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 and Titus Update

Sorry for the delay on this. Things have been crazy around here. Even more so than usual, if you can imagine that.

Once again I am feeling thankful for God's hand on our search for a neurologist back in 2008-2009. He was a comfort to me in the hospital with Titus, assured me that what he was dealing with was common and really put my mind at ease. He is funny, caring and brilliant. I am so thankful for him! If you are in Seattle area and you need a pediatric neurologist, I HIGHLY (yeah, I shouted that) recommend Dr. Marcio Sotero.

Titus: The EEG showed that Titus is not having seizures. The neurologist explained to me that they're tics and the only reason we even did the EEG was because of Hewitt's history. I am so thankful to have seizures ruled out. It's a huge relief and has cleared a lot of space out of my brain not having to wonder and worry. He did tell me to watch for OCD and ADD, as those tend to be issues that typically arise in children with tics. He shared some great information with me about how common it is for boys to have tics and that for a lot of them it goes away on it's own and never needs medical intervention. I'm so thankful to be able to move forward on this.

Hewitt: Well, he continues to have some seizures. They are almost always absence seizures but I do notice them and this does concern me. I still thinking I am seeing an occasional myoclonic seizure in his hands as well. We have a 24-48 hour EEG scheduled for him in June. The dilemma we are facing now is that he is as high as he can go on the medicine he takes for absence seizures. He doesn't tolerate it at a higher dose. So, if he is having as many seizures as I think he is, we will need a new plan. Right now, we are talking about a diet change for him that would include higher fats, low carb, no sugar. This would be a hard change for him, but I think we could do it and we might just do it for everyone if we do. I don't know, we'll see. We might end up being in the hospital for 48 hours this time. We are hoping to catch these episodes he has at night, so they might keep us in 2 nights instead of one. We won't know until we are there though.

Hewitt came and visited Titus on the second day in the hospital and I caught this great pic of the two of them. I love it so much. We had just ordered Titus' lunch and Hewitt and Titus were exchanging stories about hospital food as I took this pic. It was pretty sweet!

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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!

Our neurologist

I was just doing a little research on our neurologist and I wanted to share this video of him that I found on youtube.  Unlike a lot of the Dr.'s we saw before him, he values educating the parents...and while we've felt that from him in ALL of our appointments, it is cool to hear that it's part of his actual philosophy as a provider.  He is a unique guy and if you're ever in need of a pediatric neurologist, I highly recommend him!