What's next?

Early August
Neuro-psych retesting

Lily & friend at ballet camp.

You can see that she has her old shape back.

Now we're getting somewhere!  Spring, 2010

After so many months of disappointing results with every attempt at fine and gross motor skills application, Emily started first physical and then occupational therapy sessions as a rather rude and oppositional girl. The physical therapist was up for the challenge at first, noting that her behavior was driven by the failures of the past coupled with the hormonal effect of the steroids. However, she soon had had enough and sent us on the “work-at-home” program after about 5 sessions. Emily was so sad at that loss of extra attention and support. It was during these sessions, though, that the biggest signs of progress began to show. Prior to the prednisone course, Emily scored in the single digits for motor planning.  She could not interpret a direction physically, nor could she copy an example. I (mom) dissolved into tears when she lifted a knee as directed, and copied arm positions over her head. It was a moment of Heaven I don't think most people would notice. The occupational therapist seemed unphased by her attitude and successfully coaxed Emily into several projects and tasks. After a few sessions, she felt confident in putting Emily through an assessment. Our girl, who was in the 4th percentile 10 months earlier, scored in the normal range for her age! It was unbelievable. Though not noticeably bothered by Emily's attitude, this therapist did note a consistent problem with impulsivity. She emphasized this point in her report, and the issue would come up again later.

It felt like the structure of both these therapies were helping to shape and improve her behavior and attitude, but sadly, they did not last long enough to be that solution. We got started with a behavior therapist at Children's and began work on Emily's anger and sadness, as well as the inconsistencies at school and at home. She had weekly appointments through the rest of the spring and into the summer. There were terrific improvements in her mood and attitudes with others. We feel this is a result of her natural development and the fading of the hormone effects as well as the regular therapy sessions. Unfortunately, she consistently responded poorly to a full range of behavior-mod strategies and organization tricks and continued to struggle in a scattered way. We took another look at previous reports and found sufficient clues to put on the ADD trail. We collected data and surveys and have an evaluation scheduled at the end of the summer. In the meantime, we have been studying various ADD resources and it really seems to speak to our kid. We have applied several techniques and ideas for working with “attention variable” kids and have noticed great progress in our entire household.

It is a recurring message in exploring ADD that you get the child help before the damage to the self-image is too grave. It is stated like a given in all cases that the poor self image is inevitable. My goodness, another beat-the-clock situation. More and more studies of ESES (Emily's type of epilepsy) are emphasizing the dire consequences of long-term spike wave activity. Thank God we beat that clock. Pray those spikes never come back.

Good News, but still tough, Winter, 2010

As we went into the “after-ending-Prednisone” EEG in early January, we were almost certain the old brain wave pattern would be back.  Dr. Jansen said, if that were the case, we now know that the steroid course works for Emily and we would put her back on it.  This time, however, we would start at the smallest dose and work up until we saw an improvement instead of slamming her with a wall of it at the front.  To our surprise, the EEG read a normal pattern once again!  So, now what?  She's inattentive, scattered, moody, explosive...what do we do about that? She's totally inconsistent at school, and the weight isn't “falling off” the way we had hoped.

After trying for 5 months to connect with some kind of emotional therapy for Emily, we went back to Seattle Children's and pleaded for help.  They put us with a psychiatrist (possibly because of the med connection?) who specializes in 0-5's (Emily is almost 7) who did a couple data collection sessions with us parents and a meeting with Emily.  It wasn't at all what we were hoping for, but a few bits of useful information came out of it, and more importantly, we were in the system.  Next came a referral to a behavior therapist to be started in the Spring.

Working with our girl this winter is minute-by-minute management.  She has extreme highs and lows emotionally, behaviorally, and in areas of confidence and even ability.  Not to say there have not been noticeable improvements, however.  The weight is gradually coming off.  Her teacher's favorite thing to remark is, “She's RUNNING across the playground, PULLING UP her pants” reflecting both her energy returning and her shrinking size. I was glad to teach him about the cinchers in kids' pants these days.  What a great invention.






