Katie’s MRI/Seizure Results update from Sept. 09

The next chapter in the health sagas of our summer. My goodness, tomorrow is Halloween. I’ve attempted to write this particular entry several different times and hoping it is completed today!


End of September I took Katie to a follow up appointment for her MRI and seizures. We knew almost 2wks prior that the MRI results were negative (good!) because they let us know. They also would’ve let us know right away if something was wrong and we never got that call. 
So I met up with our Nurse Practitioner at Mary Bridge Children’s Hospital in Seattle. She reconfirmed that Katie’s MRI showed nothing out of the ordinary.She said that because, so far, Katie’s seizures have been short (1 min or less) and follow a fever/vomiting/illness (except for once) and she hasn’t had an episode since August that she isn’t worried about doing anything about it right now. She said not to worry unless:


1)she has another seizure that isn’t following an illness 
2) she has a seizure that is 3 minutes in length or longer
or 
3)she has a seizure that occurs when she is 6 yrs or older (which is 4 yrs away).


I really appreciate this NP, she doesn’t make us out to be panicked or worried parents and makes sure to give us ample opportunity to ask questions/get answers without sounding dumb… in a way that allows you to build up the courage to ask if that is what you need. Fortunately I really didn’t have any questions… just like to know what are the next steps we need to take should it occur again and it is great to know that everything, in general, is OK in Katies brain (no tumors – which was the scariest unknown!) and there is just something about illnesses that tends to trigger her seizures. 


Last week Katie did come down with a nasty double ear infection that kept her (and us) awake for two nights. We did visit the Dr the day after the first night to confirm that it was an ear infection and she started a round of Amoxicillin. As far as we know she didn’t have any seizure episodes from those. I definitely was on guard though to see if anything such thing might occur.


Here are a few photos from her MRI day, they are from my Blackberry phone so not the greatest quality but not bad for a smartphone and will suffice.


Stickers Galore – I do believe they wanted Katie to think Children’s Hospital loves her – so they showered her with stickers from the hospital registration, to the clinic check-in, to walking in the MRI prep room. I truly think she was getting sick of the stickers, overwhelmed by all the choices. I guess it that is the worst of her problems we’re doing great. Here is waiting in the room. She brought her baby doll and blankie, glad I thought to bring them for the waiting room, we had a really long wait in this room. The killer was a playground outside 4 floors down right outside her window. I wan pay mommy, go pay mommy (I want to play).

After the MRI, it took about 30 minutes for her to wake up from the anesthesia. These tubes are just to help her not bite her tounge while she is sedated. She was the grumpiest little thing when she finally did wake up. Anyone would’ve been if they had been through all this without breakfast or lunch or any snacks and it was 3 p.m. In addition to the animal cracker and apple juice she was provided we visited the snack vending machine outside the cafeteria and she got to choose whatever non-candy/non-overly junk food item she wanted. (Yeah, I know that doesn’t leave many choices). She then sat on Pigthaylion, the pig bench between the hospital and the parking garage. She treated it like a carnival ride and everyone passing by just thought she was so cute and hilarious with her excitement about ‘riding’ the pig.

  

This concludes Katie’s seizure saga. Well, until we finish paying off the medical expenses. Nothing like medical bills after EKG,MRI and several doctor visits to make you thankful for the little bit your insurance does cover and that you have the ability to pay them off. This was just one round to determine the cause of siezures and we’re done, I hope. I absolutely cannot imagine the burden of costs for families with children with terminal or other illnesses needing to be treated for many more days than Katie.

I did it! I wrote the blog entry! Hurray!

Katie’s Seizures Part 3.

A short (I think) update on the latest information about Katie’s seizures. She was scheduled to have an MRI on Aug. 18th, and we ended up rescheduling due to Doug’s grandmother’s memorial service being held the same day. The rescheduled MRI is for Sept. 1st. Toddlers have to be sedated for MRIs so it’ll be a tough morning denying her breakfast after 6am and only juice/clear fluids untl 10am then nothing before her 12noon appt. We’ll see if that is easier than waking up with her at 4am for the EEG and keeping her awake until 12:30p!

About a week ago (8/16), late on Sunday night Katie had two more epileptic episodes – as far as we can tell. They weren’t as intense as before, but the happened. She had some 24 hour-ish flu bug where she didn’t eat much for dinner then didn’t actually ever fall asleep because she complained of stomach pains. She Kept saying “ow-eee” for a few hours and I eventually brought her out with Doug & I so we could finish watching a movie that took us almost 4 hours to watch in the end. Around 10pm it was apparent why she was in pain because she threw up – all over me. Fun times being a mom. I’ve probably said it before but it is these moments that make me appreciate my mother all over again, and thinking about my mother caring for me that keeps me going taking care of my children when they are sick. She continued to vomit about every half hour until 1 or 2am.

