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8/1/02: MacKenzie's case has been presented and we have the "verdict"! See her new journal, a BLOG by clicking on the
MacKenzie's Journal 2 link :-)
7/25/02: MacKenzie's case is scheduled to be presented to Epilepsy
Surgery Conference on Monday, July 29th!! Everyone keep their fingers crossed that we get some good news... at least that
there is something that can be done to help her out :)
In the mean time, she is still seeing colors, funny trailing lights, sometimes double vision, and
sometimes things that are upside down. I mentioned this at her appointment with the local neurologist on Monday the 16th,
and he said that we should have her checked out by an eye doctor. SOOOO... she is scheduled to see an opthalmologist on 8/23.
Mac's gums also are looking pretty yucky above her front teeth... they look almost as if she has brushed too hard. SOOOO...
she is scheduled to see the dentist on 8/23! Yes... it will be a busy day :)
7/1/02: MacKenzie had her neuropsych evaluation FINALLY on 6/26/02 down at Children's Hospital. This is after the
neuropsychologist that was supposed to do her testing cancelled on us twice. Needing to have this testing phase completed
before Dr. C represents her case to conference, it was of utmost urgency. Thankfully, the great Dr. Rothermel at Children's
got us in quickly (less than one week!). He is awesome!
Preliminary testing results: tell us that MacKenzie is way above average in some things (he didn't elaborate,
but I will explain as soon as I get his letter), said that she has great persistence and was able to complete some tests even
though they were beyond the time limit. MacKenzie is "way way below average in some other things". He did tell
me what things she is below average in:
1. Memory retention and retrival.
2. Language retention and retrival (completely explains why she stutters sometimes).
Dr. Rothermel also said that it may be entirely likely that she is incapable of learning how to read at this time. He
also said that the below average items, listed above, are directly related to her seizures. I will push
the school system for an IEP and whatever else is needed for MacKenzie to achieve a positive 2nd grade experience. I truly
feel that I let her down this year. Can't blame it entirely on the school or the teacher... but
I would love to blame it on the principal. She needs to not be in that position (my personal opinion).
On a side note... MacKenzie continues to have her nightly myoclonic seizures. She is up to the full dose of Lamictal
that Dr. C wanted her to be at with no significant changes. Not sure what will happen with that. Mac is also having what we
think are auras. She sees colors, which vary, and shortly after will have a stomache ache and possibly an outburst of bad
behavior. She has also recently described some unusual visual things... thinking that they too are seizures. She had one in
the car after her neuropsych test that had the color aura, stomache ache, and a post-ictal sleep (I know that because Sarah
and Jadyn were playing VERY loudly in the car, dropping things upon her, and she didn't flinch at all... it was very difficult
to wake her upon arriving home). Not sure what these changes mean.
MacKenzie got to meet her soon-to-be Uncle Dennis two weeks ago on a trip down to Tennessee! Aunt Sara and Uncle Dennis
were there on a stop-over during their trip to Bonnaroo ( http://www.bonnaroo.com). MacKenzie is entirely infatuated with Dennis and she truly thanks her Aunt Sara for deciding to marry him. MacKenzie
will be the lead flower girl in their upcoming wedding in May 2003. We are more than thrilled for Sara and super glad to have
Dennis as part of our family!
Check out Sara and Dennis' blog of their upcoming wedding... it is quite humerous and yet so true! See below link:
Going Bridal~ Aunt Sara style
6/10/02: Okay, so I'm a bad Mommy! No updates since late Jan?! Yikes! Sorry to everyone!!
These past few months have been busy and tense.
Feb 21st Mac had her Glucose metabolism PET scan and we waited for EVER to get the results! Finally on March 18th, Dr.
Chugani was able to present MacKenzie's case to Epilepsy Surgery Conference. Below is what the letter to us stated:
Mackenzie was discussed in our Epilepsy Surgery Conference on March 18, 2002. She is a 7 year old girl with intractable
myoclonic epilepsy. She also has a history of tonic-clonic seizures. MRI scan in Lansing showed a small area of encephalomalacia
adjacent to the trigone of the left lateral ventricle, and this has been stable. Glucose metabolism PET scan showed mild hypometabolism
in the left temporal neocortex and medial structures. Video-EEG monitoring caputured 92 myoclonic jerks, all during sleep.