We're hanging in there, December 2009

We have made the final dose reduction this week to just 1 ml, twice per day, every other day. This will continue until Jan. 7th when we will stop the Prednisone altogether.   Despite the dose decrease (she started at 7ml in July), her extra weight is not coming off in the way we had hoped.  We have heard from other families that the med has to be completely stopped before we’ll notice anything significant.  She seems to have maxed out at 75 lbs, 50% above where she started.  For the past several weeks, she has hovered around 72 – 74.  Her appetite has returned to that of a normal 6-year old.

Emily is consistently better at playing on her own and maintaining interest in things than she ever was before the Prednisone.  She devours dot-to-dot and color-by-number books, and her reading is developing rapidly.  She continues to struggle with aspects of coordination, both from the weight gain and the lack of development in that area, so Physical and Occupational Therapy sessions are undoubtedly in our future.
 

We repeat, HOORAAAAYY!!, October 19, 2009

Fourteen months since the first of Emily's seizures and we are happy to report that she had her second normal EEG in a row. We made a trip out to the Children's facility in Everett so that they could run a 3-hour long test with Lily asleep and awake. All indicators that day were that it looked good, but we needed to get the official word from Dr. Jansen which happily came the next day; another normal reading.

The love/hate relationship we've had with the Prednisone continues, however. On the one hand, it seems to have done its job. It truly is amazing the range of conditions on which this drug is successfully used. On the other hand, Lily is up to 72 pounds at her last weekly check-in. We have seen an apparent decrease in her appetite in the last couple of weeks, back down to "normal", or at least normal for her. We've got our fingers crossed that this is a sign that her weight gain might be at least leveling off, if not starting to go down. Doctors are not concerned with this, nor with her lack of interest in PE and playing at recess. They are confident that when the weight comes off, she'll return to her formerly active self.

Her backslide last winter did a number on her emotionally, and her confidence is sometimes shaky. Sometimes it's harder to teach her that she CAN do something than it is to teach her the thing. Her tummy is continually unsettled, and since the med reduces her defenses, we're constantly on guard for any sort of bacterial or viral infection, no matter how minor. The great pediatrics team at Virginia Mason Sandpoint has not found anything of real concern in her weekly urinalisys/blood pressure/weigh-ins.

The spiked brain wave activity captured in all of the EEG tests she's undergone since last March has been suppressed. This was the cause of her cognitive problems last winter which appeared as marked regression of all aspects of her learning around Jan/Feb and which, if left untreated, could have continued to spiral downward leading to possible retardation. Since August, her conversation, interaction, and vocabulary have just exploded and she is gaining academic skills by leaps and bounds. Not only has she caught up to her classmates, she shows a real interest in reading, writing, creating stories and actually enjoys doing her homework. The change in something as simple as coloring in a book is amazing from this past Winter to now. She is cheerful and her sense of humor is fantastic. She continues to sing and her recall of tunes and lyrics is sometimes staggering. Her pitch is WAY better than mine (Dad's) ever was.

From here, we continue to reduce the dose of the Prednisone. She started off with 42mg a day. We've reduced a bit each month and she is now at 24mg every-other day. We will continue to cut that in half on the 7th of each of the next two months until she'll be completely off it on Jan 7. We'll have another 3-hour sleep study EEG done in the second week of January and with fingers crossed, we'll be saying HOORAAAAY!!!!! once again.

The Upper Hand, Sept. 2, 2009

We often have to remind ourselves that, although so many things are going well, our Emily is not “cured” or her condition “fixed”.  We merely have the upper hand at the moment.  That said, this is great!  Her level of understanding and engagement in conversation has matured noticeably, and there has been some clear progress made in physical planning and coordination.  We’ve been so blessed to have you friends and family reading this support us, explore your connections in the medical fields, and enlist a full spectrum of religious forces to focus on our fight.  Our appreciation is beyond measure, and we hope that you will stick with us.

