So...we got some (probably) good news and some not so good (but definitely could be worse) news at Emily's appointment in Boston today. Let me first just say though, for anyone who drives to Boston on a regular basis at 7-8 am on a weekday, my prayers are with you. My sister Suzanne came with me and drove, thank God.
Yeah.
Ok so for the good news...she probably does not have Tuberous Sclerosis. YAY! Her MRI, which by the way, I actually saw for the first time, looks similar but is not quite the same as a person with Tuberous Sclerosis. About 5 doctors have now reviewed her MRI, so I feel pretty confident that she does not have it however, the doctor did offer genetic testing (a blood draw) just to be on the safe side. We did that today while we were there, and should get the results next week. If it turns out that she doesn't have it, which we all suspect will be the case, then we will be done with that aspect of her treatment. If she does, she will have to undergo further testing on her heart and kidneys, which can both be affected by TS.
The not so great news is that she most definitely does have ADHD, inattentive type. Her regular neurologist said that her case is most likely medically based (due to the abnormalities seen in her MRI). I am happy to report though that he is not quick to medicate children, especially at such a young age. Obviously, the decision to medicate or not would have been ours, but I am glad that it was not the first thing he recommended. I just have a strong feeling that in Emily's case, some small changes would benefit her more than, or at least as much as medicine would. So, he recommended that her school, in coordination with Ryun and I develop a 504 Plan specifically tailored to meet her needs. This is very similar to an Individual Education Plan, commonly referred to as an IEP (which is used to help children with academic or learning difficulties) but a 504 is only for children with medical concerns (such as ADHD, Diabetes etc). As you will see if you click on the above link, a 504 plan makes in classroom accommodations for children with special needs that do fine academically.
I think that Emily could and will benefit from such a plan, and am looking forward to getting it organized with her school.
As much as I knew that these would be the results of today's visits, it is nice to have a real answer...at least regarding the ADHD thing. If she does not have TS, this of course will be a good thing but it will mean that they still won't know what is wrong. That is just so frustrating!
I finally heard from Emily's doctor regarding the paperwork I had sent a while back. Her teacher and I had to fill out questionnaires with questions relating to her attention span etc. Well, I should say I heard from his secretary but we have a follow-up appointment scheduled for next Friday...on the same day as her appointment with the specialist she is seeing for this. Yay for making one trip to Children's...even if it will be at 8:00 am.
I am looking forward to the appointment (both of them actually) but obviously, if he wants to see us, he must have some concerns about what the papers show. If there were nothing wrong, wouldn't he just say so? And just a random thing...I never in a million years realized how deeply I could love and feel until I became a parent. Seriously, I physically ache for her and what she has been through and will have to go through...for, well forever probably. Why couldn't all of this just happen to me instead? I would gladly endure if it meant she didn't have to.
"You never know the love of a parent until you become one."
Emily has her appointment with the specialist at Children's next Friday. I am really looking forward to it...answers are always a good thing, not that I am expecting any. I don't mean to sound negative it's just that every time we go to Children's I always hope they will say, "She has blah blah blah. This is how we can fix it. She will be fine in this many days, months, years."
Emily got her report card on Friday. She did well...which was such a huge relief I can't even tell you. I had this feeling that because of the attention span issues she was not going to do well, even though when she actually remembered to bring home the papers she had done, they were all fine. I think that deep down I knew she would do ok...it was just kind of a nagging worry that wouldn't go away. There are a couple of areas that she does need to improve (finishing her work, following directions and things of that nature) but academically she did very well.
It's not often that I question myself as a parent. Quite frankly, I think being a parent is what I do best. Sometimes though, especially when it comes to dealing with Emily, I wonder...could I be doing something wrong? Or not doing something enough? I love her to pieces, not that I think there was any ever doubt of that.
Seriously, there are times when just her prescience melts my heart...and then there are the times that her prescence tears at my heart.
From birth, Emily has been a very active and too smart for her own good type of kid. When I say that absolutely nothing gets by her, I mean nothing. Seriously, sometimes I even think her hearing is super acute. She notices everything, absorbs everything, and understands concepts and thoughts better than the average adult sometimes does...myself included.
I call her type or kind of "smartness" Ryun-Smart. Not a word you can find in the dictionary, although it should be in there. It's not book smart (though they both (Ryun and Emily) are that too) and it's not a common sense type of thing either. I think what it is can only be described as "indescribable."