Interictal EEG showed left background to be slightly slower than right, with frequent generalized spike- and polyspike-and-wave
activity during sleep. Ictal events were associated with either generalized or preceded by left or right frontal spike-wave
activity, more likely left frontal in origin.
There was considerable discussion, and the consensus was that she may be a candidate for epilepsy surgery, but more
data are required. Recommendations:
1) Repeat MRI here, with MRS, FLAIR, and hippocampal volume measurements.
2) FMZ PET with EEG.
3) AMT PET with EEG.
4) Present again in conference.
Well.. we have done all the above!!
On April 30th, MacKenzie had her 2nd PET scan, the flumazenil scan. This one was quite interesting in that they
did the EEG during the scan itself, not to mention that they withdrew about 50 blood samples at certain timed intervals during
the test itself. Mac did remarkably well and did not need any sedation. Sleep deprivation has been the key for us during these
tests. The hardest part of this scan was the arterial line that was needed for the samples. It took Dr. Chugani 3 tries to
get a good line because as soon as he had the needle in her artery, she tensed up and he couldn't get anything back! Finally,
Theresa, the tech, and Jane, the nurse, tricked her and boom! it was in!
The following Wednesday, we were back in Detroit again on May 8th for the AMT (or seratonin) scan. This one only needed
2 venous lines, and Mac once again was a trooper and held completely still for the entire 1 hour 50 minute scan! She is SO
great!
And again the following week, on Tuesday May 14th, we wrapped up the testing at Children's Hospital for the MRI. She
again made us all proud of her and required no sedation! What a gal!
Now we just wait for the neuropsychology testing that is scheduled for June 14th. It originally was scheduled for June
3rd and 7th, but the gentleman administering the test was called out of the country on a family emergency and we got pushed
back. That's okay!
Now, about school. I had it up to ^here with the school system this year. I honestly cannot tell you how many times I
had to pick MacKenzie up from school in the entire school year because they either couldn't handle her any longer or she was
being suspended!! Scott and I decided that for the last 5 weeks of school, she wasn't going back. We applied for and were
approved very quickly to have MacKenzie home-bound schooled. A teacher came in twice a week for 45 minutes and it was the
best schooling Mac received all year! She has gone back to the classroom for a few things, such as one day she did Art and
Music with her class. Another day she got to go for Recess (which was a mistake because she had 2 altercations with the 2
young men in her class with which she always had problems, not to mention she had a myoclonic seizure on the playground and
ended up with a bloody nose). But, it was a learning experience for us, to say the least!
MacKenzie also continues to have psychotherapy. I don't think that that has really done anything for her this year. She
has kept a wall up so high that it has been impossible for Brenda to 'break through'. We will put a lid on that for the summer
and see what happens. Hey, as far as we know, she may be having surgery. I think at this point, we would welcome anything
that could provide relief for her.
Myoclonic szs continue EVERY night. She has had no generalized tonic-clonics since Jan 20th though! Although today, she
did have a very very short tonic seizure on the couch after we had a fun filled day at the Aquatic Center! Maybe a little
too much sand and surf :)
Be sure to check out the SUMMER STROLL page!!!!!
1/29/02: Okay, the results are in! They caught 91 (!!!) (7/1/02...correction... it was 92 myoclonic
seizures) seizures while she was having her VEEG! Apparently that was enough for Dr. Chugani to conclude that MacKenzie has
either frontal lobe epilepsy or juvenile myoclonic epilepsy. Next is a PET scan, which will better enable him to make a definitive
diagnosis, in that with JME the PET scan will show normal. The PET will show abnormal (I'm not sure how) with frontal lobe
epilepsy.
Of the 2, we would definitely want the JME over frontal lobe E, in that she has the possibility of outgrowing
that. Dr. C says that with frontal lobe E, Dr. C says that it is operable, but it usually takes surgerieS and trials of different
meds to find the right one. She may also not 'outgrow' frontal lobe E.
