9/2/09 – Seizure Follow Up Part 2

Shortly after my last post, Renny started to become more like her old self.¬† In fact, it really was after her checkup with neurology, where she was making us out to be liars ūüôā that she seemed to get better.¬† So, we had a good almost-full week where she was pretty much back to normal.¬† The sleep-deprived EEG went okay.¬† T woke her up at 3 a.m. and stayed up with her until 6 a.m., and then I took over until 9:00.¬† The appointment was at 10:00.¬† She had to have 25 electrodes “glued” to her head, and she did not like that AT ALL.¬† After 20 minutes or so of that, we had to get her to go to asleep, but she was so worked up it took at least 15 minutes or so to calm her down, and she did finally fall asleep in my arms.¬† After 15 minutes of sleep time, we had to wake her up again.¬† A bright light did some various flashing for a few minutes, and then all of the electrodes were taken off with some latex-free lubricant stuff, and then we washed her hair quickly and left.¬† The whole appointment took about an hour and a half; we were home by noon and she slept the whole afternoon.¬† We will learn the results from the test on September 10th.

So, that was last Wednesday.¬† Then Saturday comes, and Renny wakes up with puffy reddish¬†eyes.¬† I think perhaps it’s pink eye.¬† No big deal.¬† But then throughout the day, the puffiness and redness gets worse…and we see some rashes here and there on her arms, leg, and a little on her face.¬† T does some researching and finds that an allergy to her anti-seizure medicine, phenylbarbital, can show up even up to two weeks after first administered.¬† We call nurse advisory, who says all of the signs point to an allergy, who talks to the neurologist on call, who says to take her off the phenylbarb and makes a new prescription for a drug called keppra.¬† This sounded good to us, because we also worried that perhaps her latex allergy was jumpstarted somehow.¬† She had taken all of her clothes and diaper off during her “nap” time that day and pulled the sheets off the crib, so she was just on the mattress, which is vinyl, which usually has latex.¬† But, we left it at assuming it was the medicine.

So, Sunday we fill her new prescription.¬† I love it!¬† With the phenylbarb, it came as a small pill, and we had to hide it in food for her, either whole or crushed, but she started figuring this out and was not wanting to take the food or was spitting the pill out.¬† The new stuff came as a grape-flavored liquid, administered by syringe.¬† Yippee!¬† (The things I get excited about…) BUT, throughout the day Renny’s eyes are extremely puffy and very very red.¬† She just looks miserable.

Our oldest son had a doctor’s appointment on Monday, so we decided to take Renny with as well to try to get her pediatrician to take a look at her, just to see if she saw anything else.¬† We get her in, and after talking with her for awhile, she has Renny come over on my lap and gets a good look at her.¬† After one look at her eyes, she says, Oh!¬† That’s adenovirus!¬† Say, what?¬† It’s called a summer virus, characteristic with the very red eyes, and the swelling and rash can sometimes accompany it.¬† And no real drugs for it, it just has to run its course.¬† SO….that’s that!¬†¬† For now, though, we’ll keep her on the keppra.

So, today (Wednesday), she had an MRI in the morning, followed by spina bifida clinic in the afternoon.¬† This is when various specialists (urologist, neurosurgeon, orthopaedics, OT, PT, etc) rotate around and come in to examine her and check things out.¬† Most visits were fine and with no real areas of concern.¬† However,¬†that is not necessarily the case with the neurosurgeon.¬† He looked at the MRI results and explained that Renny’s backside of the brain was a little off, structurally wise.¬† He said it was called Polymicrogyria, which¬†can cause a¬†person to be prone to¬†seizures and developmental delays.¬† When asked if this may be why she isn’t talking yet, he said yes, most definitely.¬† Wow.¬† When asked if this was a permanent thing, he said, yes, in the sense that she may always have developmental delays, but that the speech could very well come, just much later down the road than normal (obviously), and that a lifetime seizure disorder could be a possibility.¬† He did not necessarily state that she was doomed, but he also didn’t really give us any encouragement in any way.¬† We felt a little depressed after that.¬† Along with all that, the catheter from her shunt that goes into the ventricle in her brain is “getting short.”¬† So, that will need to be replaced within the next 3-6 months, which means another surgery for her.¬† Ugh.

Though depressed about this news about her brain, T and I discussed how we know that she is young and that the brain has a great capability to change and grow through stimulation, and we just need to work more with her to try to do this.  Right?

We are so ready for a stretch of uneventful “stuff.”

Prayer Requests!!¬† Please, please pray for her brain to “outgrow” or “overcome” this structural problem, or really to just “get better”.¬† Please pray for her ability to speak.¬† That she will not have any more seizures.¬† That she will learn to walk.¬† And that she will not have anything else “go wrong.”¬† Thank you…..