Lily will be beginning school and lowering her Prednisone dose next week. She has put on over 15 pounds in just two months.  We are hopeful that her extra weight will taper with the med dose because if she keeps up this rate, she will double in weight by the end of the course.  She gets tired and even winded easily, and has had significant tummy discomfort.  On the up side, she doesn’t seem to suffer the emotional dark clouds that gripped her in the first weeks of the steroid.  She’s laughing easily again.  Yeah.

HOORAAAAY!!!!!, Aug 3, 2009

Exactly one year from the start of this odyssey, we are thrilled to announce a huge victory: Emily’s brain activity has normalized as a result of the Prednisone and the spike waves are nearly non-existent!

The month of July was especially challenging. We started by welcoming Dr. Nyweide as Emily’s primary pediatrician to monitor the drugs she would be taking. We began the liquid steroid Prednisolone that day and set up the weekly schedule for monitoring. The next day, Emily had evaluations from Occupational and Physical Therapy. Both had her percentile in the single digits and strongly urged regular therapy services. It was a long and frustrating day for Lily; performing tasks with little success under the focused supervision of 3 or 4 adults. We had enrolled Emily in a summer aikido course to help with body movement and to get her around other kids, and we were enormously blessed to have gotten an instructor whose profession is teaching special education programs. However, despite her patience and understanding in working with her, Emily is just too frustrated by her limited ability to enjoy the experience. Add to that the emotional turmoil caused by the steroids and you are hard-pressed to locate that cheerful kid you used to have.

Speaking of the steroids, we are deep in the trenches of the other common side effects, weight gain and appetite increase, and her appearance has changed dramatically. Our understanding is that we will be tapering down on the medication through Christmas and that all of these side effects will disappear, but I wonder how her classmates are going to react. They are a kind and caring bunch, but this may throw them for a loop.

2 Weeks of Research, June 20 to July 5, 2009

Dr. Jansen sent us a couple of articles to study that make an excellent case for the steroids.  As these are highly technical articles, they have required many “google tangents”. These start as a search for a definition and lead to threads of information and discovery that are both enlightening and crushing.  Through this type of research, we’ve found out the other names for the various medications, that ESES was first identified in the 70’s, and that there is a very important clock running during our quest to suppress the spikes.  It seems that although this has only been studied a little over 30 years, the experts are alike in saying that this spike wave activity, if untreated for 36 months, will cause permanent cognitive damage.  Which means, when the brain waves do become normal, as they are likely to do at the onset of puberty, the prognosis for normal cognitive function is very poor.  One article marks the start of this clock at the “observation of global regression” which we think was around January for Emily.

Our sister-in-law Catherine has taken our case to research experts in cancer and pharmaceuticals to whom she is related.  Their messages were similar, which is that the Depakote has a longer list of symptoms and sounds scarier (than Keppra) because it has been around longer. They both urge down-playing the threat of side-effects and moving quickly to meet the recommendations of the doctor.  We’re not sure if they feel the same way about the steroids that we are now favoring.

Speaking of trusting the doctor, Newsweek came out with an article this week that rated Children’s Hospitals.  Seattle Children’s ranked quite high, and its neurology department is in the top 10 in the country! The accompanying article gave tips to parents whose children have chronic conditions or other situations requiring hospital care.   Parents are advised to check out the assigned specialists, and it occurred to us that we never did any research on our doctor.  As it turns out, our Dr. Jansen is the national award recipient for developmental disorders (like our ESES) in neurology.  Huh.  Looks like we’re in good hands.

