Trinity’s Health And Why I Haven’t Been Around
Trinity had a second seziure two weeks ago. Since my last posting about Trinity’s first seizure, she had an EEG, which turned out abnormal, meaning there was seizure activity in her brain. She had an MRI which, thankfully, was normal. Meaning there is no tumor or other cause. Also meaning that the seizure location, while active, is too tiny to see.
And, since that posting she had the second seizure. This time it was in her sleep so we didn’t see it. I just knew something wasn’t right when, after carrying her sleeping body into and back out of the car, sitting her next to her active and chatty older brother in said car, taking her temperature, and wiping her face with a wet cloth I still couldn’t wake her up.
Finally, with the nurse on the phone, I rubbed Trinity’s sternum, which I learned from the parademics after the first seizure. This drew a response and partial consiousness. Still, she laid there abnormally motionless, with her eyes dazed and her normal self far far away. The only movement or acknowledgement I could get from her was if I asked her if she was okay. She’d nod her head, make a barely audible squeaky sound, but that was it. According to the neurologist, her brain was “re-booting” after the seizure. She remained in this almost, but not-quite, conscious state for forty-five minutes. She doesn’t remember it.
We went to ER again where they gave her an EKG (which monitors the heart), which also had an abnormal result. So, in addition to all the neurological testing, we will also see a cardiologist next month for a more thorough heart exam. Okay, it’s called an echocardiogram but I don’t know if I’m spelling it correctly and I just don’t feel like looking it up. Sorry.
Hopefully her heart is fine (because it is quite unlikely to be related to seizures at her age) and with luck the EKG was just showing signs of stress.
A few days after the second seizure I took Trinity back to the neurologist who surprised me by prescribing anti-seizure medication. Already. I just wasn’t expecting that to happen so soon. Having done my research since that pill-prescribing appointment, I realize that we were quite thorough according to industry standards and it is typical to start medicating at this point, if not sooner. But with the doctor’s approval, we are waiting. He said he expects she’ll have another seizure within six to eight weeks of the last one (meaning four to six weeks from now. And yes, I am watching the days). At that point, if she has her third one, we really need to get her medicated.
If we are lucky, and she doesn’t have a third one for many months, she just might grow out of them. So right now, we are waiting. And I am reading. I am learning about seizure disorder and the medication. I am researching the various options. We are also trying to round up all the test results from three different institutions to send to a second neurologist for another opinion. Just to be sure. I hate to mess with my little girl’s brain. There can be side-effects to the medication. And the medication is only supposed to help. It doesn’t necessarily eliminate seizures. I think it has a fifty-fifty success rate if I remember right.
And that brings us to why I have not been blogging. The usual topics on this blog are often serious, heavy, or require research. My brain just doesn’t have the capacity to juggle these topics in addition to seizure disorder. For the sake of my emotional health, I need to spend my extra time with something that calms me down rather than riles me up. So I’ve been focusing on my number one love and sanity-saver: scrapbooking.
I will continue my monthly column with HNN and will post here to let you know when it installs. I will probably pop in with short blurbs on lighter topics here and there. And who knows, maybe sometimes I will even have something more typical of me.
No promises.
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September 1st, 2006 @ 5:12 pm
I hope Trinity will be fine. Be strong for your family.
September 1st, 2006 @ 5:20 pm
AgnosticMom:
My best to you and your daughter! Being a Neuro-psych I have had many an experience with all types of seizures. Sounds like she is having partial seizures (no convulsions). Luckily they tend to be easily controlled with anti-convulsants (depakote, dilantin, etc). It sounds like your neurologist did a thourough workup.
Take care of you, so that you are able to take care of her. I enjoy your writings very much.
FSM bless
HappyHeretic
September 1st, 2006 @ 6:59 pm
Just remember if your child’s brain is misfiring to this extent, “messing with it” might be the only thing to do. Dilantin worked for me just fine, with no side effects.
September 1st, 2006 @ 8:58 pm
I certainly don’t have advice for you, but I do feel for you and wish you and your family the best. I hope for the best — that everything works itself out over time and without the need for further intervention.
