time. The boys are staying with my parents in Olympia and we are at Cannon Beach Conference Center for a pastors and wives retreat.

We look forward to going home tomorrow and seeing them. It's been nice to be away, but they ended up being sick while we've been gone, so we really want to get back and see them all! It also seems like we've been going a lot for the last couple months and for once, I actually want to be at home (i'm not much of a home body) and I'm looking forward to the routine (something else I resist) of school, AWANA, things returning to a schedule.

Pray for Hewitt that he doesn't catch this tummy bug his brother's got. I had it the first day we were here and it was miserable. An hour after we left my parents house we got a call and he had a big seizure. The first one he's had since the end of May! A lot of times kids can have breakthrough seizures if their fighting something or sick. I'm hoping his body already fought it off and he doesn't have anymore! So far so good. He hasn't been sick once since this all started so we don't really know how he would react to illness if he gets one. I know it's bound to happen, but I'm happy to avoid it if at all possible!

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.