21 October 2007

Geiger's febrile seizure

Now that I'm all up in arms about nationalized health care, I might as well share our final experiences with Kaiser Permanente.

Dr. Michelle Glasgow, after agreeing to continue to treat my hypothyroidism to the levels where I was losing weight, did an about-face when it came time to actually up my medication dosage. She would never answer my question about why she said previously that she would, only stating that I was within the TSH levels that Kaiser considered normal, despite the fact that those levels do not reflect the current guidelines from the American Association of Clinical Endocrinologists. I'm not sure what her reasoning was for refusing to raise my dosage, other than playing God - Kaiser wasn't paying for my medication so it's not like they were out any cash.

We had already decided to find other health care (and had taken the steps to purchase it through our LLC, at half the cost of what the school district was charging for Pacificare insurance) when the incident happened that completely sealed our decision to leave Kaiser.

(You're going to be wondering what we did with MadLibs during all this - fortunately my father-in-law was visiting, and so we just shouted into his room for him to watch MadLibs, got a "Huh? I need to watch MadLibs?", and ran out the door.)

In late June, 16-month-old Geiger started running a fever. She was teething, and despite what some doctors say, MadLibs had run crazy high fevers when he was teething, so we just assumed it was due to teething, gave her some Tylenol, and put her to bed at 9 pm. Although we keep a baby monitor running, it hadn't been necessary to actively listen for a while - Geiger is pretty good about hollering when she's ready to get out of bed. About an hour after we put Geiger to bed, my husband (R) happened to walk by one of the monitors and heard what sounded like rhythmic sighing, and brought the monitor to me. We joked that she must be singing herself to sleep, and listened for probably a minute or two before R. decided to go check on her - we usually have a policy of not going into the kids' rooms after they go to bed, but if she was having that much trouble falling asleep maybe she just needed some playtime). R walked into Geiger's room and immediately shouted for me to come up.

Geiger was having a seizure, and was burning up with fever. I took her out of R's arms and told him to go call the pediatrician, because I really wasn't sure what to do other than to try to get her fever down. I ran into the bathroom and started pouring cold water on her. R couldn't decipher the phone system to reach anyone (our previous pediatrician's phone system just had you press 0 to reach someone, and in my opinion any phone system you might call in an emergency should work this way) and we decided we could get Geiger to a hospital faster than an ambulance could get to our house and get her there, so we loaded her up in the Jeep and drove as fast as we could to Good Samaritan, which obviously was not my first choice, but it was closest, and there's a toll highway that runs practically from our house to the hospital so we wouldn't have to worry about the traffic of going into downtown Denver. It took fifteen minutes from the time we realized she was having a seizure to arriving at the hospital. Geiger was still seizing.

(Note: if your child ever has a seizure, call 911. We weren't sure if a seizure was considered enough of an emergency to call 911, and didn't take into account that your urge is to drive like a maniac to get your child to the hospital. Plus they can stabilize your child in the ambulance - if Geiger had stopped breathing on the way to the hospital there would have been nothing we could have done.)

R dropped Geiger and me off at the door to the ER and went to park the car. I ran in and told the receptionist, "My daughter is having a seizure, we need help NOW!" The receptionist just sat there slack-jawed for what felt like an eternity but was probably only a couple of seconds before a nurse came out and took us to three different rooms before finally deciding where we needed to be. It took almost twenty minutes and two doses of Ativan to make the seizure stop. Geiger's temperature was 103.5 degrees, which is actually low for a febrile seizure and is lower than what MadLibs' temperature runs when he gets sick.

Once we were actually in the right room and the staff had figured out what to do with us, the care was excellent. They got the seizure stopped and had a nurse pretty constantly with us. They even gave us some socks with treads on the bottom (I didn't even know they made those for adults) since we had made it out the door with no shoes or socks, just pajamas. They did seem a little incredulous that she had a seizure with a temperature so low.

Good Samaritan didn't have a pediatrician on duty past 2 am, so R and Geiger rode in an ambulance downtown to Children's Hospital while I drove home to grab a cell phone, let my father-in-law know what was happening, and grab some real clothes, blankie, binky, bunny, etc. Geiger was still unconscious from the Ativan, and she needed to be observed until she regained consciousness.

The staff at Children's was also wonderful. R and I took turns staying awake and fielding phone calls (R had called my mother-in-law from Good Samaritan and asked her to call my mother for some affirmative prayer, so word was getting out). The resident at Children's sat me down while R was asleep and discussed in depth what had happened, what we needed to watch out for, and told us that despite the long duration of the seizure it was unlikely that there was any damage. We were instructed to give Geiger alternating Tylenol and Motrin to try to keep her temperature down. We were told to follow up with a pediatrician at Kaiser at the end of the day (it was now very early Friday morning) so she wouldn't go all weekend without a followup.

