Wednesday, September 9, 2009

Coming clean.

We are coming off of fourteen really rough days, which just ended this last weekend. Saturday, to be exact. As Kelsey said, it reminded us of the first few months of Owen's life, an uncomfortable, unpredictable, unwanted blur of sleeplessness, fear, crying, crying, crying.

We decided a few weeks ago, before leaving for vacation, that once we returned we were going to try to eliminate the last remaining seizures that Owen has, a "mere" 6-10 as he falls asleep for naps and at bedtime. Just to be clear, that's upwards of 30 seizures a day. This, of course, down from the 120+ a day that he was having before he began the ketogenic diet, a year ago last month. So, in conjunction with his neurologist, we decided to try Topamax, one of the few we've not yet plugged into his little system. The reason behind this renewed enthusiasm for pharmaceuticals - we are desperately trying to get a handle on his discomfort. Read "fussiness." Unpredictable fussiness. Every day.

I'm a firm believer in that one's perspective shapes one's reality. So typically, when people ask how things are going, my response is usually very positive. Great, good, very well... Because, well, they are. I have an amazing family. Two adorable boys who own my heart. A husband who is my soul mate. A business that is thriving and that reflects my values. But the last two weeks, I've been telling the other side of the story, because, well, I am exhausted. S o m e t i m e s i t i s r e a l l y , r e a l l y h a r d. I wonder if people are put-off or if they silently remind themselves to steer clear or, if they feel like one of my close friends did recently when I told her how difficult life with Owen can be. She felt relief. She admitted that she knew, suspected, and that she felt relieved that I had actually come clean.

Owen's irritability stems from his lack of sleep, his seizures and his GI issues. We can't seem to get a handle on any of these, try as we might. We've had well-meaning individuals suggest natural remedies for irritability, for seizures, for spasticity, for sleep, for his tummy. Just to set the record straight... THERE ARE NONE. At least none that are accessible to us right now. Owen has a seizure disorder and his brain is not like most other brains and he is on the keotgenic diet and we can't give him supplements, oils or herbal remedies. There is no tincture that will make his body stop jerking as he falls asleep. I don't mean to sound callous, but that's our reality.

So Topamax didn't work. Owen cried and cried and cried during the day and screamed at night. We carried him around like a wooden plank, his little arms and legs stiff and stretched out, his fists clenched, the spasticity taking complete control of his body. So we discontinued it on Saturday. A few hours later, he couldn't stop smiling.

I hope he knows that we are doing the best we can. The best we know how.


Shannon said...

Oh Stacy, I'm so sorry it has been such a rough couple of weeks. We don't deal with half the things that you guys deal with and it still a balancing act with what works, what doesn't work, what might work, what might not work but it might be worth the shot. All in the name of providing the best life for these kids of ours.

Owen loves you unconditionally, that much can be seen by the way he just gravitates towards you. Love for you emanates from that little boy. And from Elliot. You are the best mama that those two little guys could ever want.

If you ever need anything (ANYTHING), I'm really just a short car ride away or a phone call.

karengberger said...

I think it's freeing to be honest, instead of keeping all of the difficulties bottled up inside. Those who love you truly, will be there with you, because it is a privilege to share you REAL life. Those who cannot, or will not, face your life with you are welcome to go. You won't miss them!

I've been reading this blog for a long while, and you and Kelsey are some of the kindest, most loving parents I know. You have left no stone unturned in your efforts for Owen's well-being. Some things are just not given in this world. I don't like that fact, but there it is; we get to choose how we live with it. From my perspective, you are doing everything POSSIBLE for Owen. You surround your sons with love and the best possible care, and they surely know it. I hope you are relieved by "coming clean," and I hope that the removal of that medication will bring peace and comfort into your home.

Katy said...

Gee, Stacy, I'm so sorry that things have been sucking lately. I don't know exactly what you are going through but I do know that sleeplessness and seizures suck.

I also fee completely that you and Kelsey are giving that boy your all.

You know, Owen is two and I SWEAR to you that we went through a period when Charlie was two where my husband wanted to take him to the doctor because the tantrums were just OFF THE CHARTS. Everyone assured me that it was just the terrible twos and it was.

Call me any time if you need to vent or want to bat around ideas--you've got my number and Lord knows I'm a talking machine.

jennifer said...

I am sorry to hear about your rough go of it, even though I am a few days late in reading...But I too am relieved (almost) to know your frustrations and exhaustion. I go through many similar situations with my son and often read your journals wondering "why can't I be like her?", "how does she keep it together and keep such a positive attitude?" I apologize for sounding a bit selfish...

I do realize you have probably tried everything to help Owen's seizures without actually posting it on here, so forgive me if I am repeating something; the last medication we tried happened to be the one that worked with David (who has IS also). It takes a while to titrate up to effective levels but worth it with very little (if any) side effects. The medication is Lamictal. Very expensive but the generic just came out recently. If you have not tried this medication, please ask your doctor about it. It has done wonders for my child.