Results are in...

On Monday I called the neurologist office to get the results of David's MRI and EEG.  Unfortunately, the doctor was not in but his results were there.  The nurse quickly looked at them and decided to give me the results over the phone before the doctor had reviewed them.  Sadly, I this is a choice we both regret.

David's EEG was normal which means no abnormal patterns suggesting seizure activity were picked up during his short EEG.  Of course not.  This is David's third short EEG and he has never had a seizure or seizure activity during one, however over the past 9 years we have continually had periods of concern that he does in fact have seizures.

David's MRI showed no masses or structural abnormalities, nor did it show any signs of seizures.  Unfortunately, the report did indicate that there was a mild spread out cortical atrophy (that would be a mix of her words and mine because I was in such a state of shock I went a bit numb). "What does this mean I asked?" the nurse advised me that she didn't know exactly but did share with me that it was spread out, cortical referred to his brain cortex (no shit), and that atrophy means shrink (again, no shit! Oh and you left out the fact that it is shrinking because it is not being used which is kind of like dying!!!!-- OK I admit to being in freaked out mommy mode at the time and to many people's surprise I did hold it together and not tell off the nurse for putting me in this state of panic). She also stated that the report noted that this might be due to extended periods of time on anti-convulsive medication (Depakote).  One problem... He has only been taking Depakote for 10 months.  Not really what you call an extended period of time. So at this point she has no answers.  She clearly feels like crap, because she can tell by my voice that I am now scared shitless and there is nothing anyone can do but wait until the doctor can read it the following day.  GREAT!

The next day I did speak with the nurse again who apologized profusely, and then reported that the neurologist had spoken with the radiologist who had read the MRI as well as reviewed the MRI himself and felt their was no issue, thus his MRI was considered normal.  Since his next neurology appointment wasn't for 3 weeks and the plan had been to make a medication change following the results of the EEG and MRI as well as possibly completing a 24-48 hour EEG and considering I still wasn't feeling great about the MRI results we got an appointment to see the neurologist the following day (somehow I think the nurse felt bad for me and got me is asap).

When we saw the neurologist he did explain that David's MRI was normal.  Apparently the doctor who had read his MRI does not usually read children's MRI's and there are difference that can be noted between children's and adult's brains.  The neurologist reviewed the MRI himself and said everything was fine.  Furthermore, he said David has not been on the types of medication that were being suggested in the report because they refer to 1st generation anti-seizure medications and Depakote is not a 1st generation med. We did agree to change David's medication which will take 2-3 weeks to get to a therapeutic level and he will likely be out of school during that time. We also decided that we would go ahead with the extended EEG, which will have to be done in the hospital.

We saw the psychiatrist on Monday just after my horrible results phone call and David's psychiatrist decided to try to keep things simple.  We weren't seeing a lot of effect from the latest medication change so we decided to stop it and not add anything new until we could get through adding his new medication with the neurologist (which should help both seizure activity and behavior/mood).  Unfortunately, his behavior was immediately devolved and the neurologist suggested adding his ADHD medication back, which we did.  We then spent 36+ extremely long hours while David refused to sleep because he wasn't tired.  Endured him acting out aggressively to himself and others, and endured constant screaming and yelling.  Believe me NOT my idea of a good time. After talking to the psychiatrist we are going to start another medication, however he wants to clear it with the neurologist because we start it so in the mean time we are utilizing one of David's other medications to help as well as lots of melatonin to aid in sleep. Hopefully we will be able to find something that will help so that we all can get some good sleep.

For now we are waiting for medication to build up and kick in and scheduling a time for David to be admitted for his extended EEG.

With Good Days Come Bad Days and Then Some Really Bad Days

After a wonderful day at the pumpkin patch we were hopeful that we were on our way to some better days, but unfortunately we were a little to hopeful to soon.  On Sunday after being at the pumpkin patch, we notice that David continued to become confused easily and then irritable in his confusion.  It is hard to watch this because he has always been so bright and so sharp.  Luckily we knew we were waiting for the results of all of the testing so we were hoping to have so sort of answers by Monday.  Unfortunately, David continued to struggle.

David's confusion is a challenge because it comes in two different ways.  More often now it seems he is confused by directives.  For example at church on Sunday David became very overwhelmed and confused when I asked him to read the Act of Contrition before communion.  This is something that David has done in church since he could read (because he is set to do his communion this year he hasn't memorized it yet).  Each week I point out the paragraph to be read and David reads it to himself.  This week was no different, until David didn't understand what I was asking him to do. He got flustered, and frustrated because he didn't understand that I wanted him to read the paragraph.  He didn't understand which paragraph to read.  He didn't understand where to begin and where to end. Because of this started to throw a tantrum to express his frustration. Most of the time we were able to calm him down and redirect him, although there have been times we have had more of a struggle. The other way we see David's confusion has been in his lack of understanding simple and basic tasks.  By this I mean everyday things were confusing to him.  Luckily since we have seen less of the distonic symptoms and is looks like we are having improved control over the possible seizures.  This type of general confusion, is improving every day, which brings David closer and closer to being himself.