Ryun has said that some of the concerns we have with Emily (attention and temper control mostly) he remembers having as a child. I used to think things like that (things that really can't be "seen" by medical professionals) weren't really a medical concern at all. I was wrong obviously.
A lot of what we have been dealing with in regard to Emily will probably be improved with a little behavior modification therapy. I don't necessarily mean in a professional sense...just various things we can do on our own that may help.
Although I still have not heard back from the neurologist yet, I am about 90% sure that he will be telling me that she has attention deficit/hyperactivity disorder: predominantly inattentive. I read the teacher's form that was filled out and of course, filled out one of my own. It doesn't take a PhD to figure out based on our answers that something is going on.
One of the main neurobehavioral conditions that are predominant in people with tuberous sclerosis is ADHD. While we don't yet know if she has tuberous sclerosis, based on what I have read, it is becoming more and more likely to me that she does. I cannot tell you how forward I am looking to her appointment at Children's in January with the specialist that deals with these types of things.
I can't help but feel guilty about this. Yes, she quite possibly has a medical condition that very well could be the underlying cause of these problems.even with that as a base though...I can't help but think that there is something more I could/should be doing.
I talked to Emily's doctor on Friday and he said that Emily's MRI resembles something similar to those who have the Tuberous Sclerosis thing. It's not exactly the same but similar. I am looking forward to her appointment with the other doctor that specializes in this type of thing but, unfortunately, it is not until mid Januuary...at 8:00 in the morning on a Friday. That ought to be a fun drive in to Boston. Yeah.
It sure will be nice to get some definitive results though...if that is at all possible.
So, I called to schedule Emily's 3-month follow-up appointment at Children's and found out that she has an appointment with another doctor to evaluate her for a possible diagnosis of this.
Not only did I not know about this appointment, but also I didn't even know that tuberous sclerosis was a possible diagnosis.
So now I am freaking out (probably with no need I realize) because if she does in fact have this, there is a good possibility that Katherine and Julia could have it too. And that is just without a doubt the worst possible thing I could imagine. Emily was the picture of health until she turned 7...nothing was wrong with her...nothing at all.
One child with a serious medical condition is enough...in fact it's too much.
Just because one child has it does not necessarily mean the others will and this is not always genetic. Sometimes there is just a "freak" mutation. As much as I wish Emily did not have to deal with this...I would be ecstatic if she was the only one who had to.
On another and definitely more positive note, I found out that her neurologist sees patients at Cape Cod Hospital every other Thursday! Needless to say, all future appointments will be scheduled there...no more stressful trips to Boston sounds good to me!
So, I have been meaning to do an "Emily" update since we came back from her appointment at Children's last week. It was "good" appointment if any appointment at Children's can be construed such. Provided that all goes well, she does not have to go back for three months, Her medicine is staying the same (same kind, same dose). Every time we go, it gets just little easier.
I mentioned her attention span problems at school (and sometimes even at home) and he gave me a form to fill out, as well as one for her teacher. The form is basically a "Does she do this? Does she do that? "Type of questionnaire which is then calculated on some sort of a graph. It is the form that is used to determine whether or not a child has ADD/ADHD. Her neurologist did not feel that the medicine could be having that side effect but that it was more likely a result of her particular neuron disorder.
Speaking of...her MRI has been reviewed and re-reviewed by the best doctors in the field...and no one has ever seen her particular case before. Neuron Migration Disorders are not common in and of themselves...her case is so uncommon that the best of the best have never even seen such a thing. So, she will not be taking part in the study they had planned after all. Ryun is being scheduled for an MRI to see if what he was told he had as a child (one part of his brain was not as developed as another is what he remembers being told) is the same as what Emily has. If that turns out to be true, both Emily and Ryun will be part of an intensive study trying to figure out exactly what the heck this "thing" is and obviously establishing a genetic connection.
I really, really hope that Ryun's MRI is normal. Please, please don't let this be a genetic thing; I can barely deal with one child having a serious medical problem. The thought that this could affect the other two as well...it's just unbearable.
This is all so surreal. I keep thinking that one day I will be able to deal with this whole thing in a better way. Outwardly, people have actually commented on how well I have been dealing with this...Emily too. When I think about though...God it just tears me up inside.
