Myoclonic seizures vs jerks

Some time before LJ’s surgery but after his birthday, we saw his neurologist.  It was just our annual appointment but between visits, we had raised LJ’s dose of Clonazepam because his jerks were becoming more frequent.  Plus, his therapists at the Rehabilitation Institute (RI) felt these jerks would start interfering with his ability to do things independently. 

At our last visit, LJ was diagnosed with myoclonic seizures.  Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. 

I expressed the therapists concerns, along with my own.  They seemed more frequent when LJ’s Botox was wearing off, or when he was really tired and hadn’t had his medication in a while.  I’m not sure what I was hoping for, but then the neurologist started mentioning Keppra.  I had mixed feelings about this but he reassured us that we’d only start the Keppra after the EEG verified they were indeed seizures.

The following Monday (I can’t believe he got us in that fast!), Louie took LJ to get his EEG done.  The nurse asked him to stay afterwards because our neurologist wanted to talk to him (which just shows me how awesome our neurologist is… I mean, even the nurses were surprised he was coming down).  He told Louie that the neuro-something (I’m not sure what they’re called) had to review the results, but he did not think LJ was having seizures.

When falling asleep, does your body ever jerk, startling you awake?  That’s a myoclonic jerk.  Hiccups are also apparently a myoclonic jerk.  Imagine how annoying it would be to have these jerks… all.the.time. 

I suppose I should have taken this as good news but all I could think was… now what?  Before, when we believed they were seizures, there was an answer.  And as much as I didn’t like the idea of more medication, there was something

So I did what many other mothers do.  I googled it.

Turns out, we’re already doing the treatments that many sites suggested.  He’s on the exact medication, albeit the lowest dose, and he receives Botox.

Wait, I thought.  Botox?!

I guess it makes sense.  From what I gather, a jerk is a nerve reaction as opposed to a seizure which would be a reaction to electrical charges in the brain.  I get why it’s happening to LJ; he had significant brain damage.  In fact, everyone expected him to develop seizures.  Hell, I’m sure they still expect him to.

I need to do more research on them, although I have a feeling I won’t get too much more information then I already know.  The most frustrating thing when dealing with things like this, seizures, hell, even depression, anxiety… it’s just a PRACTICE.  The brain is still a very unknown territory, especially when it comes to things like damage.  And then there’s conflicting arguments, for example HBOT (hyperbaric oxygen therapy) where many many parents swear by it, but just as many, if not more doctors say it’s a load of crap and probably just a scam, with how much is charges.  How do they know?  How do they know how the brain is reacting to this treatment?  No, it’s not an exact science, but neither are the drugs you’re prescribing my child. 

Which also makes me wonder how they read LJ’s EEG?  He will always have abnormal brain activity due to the amount of brain damage.  The EEG will never be “normal”.  Do they compare his results to “normal” EEGs?  Is that really an accurate thing to do considering the circumstances?  This reminds me of how they keep putting LJ (and all the other kids with special needs) on the same growth chart as typical kids.  In case you didn’t realize this, MY KID IS NOT TYPICAL.  Why they do this when there is a CP growth chart out there, I have no idea. 

Sometimes I get overwhelmed, thinking about LJ and his needs.  But then he’ll smile at me and it all melts away.  I know this is just one of many things we’ll have to deal with on Our Yellow Brick Road, but we’ll deal with it together.  He’s worth it.

Saying goodbye

This week will be hard.  We will say a lot of goodbyes and I know I’m going to cry.  A lot.  I have been already.

This is our last week of services with our therapists through Early Intervention.  This is our transition week.  We’ve gone through a few OTs, one PT, one SpP (speech) and 3 aquatics PT (although we can continue with our aquatics PT through insurance).  But it doesn’t mean anything in terms of how I feel.  These therapists have been through so much with us that I feel like they’re more than therapists.  They’re our friends.  I’d even say they’re part of our family.

These women, Kim, Mindy, Teresa, Becca, Debbie, Diane, Tresy,Amy, Susan, have done more than provide us with therapies and routines for LJ.  They’ve helped us get through one horrible appointment after another.  They’ve given us different perspectives of LJ’s behaviors.  They’ve talked us through some frustrating diagnoses.  They’ve supported us as parents, grieving with us, understanding our situations, giving advice, and even putting us in our place (by that, I mean not letting us dwell on negative feelings or whatever the situation called for). 

And while I’ll never forget any of these beloved women, Kim, LJ’s vision teacher, will always have a special place in our heart.  She has been with us since LJ was only a few months old.  She listened to me rant and rave about doctors, appointments, therapies, and other unrelated things.  She was honest with her opinions.  She was an advocate, not just for LJ, but for us.  And while all of our therapists did this, she’s been with us the longest.  She knows him.  She knows me.  She knows the pain that we’ve gone through and has seen us through it. 

The best gift she gave me was showing me LJ.  Not his disabilities, or even is abilities, but him.  She helped me see past all of his equipment, delays, diagnoses, and helped me see his beautiful personality.  This is something I could never repay her for.  Where I once would constantly worry about what the future would hold, I am now able to enjoy the here and now.  I’m able to enjoy my son, for who he is.

I’m going to miss (and already do miss) these wonder ladies who have made such an impact on our family’s lives. 

LJ would not be here is it wasn’t for each and every one of our therapists.  He wouldn’t have made as much progress as he has.  He wouldn’t be where he is today, without them.

