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

Another Day, Another Trip to the ER

Let me start by saying this mommy is exhausted.  I am mentally and physically drained.  As any parent with a sick child knows ER trips, doctor appointments, tests, your child not acting like themselves, the overwhelming helpless feelings, it is exhausting.  Add to that the frazzled, exhausted, craziness of a parent of a child on spectrum and it is amazing I am still standing... Ok enough about me, lets talk about David.


This afternoon after school, while having a snack, David began screaming he was in pain, and seemed to have some lock jaw symptoms.  After calming down a bit and stating he was doing a bit better, he started screaming again in pain and was unable to close his mouth and was unable to talk.  So off to the ER we went.  While in the car his symptoms got worse in some ways, he was in a great deal of pain and he was unable to swallow.  Also throughout this whole issue, David was having tremors throughout his body.  Clearly something was very wrong with my baby.

Once at the hospital, we had a new set of blood work completed and they kept him under observation.  I must say, despite being incredibly hot, his doctor was amazingly thorough.  He further spent a great deal of time consulting with David's doctors in order to ensure the best possible treatment plan.  He also gave me the results of David's EKG that he had done Monday, it was normal.  His blood level from Monday was a bit high so he wanted another level taken to make sure his Depakote level was not still high.  Turns out it was still high so we will be adjusting his medication.

So while we continue to have concerns of a seizure disorder, what David experienced today was a dystonic drug reaction.  What is that exactly?  It is a reaction to medication that usually occurs when one starts a new medication (not so for David-- naturally) that causes painful uncontrolled muscle spasms of the neck, face, or back.  It also affects the tongue and throat which is why is impacted David's ability to swallow.

This type of reaction can be controlled with an antidote dose of benadryl or cogentin.  Therefore we will now have liquid benadryl on hand at all times in case of another incident. And while treatment is relatively easy, it is still painful until we can get a dose into his system and get it working (as we found out when he had another one at bedtime tonight).  On the up side, dystonic reactions do not cause any permanent damage and do not mean that he is allergic to any of his medication. This said it remains strange that he is having this reaction from a medication he has been on for a year.

So where do we go from here... Once we got home tonight, David's doctor called and we came up with a plan for some of his medication changes as well as another medication level draw for next week.  We will also have to have benadryl on hand at the school and I will be there tomorrow to discuss all the new updates with the school.  We will also now carry benadryl on us at all times, which will be a lot like carrying the multiple epipens I carry.  We continue to be in regular contact with David's doctors and continue to focus on getting him into the neurologist to follow up on the concerns of seizures.

We want to thank everyone for all of your love and support.  It means the world to us.  It has been a very long week.  Hopefully  we will have more answers soon and David will be back to himself soon.  XO

David in the ER

At least he was smiling at this point

The Call Every Mother Wants... "The Paramedics are here for David and ready to transport him, do you want to come to the school or meet them at the hospital?"

Last Wednesday (Sept 26,2012), I got the phone call no parent wants to receive... "Hi Mrs. Dixon, this is David's school, we have the paramedics here with David ready to transport him to the hospital.  Would you like to come here first or do you want to meet them at the hospital?"  My response... "Um excuse me, WHAT?!"  In my frenzy to get myself to the school my rushed answer was "I'll come to the school."  I only got bits in pieces on my way to the school which thankfully a mile away and only takes a few minutes to get to.

Once at school, with the paramedics and the school nurse I was informed that David  was found sleeping at his desk.  When they were unable to wake him they called the school nurse, who attempted find his pulse.  He remained unresponsive and the school nurse found pulse hard to find, deep, and thready.  When she checked his eye, she reported to me that they were rolled back into his head, so they immediately contacted the paramedics.

When I got to the school David was in the ambulance, he was awake but very confused. His vitals were ok, but it was recommended he go to the hospital for a work up.  So he was transported to the ER.   Once at the ER he remained very confused.  While he had moments where he had increased energy and lucidity he remained largely lethargic. While at the ER he had a CT scan of the head completed as well as a full blood panel done.  He had his blood sugar checked in the ambulance as well, which was in normal range.