The next essential addition to our team is a PCP to monitor Emily’s over-all health as we add medications. We have been without one through the peak months of this because we had been working with a “residency” pediatrician through the UW medical clinic.  She “graduated” and moved on and we hadn’t found a replacement.  We also knew that we now needed someone long term for this battle.  We contacted the Virginia Mason Clinic at Sand Point Way and are hooking up with Dr. Kristin Nyweide.  We meet her on the 6^th.

On Thursday, July 2^nd, we had a phone appointment with Dr. Jansen to decide the next move. We reviewed all of the above and together decided to proceed with the Prednisolone (this is the liquid form of the steroid Prednisone).  Emily will need to take it twice a day along with her Keppra, will also need to take Pepcid to help her stomach with the Prednisolone, and see the PCP every week for checks on blood pressure and sugar levels.

Disappointing News and High-Stakes Decisions, Week of June 15 – 19, 2009

Emily had EEG #3 on the 17^th, and it looked to us to be more of the same. Dr. Jansen’s email the next day confirmed that she is still exhibiting continuous discharges (spikes) when she falls asleep. Although we have observed significant improvement in her daily life from the Keppra, the urgent goal is to suppress the spikes. Dr. Jansen recommends that we start a course of prednisone (steroids) along with the Keppra as our next strategy. Her list of potential side effects (increased appetite (very likely), weight gain, irritability, stomach irritation (she would take Pepcid to protect her stomach), increased susceptibility to infection, increased blood pressure, and increased blood sugar) as well as those we’ve read and heard about (“child doubled in weight and no change in the EEG" and "the school sent us packing because he got so aggressive", natural growth patterns being inhibited, joints easily damaged, and scarring on the brain that lasts the person's whole life) have paralyzed us with fear. We arranged to have a phone appointment on Friday (19^th) to talk over our questions.

Several weeks before, Dr. Jansen had ordered a blood draw to measure the Keppra in Emily’s system. We knew this would be horribly traumatic for her, so we had been procrastinating.  To our surprise and unbelievable luck, an old friend passed through town and saved us this piece of torture. Katie was a friend of ours from California who had moved to Texas and built a career as a Child Life Specialist in a hospital in Houston. Not only does she have extensive experience with kiddos and hospitals, but she is a rare survivor of Leukemia and has personal experience with a blood-born disease. She had loads of valuable input over the whole scope of this adventure, but none more timely than the tip on a “magic cream” for numbing the site of blood draws, injections, and porta-caths. Unbelievable!  It requires a prescription, but basically, you smear this lotion on an hour before, protect it from smearing or rubbing off, and you’ve got clear sailing for the needle. We got the cream during the week and went in for the blood draw on Friday before the phone appointment. Lily sat unbound in a chair, held her arm still while watching a Tinker Bell video, casually asked why the tube had turned red, then announced “that was easy” as she bounced out of the chair to pick out her stickers. Again, unbelievable.

We arrived home to our phone call and asked lots of questions regarding the recommended course of action. We were concerned that we would be giving up the benefits of the Keppra to try something new, but Dr. Jansen plans to add, rather than substitute, the new med. We also asked about other options as we had heard not a single positive story regarding steroids. She said that we could reconsider the Depakote that she initially recommended. After such easy success with that day’s blood draw, we were now willing to consider this. There is also, apparently, another medication to consider later on that has been successful with ESES that is only available in Canada…good thing we live close.  :)  For now, Depakote or Prednisone…that is the question.

Neuro-Psych Exam and Review, June 11^th and 16^th

We were a little apprehensive about Emily’s ability to sit in a small office for an entire day with a person she didn’t know, but she did a terrific job. At the start of our 8:30 a.m. appointment on June 11th, Emily was introduced to Donna, the one who would be administering the exam. And, after kissing Mom and Dad good-bye, they set right to work. She started by giving Emily two preliminary tests. These would determine if she would be OK to take the IQ test for 6 – 12-year-olds, or if she were impaired to the extent that the test for 3 – 7-year-old would glean more information about her. At 6 years and 3 months, she’s right on the line for the two tests. While she worked on these, we were in another office with the Neuro-Psychologist going over history, questions, and concerns. As each test was complete, the materials would come into the office with us and the Dr. would react with either “very good!” or “that’s normal” and so the 6 – 12 test was given the go-ahead. Lily continued working with Donna until 12:00 when she had a lunch break with us.