And neither would I.

finding normalcy

It’s been awhile.
 
I’ve been doing a lot of work. Work with my family, with my home. With my depression.

 Sometimes it feels like an endless battle. Like I’ll never be “normal”.

 And maybe I won’t ever be. But I’ve learned that past few months to spot my signs… and to get help before those signs blow up in my face.

 This bout of depression was triggered by Noah’s wonderful milestones. He’s been hitting many milestones early! He’s just 9 months and saying “mama” and has been pulling himself up to standing since he was 7 months.

 It made me mourn for LJ. It made me relive moments I thought I had gotten through. In turn, it made me angry that I was still grieving.

 I think I will go through the grieving process of sorts, a lot throughout LJ’s life. I’m so proud of him and his strength; he’s truly an inspiration. But no mother wants to see their child struggle. No mother wants to wonder if their child is in pain or if this is “typical” child behavior.

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To end on a good note, we got our stander!! Thanks so much for spreading the word and/or your donations. Or even just thinking about us. It’s a GREAT piece of equipment that LJ deserves and he loves it. I’ll try to post some pics of it soon (with the camera I got for Christmas!!)

Surgery Day

Everyone give him a kiss, the nurse said as she swiped her card and opened the double doors.

Louie leaned down and kissed LJ, who was fussing in my arms. Grandma and Grandpa (Louie‘s parents) followed his lead and bid their goodbyes.

And then, before I could kiss him, the nurse swooped him from my arms, taking his blue elephant with her and quickly walked away. I could feel the tears burning my eyes.

We had gone through check in and all the possible things that could happen, though we didn’t want to hear it. I didn’t want to have any bad energy. Our normally inpersonable doctor, was quite cheerful (probably because she was within her element). It was actually comforting.

We quietly made our ways downstairs, to the surgery waiting area. After settling in, we were able to distract our protective instincts by discussing the Olympics (and how wonderful Phelps is).

I texted my BFF, my mom, and my aunt to let everyone know. Aunt K called me to tell me we were in a prayer chain and to ask if she could talk to my dad. I told her I didn’t mind.

At 11:15, the doctor came to talk with us. The surgery had gone well and he was in recovery. She warned us his eyes would be red and he would have bloody tears. In an hour and a half, we could come up and see him.

Grandpa and Louie went to eat and of course, they called us up early. I didn’t wait for them, as I practically knocked doctors down on the way to the elevator. We stood in front of the elephants and waited for LJ to come out.

A nurse wheeled a bed through the doors and asked to see my band. LJ was lying there, covered by a thin, white sheet. His eyes were closed, swollen, and red. I shuddered, seeing the blood on his nose.

We went through another set of double doors, where there were curtains closing off sections for privacy. Inside the “room” was a familiar recliner and a single chair, with room for little else.

I sat in the chair and LJ was placed in my arms, IV line and all (too familiar). LJ fussed quietly as Grandma and I attempted to soothe him. When the nurse took his line out, he was able to be calmed.

He’s resting at home now. I’ve gotten use to the blood in his eyes and he seems to be handling it pretty well. I can already see that his eyes aren’t wandering, though he’s probably seeing double due to the surgery. I’m thankful, relieved, and excited. And maybe a little exhausted.

I want to thank everyone for there well wishes. It means a lot to me to have your support and we’ll take every bit we can get. That’s why I made sure to let you guys know, as soon as we got back.

Have a good weekend, all.

Twitter, Reader and Other Nonsense…

Last week, I started working on my son’s birth story. In my birth class our instructor told us that a mother’s way of dealing with the birth, especially if it didn’t go as planned, is to tell this story over and over until they feel better. This was not the case with me.

No birth plan ever pans out exactly as you’ve written. My son’s birth story, went nicely up until the end. At least we thought it did.

I kept my story bottle up for a long time. It hurt to think about and especially hurt to talk about, especially with all the updates I was constantly giving people. I hate thinking about what my son went through and the feelings of helplessness I had.

But that was how my son was born. Immediately thrown into life’s challenges. That was how he was brought to me and into our lives. And while I mourn the birth and the bonding I didn’t quite get, I cherish that day and am so thankful for him and his health.

Also, I’ve signed up for Google-reader so I can add a lot more blogs to my daily read. I’ve been going through a lot of people’s blog rolls and there are tons of good ones out there. I also got myself onto Twitter, though I can’t quite figure it out. Which is silly, because the site seems pretty simple. I’ll update my page with it later.

The worst news this week? Debbie is accepting a new position and will no longer be our therapist starting sometime mid-June. Which is good for her because she hasn’t got a raise in 12 years but sucks for us because she wasn’t just an O.T. She had so much experience that she generally worked on everything and she loved LJ. She was always doing extra things at home to help him succeed. We’re going to miss her so much and we’re going to have to get use to someone new (and them get use to us).

The best news this week? We have our appointments with our new pediatrician set up and their office sounds pretty awesome considering they take a lot of medicaid patients and I’ve heard non stop rave reviews over our particular doctor ever since we got accepted into their office.

There is still a ton of crap that needs to be done. Appointments, harassment (about the appointments they’re not calling me back on…), maybe some stalking, vacation to prepare for, surgery to also prep for (mostly that has to do with me and my emotions), Rockfest, but most importantly, LJ’s FIRST birthday (I am going to start crying now…GOD I am more of a wuss then before!).

So any idea for themes for first birthdays?

Mommy needs a shopping spree…

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