Andrew's Story-new here

[KatymomtoA]

Good day! I posted an introduction over in The Foyer forum a few days ago, and I received some good advice from some very knowledgable people. I promised that I'd share Andrew's (my son), so here it is:

Andrew, is 5 yo. We live in Alberta, Canada. Three weeks ago, Dec 27, Andrew had a series of prolonged seizures with no break in between. Started off as simple partial, then led to complex partial, then secondary generalized tonic-clonic. For well over an hour. We called 911 and Andrew was taken to the hospital by ambulance, while experiencing T/C. Dr's had a hard time stopping them, but eventually, after going through the usual drug protocol to stop seizures and none of them worked, intubated him and put him under some kind of anesthesia that did slow down, and then stop the seizures. After Andrew was in recovery, the ER Dr admitted to me that he didn't think he was going to be able to stop him from ceasing. He was admitted to hospital for a few days. He had slurred speech and couldn't walk until around 33 hours post-seizures. That scared me. He had bloodwork/history taken etc, which didn't show any cause. How can a child with no prior history, have a series of unprovoked seizures that were hard to stop just out of the blue? These are the questions we were asking ourselves. From reading here, and from some very supportive people, I've learned that alot of the time, the cause is never found.

Andrew had a CT scan, which showed no bleeds, but did show a subarachnoid cyst. We are not sure if this had anything to do with his seizures that day. A few days ago he also went for a sleep deprived EEG. I have an app't with his Ped to get the results in 2 weeks. I live in a smallish city, so the EEG results had to be sent away to be interpreted. Hence the 2 week wait.

That day in the ER the Dr's asked us if Andrew had any signs or seizure activity before that day. Shocked, and not knowing what any type of seizure looked like besides T/C. We said no. However looking back now, we do vividly remember one other time 6 months ago. I described that time in my intro thread, but we believe now, that he suffered a complex partial seizure that day. I will inform his Ped of this at our app't in 2 weeks.

He's not on any medication yet. Dr did prescribe Midazolam as a rescue med if he ceases again, and it lasts over 2 min, we're directed to give it to him. He prescribed one for home, and one for school. About his school, he's in Kindergarten. I've had meetings with his teachers, as well as all the first responder-first aid trained staff at the school, and taught them how to administer his medication, and what to do if he ever ceases at school. We wrote out an action plan, and discussed it in detail. I had to fight the school board to have his meds stored in his classroom, not locked up in the school office. They even keep epipens locked up because of liability. Absolutely ridiculous if you ask me. I even had a Drs note stating it should be stored in close proximity to him, so it could be given at 2 min if needed, to hopefully prevent another episode of SE. I have one more meeting today at the school, I'm counting it will go smoothly.

Part of me wants his EEG to come back clear, even though I know that if it does, it doesn't mean he won't ever have another seizure. I know that there is a possibility that he still could. Part of me hopes it helps give us a diagnosis, so we can treat it. This not knowing sucks. I wish I had a crystal ball, and could see what his future holds. Does he have E or not? Intuition tells me he definitely has a higher chance of recurrent seizures than someone who has never experienced seizures before. The SE part was terrifying for us. Of course Andrew doesn't remember it. Which is good. I guess this is normal feelings this early in the game..

Thank-you for any advice or support you can provide.

 

[masterjen]

As frustrating as it is, a 2-week turn around for a report is common. Given that it has to go to another doctor (for interpretation) before you finally get the results may delay things a little more. This has been my experience in B.C., anyway.

It sounds from what you say that your son only has a pediatrician at this point, is that right? Is there any way you can get your son an appointment with a pediatric neurologist (preferably epileptologist) rather than working with only the pediatrician? A pediatrician in Canada is really no different than a family doctor, except that they specialize in matters that deal with children rather than adults, so they do not have the extent of knowledge required when dealing with someone who has seizures. Working with a doctor who is not a neurologist can mean some information is not passed along to you that should be, or is interpreted by the non-neurologist doctor in a way that it should not be.

You're right that a seizure that is not an obvious tonic-clonic can be difficult to identify, and as you say it is possible he has had more subtle seizures in the past. But, don't get to caught up in looking back and trying to identify "what ifs". Stay focused on the present and what is happening on a day-by-day basis now that you know what to look for.

As for fighting for your son's needs with the school: way to go!!

Hang in there during this arduous wait for the EEG. Everyone here understands when you say you hope the EEG gives a diagnosis of something that can be treated.

 

[Nakamova]

Part of me wants his EEG to come back clear, even though I know that if it does, it doesn't mean he won't ever have another seizure. I know that there is a possibility that he still could. Part of me hopes it helps give us a diagnosis, so we can treat it. This not knowing sucks. I wish I had a crystal ball, and could see what his future holds. Does he have E or not? Intuition tells me he definitely has a higher chance of recurrent seizures than someone who has never experienced seizures before. The SE part was terrifying for us. Of course Andrew doesn't remember it. Which is good. I guess this is normal feelings this early in the game.

I think you are spot-on with your feelings and intuition. The not-knowing DOES suck. The unknowns and idiosyncrasies that come with seizure disorders add an extra element of stress and worry, probably moreso if you are a parent or caregiver in "watch-and-wait" mode. I hope you can meet with a specialist soon who can shed more light, but in the meantime I think you are doing the right thing in getting as informed as possible, and proactively advocating to keep your son safe.

 

[Fedup]

KatymomtoA

It's only right you want things to come back clear and that this all goes away, what a nightmare for you. You mention the slurred speech and that he was very weak, same thing happens to me and a few other people as well it's all part of getting better after a seizure I am sorry to say. You will find a lot of good people here who will try and help, just as you will help others.

Look forward to the future, things can only get better from here on and you will find support when you are down and reassurance as well from all the good people here.

 

[KatymomtoA]

Jen-That is correct, no specialist on the case yet. I have however, began my research, for a pediatric epileptologist, and am hoping to ask for a referral at Andrew's next appointment in a few weeks-Thanks to your suggestion in my intro post.

Jenn and Nakamova: Regarding his school- Thanks! Yes, I couldn't believe it, I went through all the paperwork, and getting a Dr's note for keeping his recue meds in his classroom, all the meetings, everything. School board, Principal and teachers were good with it being kept in an easily accessible place, but safely away from the children etc and in his classroom it was. A day later, I get a call from the principal saying the Superintendent emailed her (she read the email to me), saying as per school district policy, they had reviewed his case (again-I had already received the ok once), and the medication was already taken out of his classroom, and put in a locked cabinet in the school office. I was furious. So, I asked the principal for the Superintendants direct phone number. She wasn't allowed to give it out. Can you believe it? That tells you how "open" the communication really is between school board and parents. So I had to go through the long way of reaching her but when I eventually did, I explained our situation (again) and calmly put in an appeal. A few hours later she called me back and said that they had made the decision to allow it to be kept in the classroom-until the end of the school year. No promises for longer than that. They kept mentioning the liability factor. Seriously? Ugh! Other than the medication issue, the school has been really supportive so that's good. I mean, it's hard enough leaving the little guy there on his own, knowing there is a small chance he could have a prolonged seizure again. Now that they're educated it makes it a little easier but it's still tough. I also had to sign a form saying that I know he has this seizure risk, and the school district can't be held liable if he is injured or dies while in their care. I understand where they're coming from but since when did liability come before child safety? Pretty sad. End of rant..LOL.

Fedup-Thanks as usual! So glad to have you all to talk to. Because there are so many uncertainties with E, it makes it all even harder to understand. But I'm definitely getting there.