At about 7 am, Geiger regained consciousness. Her first word waking up, of course, was "Daddeeeee!" (Mommy's pretty ubiquitous, and I'm OK with that.) She was still very groggy and unable to walk and focus, but they let us take her home. We called Kaiser to find out that Dr. Merrill was on vacation, so we would have to see Dr. Bruce Doenecke, who had scoffed at me for being overconcerned and not knowing to just apply some hydrocortisone when I brought MadLibs in for a rash a few months before - a similar rash a year before had been strep. We got an appointment for 4:45, so as to get us as close to the weekend as possible.

At about 2:30, Geiger started screaming like her bones were being ground into glass. Nothing calmed her down. We called Kaiser and were told to wait for our appointment at 4:45 (which I understand; they probably wouldn't have been able to get us in any earlier anyway and by the time we got there we would have only saved a half hour). Dr. Donecke really didn't know what to do with us or about us - I had assumed a pediatrician would have at least a rudimentary knowledge of febrile seizures, but he honestly seemed clueless. He at least had the good sense to call Children's to talk to a neurologist, who said that it could be a reaction to coming off the Ativan or it could be post-ictal nastiness, but we would have to wait another 24 hours before another evaluation would be necessary. We could try Benadryl, but since she had never taken it before it was possible it would wire her even more.

The real kicker was when we asked Dr. Donecke what to do in the future, especially if we were up on a mountain or at my mom's, which is miles from the nearest paved road and at least 30 minutes to the nearest hospital, if an ambulance can even find the place (FedEx sure can't!). His profound, reassuring answer? "I don't know." Dr. Donecke didn't even offer to try to find out what our alternatives were. I don't know if it's just that we weren't his regular patients, or that he's really that unconcerned with the wellbeing of his charges and their parents' peace of mind. Even after we asked him if he expected us to never be out of reach of a phone and hospital, we received no answer.

Ten days later, we had left Kaiser Permanente for good and were back with our old pediatrician. Here's the plan our pediatrician laid out for handling this in the future:

Second seizures don't require a trip to the emergency room unless the seizure lasts for more than five minutes. We were told we don't need to call 911 until after the five minutes had passed, but I think we will probably call right away.

If Geiger starts running a fever, we immediately begin alternating doses of Tylenol and Motrin every three hours. There's some debate on whether this actually prevents a seizure, but if we can keep the fever down we're hoping that will help.

We carry a thermometer and Motrin with us at all times. The Motrin has the current dosage written on it so we don't have to think.

Geiger's pediatrician wrote a prescription for rectal diazepam (diastat), which we immediately filled. A few notes on this - talk to your pharmacy about what dosages they are able to get before you get your prescription written - the dosage the diazepam came in required that we purchase the refill at the same time (two to a package) so we ended up having to pay full price for the refill, and the whole prescription cost us $200 with insurance. Your pharmacy probably doesn't stock this, so be sure to bring in your prescription a few days before you will need it. When we hike, fly, go to mom's, etc., essentially whenever we go someplace where we might be out of reach of a hospital or doctor or a phone, we carry the diazepam and some rectal acetaminophen (marketed as Fever-All, ask your pharmacy for this too) to handle the seizure and bring down the fever long enough for us to get back to civilization.

It's amazing what a pediatrician who's actually interested in helping a parent maintain their kids' active lifestyle and who is actually concerned about her patients can do. The odds are good that Geiger will have another febrile seizure, since she has three of the risk factors for a repeat - she was under 18 months old, her fever was relatively low, and her seizure lasted more than fifteen minutes. With the current plan we've developed with our pediatrician, we can rest assured if we go someplace that is out of reach of phone and hospital, we can handle a seizure.

(And in case you're wondering, as if anyone read this far, Geiger is fine. She oddly lost her attachment to her bunny lovie for a while, but that either came back or redeveloped, I'm not sure which. She's still beating all the curves for learning and development, and her head is still way too big for her body.)


Christy said...

while i'm sure it was terrifying at the time, I'm glad that everything is ok. navigating the health care system can be annoying and frustrating.

i was a seizure-kid. i had them in reaction to the DPT, and I remember all of the crap I had to go through. Dilantin comes in a grape-flavored liquid, right? :D

Alice H said...

I don't know about liquid Dilantin; she's still young enough that liquids aren't an option while she's seizing. I hope hope hope we never have to use the diastat.

Her old/current (non-Kaiser) pediatrician also had us isolate the TDaP vaccination from her other shots, which meant that she has more occasions for shots but gets fewer shots at each visit. TDaP is the one that usually seems to cause problems even today. She ran a fever with it but we were able to control it with Tylenol and Motrin.

We go on seizure watch any time she runs a fever - one of us is up twenty-four hours a day until the fever is gone. Unfortunately, high fevers run in the family; for instance, MadLibs is sick with strep right now and has run a 104 fever for days. (We just figured out that it was strep today. The last few times I've taken him in for a sore throat it's been nothing.)

I'm sure none of this is helping to convince you to have kids, christy!