We went to the hospital cafeteria, then to a playground there on the grounds. She went back in at 1:00, and then worked until 4:00. She was encouraged along the way with stickers, which she used to decorate a folio. At the end of the day, she was invited to choose a prize out of a treasure chest. Donna reported that she had applied good effort to all the tasks except for the last one that required the use of a blindfold. We can’t recall Lily ever experiencing a blindfold, and Donna said that she was very uncomfortable and couldn’t make sense of what was being asked, so they decided not to pursue that final test.

Five days later, we had a 2-hour appointment without Emily to go over the findings. This was an extremely enlightening meeting for us, providing answers to those burning questions like: what can’t she do and what won’t she do? Also, is she going to be able to handle summer camp? School? Extra classes and activities? Keeping in mind that the most consistent feature of any epileptic condition is that most things are inconsistent, here is a general picture of the results:

The highest scoring area was verbal, ranging from the 99^th percentile to the 37^th. The scoring in math was average for her age, varying within the standard deviation.

Her greatest and most marked deficiency is in motor skills. She could not physically interpret directions beyond the simplest level, and could not copy patterns demonstrated for her beyond the sample. There was next to no cross-coordination exhibited, as in alternating movements from side to side, or following a variety of direction.

The doctor is referring us to an Occupational Therapist for an evaluation, and Emily may be getting further care in that area. She will also be sending us a written report of the Neuro-Psych exam results and findings in about two weeks.

It is difficult to express how valuable we are finding this experience. We feel we now have far more strategies and options in working with Emily, and we feel some of the fog that has clouded our view of this has lifted.

No news is good news, May 18

We saw Dr. Jansen today for Lily's first follow-up visit since all the recent testing. There wasn't a whole lot new to report. She did confirm that the MRI was normal and that the EEG was much the same as the one from March... nothing new there. She is encouraged by our reports on Lily's daily improvements, but still focused on the EEG reading. She is hopeful that the Keppra is the right medication and has increased the dosage. The goal in the treatment is to get the EEG back down to a normal pattern. Laura ran through a list of questions... many regarding worst cases... and the reply was generally that we didn't have to worry. 

Good news, May 12

Today was Lily's MRI. It was not as difficult as the EEG to prep for. We could let her sleep until about 6:00 this morning before having to get her up. (Much better than 2:30am for the EEG!) She couldn't have anything to drink after 6:30 so we had to get some juice and her meds into her before then. She's getting tired of trips to the hospital, but after some mild objection on the way down, we arrived at Seattle Children's to check in. They were as wonderful as ever.

After getting checked in, the anesthesiologist came in to explain a bit more about what was next. Lily was just fine, but I tell you, the sight of watching her go under with a mask over her face was not an easy one to witness. The doctor and nurse were both very positive and encouraging as Lily passed into sleep and then, all of a sudden, we were told that we had about 20 minutes and "see ya later". We weren't ready for that just yet and it was very hard to walk away and wait for them to bring her back to us in the recovery room. About 30 minutes later, they wheeled her in and again explained. Everything was just fine and she would wake up on her own in 15 to 30 minutes. She did and she was just fine. They told us that Dr. Jansen would review the images today and that we would get a call if there was anything alarming or that needed immediate attention.