David did well during his CT scan, which came back normal.  Unfortunately, this was not the case with his blood draw.  For one, he has never been a good draw so I guess in a way that was a good sign, although he did not fight nearly as much as he would normally.  Probably the most disheartening moment of that whole day happened when the phlebotomist came in to do David's blood draw.  She asked David "if he had any siblings, if he had any brothers or sisters?"  David looked at her very confused, and stated "I, I don't know."  Let me tell you my heart broke and I was in a panic.  I told him "Yes you have a brother, Joaquin," and then she asked him how old he was, and he answered, "oh, oh yeah, he's 5."  I have never seen David like this before, and it has truly been some of the scariest times we have had.

After both his CT and his blood work came back normal we were discharged because in the ER doctor's words, David was essentially stable (in so far as he was no longer in an emergent condition and he did not need further observation).  The ER doctor worked in collaboration with David's pediatrician, and we were to follow up the next day.  At discharge, the ER expressed concerns of potential seizures.

On Thursday we met with the pediatrician.  He went over David's blood work and his CT with me, which again was all normal.  His physical exam was also normal.  We then spent time discussing his medication, as the concern was that some of his medication could cause extreme exhaustion.  We agreed that I would follow up with his psychiatrist about two of the medications as he is the prescribing doctor, whom we had an appointment with later in the day. We also discussed the fact that seizures were a distinct possibility.  We reviewed his EEG history which consist of two negative EEG's as well as a negative EEG during his sleep study.  This said he did tell me that having a negative EEG does not mean he is not having seizures and if we  do not find anything with the medication we need to follow up with the neurologist.

On to the psychiatrist... Once updated he checked in with David, who he noted did not seem like his typical self.  He did check his pulse which was normal and easy to find.  We reviewed his medications and his blood work results.  Unfortunately they did not do a level on one of his medications, so we have to have another draw done.  Other than that there is no reason to believe that his medication or anything in his blood work would be causing a potential seizure.  He is particularly concerned because David is currently on anti-seizure medication for behavior/mood treatment for his aspergers, hence the need for a new level.  So next on the list is looking at his meds... two of his meds, the ones the pediatrician was concerned about, can cause drowsiness, however David has been on them for a while so we don't really think that is what it is.  None the less we are getting the new level checked and we adjusted the timing of when he gets one of those two medications.  Next we looked at his ADHD medications.  David has been on stimulant medication since he was 5, because of this he has had an EKG in the past.  His psychiatrist is concerned that because these types of medications can have negative effects on the heart, this may be causing his exhaustion and potentially could be triggering a seizure.  Therefore we are having a new EKG done as well and he was taken off of both of those medications and placed on a new medication that does not have effects on the heart.

Now you might have noticed, like I have that every doctor keeps coming back to the word seizure.  And ultimately, despite all of the medication changes, blood draws, CT's, and EKG's, every doctor comes back to the fact  that it sounds like he has had or is having seizures.  So back to the neurologist we go... well, sort of.  The first available appointment with David's neurologist in January 22,2013.  SERIOUSLY!!

I have talked to the neurologist's nurse and we are hoping to get him in sooner, basically we are waiting to here back from the doctor and get the results of the blood level.  We have gotten the second blood draw done, poor David was a pin cushion (it took 3 tries).  We have also gotten the EKG completed.  We are just waiting to hear from the doctor about the results.

So, how is David doing?... Well, he is really a mix bag a this point.  He continues to have ups and downs with regards to lethargy.  He has taken several long naps over the past five days and has at times been very difficult to rouse.  He has also had periods where he seems to almost disappear, after which he becomes extremely lethargic and is often very confused.  My husband Brent has epilepsy, and has partial complex seizures, and the episodes we have seen with David seem very similar.

On the upside, David did make it back to school today!  He came in at mid-day, and despite as he says "everyone" asking him about what happened? He had a good day.  The goal of course is to get him back to school full time, but after talking with his principal today we agreed that we will work together to get him in school as much as possible while he is going through this process.

So we are still waiting for answers but hopefully heading in the right direction.  Thank you to everyone who has been checking in with us.  We appreciate all of the love and support. XO