As we have been going through all of this we have slowly been taking David off of his medication (for one reason or another this has been necessary). Unfortunately, David has limited self control. He is screaming and yelling instantly when upset. He is more aggressive and destructive and we have been extremely worried about his ability to keep himself safe and his ability to be safe around others. It is heartbreaking to see him out of control.

It seems like every time I go to write something I am saying "the hardest thing about this" or "the worst part of this".  The thing is, it seems like every time we are dealing with something, whether it is the confusion, tremors, aggression, or irritability it feels like "the hardest" and "the worst part" of this whole situation, because ultimately the hardest/worst thing is watching him go through all of this and not be able to do anything to make it better.  I know that we are doing everything we can. I know he is seeing the right doctors and they are doing the right tests but as a mom, I am still the one there day in and day out watching  as he goes through all of this, and feeling completely helpless.  I hate it.  Believe me I know that things could be worse, I feel blessed for the doctors, family and friends that we have helping us through all of this. I just hate feeling helpless. I hate not having the answers.  So for now all I can do is wait.

Finally, A Good Day!

After almost four weeks of hell we finally had a breakthrough, sort of.  On Saturday,  we had planned to go to the pumpkin patch with the boys padrino and his family. While we had been worried we might have to cancel if David was having a rough day or if he was not doing well, other than some serious sibling fighting, he was doing great!

We planned to head to a pumpkin farm near our house because we wanted to be close to home in case we needed to leave early or worse needed to go to the ER yet again (at least this way were close to our doctors). Unfortunately, padrino Danny ended up having to work so he and his family wasn't able to come with us. We did however still decide to head out to the pumpkin farm.  The kids had been looking forward to going and David was actually feeling good for the first time.

So out to Goebbert's Pumpkin Farm we went... It was a beautiful day and the kids had a wonderful time!  David was particularly excited because they had a special horse mounted gun show... He absolutely loved it! Both boys loved running around on the hay bale maze and watching the magician, riding on the hay ride out to the patch to pick out their pumpkins, and just being out having fun.

Despite a couple of crabby moments, David did great!  He was laughing and smiling for the first time in weeks... He was genuinely happy.  He even asked if he could go back to school and karate (not quite yet).  It really was a wonderful day!

David and Joaquin hanging out on some of the giant pumpkins

One of the female mounted shooters aiming at her target

One of the male mounted shooters

David watching the mounted riders

Joaquin in jail

The boys in jail (I wish, lol)

David 

Joaquin

YiHa!

David watching donuts being made

Smiling David... The best part of my day

Brent and the boys on a hay ride

Me and the boys

Joaquin with his pumpkin

David with his pumpkin

Testing Day

Thursday last week was testing day.  After a sleep deprived night for David (and mommy) we headed to St. Alexius Hospital to have both David's short EEG and his MRI done. Both of these test were ordered by the neurologist in order to determine in he was having any seizures and/or if there was any structural issues with his brain or seizure activity that might not be seen on an EEG, but that can be seen on a MRI.

First up, the short EEG.  For those of you who don't know, an EEG (or electroencephalograph) is the recording of electrical activity along the scalp. The EEG records the brain's spontaneous electrical activity over a period of time and is used to determine if brain waves are "normal" for age during wake and sleep.  In this case we did a short EEG, which means it was done for  a short period of time, about 30-40 minutes, with a mixture of wake and sleep.  He was also put in stress situations such as hyperventilation and overestimation (flashing/strobing lights).  David did great great.  He tolerated having all of the electrodes placed on his head, and smiled at the fact that he looked like a mummy once his head was wrapped up to protect the electrodes.  He also did well with the parts he was asked to participate in during wake and promptly fell asleep when he was able.  When it was over, he was tolerant of the technician who took the electrodes off and attempted wash the goop out of his hair, but truth be told he was a bit crabby.

Next up, a snack from the Starbucks in the hospital lobby while we waited.  Thank goodness for Starbucks, because this sleep deprived mommy needed her coffee!  Then we headed down to MRI. We ended up having to wait about an hour between appointments but that was ok.  David ended up watching cartoons in the waiting room, so he was fine.

David's MRI (or magnetic resonance imagining) was done as another diagnostic tool.  Utilizing a special MRI machine, specifically for seizure imagining, the goal is to try to identify if one, there are any abnormalities in the brain that could be causing seizures (tumors, masses,etc). Two, if he is having seizures can they identify where they are located by way of scar tissue. And three, are they able to determine the type of seizure that he might be having: Partial seizures, which begin in one area of the brain or general seizures which seem to affect the entire brain. Again, David did great!  He was able to stay still for the entire hour of the test and despite the loud noise of the machine, did not seem to be affected.

