Thursday, August 26, 2010

Broken

Well, today was the day that we've patiently waited on for nearly 2 months now..To meet with the pediatric neurologist who specializes in childhood epilepsy. I prayed that we'd walk in there with our list of questions and leave there with all of them answered. I believe that we often expect way too much out of Drs. Almost as if they have an answer for everything when they simply do not (b/c they are HUMAN!) and we expect them to have a magic wand that they can wave and say some magic words..."Seizures be gone!!" and voila, he's healed. It's not like that at all :(

I can't say that the appointment started off in a positive fashion. We live 45 minutes away from the clinic and we tried really hard to get out of the door on time. That's pretty hard to do when you have a little one who has to take 5 different medications each morning and that same little one is having a rough morning. So we left out of the door 10 minutes late. Our appointment was scheduled for 10:30 and we got there at 10:42(per my watch). We get checked in and they call Jayden back. The first thing the nurse says is "We won't be able to triage him as we usually do b/c you are running late." I ignored her b/c really, it takes all of 2 minutes to triage and I'm sure the Dr would have us waiting longer than that. So as she waled us to the room she asked something about our address and she noticed we live in Slidell so I said "That's why we are a bit late. We had a ways to travel to get here." Then she says, "Yeah well, you can't be more than 15 minutes late or we would have to reschedule the appt." So I smiled and said "Oh okay, we were just about 15 minutes late and I apologize for that." She said "16...you were 16 minutes lates." ARE YOU KIDDING ME? I simply said, "Wow." I wanted to slap her. I told my husband that if the Dr is as nasty as her nurse then we will have a problem. Thankfully, that wasn't the case. In fact, the Dr shooed her crazy nurse away when she questioned me about Jayden's med dosage when what I was telling her wasn't matching what was in the system. The Dr said, "Mom knows how much he's supposed to get and it probably just wasn't changed in the system. It happens." So anyway...about that appt.

The first thing the Dr says is "Ok, if it's not broken, I won't fix it, but if it is broken, I WILL fix it!" Big sigh of relief :) So the first thing we tell her is that he's been having seizures at least once a week. She says okay that's not good. That needs to be fixed. So she asked about the nature of his seizures and his postictal state. I also gave her a list of our concerns (I'm THAT mom) but she was very thankful for it and even asked if she could keep it for her records. She highlighted things that were red flags to her. She seemed mainly concerned with his lack of coordination and constant falling. She asked if we noticed any seizure activity when he would fall, but we didn't. We just thought he was clumsy or thrown off by his meds. She told us that since his seizures start and end so quickly, the falls may be seizures. She was also VERY concerned about the regression. Jayden's pre K teacher told us that it really wasn't a concern b/c the skills that he was losing (ABCs, counting, colors, etc) are not necessarily age appropriate skills. The Dr agreed with that, but she said it becomes a concern when there is a know neurological issue. This means that his brain is being directly affected. We were very surprised that she wasn't as concerned about the heat sensitivity. She told us that heat makes epilepsy worse. So he's avoiding the heat b/c the heat makes him "feel funny", which is the aura he gets prior to seizing. Makes good enough sense. So the seizures need to be better controlled and then the heat sensitivity should get better.

The Dr wants us to get him back in to see the genetics Dr so that he can dig further into the chromosome abnormality and find out how it's directly affecting (or causing) the epilepsy. She also scheduled another EEG. This will be his 4th (or 5th) I've lost count. He has to be sleep deprived which means I will be sleep deprived. And I have class on the day that it was scheduled. Oh joy!! She pretty sure that he will need his medications changed but she wants to find out exactly what part of his brain the seizures are coming from so that she can get him on the correct meds and dosage. She left us with a warning that since his seizures went untreated for so long (she said his initial regression at 18 months could have been due to seizures and we didn't catch them until over a year later), they will be harder to control, even with medication. So in a nutshell, it's broken and needs to be fixed. And fixing it is not going to be as easy as waving that magic wand and saying those magic words. If only we lived in a perfect world.

2 comments:

Jennifer said...

So many prayers continue to you and your family! Much love!

Danielle said...

not sure how i ended up here- but i've been following your family for a while. i actually sent you a message a while back about my little boy's eating habits and some concerns i had. turns out he's just fine, just really sensitive to textures and a little on the stubborn side. anyway, just wanted you to know that while we wouldn't know each other if we met at the mall- i will be praying for your jayden, and i'll be believing with you for healing. our God is greater and stronger than any of this.
just thought you might need a little encouragement :)