In regards to the behavior, headaches, and
such that she has been experiencing, he says it could be one or the other diagnosis or even just the med that she is on. Has
also recommended that we wait on the neuropsych. eval until we get the seizures better under control, as he thinks that if
she has a seizure during the eval, it will 'taint' the results!
MacKenzie will remain on Depakote for the time being,
but have changed to the extended release Depakote. As well, we will be adding Lamictal in the hopes that she has JME and the
Lamictal will control it. We are to gradually introduce that to her, knowing that she may have THE rash for upwards of 2-3
months before it all levels out.
I've probably left something out, but I wanted to post ASAP! 
1/22/02: Just received preliminary results of MacKenzie's VMR today. In an email from Dr. Chugani's nurse, Monica, she
states:
"Received results this morning. Seizures are coming from
both sides of the frontal lobes and central regions."
We have an appointment to see the doctor Monday the 28th
at 1 pm to have him explain the results to us as well
as
to see where we go from here. I would imagine though that
just from that statement above that Mac will not be a
candidate
for surgery. Maybe Dr. Chugani will have some other options
for us though. We will just have to wait and
see.
As well, it seems that Mac's generalized convulsive seizures have a cyclical pattern. This is assumed from
the fact that her last 4 GTC seizures have been 15-16 days apart. They also continue to come in the hours right before she
awakens. Otherwise, no daytime seizures for 5 weeks today (!!) but she continues to have the nightly seizure activity right
after she falls asleep. Maybe we will find out what kind of seizures they are on Monday the 28th. Look for updates next week.
 Jan 4th ~ Mac's admit time is 12:45 pm. After 1/2 hour in admitting at Children's Hospital, we are sent to 3rd floor
for Mac to get 'hooked up'! There are other children in the waiting room here at the EEG office, one with a contraption on
his head that we assume is exactly what Mac will be getting too. When she is finally called back, the tech, Howard, is just
wonderful! He treats Mac like a princess and explains everything to her! He even lets her watch a video while the electrodes
are being 'super glued' to her head. Finally by 3:30 pm, Mac's room is ready and the electrodes are all places. She has her
head wrapped in gauze and then a head sock put on top of that. There are colorful wires coming off of the electrodes and places
through the opening of the 'sock' making Mac look like she has a tail coming out of her head! Up to the room we go, 5th floor
VMR rooms. She is placed in a semi-private room, the last one down the hall, room 587. The little boy from the EEG waiting
room is across the hall in 588. I have heard that they are from Indiana. Unfortunately we never get a chance to meet or talk
with them. Mac was held up in the bed or a chair for 72 hours. We had hoped for a shorter time, but since she seized at home
on Thursday morning, a generalized tonic seizure (Dr. Chugani says it was) I knew that we would have a hard time getting a
'big one'. Although, her night-time seizure activity continues, and worsens when her meds are cut by 50% and then withheld
completely on day 3. We thought that she was going to have a grand mal a couple of times, but did not. Just got the shaking
that preceeds it for her. Scott and I took turns rotating keeping an eye on MacKenzie, marking the diary with any activity
and pushing the event button. It was hard mental strain and tedious, but necessary. Mac was fine the first day; remember,
she loves hospitals! Day 2 was when the itching got frustrating for her (we were told that she WOULD itch) and Day 3 was super
hard! She had cabin fever so badly, and all the other VMR kids were going home. But she couldn't. They had withheld all of
her meds and we were all frightened that she would have a very violent generalized convulsive seizure, therefore Diastat was
ordered and kept at the nurses station. MacKenzie cried herself to sleep on night 3; the Benedryl took well over 1-1/2 hours
to get to her and the itching was unbearable. I almost took the electrodes and such off myself. Finally, Monday morning, day
4, Dr. Chugani comes in and says we can go home! I am thrilled, but MacKenzie is more so! He states that he thinks we have
enough night-time activity to look at and see if there is a focal point of seizure activity. We won't know for 2 weeks.
| 01/05/02: Mac during VEEG |
|
| A visit from Carleton the greyhound! |
BTW: we stayed at the Ronald McDonald House in Detroit. It was wonderful, along with all the folk there. I highly recommend
it to anyone who needs it!
mid-Dec 2001 ~ Mac is scheduled for her VEEG! It is on Jan.4th, a Friday. MacKenzie is excited about the hospital stay;
for some reason she likes hospitals, which is good. BTW: we have NOT told MacKenzie that she may one day be a surgery candidate
one day. We have decided that she will be told when we need to make the decision on whether to do it. She is scared at the
sight of her own blood and we do not want to cause any unnecessary mental anguish and trauma.