11/07/04 Last week was Emily's parent-teacher conference.
She is doing very well with her reading (no big surprise there...she loves to read) and is in the highest possible level for her age group. She is doing ok with her math...mostly she just needs to pay a little more attention so that she doesn't make "silly" mistakes.
The teacher did however have a few concerns.
She talks about things that really have no relevance to what is going on (the teacher is doing a math lesson and Emily raises her hand and starts talking about what she did over the weekend). She sometimes forgets to raise her hand.
Apparently, she is having difficulty getting her work done on time. Her desk is very disorganized and she has a hard time finding things that the teacher asks the class to save and take out on another day.
Her teacher says that Emily is constantly trying to help others with their work. She said that this would be fine, except that Emily is helping others with theirs before she has even finished her own.
The other day she brought home about seven pages that she had not finished at school and had to bring home and do. Apparently, her teacher told her that she would lose recess on the following day if she did not finish them. She does give them a little time each day to "catch up" with things that they may still need to work on but Emily (on her own) decided that she would bring them home, thinking that the little amount of time that her teacher provides at school may not be enough.
Her teacher made it very clear that she believes that Emily has "what it takes" to finish her work, get organized etc. I agree completely. Emily is so smart. She has the "brains" of a child much older than she is, which from a mother's perspective has it's good and bad points. Seriously, some of the observations she makes, the things she says...she just amazes me.
It also gives her a sort of "advantage". In a nutshell, you can't put anything by her. She notices everything, doesn't forget anything, and will hold you to whatever you say. Some of these issues that came up during her parent-teacher conference have come up every year...mainly the "social" aspects (not raising her hand, irrelevant discussions etc.). Math has always been just a slight concern; reading has always been a high point.
Everything else though, is new this year, at least as far as I remember. Naturally, I wonder if it's the medicine or just the seizure disorder itself that could be causing some of these new issues.
Earlier this week, I sent a note in to her teacher asking her to compare notes with Emily's first grade teacher to see if she had the same impressions of Emily. If they agree, maybe Emily needs a little "extra help" to stay on track (motivational type things I am thinking, maybe a few gentle reminders). If they don't agree, and these concerns are in fact "new", I will follow up with her neurologist in a couple of weeks at her next appointment.
Overall, I am under the impression that the teacher thinks she can do this if she concentrates just a little harder, and pays just a little more attention to detail. I agree, she is more than capable.
I am anxious to hear back from her regarding the note. I sent it in on Wednesday so hopefully I should hear soon. It might take a day or two for the teachers to coordinate a meeting etc.
I hope that everything works out, whatever the results. There is something "different" about Emily since this whole seizure thing came to light. It isn't anything that I can put my finger on though. She's just different.
I spoke with the neurologist today about Emily's seizure yesterday. He explained to me that because she has stopped taking Depakote and is not at the full dosage for her weight on the Lamictal, that she is at an increased risk for having seizures. She is on 75 mg now and needs to be at 100mg for her to be considered to have "full coverage."
Unfortunately, the dosage can only be increased at two-week intervals so she won't be at 100mg for another 2 weeks (she just started the 75mg dose on Sunday). At that point, if she still has seizures, we will know that Lamictal is not working for her and change her medicine again if needed. I am not really quite sure when the shock of this whole thing is going to wear off...or if it ever will. Will this ever be just "a problem we deal with" not accompanied by the pounding headache and tears that seem to fill my eyes every time a new situation with her arises?
Seriously, between her and Julia I think that I have had my fair share of medical concerns, no?
She hasn't had once since June 30(the third of the three she had originally).
She was doing so well...it kind of takes the wind out of your sails if you know what I mean.
I didn't actually witness this one though...which in a way was good...just in the sense that I didn't have to "see that again."
I heard her on the monitor...for a second it sounded like she was singing...humming sort of. I thought to myself, in my half awake state "Could she be having a seizure?" I started to get out of bed to go check (after removing Julia for my arm which took a minute because she was so snuggled in) and Katherine came down. I asked her what Emily was doing and she said, "She's making noise while she is sleeping, and she's shaking." I went up to check...she had stopped by then but just by looking at her I could tell she had just gotten over one. Her pupils were dilated and her lips had that same weird "puffy" look to them...with a scary bluish tinge to her skin and lips to boot. She came around almost immediately upon my calling her name. I asked her if she remembered anything and she said no. I haven't posted much here about her medicine schedule but it just changed yesterday from a smaller dose to a larger dose. Since the medicine is supposed to stop seizures and not cause them, I highly doubt that the change is at all related but it still seems like it could be significant. I called her neuro today and left a message to see what he thinks should be done if anything. I probably won't here from him until tomorrow though because of the holiday.