8/22/09 – Seizure Follow Up

It was a long week with Renny.¬†¬† She left the hospital with two prescriptions:¬† phenylbarbital¬†(anti-seizure) and amoxicillin (antibiotic).¬† ¬†The first few days after returning from the hospital were…awful.¬† She was so irritable, uncomfortable, whiny, flailing herself around, needing constant attention, oh, and diarrhea…just not good…and just…high maintenance…constantly.¬† And obviously we felt horrible that she was feeling so bad inside.¬† We called the hospital on Sunday to explain our concerns; they told us to call neurology on Monday if she wasn’t any better.¬† We called neurology on Monday to explain our concern; they told us to call her pediatrician on Tuesday if she wasn’t any better.¬† We felt that we were just brushed off both times and were not very happy with that.¬† But, we waited until Tuesday to call pediatrics and talked with Renny’s nurse.¬† Finally, someone who was interested in our concerns.¬† After listening to everything, she talked with the doctor, who talked with the urologist, whom both decided that Renny did not need to be on the amoxicillin, something about the extremely minute amount of bacteria in the culture and how it may have just been a contaminate and not an infection.¬† In any case, we were glad to take her off of it.¬† I had amoxicillin once many years ago and had extreme stomach cramping from it.¬† It was theorized that perhaps this medicine was a main culprit of her irritability and most certainly the diarrhea.

Wednesday morning arrived, and Renny woke up….an…almost new person.¬† Though still not herself by any means, she was noticeably less irritable, and a little happier.¬† Though relieved that she was better, we were still concerned because she still was quite far away from her normal self.¬† Still quite high maintenance, needing a lot of attention, especially because she wasn’t just sitting down and playing like she used to.¬† She seemed somewhat happy when moving around, climbing on the couch, rolling around on the bed, etc., but that’s it, and that’d be find except we just really couldn’t be with her moving her around all day!

So, Friday came, along with her neurology check-up appointment.¬† We expressed all of these concerns with the doctor, and of course Renny was as happy as could be in the room, so she made liars out of us!¬† No, they did believe us, and told us to basically give it a month, and if she still seems irritable and/or her personality is still not quite the same, then they can try a different medicine.¬† The reason they do not try a different one now is because there are very limited available/approved anti-seizure medications for children under 3 years old.¬† Phenylbarbital has been around for like 60 years and has much evidence for working, so they like to stick to that one if possible.¬† It was also explained again that it was of great great concern that her first seizure was so long.¬† The neurologist said that they get concerned even after a 15-30 minute long seizure, and also why it is so important to prevent further seizures, by using the medication.¬† Having one seizure brings higher risk of having another, so we need to try to prevent it.¬† When asked about possible damage caused by the seizure, he said it is uncommon, but not a given, and also reassured us that if she had any damage we would have noticed by now.¬† Overall, we think she seems okay cognitively, but with some of her non-usual self behaviors….I guess right now I am assuming (hoping)¬†it’s the medication.¬† When I was in the ambulance with her on the way to the hospital, that’s all I was doing, was praying, praying, praying, that she would not have any long lasting consequence, no damage done to her brain.¬† I found out later that that’s what my husband (T) was praying for the whole time too.¬† She seems to be doing all of the same things as from before the seizure – making her signs, nodding yes and no to questions, yelling at her brothers, playing with her doll, etc.¬† She does act a little loopy at times (!) but again I’m hoping this is the medication.

Since Friday’s appointment, Renny does seem to be getter a little better each day.¬† Again, she is still not totally back to her normal self, but she is starting to need less attention, starting to play a little by herself, and more happy.¬† Again, if after a month these side effects hadn’t disappeared, then they would try a different medication.¬† The plan is, because of her age, to keep her on for 18 months, in which the hope is her brain will “outgrow” this seizure tendency per se.¬† Then they will slowly wean her off over several weeks, to allow the body to adjust.¬† Sadly, after taken off medication, she may have a 50% chance still of having a seizure.¬† This depends, I guess, on the results of her EEG tests.¬† We have to take her to have¬†her first sleep-deprived EEG in a few days.¬† We have to wake her up at 2 a.m. and keep her up until 10:00, when her test is.¬† This will give a “baseline” of her brain activity, and because sleep deprivation can trigger seizures, (which hopefully she will not have one) this will catch the brain action during this state.¬† Or something like that.¬† She will start awake, then hopefully she will fall asleep, and the after a bit, they will wake her up suddenly with lots of flashing lights and stuff.¬† Somehow they will get a “normal” or “abnormal” read from this EEG and then do another one after the 18 month period to compare.¬† If it is “normal” both times, it gives her a better chance of not having another seizure.¬† I think I got it right.

Then, the following week, she goes in for an MRI of her brain, to get better more detailed pictures of her brain, specifically the fluid in her brain controlled by her shunt.  This will be good timing, as her neurosurgeon from her birth shunt-surgery will be in town that day, so he can look at the images as well.  Not sure if it would be good or bad to find something there.

SO.¬† Renny is slowly recovering…as are we.¬† It’s been a long process.¬† Stupid seizure.¬† Still mad at it.¬† But, we are getting through it.¬† And I am thankful that she IS recovering.

Prayer Requests!¬†¬†¬† For God’s hand in her healing:¬† That Renny would FULLY and SOON recover from the seizure and the side effects of the medication.¬† That she would NOT (ever) have another seizure.¬† That the EEG¬† and MRI have good results.¬† That there would be no other bumps in her road anytime in the near future.

Thanks!