Around the 3rd or 4th time she was in my lap and just stared straight ahead with her eyes moving up and down, side to side. She was unresponsive to words and then I tried pinching her and twisting her skin (as I’d been instructed to do by the med. experts we’ve been talking with) and then also seeing whether she’d grasp my fingers which she didn’t. Doug at one point pinched her really hard in the stomach and she yelled “oW!”. The combination of the vomiting and the episode made me nervous so I wanted to call the clinic for an after hours consultation. This was the first time Doug has witnessed any of her episodes and I don’t know if he didn’t think it was a big deal or didn’t want to believe that it was a seizure and he didn’t want me to call. I told him I was calling anyways because this is the same thing that her eyes have done in the past and she really wasn’t responding to anything before his big pinch. So I called and we waited about 20 mins for someone to call back. Katie started vomiting again as they called and Doug spoke with them while I helped her. Poor little thing. Immediately after vomiting she had another episode with the same eye movements and non-responsive communication. Another big stomach pinch and she came out of it.

The after hours doctor said if she vomits through the night to call back, bring her in. But she stopped. They also recommended we call the nurse practitioner at Children’s to report the epileptic episodes. So I called them and reported the episodes. They will follow up with us after the MRI results.

I know Doug is scared in general because there is the worst to fear… the worst that may not be at all. A tumor and hopefully it will not be that. We have found out through all this that at least two, maybe three family members on Doug’s side have had seizures as young children grew out of them. Hopefully that will be the same for Kates.

Awaiting Sept 1st for the MRI. That’s the scoop.

Katie’s EEG Consultation Follow Up Appt

For the curious (thanks to everyone who has been asking and concerned about Katie’s situation).

Our visit at Children’s Hospital Seattle went fine, other than the fact that Katie is a little monkey and literally climbed on everything she possibly could.We met with a nurse practitioner for the consultation – which is fine with me. I my experience nurse practitioners have sometimes figured out what was wrong with me when the doctors couldn’t. So she checked out Katie saying at that moment in time she was perfectly functioning little 2 year old. I rehashed the details of the seizure episodes. They are not so concerned about the febrile seizures but they are curious about the second seizure (which didn’t have any other symptoms like a high fever with it). She gave us the results of the EEG saying it came out completely normal, but they only tell 60-70% of the story as it is reading the brainwaves for that specific period of time.

Katie’s second seizure episode causes more concern than the febrile seizures and they are thinking it might’ve been a “focal seizure”, which sometimes that means maybe there is something in particular affecting the brain causing the seizures to occur. She went out for a bit and consulted with one of the neurologists to get a second opinion about whether or not to wait until there is another seizure (if ever) or prescribe the MRI right now, she mentioned that toddlers need to be sedated for MRIs because they are wiggly. The neurologist said better safe to do it now than not do it and find out worse problems later. I agree.

We have to call and make the MRI appointment. In the meantime, we are just hoping it is nothing and she’ll never have a seizure again. All the while watching her and then reporting anything we notice. If she does have another seizure (non-febrile and when someone is observing) then she’ll likely have to start medications.. more for prevention, not so much for stopping seizures.

So that’s the lowdown on the EEG consultation. We’ll continue to keep you updated as we find out/experience more. Thanks for your thoughts and prayers!

Katie’s Possible Seizure in June

I began blogging on Katie’s seizure history from February here and decided to split it into different blog pages. This post is regarding her second episode of what I believe was a seizure. I want to blog about it so that I can have an account for future appointments and for anyone else who is curious about Katie’s past and present seizure history.

So fast forward from February 10th, 2009 to June 15th, 2009. Katie often wakes up early around 5:30 a.m. then comes in our room and sleeps in our bed. By that point Doug is usually up getting ready for work so it isn’t a big deal for me to share with her (bonus – I get to keep sleeping!). So this particular morning she was sleeping in a bit later I woke up and just watched her resting.There is something so serene and peaceful about a sleeping child. Then I watched her face go into a rhythmic twitching. The rest of her body as well. Somewhat similar to the times when she had the febrile seizures. I wondered for a moment if it was a seizure and then thought, well, she’s asleep so maybe it is just a very deep sleep.

I got up and about 20 mins later she came into the kitchen. I noticed she couldn’t walk very straight and it seemed she could very easily fall down. Katie was really quiet and kind of looked really ‘out of it’. I picked her up and sat with her on my lap. She had a ‘what’s going on’ expression on her face and when i said Hi Katie and asked her to talk to me, she was unable. I could see she was trying to talk and the corner of her lips wanted to move but just couldn’t. I gave a minute or so let her walk around and asked some more questions. Same wobbly, same inability to talk. Normally when she wakes up, she runs right out and demands breakfast “I hungee momma.Yets Doh (Let’s go!)”. I offered her breakfast and water and she wouldn’t take it. Probably after 5-10 minutes had passed, Katie was then able to speak again. It took a good 20 minutes for the walk to regain her normal two year old self. Several people have asked whether she had a fever or any other illness going on – the answer is no. She had a little cough but nothing major.