All in all it was a good day... now we just have to wait for results!

Mommy and David getting sleep deprived

All hooked up like Frankenstein

EEG 

Now wrapped up like a Mummy

EEG

Daddy and David watching funny videos while 

waiting for his MRI

David getting ready for his MRI

Going into the tube

Daddy putting ear plugs in since

he stayed with David

Three weeks, three ER trips

Yesterday we were back at the ER.  After taking Joaquin to school, David still hasn't made it back to school, when I checked on David he reported he was feeling "funny." While checking on him, he began shaking and crying and stating that his nose was shrinking.  He got really scared and and started panicking.  He also became afraid of his angry birds poster in his panic so he made me take it down.  He was actually having a muscle spasm in his face, but it was very painful and it was over the bridge of his nose so it also felt very strange.  During the several more he had throughout the day he reported feeling like his nose was going into his head, fearing he was turning into an alien, fearing he was turning into a skeleton, fearing he was turning into a monster. He also had an increase in his shaking and tremors and had some focal tremors,  as well as short full body tremors that we were concerned might be focal and mini seizures.  So off to the ER we went again.

Once there he had a few more episodes.  They started blood work and observed him.  The ER doctor also consulted with both the neurologist and the psychiatrist. The doctors feel that David is still having dystonic  symptoms.  Unfortunately we also found out that David has not had any change in his Depakote level from two weeks ago when they reduced his medication.  While Depakote is not the medication that is causing the dystonic medication reaction, this information is very important for two reasons; one his Depakote level is still too high, and two his body does not appear to metabolize his medication  in the same way as most.  By the latter comment I mean, the doctors expected to see a change in David's Depakote level by now.  We were told it generally takes 1-2 weeks to see the Depakote level stabilize, therefore they would expect that his Depakote level would be within a normal range by now, instead of still 30% above what it should be.

The other reason this is bad is because despite stopping the medication that is causing dystonic reaction is going to take time (probably a week or two) to get out of his system.  This new information about how he is metabolizing his medication suggests it might take much longer... Not good.  For now all we can do is wait and hope that the medicine leaves his body quickly.

As for seizures, there is still concern that seizures are underlying. Tomorrow we go for a short EEG and an MRI. We are hopeful to have some answers with regards to the seizures after that.  If not, our next test will be a 24 hour EEG. David will also continue to have regular blood work to monitor his blood levels.

We want to thank everyone for your love and support through all of this.  It is a huge help to us to we have so many people supporting us. XO

Shake, Rattle, and This Really Sucks!

Every parent knows watching your child in pain is one of the hardest, most heart breaking things we do.  It is impossible to sit an watch helplessly as your child is in sick or hurting.  Waiting and not having answers is like driving bamboo shards under one's nails... it truly is torture.

Well, while we have continued in this limbo of knowing there is likely a seizure disorder going on but not being able to get into the neurologist David's condition has progressively gotten worse.  We started noticing that he was shaking more often, and was having increased incidents of more intense tremors. Earlier this week I took David in to see the pediatrician again and after examining him, his pediatrician gave me the bad and good information... He has clear neurological symptoms and needs to be seen by the neurologist as soon as possible.

Why is this bad  and good?  Well clearly the bad is there is something wrong with my child and that something is serious.  The pediatrician noted that his neurological symptoms not only included his now constant shaking, but also an inability to control his tongue and some of the muscles around his mouth, changes in his gait, and changes in his speech. He referred us to another neurologist, as we still have been unable to change our January 22, 2013 appointment with David's current neurologist (Luckily we were able to get into the new neurologist today...more on that later). So what could possibly be good about this? At least we are beginning to get some answers.

Unfortunately, his condition is progressing rapidly.  Since seeing the pediatrician on Tuesday, David's motor skills have decreased significantly, the shaking and tremors have increased, his speech quality has decreased and even his cognitive skills seem to have decreased.  Yesterday he started complaining of pain in his eye, and by this morning he was unable to open his eye for periods of time.  Luckily we saw the neurologist today.

After giving an initial history and exam we were told David was presenting with Parkinson's symptoms. His eye pain and inability to open or see from his eye was due to muscle spams that can occur in the eye muscles. The neurologist believes the severity of the symptoms are likely due to one of David's medications.  Apparently, it is possible to be on this medication of a significant period of time and still end up having this reaction (David has been on this medication for a little over a year). So after the neurologist and the psychiatrist consulted we all agreed David would stop this medication immediately.  This should decrease the symptoms completely, however both doctors are unsure of how long it will take until the symptoms extinguish.  Unfortunately, David is unable to attend school or karate in his current condition.  We are concerned because we know he is falling behind, but even while at home, he is unable to do work.  

