New Blog

Unfortunately, my little guy’s battle with epilepsy is not over.  Even after 3 surgeries.  😦

I haven’t been blogging like I did when he was originally diagnosed, and I miss it.  I recently received a couple of really sweet emails from other parents of babies with I.S. who had found my blog. They shared some very kind words which encouraged me to start blogging again.  It’s quite therapeutic for me, and if I can help other families at the same time, well it’s a win-win.  When I started to sit down to write though, I realized why I hadn’t been keeping up with it.

Privacy.

Yes, I know, that’s a weird worry to have when you’re posting online for all the world to see. The difference now is that I realize that I still have hope that someday my little guy will grow up, go to school, graduate from college, get a job, have a girlfriend, marry etc.  I don’t know if or when any of these things will happen, but I still have hope that they will, and I don’t want someone (a future bully, a future boss, a future girlfriend, etc) to google him and inadvertently find out all this personal stuff about his rough start at life.  He is a warrior and should be immensely proud of himself for everything he has endured.  But he should be the one who chooses to share his story if and when he so chooses.

So, long story long, I want to continue blogging, but I want to do so in a way that can help other parents going through this but without using any personal details.

If you are another parent going through this battle with your child, please feel free to email me if you want to keep up with our story.  I’ve been on both ends, so I know from personal experience that these kinds of blogs are good for both the blogger and the reader.

If you are a friend or family member, please feel free to reach out to us with questions about how our little guy is doing.  It’s actually quite nice when people take the time to reach out, because so many of our friends and family don’t.  I know it’s because they don’t know what to say. But, for us, or anyone you know going through something like this, it really doesn’t matter WHAT you say, just that you check in once in a while.  It can be very lonely when people just stop talking to you because they don’t know what to say, and it’s already a pretty lonely situation.  But, I guess through this journey, we’ve learned who our real friends are (and to be honest, it has been a bit surprising).

Thanks to everyone who has followed Z’s story.

 

Advertisements

Surgical Update: 7+ weeks post-op

I am heartbroken.
My 4 year old had a resection of his left parietal lobe the Thursday before Thanksgiving.  His neurologist and neurosurgeon both commented about the dramatic difference in the subdural grid EEG from before the resection versus after. 

The pathology of the resected tissue showed a lesion, which everyone seemed pleased about, since it hadn’t showed on the MRI.

Everyone seemed confident they got it all. 

But, the seizures haven’t stopped. 

Actually, now they are more often than they were before. Today was the 3rd in 3 days. Before, it was always 5-10 days apart.  His right arm seems noticeably weak afterwards, which I never noticed before.

So, after putting my little guy through all of that… After putting our whole family through that, it’s just heartbreaking that it’s not better. Possibly worse?

So, we’re starting back on the M.A.D. (modified Atkins diet, a less restrictive for of the Keto medical diet) and may be upping the dose on one of the 3 AEDs (anti-epileptic drugs) he is still on.  

It makes me angry. My little guy doesn’t deserve any of this. 😢. I just don’t understand. We did all of this to help him. How can it possibly be getting worse?

Update

I know I haven’t updated this blog in a long time, but our little lovebug started having seizures again this past November.  It was hard to see him go through it again, and we have been trying everything to get them to stop.  Unfortunately, they haven’t.  He has now failed multiple medications and the medical (keto) diet, not to mention countless other changes we’ve made and tests we’ve done.  But, after multiple hospitalizations, we have discovered that he is a good candidate for surgery.

We met with the neurosurgeon yesterday for the first time.  I had been stressed about this appointment for weeks.  But, I actually felt a lot better after speaking to him.  The good news about it (without getting too technical) is that the surgery has a good chance of stopping all of the seizure activity, which stops his brain from being damaged, and also stops the seizures from eventually damaging other parts of his brain.  The other good news is that younger children are good candidates for this because their brains are able to fairly easily transfer the function from one side of the brain to the other.  It’s actually quite amazing (when you aren’t thinking about how it applies to your own child).

But, after the discussions with our neurologist and the neurosurgeon, we really feel like this is the best option… and really the only option for any kind of possible resolution.  Although we are confident in the decision, it still just sucks to have to choose a surgical resection for your child.  This isn’t like an appendectomy or even like repairing a hole in the heart.  It’s extreme.  But we are trying to give our little lovebug every chance for a long and happy life.