Emily had an appointment at Children's on Wednesday. The appointment went well, and the doctor seems to think she is doing well so that is good.
I am soooooo happy to report that she will no longer be taking Depakote due to the mood swing/personality issues it was causing. Her Lamictal will be gradually increased over the next month or so and we will be going back up for another appointment in the middle of November.
The doctor's over at the brain malformations clinic that she will be taking part in are reviewing her MRI and will be calling soon to schedule an appointment to meet with her. It is still beyond my comprehension how someone so "normal", someone who is for all intents and purposes wise beyond her years, someone who has no problems other than seizures has a "brain malformation". It all seems so surreal sometimes, like a dream (or more accurately, a nightmare).
I think Emily gets nervous about going sometimes. She gets so hyper and just can't sit still in the car and at the hospital. I think that it is her way of expressing her nervousness which is fine.
I forget sometimes that she is only 7. Hospital trips, medicine daily, and everything that goes along with this medical concern...it overwhelms me at times so I can only imagine the effect it might have on her. If mild hyperactivity is her way of "letting it out" than I can handle that!
08/19/04 so, we had Emily's follow-up at Children's Hospital yesterday. I discussed with the doctor the various concerns I had (her mood/personality change, wetting the bed etc.) and he decided that a medicine change would be best. He feels that her wetting at night could in fact be seizures, especially since the bed-wetting was never a problem before.
She will be starting her new medicine tomorrow. It is called "Lamictal" and as well as treating seizures, it has been documented to have a positive effect on the mood.
I am a little nervous about the change for the following reason: The only side effect (or only major one) is a rash, which can in fact be life threatening to someone under the age of 16, as well as someone who is on valporic acid (which is the technical name for her current medication, Depakote).
Because of this, and because she can not just stop the Depakote cold turkey, the new medicine is being introduced gradually, starting at 5 mg for the first week, and increasing to 25 mg over the course of 5 weeks. During this time she will continue with the Depakote and, provided that there are no problems after the 5-week trial run, the Depakote dosage will be reduced and eventually stopped altogether.
I also discussed with him information that recently came to light when discussing Emily's condition with Ryun. He remembered a time when he was younger (about 5 or 6 years old) in which he was having such severe behavior problems that his parents took him to the doctor. It was decided by some means that one part of his brain had not developed as quickly or as fully as the other. He doesn't remember exactly how this diagnosis was reached (what testing they did to determine this) and unfortunately, his pediatrician has absolutely no record of Ryun ever being a patient there. Great.
Anyway, Emily's neurologist told us that a new clinic is being formed between Children's and Beth Israel that will be studying exactly the condition that Emily has. He also said that given how otherwise healthy Emily was given the fact that most people with Emily's condition usually have severe disabilities, the doctors involved in the study would probably take a special interest in her. He also recommended that Ryun accompany us to her first appointment with doctors in charge of the new clinic so that they can determine whether or not it may be beneficial for Ryun to have an MRI as well. This could of course establish a genetic connection and possibly shed a little light on Emily's "vague" diagnosis.
So, that is where we stand at this point. We have an appointment set up for the end of September to see how the medicine is working and to determine if this is the right course to take. I should be hearing from the clinic soon to schedule and appointment to meet with them as well.
On two separate occasions, Emily has come down in the middle of the night saying that she has wet her pants and needs to change. Once was this morning about 4:30 or so and the other time was a few days ago, I can't remember exactly when.
Emily never wets the bed...not even when she was being potty trained at night. The first time it happened the other day I thought to myself that it was kind of odd...but I left it at that. Now it has happened again.