September 1st, 2006 @ 9:39 pm
Thank you for sharing your experiences. Since the first time Trinity had a seizure my wife (pediatric nurse many years) has asked me several times if I had heard any more about her. I’m well aware of the stress levels such experiences can precipitate. Let me compliment you on the way you have been working with the medical community. I would like to make some suggestions which you may be far ahead of already. My wife has been through three experiences with cancer. We adapted a strategy that I believe is applicable in general. The strategy is to make sure you have done everything possible to get every last bit of science on your side. While it seems obvious, very few people actually take it seriously and really work the problem. This means taking actions such as:
Know your doctors: Ask every question you can think of about their background; schools, class standing, currency classes, associations, participation, etc
Know the medical condition: Read everything you can find about the causal conditions (sun, heat, sound, toxic environment), symptoms, how diagnosed, treatment, prognosis (especially get statistical data)uncertainties, latest findings and research, related foundations or organizations, who is working on it and where are they, what journals cover it, where can they be found/read/accessed, are protective provisions required, etc
Know the treatments: Study the medications, who makes them, how much do they sell a year, are there generics, what are side effects, how does anyone know the side effects, are there helpful therapies, diets, exercise, what are statistical data about the drugs, FDA approved, any published studies relating to the drugs/therapies, food/drug interactions, etc
I’m sure you get the idea. We found a great byproduct of this strategy. We genuinely felt a measure of stress reduction when we were reasonably sure we had done everything we possibly could within available resources. We felt the doctors worked with us much more intelligently and openly when they knew they were talking with someone that was trying everything to help them leave no stone unturned. We never ran into any hostility. I hope we were not just lucky.
Since we make choices by using both our instincts/intuition and our education-based rational thinking, it makes sense to bolster our background to the extent possible to maximize the chances of making what prove to have been wise decisions.
September 1st, 2006 @ 9:47 pm
I hope things work out. Stay strong.
September 2nd, 2006 @ 1:34 am
So sorry to read that, I hope things work out ok for all of you.
September 2nd, 2006 @ 8:51 am
Oh Noelle,take care of yourself and your family. They always come first. We’ll always be here to read whatever you post, no rush. I know you’re a great mom, but don’t forget about doing stuff for yourself once in a while.
September 2nd, 2006 @ 11:15 am
I am so sorry to read that your daughter had a second seizure. I hope she does better now.
September 2nd, 2006 @ 5:15 pm
Noell,
I was just wondering about Trinity a few days ago, and what the news was with her. Sounds good that the MRI didn’t show a tumor. I can imagine how involoved you are with keeping up with her and her care. Thinking of you all, and sending healthy vibes your way. You’re keeping up with your major job, as mommy – don’t stop. But do try to keep us updated as you have time.
((((((hugs and good vibes))))))
Jen
September 2nd, 2006 @ 5:15 pm
Noell,
I was just wondering about Trinity a few days ago, and what the news was with her. Sounds good that the MRI didn’t show a tumor. I can imagine how involoved you are with keeping up with her and her care. Thinking of you all, and sending healthy vibes your way. You’re keeping up with your major job, as mommy – don’t stop. But do try to keep us updated as you have time.
((((((hugs and good vibes))))))
Jen
September 2nd, 2006 @ 11:48 pm
I hope all will be well for your daughter and your family.
It’s good that you’re taking the time to educate yourself about the condition and treatment.
September 3rd, 2006 @ 12:19 am
I just began reading your posts a couple of weeks ago and still I feel like I’ve known you longer and my heart just aches for you and your family. My thoughts and healthy vibes are being sent your way. I just can’t even imagine how you handle this emotionally. You sound very strong and I admire you.
All the best…please keep us posted.
September 3rd, 2006 @ 11:50 am
You are an awesome mom, and this just proves it. You put your children and your mental health before other concerns. Take care of your babies and don’t worry … your fans will still be around when you are ready. My thoughts are with you.
September 3rd, 2006 @ 7:12 pm
Your family is so fortunate to have such a caring, loving and bright mom. And I do hope Trinity will be fine.
September 3rd, 2006 @ 8:24 pm
Oh, I’m so sorry to hear that she had a second seizure. I will keep you all in my thoughts.
September 3rd, 2006 @ 9:10 pm
Noell,
We went thru a difficult period with our younger son starting around his second year due to asthma. It got pretty serious for a couple of years, but happily, he grew out of it. The only remnant seems to be a rather virulent allergy to cats. When I see photos of him during that time, I’m amazed. He looks so wan and frail. But now, at 25 he ran the mini-marathon last May.
Hopefully, whatever is going on with Trinity will also fade away. I fully agree with Greg100 and the others. Continue to educate yourself as best you can. Be in control as much as possible. Ask questions. Listen to the answers. Then ask more questions. Ask stupid questions. Write everything down. Leave nothing to chance.
We humans are pulling for you and Trinity.
TLS
September 5th, 2006 @ 11:08 am
Noell–
Like everyone, I thinking good thoughts for you and your family, and hoping for the best. Stay strong.
September 5th, 2006 @ 4:50 pm
Noell,
Nothing but the best from all of us to you and your family.
September 5th, 2006 @ 10:48 pm
I wish you and your family well.
Sending thoughts of white light your way.
-Donavan
September 7th, 2006 @ 12:39 pm
Noell,
I wish I could say something more profound. But my thoughts are with you and your family. I hope that everything will be better soon. You and your family are a real inspiration to a lot of people and we’re all so very greatful that you’ve opened up your lives to us.
September 7th, 2006 @ 5:06 pm
Noelle, thinking of you & yours. Much love & hugs.