In an effort to not be "that parent" that freaks out over every spot of dirt my kid puts into her mouth, looking back, maybe I was just a bit too lax. I then I beat myself up thinking I could have done something sooner about Charlotte's condition; suddenly I will flip back to reassuring myself any parent would have made the same mistakes and ignored the same signs. Hindsight is always 20/20.
I have had lots of new moms message me on Facebook asking me "How did you know something was wrong with Charlotte?" "What should I look for in my own child?" For my friends on Facebook, it literally looks like I got up one day and Charlotte was having a Generalized Tonic-Clonic seizure and we were rushed to the hospital. It didn't quite work that way. I wanted to write this blog post to give those of you who are interested, more information about C's condition, and to help answer some questions from those worried new mom's out there.
To understand how we got to where we are today, we have to back the train up about 24 years. When I was in second grade, I was diagnosed with something called "Brown's Syndrome". Basically, I can move my eyes in two opposite directions at the same time. It looks wicked creepy. It causes me few problems other than a few visual things that bug me a bit, but for the most part, it really just seems to make for a cool party trick. No one would ever know I had it if I didn't tell them.
Moving the train forward to about October 2012. I took C in for her 3mo "Well Baby" checkup. I told the Dr that I noticed that C could "twitch" her eyes really fast. I then followed that up with a few lines about not being too worried about it because I had Brown's syndrome in my eyes, I bet she is just like her Mommy. He said we would keep a check on it and if she didn't grow out of it, we would see a specialist in Huntsville (ironically the same guy that treated me as a kid). Other than that, all was well and we were scheduled to see him again around the middle of Jan for our 6mo "Well Baby" checkup.
On Saturday Dec. 29th, 2012, around 7:45pm, I was in the nursery with C, playing before bed to tire her out a bit. I was playing "Peek-a-boo" when she suddenly got very still and stiff. She stared to her right, and her eyelids were fluttering. I rubbed her belly to get her attention, and she wasn't responding to me. It was nothing I had ever seen her do before, but she didn't seem to be in any pain. I thought that she might just be really REALLY tired and was going to sleep with her eyes open. (I didn't know any better so don't laugh). I picked her up and she was so stiff, she retained her position she had while laying on the floor. Her eyes still fixed to the right and fluttering. About 30 seconds have now passed and I begin to worry a bit, I should have been able to rouse her awake or stir her up by now. Know that this was something odd, still thinking it was the eye problem again, I got out my phone and took a photo of her face. I wanted to show the Dr exactly what I was talking about with her eyes. One was pointing right, the other was forward. After that I start to consider calling 911 but I wait about another minute. After about 2 minutes pass, she loosens up and begins to cry. She quickly falls into a really hard sleep. I thought that was odd too and took photos of her sleeping. Lights on, loud noises in the house, nothing was waking up that baby, she was out for the night! I honestly didn't think a whole lot about what happened. If it were a medically emergency she would have stopped breathing, turned blue, choked, DONE SOMETHING other than just lay there really stiff with her eyes venturing off into 2 different directions. I reassure myself it was ok. She obviously has the same eye problem as me and the stiffness was due to being so tired. She went to sleep right after so obviously she was just really worn out.
It was nearly an entire month before C's 6mo visit, and somehow I had totally forgot about the Dec. incident. I didn't even bring it up to her Doctor. How could I have been so absent minded. I had so many good milestones to show him how awesome my baby was, it overshadowed my worry from a month back. I still kick myself in the head for forgetting to tell C's Doctor about this incident. I now know that he would have told me just to keep a watch on her and maybe it won't happen again, but still, I wish I would have said something sooner.