While I was helping her change, I asked her some questions to see if she maybe had a bladder infection...and from her answers, I am pretty sure that is not the case. She says that she wakes up wet, not that she wakes up to go and doesn't make it in time to the bathroom. Is it possible that she could have a seizure at night and I wouldn't hear her? I think so. To be honest, the two major ones that she had, had she been in her own room, I am not entirely sure whether or not I would have heard her if she had not made the gurgling noise. So, if she has been having seizures at night, with no gurgling (or any other) noise, I think it is quite possible that I may not hear. Even the violent shaking doesn't make a heck of a lot of noise. I do have the monitor set up and it is sensitive, but I am sure that while I myself am asleep, I don't hear every little turn of her body or swish of the covers.
I am not overly concerned really, but I think it will warrant a phone call to her pediatrician, just to see what he thinks. I am also going to start keeping a paper journal to help keep track of any symptoms I may see or questions I may have. It would seem like a good idea to keep track of everything...for my sake and hers.
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07/14/04
07/14/04 AHHHHHHHHHHHHH! Yes that is me yelling...AGAIN.
"Abnormal signals in the white matter of the brain"="neuron migration disorder."
Umm yeah, they are the exact same thing.
Ughhh.
This of course makes me happy in one sense (at least we know exactly what it is now) but I just wish that it didn't take this long to get a definitive answer.
Her doctor is going to be showing the films to as he put it "others whose opinions he trusts" because although he is pretty sure that what he sees is the case, the radiologist who originally read the slides was "not sure."
If anything new develops as a result of other opinions, he will let me know. I trust her neurologist though and so far, everything he has said has been true. Chances are he is right about the neuron migration.
He said that as far as genetics are concerned, that is an area that is still being researched...could be, but might not be to. That is kind of frustrating but what can you do? Hopefully, research will find the answer to that question soon. Her blood work is fine...and the next time she has to have it done (in about one month or so) she will have her liver functions tested along with her medicine levels as one of the more serious side effects of the Depakote is liver damage.
07/14/04 Below is a copy of the email sent today to Emily's actual neurologist. I am writing in regard to my daughter, Emily. I spoke with Dr. Rotenberg yesterday about the results of Emily's MRI which took place on Wednesday, July 7, 2004. He informed me that an "abnormal signal in the white matter of her brain" was found. He said that it was not something that could really be explained(as far as what exactly the abnormal signal was or what it meant) but that she would need to have another MRI in 6 months to see if anything had changed or if a more definitive answer could be given. Of course, after I hung up with him, I thought of a few questions and am hoping you may be able to help me out. When we met originally after the MRI, you had mentioned that your initial thoughts were that she had something called a "Neuron Migration Disorder." I was wondering if this was still the case and if the abnormal signal in the white matter was in addition to that? How often do you see this type of result on an MRI? Is this a common result? Does this "abnormal signal" have an official name? I was also curious as to whether or not it could be determined if her seizures have been caused by this new diagnosis or if her they were an unrelated concern. Does this new diagnosis change anything in any way? Is her trip to Disney still ok? Can she still participate in the various rides and attractions, so long as she is tall enough and feeling physically up to it? Is her medication(Depakote ER, 500 mg once a day) still the appropriate type for her condition? I would appreciate any help/answers you may have. You know how it is...you talk to the doctor and immediately after hanging up, all of those other questions come to mind. Anyway, I hope to hear back from him soon and I will post here with the results.
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07/14/04
AHHHHHHHHHHHH!!!!!!! Yes, that was me yelling. So, I finally spoke with a neurologist yesterday about Emily(not even her neurologist, just one in the same department) and got the "final" results of her MRI. As it turns out, she does not have a neuron migration disorder, which is of course nice to hear. The only bad thing? She has something that they cannot describe and have no idea what it is. Great. In a nutshell, she has and I quote, "an abnormal signal in the white matter of her brain." What is the white matter? Here is a quick definition from www.medterms.com. "White matter: The part of the brain that contains myelinated nerve fibers. The white matter is white because it is the color of myelin, the insulation covering the nerve fibers. The white matter is as opposed to the gray matter (the cortex of the brain which contains nerve cell bodies). " They do not have an official name for whatever it is she has, nor do they know whether or not it could be genetic, if she could develop any other conditions as a result, if her seizures were as a result of this abnormality, or if she could outgrow the seizures. I honestly think I liked the other diagnosis better. At least it was more definitive and from my reading about neuron migration, I was able to determine how lucky she was to only have seizures as compared to the many other more serious problems she could have had as a result. I had even discovered that it could be genetic and while this was not comforting in anyway, at least I knew something. As it stands now, we know nothing...nothing expect that there is something abnormal. That just isn't good enough for me, not that I have any choice. She will have to have another MRI in 6 months...maybe then we can get some answers.