December 10th, 2001 ~ Our trip to see Dr. Harry Chugani!
After a detailed (45-minute) history was taken by Dr.Watson, Dr. Chugani and his staff made their long awaited appearance!
We were immediately impressed. MacKenzie apparently shows some left sided weakness that apparently was documented in some
of her early tests done by her 1st neurologist. We were never told of this note. Also, they think that maybe she has a cortical
dysplasia. Dr. Chugani said that the daytime seizures she has been having are not myoclonic seizures he believes, but atonic
(drop attacks). He also said that her noctural seizures most likely come from the frontal lobe. He wants to do a 3-day video
EEG, a PET scan and some other testing including metabolic tests to see if she may be a surgery candidate. This shocked us,
but also thrilled us at the same time.
We were given some pretty staggering statistics: 2.5 million people have epilepsy. 70% of those get good results with
their first anti-epileptic drug. Of those remaining, 90% get good results with their second AED. Of the remaining 10%, most
never achieve good results with AED's and only half of them will be surgery candidates! We will just have to wait and see
which 'half' MacKenzie fits into.
Mac will be scheduled as soon as possible for a 3 day admit to Children's Hospital in Detroit for her VEEG. Dr. Chugani
said we may not need to stay all 3 days if she continues in the seizure pattern she has right now. We kind of hope she does,
but at the same time want the seizures to go away! What a double edged sword this is!
late Oct./Nov. 2000 ~ These proved to be difficult times. MacKenzie continued to have behavior problems. It was even
suggested at school that she be removed from a traditional classroom and put in an alternative learning classroom; one for
discipline problems. After much fighting and trying to find another solution, Mac began to see a psychologist. We also finally
convinced the neurologist to remove the Keppra, as we were/are sure that it was part of the behavior problem. When your 6-year-old
child is threatening other children with pencils, even attempting to stab one child, there is a HUGE problem.
The beginning of Nov. came with a generalized seizure. It was one of the strangest that Scott and I have seen to date.
I KNEW that there was going to be something big happening as she went to sleep that night, and sure enough, within an hour
of all of her night-time partial seizures, she had a big one. But this time, only her face seized; EVERY muscle in her face
seized, but the rest of her body was limp. It was as if she were possessed. I completely understand why now they thought that
people with epilepsy were witches or possessed by the devil in the old days, completely understand it. She wet her bed and
when we got her up to change her and the sheets, she started another seizure, a partial seizure and then went post-ictal.
She attempted to rearrange the clothes in her drawers 5 times, tried to climb up her bed, and tried to take it apart as well.
Then she gave us the biggest Cheshire cat grin and was back asleep. Weird!
November brought us a total of 4 grand mal seizures.
Late November (29th): The Keppra is completely gone out of MacKenzie's system. It took 4 weeks to wean her off of that.
The behavior is somewhat better and the school is working with us (finally) to keep Mac in her classroom. They have brought
the school social worker, psychologist, and multiple counselors on board for her. They have a plan in affect to keep her in
class, learning; but if she causes problems, she will be removed and sent to the student counselors office until she can get
herself under control. They also appear to understand finally that we do not know if this is the seizures, the medicine, or
just MacKenzie.
November 27th ~ another appointment with the neuro, this time for the increased seizures during the day. MacKenzie is
having between 2-8 drop attacks each day now, most of which are around lunch time. We are also frustrated with the increase
of generalized seizures. Realizing that this could be partly from the weaning off Keppra, we waited until now to try something
new. Both Scott and I are hesitant to try a new med, but the neuro wants to add Zonegran with her Depakote to see if it will
help knock out the night time seizures as well as the daytime increased activity.
Nov. 29th ~ Started Zonegran. As the bottle read, she is to be given 1/2 a dose in the a.m. for 2 weeks, then a full
dose in the p.m. after that.