I called the doctor it was almost 8 a.m. and they finally called me back at 11:30 a.m. – actually I called them a few times and this is when I finally got to talk with our pediatrician’s nurse. Of course when I described what went on they asked us to come in that day. Our regular ped. dr didn’t have an appointment until evening so I took an earlier appointment with a different doctor. This pediatrician was great (we like our regular one a lot as well – wish I had as much sucess with a doctor for myself!). She said it sounds like it may have been a seizure but she didn’t want to call it that just yet. Also she was concerned about the number of seizures that seemed to happen on that evening in February. So Katie was referred to a neurologist at Children’s Hospital. I worked on making an appointment and the soonest they can get her in is at the end of July for an EEG Sleep/Awake Screening and then a consultation in early August. The test is crazy to prepare for… they asked us to wake her up 3 hours before her usual wake up time and then keep her awake until her appointment starts. then they want her to fall asleep. That means 3 a.m wake up (and one of us has to stay awake with her!) then stay awake until 12:30 p.m. Maybe we’ll just hang out at a coffee shop all morning. LoL. They asked me if there is anything we should know about her before the exam. I said “Katie doesn’t like to go to sleep”, they just laughed at me. Then I asked if there is a napping room available for me after the appointment is over. Another laugh.

So until then we are choosing not to worry until we need too. And enjoying every sweet cute moment with our baby doll in between. She’s our smiley sweetie. Ok except when she is in terrible stubborn two’s mode, but she usually bounces back pretty quickly.

I’ll make sure to update when we find out more at the end of the month.

Love you Katie-bear. ~Mommy

Katie’s Seizures in February

On June, 15th 2009 Katie had what I believe was a seizure as she was sleeping in the morning. The pediatrician we saw thinks it probably was a seizure by the way I describe it but says she can’t make a complete diagnosis without the opinion of a neurologist. We’re pretty certain it was not a febrile seizure because Katie didn’t have and hasn’t had a fever which generally is a symptom of those types of seizures.

I’m thankful for Facebook and the way one can post a concern and so many others will chime in with prayer, encouragement and condolences. I posted bits and pieces in my status updates and then in my ‘notes’ after I took Katie to the doctor.

Some history: Katie had what we were told was likely to be febrile seizures in February of this year. It was two nights before we were supposed to leave for a family vacation to New York and the East Coast. I came home late from a meeting at church and Doug had been caring for a sick Katie who had been sent home from daycare with a fever. It kept rising and she was truly miserable. So when I got home around 10:30p it was my turn to cuddle her. At one point I took her temperature and she had a 103 degrees F. So I gave her some tylenol and sat down with her.

The next thing I knew she went limp in my lap, her eyes rolled back in her head and her face and hands started twitching in an oddly rhythmic way. She would not responsd to me calling her name or trying to wake her up. When the twitching stopped she just sort of stared for a minute and took a bit to come out of her daze, the limpness went away but she was pretty out of it.

During that process I freaked out and called 911 saying I’m not really sure if I need to be calling but I didn’t know what else to do at almost midnight. They asked a few questions fast and sent the medics to our house. Medics came, checked her out… at that point Katie was her normal 1 yr old self with a high fever. They told us just to keep her in diaper only – no clothes and give tylenol/motrin as needed. There were three medics and they all said it probably was a febrile seizure but not to worry about it. One guy was a little apprehensive to say that is what it was because she wasn’t wildly convulsing for a long amount of time. They all told us not to worry.

Fifteen minutes after the medics left I was on the phone calling them again because Katie was seizing again… just the same as before. At this point I was realizing she may have had a seizure earlier and I didn’t even notice what was going on, just thought she was sleepy. Medics arrived the second time and again Katie was “fine”. They did want her to go to the ER though since it was a second call in one night.

So about 2 am I took her to Evergreen in Kirkland. As we arrived the admitting nurse asked “What are we seeing Katie for tonight” and on cue Katie started another seizure and I simply said “This.” They rushed us into a room to get her checked out. Her episodes were all less than 5 minutes so she was OK again by the time we got into a room. The doctor checked her out for everything – eyes, ears, breathing, blood oxygen, urine for kidneys and infection, etc. She still had the fever and the only thing he could deduce was that the fever spike had caused the seizures. He gave the usual tylenol/motrin spiel, to watch her and call if there are any further symptoms.

I think I slept in her little toddler bed with her for a little bit and then went back to our bed when Doug woke up. Katie ended up in my bed and I remember watching her at one point .. her face was twitching like an infant baby in REM sleep mode her breathing was a fast deep shallow breathing though and it only lasted for a few seconds. Her fever had gone down and I thought that maybe it was just the REM sleep thing. I grabbed either the camera or my BlackBerry in case there was another little episode. There was and I caught a few seconds of ‘footage’. For some reason I didn’t call the doctor. Katie has been fine since then up until June.

See my Katie’s Possible Seizure in June blogpost for the rest of the story.