So...I still have not heard back from the neurologist regarding the final results of Emily's MRI. I am kind of getting a little frustrated...mainly because I have a few questions that I want/need answered. 1. If in fact the MRI results are confirmed and she does have a neuron migration disorder, is it something that can be genetic(this had no effect on Emily until she was 7 so what does that mean about Katherine and Julia?)? 2. Could this affect her in any other adverse ways in the future? Is there still a chance that she could outgrow the seizures? 3. Are her blood levels ok? Is it fine to be in the normal to high range? I am assuming if the radiologist had found anything out more serious or whatever then the neuron migration disorder, we would have heard right away, at least that is what I am hoping. I called yesterday but never heard back(he didn't come in until 3:00pm though so I figure maybe by the time he was done, it may have been too late to call). This morning when I called, his secretary gave me his pager number so I can contact him directly. If I don't hear from him by noon, I will just do that.
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07/08/04
Emily did a fabulous job during her MRI. I couldn't go in due to the fact that I am pregnant but my mother went in with her and said she was perfect. She even fell asleep for the first half. They had to wake her to give her a shot in the arm (a dye for contrast) but she went right back in and stayed still. We waited in the neurology department for a preliminary reading, which we got about an hour or so after she was done. Thankfully, there was nothing major wrong(tumor, blood clot etc.) however, the reading was abnormal. This is a little hard to explain(the neurologist drew a picture) so bear with me. Before a person is born, usually during the second trimester of pregnancy, the neurons begin their migration from the water filled cavities where they originate, to their final spot somewhere in the cortex of the brain. The cortex is the part of the brain that processes...everything. Learning, memory, perception etc. A normal MRI shows that these neurons have migrated completely. An abnormal one, such is the case with Emily's shows that some of the neurons did not make the journey and are just floating around in limbo. In some cases this can cause severe impairments, such as mental retardation, poor muscle tone, and failure to thrive and grow. In Emily's case(thank God) the only apparent result is her seizure disorder. Although we are obviously grateful that this is the only problem, it most likely means that she will not "outgrow" this and will have to live with it throughout her life. That in itself brings on a whole new set of concerns for the future(driving, having children etc) but is something we are choosing not to think about this early on. The MRI reading was only preliminary and we will be getting the final results within the next few days. I am having a hard time digesting the fact that there is something actually wrong with my child's brain. Maybe different is a better word. It just seems so impossible. She is so advanced in so many ways that it makes me wonder, if the neurons had actually made their way over to where they belong, would she have been a genius? This may seem like a strange question to ponder but she is for all intents and purposes wise beyond her years, despite the disorder. Obviously, given all of the problems that could result from this disorder, we are so lucky that seizures are the only problem she has.
It seems like I have nothing else to talk about lately aside from Emily, but it is her that has been overloading my thought pattern lately, so it seems appropriate that I write about her.
She has been doing fine in regard to having no seizures...which is obviously a good thing. Otherwise though, she just seems "different". I can't quite put my finger on it really. She seems to be a bit moodier than normal...and definitely whinier(is that even a word?). She has been complaining of an "icky" feeling in her stomach...saying it's not quite like hunger pains but not nausea or gas either.
We have had a busy weekend with a couple of late nights and although she has been sleeping late in the morning(til about 9:00 or so) as a result, she still seems mopey and tired during the day. It's hard to tell though if it is as a result of her medicine or just because it has been such a crazy weekend. We do have a few things that we have to do over the next couple of days but nothing that will keep her up late (doctors appointments and such) so I am going to see how she does. If she still seems "different" after a somewhat normal couple of days then I will have to call her neuro and see what he thinks.
Unfortunately, the seizure turned out not to be a "freak one-time thing." She has officially been diagnosed as having a seizure disorder(epilepsy) by a neurologist at Children's Hospital in Boston.
It has been a very emotional and trying few days so please forgive me if I ramble a bit.