David had more blood work done today and will have both an EEG and a MRI next week too try to identify the seizures.  In the meantime we are left watching helplessly as he cries in pain as his eye spasms; try to help him hold onto and take his medication because he is not only shaking and having tremors but also because he does not have full control over his mouth and tongue muscles; lead and/or carry him from place to place because he can't open his eyes; and watching as David spends the vast majority of his time sleeping because he doesn't have the energy to do anything else. Yup, this really sucks!  Watching, knowing I am doing all the right things and still feeling helpless. Knowing I can't do any more than what am,what my gut tells me to do,  what I have been told to do by multiple doctors... waiting for his body to adapt, for the medication to get out of his system; waiting to have more tests and waiting for results... waiting to get my fun loving, baby back.

My Karate Kid!

With so much crazy medical issues going on right now, I decided I wanted to focus on some of David's awesomeness!  This summer David reached a huge milestone one his way to his black belt, he tested for and received his first of three brown belts.  It is a huge accomplishment considering I can remember when he first started karate at the age of 6.

David started karate at 6 and fell in love.    David attends National Karate, and began in the children's program. At the time we were also doing soccer and while he loved both, he truly found a place at karate. When he turned 8 we  had to decide if he was going to continue on with karate in an attempt to work towards a black belt, or if we were going to focus on other sports.  David decided he wanted to give up other sports and work on getting his black belt.  And work on it he has!

David is extremely dedicated to karate (believe me, we virtually live there).  He attends class three times a week including sparring and now that he has achieved brown belt status, he is able to participate in leadership which allows brown belt and higher students the ability to help in classes.  As they develop and grow within the leadership program they gain more responsibility, and learn how to teach karate to others.  David loves being a part of leadership.  He loves helping in the classes in which he assists (another 2 classes he attends during the week- that's right 5 classes a week!) and looks forward to gaining more responsibility and eventually being able to teach like his favorite teachers. I have to say this is one of my favorite things to watch him do.  He is so encouraging to the younger students and to the lower belts.  He truly loves it and it shows every time he is in class for leadership.

One of the best things about karate has been the support system we have been able to develop. Being part of National Karate means being a part of the NK family.  David takes private lessons with one of his teachers, Mr. Hund, who we have dubbed the David whisperer, has been a huge support to our family and a wonderful mentor to David.  He has a way of getting through to David when my husband and I can't.  He is also willing to assist when David is having struggles related to his spectrum disorder.  One of the amazing things about NK is their dedication to their students.  When David was first diagnosed with Asperger's syndrome I not only spoke directly with his teachers, but also to the owner/director who has also worked with David since he started.  I was amazed to find out that he has had training's for the staff on issues like ADHD and spectrum disorders. He further advised me that if necessary he would be sure to have someone brought in for a training.  To me this was amazing!  I mean, we spent a year and a half fighting with his elementary school for a 504 plan and when I go to the karate school to advise them of his diagnosis this is the response I get.  This is the way it should be! "Let's work with kids where they are and make them the best they can be!" Interestingly, when we had the kids birthday party at the karate school, one of our friends who also has a son on spectrum noticed instantly how good the teachers were, specifically with the kids with ADHD and spectrum issues.  We clearly found the best possible place for our children.

So back to David... Over the summer David and some of his friends attended karate camp and then this September they tested for and earned their brown with single black stripe belt.  David has one more brown belt  (brown with two black stripes) to test for before heading to his black belt exam. Hopefully he will be testing for his black belt in June of next year.  A goal he and his friends have been hard at work for.  I am very proud of all David has been able to accomplish; I am thankful for all of the support, love, and friendship we have found within National Karate; and I am excited for that day next year when I watch my baby receive his black belt.

David Through the Years

David when he got his white belt (age 6)

 David during the Fall 2010 tournament

       

David and Master Nelson

Fall Tournament 2010

                

David doing self defense in the Spring 2011 tournament 

                    

David & Mr. Hund Spring 2011

Fourth of July Parade 2011

Green belt

Blue Belt

David and Joaquin with Mr. Hund

Fall 2011 Tournament

(Yep, we have 2 in karate now!)

 David & Mr. Drescher

after earning his red belt                                     

David and his friend Aidan

after earning their red belts

Getting ready for sparring Spring 2012

Future Black Belts

David and his friends after

earning their brown belts

July 2012

David and Mr. Hund 

after his brown belt exam

July 2012

David and his friend Logan

after earning their

brown with single black stripe belts

September 2012

                          

David and Mr. Hund

after earning his

brown with single black stripe belt

September 2012