Feb 24th, 2013. Today is C's 7mo Birthday. We woke up that morning about 7:30 and I was working on breakfast. Case and I had the great idea to hook his racing GoPro up to C's walker and catch some video footage of her toddling around. It would be so funny to post on YouTube to make our friends and family laugh, and to watch again years later once she was older. I am pulling out the pots and pans, Case is loading C up in her walker and turning on the GoPro. Knowing the camera works best in natural light, we go around the house pulling up ALL the blinds in the house. The GoPro has a flashing red light on the front of it that was facing her as it was recording. We recorded 11 minutes of footage before C had her 1st Generalized Tonic-Clonic seizure. When mom's keep asking me "How did you know something was wrong", this is where the rubber met the road. C was toddling up to Case in her walker when she set her head down on her walker like she was tired. We knew she wasn't sleepy, she had JUST got up. Case called her name, she didn't move. He goes to pick her up, she is stiff as a board. He calls out to me, "Gena, something is wrong, this isn't right" (I roll my eyes, I am sure she is fine). C is draped across his arms as he walks into the kitchen. She is stiff and stretched out. Her eyes are rolled back and to the right. Her eyelids flutter in the same "timing" as her arms and legs are jerking. I look at him and I say, "I have never seen anyone have a seizure before, but this is what it is." He continues to hold her as he starts to enter panic mode, I call 911. I tell the operator that I think my 7mo old baby is having a seizure. They tell me to keep her on her side in case she vomits. I call out to Case the instructions. No sooner than I relay the info, he yells back that she is throwing up. He starts to panic. It seems like an eternity before the ambulance arrived, and in all honesty, it should have been to our house sooner. Because of our city address in the county location, the ambulance was dispatched from 10 miles away (Athens Hospital) instead of 2 miles away (Madison Hospital). By the time the ambulance arrived, C had been seizing for about 12 minutes. By the time we arrive at the Madison Hospital, she had been seizing for about 15 minutes. I don't know much about seizures, but what little I do know is that they don't last long, 5 minutes or less, RIGHT? Why is my child STILL seizing?!?! There is some ruckus in the ER about her weight, I try to give them my best guess from her last checkup. After 20 minutes of seizing, the ER stopped her seizure with Ativan. Case and I spend the next hour and a half in the ER sobbing, worried if our baby was going to be "normal" after this. We were transferred to Huntsville Pediatric ER through the Kids Kare ambulance (The Kids Kare ambulance was top notch! NICE setup and LOVED the staff they were totally amazing to me and C). Case and I spent the next 24 hours worried and confused. We had no clue what a "Postictal State" was. There aren't many 7mo old babies that have seizures, so there were lots of testing to check for various issues. We had a CT scan, MRI, urine and blood testing. The ONLY procedure we didn't have done was an EEG. After talking with our local Pediatric Neurologist, we elected not to do an EEG. At this point, C had only had 1 Generalized seizure and we were not interested in popping her with years of medication after one incident. The procedure for getting an EEG was not baby friendly, and it was causing such discomfort for C, that I honestly thought we were going to cause another seizure just trying to stick the little sensors on her head. I would rather put an IV in her than to try to get another EEG from C again! Shaken, we are sent home with an emergency rectal suppository that will stop another seizure, should she have another one. We pray this is behind us forever.We see our Ped. Neurologist on April 18th for a follow up.
A month passes. I wake up on March 24th, 2013 literally thinking "Whew, it has been an entire month and no seizure from C". It was a nice Sunday, we had lunch with Nana (Case's mom) and visited Grandma Dalton. We had stopped by Lowes to pick out our new appliances for our upcoming Kitchen remodel. We got home about 3:30 and I was ready to start making lunches for the week and wash clothes. Before I did that, I knew I needed to change C's bottom. She had been out running around with us for several hours, and I knew she needed it. I had just finished changing her when I set her on the floor to play for a moment. I had just pulled out my phone to check on any interesting Facebook traffic. C toddles over toward me and goes to pull up on this little light up play table she has. Just as she goes to pull up, she collapses. I can tell from her fall that this wasn't a "I lost my balance" fall. C never even attempted to catch herself as she fell. It was like it all happened in slow motion. As she fell, she bumped her head on her diaper stacker. She starts to wimper and cries out a bit. I breath a quick sigh of relief. Her other seizure was silent, she wouldn't be able to cry out if she was seizing. I try to get her to "comfort herself". "Its ok baby, you just bumped your noggin' you will be fine sweetie". She isn't sounding right, I pick her up. Her eyes were rolled back and to the right. Oh no, not again...... I go into emergency mode. Case rushes in. I hold up C, "Case try to get her to look straight at you!" She can't, she can only look to the right no matter how I maneuver her. She begins to stiffen up, and the convulsions come on more slowly this time than they did last time. Case calls 911. I make a point to check the time. I am feeling a little more relaxed this time because I know what to do. I lay C on her side expecting her to throw up. I get her emergency meds, rip off her diaper and give her the drugs as the instructions indicated. It was 3:55. We remembered our last incident with the ambulance and made sure to tell them to dispatch an ambulance from Madison Hospital instead of Athens. By 4:00 they were in our driveway. Knowing C's seizures don't stop without drugs, I request the driver to take us to the Madison Hospital. She argues with me by saying that if we go to Madison, they will just have to transfer her to Huntsville anyways. I tell her I don't want to do that because C's seizures don't stop. The driver assures me that they have meds onboard the ambulance should we need them. I still regret not putting my foot down at this point. I concede, if you have drugs to stop it, then we will drive the 40 minute drive to HSV. I am in the back of the ambulance and at the intersection of Jordan Ln and University drive when I realize that it is now 4:15 and C is still seizing. I GAVE HER MEDS TO STOP THIS, SHOULDN"T THIS STUFF WORK! I start to kind of freak out in the ambulance. They give her another dose. By the time we reach HSV, C had been seizing about 25 minutes. We pretty much FLEW from my house to HSV, pretty sure we ran some people off the road. After 35 minutes of seizing, HSV gives her Ativan and it stops her seizures. At this point I know the song and dance and I start calling work to let them know I won't be there tomorrow. C sleeps for about 2 hours then wakes up in her usual pissed off postictal state. Case and I take turns trying to comfort her. The Pediatric ER doctor comes in and tells us that the ONLY Pediatric Neurologist in HSV is on vacation, so they were transferring us to B'ham. At 9:30pm we get another ride in the Kids Kare ambulance from HSV to B'ham.