Within 24 hours, we noticed a huge change in MacKenzie. She is having more seizures, is wetting herself when she seizes,
and is having an immediate absence seizure after an atonic seizure now! Within 5 days, she had a mental change, was slurring
her words, was on an emotional rollercoaster, and we decided to take her off of it! I called the neurologists office, who
didn't call me back for 24 hours, but we stopped the dose even before he called back. It was a hard, difficult month.
November also brought us some good news! MacKenzie has an appointment with Dr. Harry Chugani, MD at Children's Hospital
in Detroit. Thanks to our wonderful pediatrician and her staff, we were able to get her in Dec. 10th. We are all anxious to
see him.
Oct 2001: We have started receiving a daily behavior note from Macs teacher.
Out of 2 weeks, she has only had one "good" day. And the consistency of getting in trouble continues in the afternoon. Spoke
with the neurologist again, and he increased her Keppra medication in the morning with hopes of curtailing the noon hour seizures
and the behavior.
Sept cont: I have found that MacKenzie has gotten herself into a space that
regardless of the positive reinforcement or the consequence, she will be bad "because I want to" in her own words. At this
point, I believe that it would not matter what would happen to her, if she felt that impulse, she would do it regardless.
On a good note, MacKenzie is taking cheerleading classes and REALLY likes them!
September 2001: Well, school has started and the first 2 weeks were okay.
Actually, first week was great, second week was okay. Macs teacher is great! A veteran, and male, thank goodness. Third week
of school and bad behavior began. Teacher says that MacKenzie just will not follow the rules, wont stay in her seat, and is
not able to control her impulsivity when angry. She has hit a follow student, thrown items at both the teacher and students,
screamed, thrown herself on the floor and flat out refused to do her work. The school counselor is now seeing MacKenzie when
she has a problem in the classroom, which worked for only the first couple of times she was removed from the classroom. Personally,
I think that it has become a way to get out of class. She knows it will happen. Had a conference after school with both the
teacher and the school counselor and tried to give them suggestions for things to do when Mac gets out of control. She is
such a loving child, but ONLY when she wants to be. At this point in time, she is more often bad than good and it wrenches
my heart. MacKenzie is now having partial seizures again, this time at school. She sometimes knows when she is having or has
had a seizure and is able to tell the teacher. Mr. C (I will call him) is recording seizure times for us, and they appear
to be right before noon, consistently. And most often, the behavior problems are in the afternoon around 1-1:30 pm.
August 2001: Neurologist added Keppra as a medication for MacKenzies seizures
to help with the breakthrough seizures and also to hopefully help with the bad behavior. MacKenzie is throwing temper tantrums,
throwing herself on the floor, screaming ugly words, calling names, and has no ability what so ever to obey or follow rules
set forth. We are hoping that when school starts, she will no longer be bored and the behavior will straighten itself out.
Spoke with the neurologist about the behavior again, and he just says uh huh. MacKenzies pediatrician recommends we wait to
see if the meds will straighten out, if not to seek outside help through Community Mental Health.
July 2001: While on vacation in Tennessee and then Georgia for a family reunion,
MacKenzie had 2 more grand mal seizures. Both were in the pre-dawn hours and both times Sarah came and got us letting us know
"shes doing it again". Behavior was good for the first 3 weeks of summer vacation but has started getting bad again.
07/18/01: Grand mal seizure this morning at 6:45. MacKenzie had crawled into bed with Mom and Scott complaining of a nightmare
about an hour before. Suddenly MacKenzie was off the bed, hitting her head extremely hard on the hardwood floor and fell into
a tonic-clonic seizure. Seizure was violent lasting less then 1 minute. Took Mac almost 30 minutes to regain consciousness.
Slept more then 4 hours in her postictal phase.
Just a note: MacKenzie is completely off of the Tegretol and was
doing well on the Depakote alone. Had seen significant behavioral changes for the better. Had also gone 13 days without a
spell (absence seizure).
Next scheduled doctor appointment is in August.
05/01/01: Well, much has happened in the past month and a half. No grand mal seizures, but TONS of absence and partial seizures.