On Tuesday morning, she again awoke in the throws of another seizure. This one was about the same as the last one...the only difference being that she came back out of it a little quicker. Last time it took her a good half of an hour to come back, this time she was back within a minute. The ambulance came, took us back to Morton and conferred with her pediatrician. The decision was made for her to be transferred to Children's Hospital in Boston for further evaluation. We went by ambulance, with my mother following. Because she was ok, I told Ryun not to meet us and just to hang in Boston (where he was working) and that I would call him when we had information.
We got to Children's where they performed a full battery of neurological and strength testing, all of which she passed with flying colors, and, typical Emily style, a little humor.
After a bit of a wait, a neuro consult came down, reviewed the information, and upon discussing this with his attending, decided that she could come home and scheduled an EEG for Friday. At this point, they still felt that the seizures could be related to the pneumonia and ear infection. He did however say, that if it happened again, we should call him and most likely, go right back in.
The next morning, it happened again. I called, we came back and he decided that she should spend the night and be hooked up to the EEG.
She was such a good girl. For an active little girl to basically spend three days in a hospital bed without complaint in my opinion shows what a trooper she really is...never mind all of the blood work and tests they had to perform.
At about 6:30 or so that night, they connected the electrodes to her head and as soon as she was admitted to her own room, they connected the machine. She had a bit of trouble getting to sleep(imagine having wires all over your head and chest...they were monitoring her heart rate as well) but she finally fell asleep about 9:00 or so.
My mother and I basically did not sleep at all...between being nervous and uncomfortable, it was next to impossible.
She woke a few times during the night when the nurses came in to check on her, but other than that it was an uneventful night, which was good. At about 11:00 in the morning, the EEG tech came in and disconnected the machine...leaving the leads on her though in case they needed to do get any more readings.
It took about 3 hours or so, but the neurologist finally came back and said that she did in fact have a seizure disorder, affecting mostly the right side or her brain but that he saw various other places as well.
Despite the diagnosis, I did feel some relief in the knowledge that we did have a reason for the past few days. She has been prescribed Depakote, which the doctor felt was the most appropriate medicine to treat her particular type of condition. He also prescribed her an valium that is injected if she were to have a seizure that lasted for longer than five minutes or had one right on top of the other.
She has to have her blood drawn in one week to test her levels, and had an MRI scheduled for July 7, just to make sure that there is no "other" cause for her seizures. Right now, the neurologist seems to think that she is one of the many people who just has this disorder, with no identifiable reason.
After these initial few months(and once we are sure that her medicine works etc.) she will have to have her blood drawn every 6 months to make sure that her levels are ok and that the medicine is still the right one for her condition.
I have been reading as much as I can about this and am trying to keep informed about all the different aspects...how it will affect her everyday life etc.
It's all a bit overwhelming but both Ryun and I feel we need/want to do as much as we can to help her lead as normal a life as possible. Most people with a seizure disorder have no problem doing anything really so it is our hope that she will be the same.
I don't really know where to start with this entry. I guess from the "beginning" would be the most appropriate huh?
On Sunday afternoon/evening, Ryun cleared Emily's room and painted it to match their new furniture/bedding sets that we will be setting up soon. Because the paint was still wet (and the fumes still strong) we set Emily's bed up in Katherine's room for her to sleep in there. They were so excited to have a "slumber party"...it was so cute.
Anyway, twice during the night Emily came down to our room...once to go to the bathroom (there is one in the hallway upstairs I think she just wanted to come down and say hi) and once just because. When she asked if she could stay down with us, the first time I said, "No, go ahead back upstairs...Katherine might be sad if she wakes up and doesn't see you there for your slumber party." She was fine with that and went back up. A few hours later (around 5:00 am or so) she came back and asked if she could stay again. I said the same thing about Katherine being sad but at the end I said, "It's your choice though...you can stay if you want to." Thank God she did.
Just a quick side note before I continue...Every night, one or sometimes both of them end up down stairs with us. I don't really mind all that much but I do try to convince them to stay in their own rooms...just because it seems like "the right thing to do."
I will never, ever, ever, ever again complain or make any comments about where they decide to spend the night (our room of theirs I mean). When Emily came down the last time, Ryun was just getting up to leave for work. She jumped in to his spot in bed and started asking me all kinds of questions...What time is it? How many minutes until we get up? Do I start swimming lessons today? I answered her and finally said, "Ok Em, it is time to go to sleep."