I was really disappointed in our visit to UAB Children's Hospital. We were there as a transfer from HSV because our Dr was out of town, and it was pretty obvious they were treating us as such too. The staff, doctors, and facility was extremely nice; but they had no interest in "digging a little deeper". Once you have a second seizure, the odds of you having a third seizure are something crazy high, like 90%. The Doctors at UAB were following our Dr.'s orders by giving us a prescription for a daily medication. Since we had a clear MRI and CT scan, they saw no need in doing another one. We told them we wanted an EEG ASAP, and they told us to call our doctor when we got back in town to schedule that with her. We told them that the soonest she could get to us was April 18th, they kindly smiled and told us the soonest they could get to us was NOVEMBER! They gave us our discharge paperwork and a prescription for our medication. They also gave us the instructions that her meds are to be given to her 12 hours apart and her next dose was suppose to be in 3 hours. "Ma'am, we have a 1.5hour drive home, if something happens, we may not get her script filled in time". The nurse just kindly shrugged and told us to "hurry up and go". I asked her if the hospital could give us a dose for the road, or even fill the scrip here for us at the hospital, and she said they couldn't. Again, I wish I would have lost my cool RIGHT HERE! This is completely unacceptable. One of the things they had us do was watch a video about seizures before we were allowed to leave. It was a really good clinical video showing REAL kids having REAL seizures. This was the 2nd best thing we had ever done. As we watched the video, Case and I just sat there with our mouths wide open pointing at the screen. "OMG she does that! I have seen her do those things too." Our rose colored glasses were removed and we finally put some of the pieces of our puzzle together in that very moment. We figured out that the "incident" in Dec. was a seizure and we didn't know it. We also figured out that sometimes when C just stares off into space, that isn't ALWAYS normal. It also isn't normal for kids to act like they have been shocked with a cattle prod every time to turn on the lights in a room, take their photo, or the dogs bark. I remembered right before her most recent seizure, she had several of those little "electric zaps" in my arms just before I changed her. Even other people that held her would comment, "geez sometimes she just nearly jumps out of your arms real quick like, but it isn't like she is jumping, more like an electric shock". How did we not know that this behavior was abnormal? Again, this is another thing I beat myself up over, then I try to remind myself that I have never been a parent before, how was I suppose to know. We had our bags packed and we were literally being kicked out of UAB Children's hospital. We had already seen the doctors and couldn't tell them what all we had figured out and needed them to know. We were also angry that all this had slipped by and more importantly, we were being sent out on the most nerve wrecking drive home in our life. Before walking out the door, I grabbed a sheet of paper that had C's weight on it and the dosages of several emergency meds that she can take. I thought if something happen on the way home, I could at least get her to Cullman or Decatur General and give them this sheet. In the mean time, during our stay in b'ham, I had a little angel over my shoulder that kept calling me to check on C. My friend Wyndie who's son had a benign brain tumor treated at Le Bonheur Children's Hospital in Memphis, was insisting I call them to get them to see C. I talked to Case about it. We didn't know what to do. Le Bonheur is a serious research hospital who treat kids with brain tumors (which we already ruled out) or kids with special needs. Not every kid that has Epilepsy needs to visit a research hospital. Case and I didn't want to take up the time and talent of such gifted professionals on our kid who was seeming to be an obvious easy to treat case. I am sure our meds will work out and be just fine. I am sure there are other 8mo old babies with the same problem, RIGHT? Obviously if this was something unusual, the other 2 hospitals we had been in would have given us more cause for concern, RIGHT? Wouldn't some one tell us if this wasn't typical? Apparently not.
After a little debate, we called Wyndie's contact at Le Bonheur, "just to talk". The worst they could say was that they were full right? C was taking a nap in my arms when the nurse called me back, Case talked to her. Case was telling her our whole story and how NOW, we realize she was having smaller seizures everyday. Case and I were taken back when she told us to report at Le Bonheur in 2 weeks. WAIT, WHAT?!?! You mean to tell me that you can see AND diagnose my child in 2 weeks, a whole week earlier than my very 1st appointment follow up from our VERY FIRST SEIZURE with my regular Doctor, and 6 months earlier than UAB Children's could see us again?!? JUST 2 weeks to get into the BEST Neurological center IN THE COUNTRY?! I assumed it would be AT LEAST a 6mo wait. One thing has always held true for me in life, whatever is cheap isn't fast, and whatever is fast, isn't cheap. Eeeeek, if they can see us in 2 weeks, what is this going to cost us. At this point we didn't care if we had to sell (my) car (the Jeep was out of the question). By God we are THERE! Quick plot spoiler, it was covered by insurance. ;)
For now, that is where this story will end before it gets too long and boring. Look for another post about our stay and diagnosis. :)
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