We kept increasing the Tegretol and it seemed that each time the medication was adjusted up, she would have more and more
seizures. The seizures also became "weird", meaning different to us than what we had been experiencing. At times
after MacKenzie would have a seizure, she would just blank out and not respond to someone talking to her. When she would finally
"come to" she would totally wig out and once she attempted to open the car door while we were driving down the road!
It freaked us all out! MacKenzie is now taking Depakene which is supposed to help with the smaller seizures she is having.
We had had a little trouble with nausea and vomiting but that seems to be working itself out. As of today, we are taking away
the Tegretol one pill at a time with the possibility and plenty of play room left to increase the Depakene if needed. MacKenzie
seems to be doing a little better with her behavior, but it is still not "normal". We have consulted the pediatrician
who recommended that we wait until we have the new medication straightened out and then she will probably give us a referral
to a child psych. Honestly, the stigma associated with consulting a psychologist does not worry or bother me at all as long
as it will help MacKenzie! After having some really rough weeks at school before Spring break the first week of April, she
has had much better weeks since then on this new medication. Keep praying for us; we will need it! :)
03/21/01: So far so good.... only a couple of small partial seizures in the past 2 weeks. Seems to happen when Mac gets herself
upset or is tired. Medication adjustment may be working fairly well at this time! MacKenzie turns 6-years-old on Friday!!
She has also lost her first tooth about 3 weeks ago.. and yes! the tooth fairy did visit!
03/01: MacKenzie is continuing to have problems in school and at home with behavior. The medication does not seem to
be the problem. It does occasionally make her extremely sleepy, especially when she takes her larger dose at night (which
can be a good thing).
02/16/01: Visited the neurologist and he suggested that we stick with the medication but up the dose to 700 mg if she
has any more partial seizures. Saw the EEG itself and WOW! Lots of seizure activity when she was hyperventilated and asleep
(pages and pages of HUGE alpha waves).
02/13/01: MacKenzie had 5(!!) partial seizures in a two hour period today and Beth witness all of them. After the last
two, which were consecutive, Beth called the neurologists office and reported them and asked what to do next. Spoke directly
with the doctor (who by the way has a better bedside manner on the phone than he does in person) said that he thinks that
this isn't the right medication for her and that we should come into the office on Friday, the 16th. He also said that he
got the results of the EEG from the hospital and that there is definitely some paroxysmal activity (seizure activity) shown.
He also said that it is in the frontal lobe of her brain and that it could possibly be controlled better by another medication.
We will certainly see! In the meantime, we upped her dosage of Tegretol again; now she takes 600 mg a day!
02/08/01: Appointment at the hospital for the EEG with sedation. We arrived a little early and MacKenzie was visibly
tired after sleeping almost 12 hours! Go figure! Scott went with her for the test and she sat in his lap the entire time!!
They gave her oral chlorylhydrate to make her go to sleep after they did all the other "awake" tests and Scott said that she
went right to sleep with it. After the test, she was so silly! She said that she was dizzy and that she liked the feeling!!
What a goof! We have to watch out for her when she gets to be a teenager :(
02/04/01: Mac had another partial seizure, this time at home in front of the T.V. Again, she was tired afterwards.
02/02/01: While shopping this evening, Mac had a partial seizure. She was reaching for something on a shelf and stopped
short and fell back. Thankfully Scott was right behind her and he caught her before her head hit the floor. She was VERY tired
afterward.
02/01/01: After keeping MacKenzie up until midnight last night and then getting her up at 7:30 and only a 30 minute nap
before her EEG at 1 p.m., she did not fall asleep during her EEG! The doctor said that her alpha waves look great but really
needed her to fall asleep so that he could assess her in a relaxed state and that more seizure activty may occur then. Had
to make an appointment for 02/08/01 for another EEG under sedation at the hospital. He also stated that her medication level
was still not right and we upped her dose of Tegretol again; now she is taking 500 mg/day. He also said that he believes that
the "blackouts" she has been having are partial seizures and that the medication is keeping them from becoming full blown
grand mal seizures! (This made us realize exactly how many seizures she would be having if she wasn't taking medication!!)