Later in the afternoon, the phone rang at home and the little screen read "Seattle Children's". Not a call we wanted to get. Laura answered and was stunned to hear that it was Dr. Jansen herself calling for "the parents of Emily Higgins". She was calling to let us know that the MRI showed that everything is just fine. There are, as hoped, no anatomic anomalies (read injury sites, scarring or tumors). The really good news that she reported is that this puts Lily firmly into the column of "kids who will outgrow this". After the news of last Friday's EEG, this was a huge relief. So, what of that news? How do we justify seeing improvements in her every day since she started taking the Keppra, but apparently no change in her EEG? Laura half-jokingly warned Dr. Jansen that we will expect her to explain that to us when we see her next Monday. She said that she will try.

Week 5, May 11

I (Laura) finally found some family stories and message boards regarding ESES. Wow... I don't know if I'm happy to have the information or scared to death about what could be ahead. I guess I'm both at the same time.

In all, this week's report is the same as last: improved engagement at home and in school, and unusual twitching at night. (the EEG tech made an effort to note those when they happened during the test)

Week 4, May 6

Emily finished her fourth week (and first bottle) of the Keppra yesterday.  We had the prescription refilled and are pressing on.  Emily continues to flourish, bringing tears of joy to her family and teachers. Her spelling tests have become huge successes for her, where just two weeks ago, they caused such anxiety that her teacher would mark "decided not to try today" on a blank form.  Her handwriting is developing more control and consistency. Throughout the time she’s been on the medication, she has been more perseverant in writing projects, and is now often not the last one finished.

I noticed on the report that Dr. Jansen and Dr. Ann made and sent to us that Emily was unable to follow or even copy simple physical directions, so I have made special note of the way she has improved in this area. She is not yet able to follow verbal instructions of "right hand, left foot" etc., but can better copy examples given.

I read about a study on the Epilepsy website where children that had experienced seizures had exhibited preferences for foods found in the Ketogenic Diet (a special diet high in protein and fat and low in carbs that has been known to reduce seizures in some kids).  Reading the list of preferred foods gave us yet another in a string of "ah ha" moments regarding Emily.  As a toddler, she was the only child I knew that would not devour noodles and other carbs.  She has always been a huge fan of cheese...in fact her first sentence was "more cheese, please".  She has somewhat given up quesadillas because she cannot separate the cheese from the tortilla.  She has also been known to lick the butter off the bread and not eat the bread at dinner.  Reading about the kids' responses in that study was amazing. One child would remark, as she licked out the butter or mayo sample, “this one makes me feel better!”

Emily continues to twitch in her sleep, and I am wondering if this is normal.  The doctor says that it is not usually seizure related, but will hope to see some examples of it during the next EEG (this Friday) to get a better idea.  It is not usual for her, but not much is the same with her these days.  It does make me extremely anxious that the seizures can somehow "break through" the medication and come back, and we are trying to find out if this is possible.  Does the brain ever adjust to medication then overcome it to go back to the previous state?

Week 3, April 28

Emily has had a good week over-all.  We began the full dose on schedule last Tuesday, and have continued the multi-vitamin.  She continues to exhibit improved engagement in everything from school lessons to conversations with family, and has made some growth in her writing and handling of eating utensils. In music class with me (Mom), she is very much the same as before the meds...laying down or upside down, and not quick to participate.  These are all behaviors her classroom teachers tell me are typical of Kindergartners. Another feature noted this week is far less interest in TV.  She used to almost "need" to have it on, but now seldom even asks for it.

The area of change that I find most noticeable is in every aspect of her sleep.  She now goes to sleep in a fraction of the time she took before the medicine.  Also, she feels cooler while sleeping than before.  We used to check to see if she still felt hot when we thought we heard a seizure.  She used to feel cool only when she'd had (or was having) one.  She sleeps very still now, whereas she used to thrash around quite a lot, and as a toddler, would even lift up to sitting and throw her upper body back to the bed.  As before the meds, she continues to stay in her bed all night only a couple times a month.  Sometime in the night (time varies widely from 11pm to 5am) she will come climb in with us, teddy and pillow in hand.  I seldom notice her now, though, because she sleeps so still comparatively.  One thing from the last four nights that has made me anxious is that she will be "twitchy" in little places around her body after she goes to sleep.  It reminds me of a cat when people imagine it is dreaming. Something about it makes me worried that there will be another seizure.  I'm hoping the EEG next week will indicate that she's not prone to them now.