It will be a 2-part surgery, and the total hospital stay will likely be under 10 days, with a month-long recovery at home.  The surgery will take place in November, so please keep our little lovebug (and our family) in your thoughts and prayers.   Thanks.

An 11-year-old’s view

Sometimes I forget just how this IS journey with my son has affected my daughter, who is now 11.  But recently she wrote this article , and of course, it made me cry.  She has been such a tough little nut on this journey, and although I wish I could have protected her from all of it, that just wasn’t possible.

When my brother first started having seizures, I was 7, almost 8.  My mom saw something and we did not do anything the first time because we did not know what it was.  The second time became more serious.  I was playing with my friend, my mom hopped in a car and drove away.  I had no idea what was going on.

I kept asking what happened.  Truthfully I was so worried.  He was my only sibling and I did not want anything to happen to him.

Wean

We just met with Zane’s neurologist for a more in-depth conversation about weaning him off his last med, Topamax.     On this day before Thanksgiving,  I’m thankful we went. She was much more definitive about explaining that the side effects of the medication may be doing more harm than good, with respect to his development. So, we are now going to be progressing with the wean.

I’m still insanely nervous and will be looking into some new purchases that help detect seizures or at least a better monitor/camera for his room. But, I do feel better about it after our meeting.

It’s going to be a scary and exhausting few weeks till he’s weaned, and for months afterward, when the likelihood of seizures coming back is highest.  So please keep Zane in your thoughts and prayers!

Flyer for school / daycare

I just wanted to share a flyer I found online in case you want to use it as well. I’m going to print one to keep at home (for the babysitter) and one for his pre-school. Because I.S. babies are prone to developing other seizures, I just want to be sure his caregivers know what to look for and what to do. I’m also going to put our phone number and the doctor’s phone number on it, and I might even write a note to remind them to use their cell phone to video it, or if not video, at least keep an eye on the clock and time it.  Here’s hoping they NEVER have to refer to it, but they’ll have the info, just in case.  Thankfully our pre-school teacher has dealt with this before, so it makes me feel a little more confident that she’ll know how to handle it.  😉

(http://www.epilepsy.com/sites/core/files/atoms/files/FirstAid1.pdf)

Freaking out

Tomorrow Z goes for his next VEEG.  I’ve been hoping that if everything looks good, it might be his last. That would signify that this journey… this nightmare… would be over.  Well, at least this part of the journey (since therapy will continue indefinitely).

I remember feeling as if it might never be over. Ever.  But he has come so far. I can’t believe he is 2 years seizure free.  He has worked hard and he’s incredibly lucky to be where he is today.  He’s amazing. I want to be able to forget it all and move on and enjoy my little boy.

But, then I get news today that another little guy who had IS who has also been seizure free for 2 years just had the seizures return.  😦

I don’t even know how to process this except to cry for him and his family.

I know in my head it doesn’t do any good to worry.  I know in my head that just because it happened to someone else, that doesn’t mean it will happen to Z.  But sometimes my head and my heart aren’t on the same page. 

My heart is breaking for this little guy and his family, and I just can’t help but worry about the decisions we’re making for our little guy.

For now, we’ll proceed with the VEEG and just see what that tells us.  Then we’ll just have to have an in-depth conversation with his neurologist to see what she recommends before we move forward with the wean off his final medication.  

In case you’re wondering why we wouldn’t just keep him on the medication, I should just mention that you really shouldn’t ever medicate just for the sake of medicating. You wouldn’t take Dayquil or Advil every day for the rest of your life for no particular reason, right? Well, these aed’s (anti-epileptic drugs) are meant to alter your brain activity in some way. They all have side effects of some kind (some major, some minor).  They are pretty hard core.  The one he’s on now can affect appetite, and it commonly causes a brain fog, from what I’ve read from adults who take it. Imagine being a growing, developing boy who is learning at a crucial developmental age, all while in a deep brain fog.  He’s doing amazing as is, but is definitely still behind his peers.  So, I hate to medicate for no reason,  but I also don’t want to wean too soon.  Ugh.  I hope that his neurologist will help us make the right decision for him.

For now, I’m going to keep sending happy thoughts and prayers to the other family, and I’m going to try to make the best of it during our overnight stay in the hospital.  I’m going to TRY to avoid the emotional roller coaster and stay positive.  Wish us luck!