At about 8:00(Katherine had come down about 1/2 hour earlier when she woke up) she and I were lying down in bed talking quietly when Emily made this noise that kind of sounded like she was clearing her throat, but sort of sounded like she was gurgling water too...hard to explain really. Katherine asked me what that noise was and I said, "that was just Em." Seconds later, my bed started to shake. I immediately jumped out of bed and went to Emily was shaking rather violently and, for all intents and purposes, unconscious. Her eyes were open but mostly rolling back in to her head and she was drooling. I rolled her onto her side thinking she might be going to vomit. I called her name (yelled it actually) a couple of times with no response and immediately called 911. I kept trying to call Emily and when the shaking finally subsided (seemed like forever but it really only lasted for maybe 1 to 2 minutes) she was just staring in to nothing. Her eyes were on me but it was like she was looking right through me. I kept calling her, saying her name asking who I was, and at the same time running around my bedroom getting myself and Katherine dressed, calling my mother to come take Katherine for me, and calling Ryun to tell him what was going on and to meet us at the hospital. At one point, just before the ambulance arrived, I managed to get her to mumble "mama" but it was almost indiscernible and if I hadn't been asking her to say it, I wouldn't have even known what she was trying to convey.
The medic came in and by this time, she was starting to come back around a little, but still not quite back to reality. He gave her a quick once over in the bedroom (checking her pupils which were completely blown, having her stick her tongue out and checking to see if she wet herself, which she had not). The EMT came in with a stretcher and took her outside. When we got outside, the police officer that came with them asked me a few questions (her name date of birth etc) and when I turned back around to the stretcher, Emily was fully awake and crying. I don't think I have ever seen her so scared in my life...and I can't explain in words how that made me feel. I of course went right over to her and told her she was okay and that we were going to go (together) in the ambulance to the doctor. My neighbor took Katherine for me until my mother arrived (about five minutes later or so). While in the ambulance, before we left, the medic started an iv (just in case she had another episode on the way...with the iv in place they could medicate her immediately). She was still pretty upset but I kept rubbing her head and telling her she was ok and that "Mama was right here and not going to go anywhere."
She started to calm down about 5 minutes into the ride and was definitely coming back to reality. After she was settled and the IV was all set, the medic asked me a few questions (name, birthday, insurance etc) and she was trying to answer every question. I knew for sure when she started talking she was back to being my Emily.
And I was never, ever so thankful to God in my entire life. When we got to the ER, they drew blood, took x-rays, gave her a CT, and a quick once over to see if she had any obvious signs of illness (rash, bug bite etc). When checking her ears, the doctor was beyond shocked that she had not been complaining of ear pain. In a nutshell, her ear had just about the worst infection the doctor had ever seen. She had a slight fever. The blood work and CT came back fine but her chest X-ray showed a small case of pneumonia. She had been coughing for a few days with no other cold symptoms at all...not even a runny nose so the pneumonia diagnosis was rather shocking as well. Because they still could not identify any real cause for her having a seizure (which is what her shaking/drooling/unconsciousness turned out to be) they wanted to consult with her pediatrician. He wasn't on, so they talked to another pediatrician in the practice, who recommended that she go home, be seen in the office tomorrow (which is now today) and at that time be scheduled for an outpatient EEG.
Before they had consulted with him, they started her on an IV with a medicine called "rocephin" to help clear up the ear infection/pneumonia). About ten minutes after they started it, Emily started to complain that she was itchy. I lifted her shirt and the poor kid had hives all over her back and chest. She was allergic to the medication. The doctor/nurse came in and gave her benedryl and a steroid to stop the reaction and it worked almost immediately. The hives were gone with in minutes. We of course had to stay around for a while to make sure she was all right and they sent us home with a prescription for a steroid and told us to give her benedryl every four hours.
We blew up the air mattress and set her up in our room to sleep. It is now almost four o'clock in the morning and I can't sleep, despite being exhausted after our long day at the hospital. I crashed on the mattress with her and have been waking up every time she moves at all...even just the slightest movement. I hope that her EEG comes back normal and that the seizure was just a "freak, one-time thing" for her sake of course, and I have to say for mine as well.
I can't explain the fear that was running through my veins when I watched her go through that. She had no idea who I was. She was not responding to me at all. She was shaking so violently that my entire bed was moving. If I never, ever have to witness that again, I can honestly say I will die a happy woman.