The Epilepsy site is very informative and interesting. I haven't found Emily's specific condition, though.  I'll keep poking around.

 

Week 2, April 20

We've had mostly a good week with a couple of hiccups. We increased the dose on schedule last Tuesday, and we also began giving her a multi-vitamin that contains 100% of the RDA of B6.  We've noticed this week that while she is still extremely wiggly and often has trouble sitting still, it appears to be less of a distraction or obstacle for her.  She continues to report her dreams in the morning, and a new feature for us is that she will chime in on conversations going on around her.  It used to take a team of wild horses to get her attention when you wanted it, so to have her say something relevant out of the blue is very startling...in a good way, of course.  :)  One thing that was not so welcome occurred last Wednesday and Thursday and so may be connected to the dose increase. She said a couple things to her teachers that were very down on herself: "I will never be happy" when told that her teachers plan and prepare their lessons very carefully so that the kids will have fun and be happy. And "I am a bad kid (or naughty child)" when studying a Native American folktale about a witch that would eat the naughty children of the village if they didn't behave. Those views didn't seem to carry on past Friday, and her mood over-all has been remarkably happy.  I've also been wary of her self-image as she becomes more aware of the skills of her peers.  She had pretty much ground to a halt a few months ago, and her classmates continued to progress without her.  She never noticed anyone else before, and now that she is, we want to make sure she feels OK about herself.  Her teachers were alarmed by her statements, but report that there haven't been any more like that.

I enjoyed reading some of the patient testimonials on the Seattle Children’s Hospital website, and hoped that there might be a place to read of other family's experiences with Emily's condition.  Dr. Jansen told us about www.epilepsyandmychild.org which is through the Epilepsy Foundation. 

Week 1, April 13

The paperwork regarding the medication said to call the doctor if any "common side effects occur".  It doesn't mention hyper activity specifically, but our neurologist had named that as the primary side effect.  We are not sure if hyper activity is what we are seeing.  Her bursts of high energy and crazy behavior are intermittent rather than constant, and don't seem to directly follow taking the medication.  We have thought at times that these moments are possibly more a result of improved rest or even excitement over improved understanding.

Her teachers were initially over the moon with excitement on Wednesday and Thursday (the medication began on a Tuesday night).  Her participation made marked improvement immediately, she was able to follow along with stories and discussions, followed through with projects, and even noticed other students' interests and interactions with her.  Last Friday and today (Monday), however, she has developed rather loud and disruptive behavior that is extremely difficult to manage, and today began to re-implement the stalling and uncooperative behavior we saw before the medication.

At home, she is clearly resting more deeply...moving around very little and certainly not thrashing about as she did before.  She has reported her dreams every morning since the first dose.  She stays engaged in longer stories at bedtime, and is experimenting with self-sufficiency in dressing, eating, and other personal routines.  She now pays attention to conversations that are not directed at her, and is over-all more observant.  In the past 3 or 4 days, she has become more difficult in her interactions with us...intentionally negative, contrary, and noticeably more selfish.  She is often thirsty and will down an entire cup of water at each drink rather than sipping throughout the meal.

Over-all, we are thrilled with the improvement this medication seems to be providing her.  We let the doctor know of the other issues, though, because we don't really know what is important to note at this stage.  The doctor wrote back to say that if the behavioral issues get worse along with the increase in dosage, we can assume it’s a side effect of the medication.  And, if so, we can try the vitamin pyridoxine (which is apparently B6) which has had success in some kids.  If that doesn’t help, we may need to try another medication.  Speaking for both parents and her teachers now, the behavior would have to get pretty bad for us to give up on the positive changes we have seen since the start of the Keppra.