01/30/01: Mac had another "blackout" on the way to Beth's work today. We were all in the Jeep and she just cried out
(sounds kinda like a cry/laugh mixed together) then wouldn't/couldn't answer me for about 15-20 seconds. Afterwards, when
I asked her what she had been laughing at, she got mad as a hornet that I even thought that she had been laughing or even
made a noise. She was extremely sleepy afterwards.
01/24/01: Stopped by the neurologists office to pick up the lab requisition form to have Mac's blood drawn. Spoke with
the nurse about the "blackouts" and she got the doctor. He spoke with me for a moment and said that if it happened again before
her EEG next week to call him and he will meet us at the hospital to go ahead and do the EEG. He also said that they may be
"mini" seizures and that the medication may not help that type of seizure.
01/23/01: MacKenzie had 2 "blackouts" tonight - absence seizures we think is what they are. The first occured when she
was sitting in the bathroom brushing her teeth getting ready for bed. She was talking to me and just stopped mid sentence,
stared through me, and then fell off the counter. I was holding Jadyn and Sarah was brushing her teeth too. Sarah screamed
and I handed Jadyn to Sarah (Sarah is a GREAT babysitter) and I scooped Mac off the floor. She cried for about 5 minutes and
then was okay. She didn't know what had happened. About 15 minutes later, we were in her room and she was picking out what
to wear to school the next day. She started walking towards me and just fell again. This time she landed on the side of her
electronic piano and scraped her rearend pretty bad. She again didn't know what happened.
01/16/01: Tuesday evening at about 8:30, Scott, Sarah and Mac were all downstairs with the two eldest playing a computer
game and Mac watching a movie and playing in a tent she built in the living room. I was upstairs with Jadyn folding clothes
and asked Scott to bring me the basket from the laundry room in the basement so that I could finish folding the clothes. He
did and about 5 minutes later Sarah came upstairs to go to the restroom leaving Mac downstairs by herself. No more than 2
minutes passed and we heard Mac cry out and then a "boom". We all immediately stopped, listened, called her name and didn't
hear anything. (A "boom" in the house is not unusual as when you step real hard or sit down hard it reverberates through the
house.) Immediately Scott set off downstairs to see what was up and Sarah and I followed him. We were all calling Mac's name
to get her to answer and she wouldn't. When we got downstairs, she wasn't in the living room and we couldn't find her right
away. We did find her in the kitchen laying on her side in a full-blown grand mal seizure. I handed Jadyn to Sarah and they
went to sit on the couch. Scott and I starting rubbing Mac's back and talking to her to try to bring her out of the seizure,
as this is what they have told us to do and it worked before. The seizure itself lasted more than 3 minutes and during it
she was not breathing. I have to say watching your child be unable to breathe is worse than the seizure activity itself. Her
eyes began to turn black underneath, the eyeballs themselves began to bulge, she turned white around the mouth, the veins
on her neck and around her mouth began to bulge, and there was profuse amounts of saliva coming from her mouth. When the seizure
itself was over, she still wasn't breathing and Scott rolled her to her back and tried to give her a puff of air. Nothing
happened so I went to call 911 immediately. While I was on the phone with them, he picked Mac up and turned her upside down
to make sure that nothing was lodged in her throat and then he had to force her mouth open because she was still rigid from
the seizure. He realized that her tongue had slid back and was preventing her from breathing and moved it with his finger.
She still didn't start to breathe and he basically had to resuscitate her. He finally got her breathing and the paramedics
showed up 30 seconds later. They gave her some oxygen and she came around pretty quickly after that. They took her to the
hospital by ambulance with Scott riding along with her. Sarah, Jadyn and I followed in the car. She was coherent and awake
when I arrived 15 minutes later and is fine now. They took blood and did tests on the level of medicine in her system and
found that it was just right over the borderline of being too low (4.0 is the low and her level was 4.5). The ER docs called
our neurologist and he said to up her meds and to follow up with him the next day. We also have to get her blood level drawn
again in one week. So, there is what happened and how my dear husband saved the life of our dear middle daughter. Mac goes
for an EEG on Feb. 1 and a follow up appointment with the Dr. as well.
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