Wednesday, November 14, 2012

Finally Some Decent News... Results from the long EEG

Yesterday we headed to the neurologist for a followup.  We happened to see the doctor in the hallway while the nurse was weighing and measuring David, and while he waved and said hi to me he seemed a bit confused.  He explained why when we saw him in the room...  He said he didn't even recognize David because he was doing so well.  This was the first time he has seen him where he has been able to walk under his own power, stand straight, was not shaking uncontrollably, not ripping paper to shreds,  not itching uncontrollably,  awake, and in general not miserable.

He checked David's rash which is now almost gone (just a bit left on his legs) and will thankfully cause no scaring.  We also discussed David's long (48 hr) EEG. He said it was a good study and advised us that the few moments that we marked on the study did not show any seizure activity, which is good.  We were able to push a button any time we were concerned about seizure activity and then the monitor would "bookmark" a 10 minute chunk of time for the doctor to look at.   We also found out that David's epilepsy looks to be well controlled on his current medication which is great!  That said he did have a seizure in his sleep on his second night in the hospital, which we discussed.  We will now have to keep a good on these to make sure we are not seeing any more seizures especially since his current Depakote level, while finally in a normal range is actually on the low side of normal.  So worse case scenario we will have to increase his Depakote.

One bad thing from the appointment was finding out that David will continue to have the tremors, jerking, and ticks that have developed as a result of taking one of his medications (Risperdol). While they have diminished greatly he still has some continued tremors/ jerking movements in his hands and feet.  He also has facial ticks, mainly near his mouth, although occasionally around his eyes.  The neurologist said that because of his age we have every reason to believe they will eventually go away, but we have no idea how long or how quickly it could be.

The other issue we discussed was the fact that he is now extremely limited on medication that can be used.  Unfortunately our neurologist somewhat jokingly and somewhat truthfully say he doesn't even want to touch him with any other medications. The reality is he is just to allergic to two main anti-seizure medications, so we won't be trying anything new unless we really, really have too.

The best part was David's excitement when he was told he could go back to school next week and back to karate as well as sparring.  He will actually go back to school after Thanksgiving since the boys are on fall break next week.  I must admit, I am excited to have him go back too, although I am worried about how he will handle the transition and I am worried about his ability to catch up without feeling overwhelmed.

Lastly, for those who have asked, David had an allergic reaction to Lamictal which he was being transitioned to to treat his seizures because it also is very successful treating mood/ behavior issues, thus allowing us to ultimately decrease the amounts of medication David is on overall.  3% of all people on Lamictal run the risk of allergic reaction including rash and the possibility of Steven's Johnson Syndrome.  We were told, of that 3%, 1% are children so the chances of David having an allergic reaction were really less than 1%.  Aren't we lucky!    Also, this medication is while also a seizure medication is not in the same family of medications as the medication that David had his previous allergic reaction to in January.  While I don't have the stats on it, I have been told that David is an extreme rare case because having Steven's Johnson's Syndrome once is rare, having it twice from two separate medications is crazy.  Clearly my son is super special!


My super amazing son, aka
The Dancing King

This is from early September,just two weeks before the seizure at school and ambulance transport, but this is the perfect image to showcase the true David... I am so happy we are finally on our way back to seeing this guy in action!

Friday, November 9, 2012

So What The Heck Is Wrong with This Kid?

The other day one of my friend's asked me what David's actual diagnosis was?  She wanted to know because this has been going on for over six weeks now. We have been in and out of ER's doctor's appointments, and hospitals; and all types of tests done, but what is actually wrong with David.  So here is what we know...

Last year David was diagnosed with Asperger's Syndrome which is an Autism Spectrum Disorder (ASD).  He is also diagnosed with ADHD.  Which, while symptoms are often seen in children which an ASD, typically and clinically an ASD and ADHD are not diagnosed together.  That said when David had his neuro-psychological done his ADHD scores where overwhelming and because his medication therapy was successful in treating and maintain his symptoms it was felt to be an appropriate diagnosis.

Since being transported for a possible seizure at the end of September, David has been diagnosed with epilepsy or a seizure disorder.  At this point we are continuing testing to try to "catch" a seizure or seizure activity because so far his EEG's have been within normal limits.

David has had seizures since he was six months old. At the time we thought that they had resolved themselves and then two years ago we went through a lengthy process of trying to identify a seizure after David had several vacant moments at school followed by exhaustion, and collapsing.  After several months we again thought that most of the issues were under control and in fact were hopeful that things would be even better controlled when he started Depakote for his behavioral issues. Unfortunately we have ended up where we are.

As for his current hospital stay, we are here because he had an allergic reaction/ Steven Johnson Syndrome reaction to his medication. Unfortunately, this type of reaction is extremely serious and can get worse very quickly. It can be scarring, disfiguring and even life threatening if not caught and treated quickly.  If you don't have a strong stomach, I highly recommend you DO NOT Google it.  You will be left with some very disturbing images.  Luckily both times we have faced this, we have caught it quickly and our doctors have been able to get it under control.

All of that said, I am extremely grateful for the team of doctors that we have treating David. They have been willing to work together despite different hospital affiliations, and different areas of practice.  They have been willing to deal with my sometimes daily calls.  They have called late in the evening following an ER visit just to "check in."  They have texted me and allowed me to text them with questions, concerns, and again to "check in" on how David is doing.  We have been incredibly blessed and I am so thankful for that.

I am also grateful to all of you, who have called, facebooked, emailed, texted, and messaged your well wishes, prayers, and concerns.  We appreciate your love and support.

Here is one of the happier pics I have of David during this
whole ordeal.  It was while we were at the pumpkin
patch and he was just having a great time.

I love that smile

And Back to the Hospital We Go... Does Anyone Else Feel Like We Are on a Merry-Go-Round?

Here we go again... After almost three weeks on his new medication we are back in the ER facing an allergic reaction and hoping that we are not dealing with Steven Johnson's Syndrome for a second time.

On Tuesday David and I went to get "hooked up" for his 48 hour EEG.  After his previous tests we decided to have the 48 hour EEG to get a longer study that included both awaking and sleeping.  David had all of the electrodes put on on Tuesday and was scheduled to have them taken off on Thursday.

If you have ever had an EEG, they are not painful, but they are not necessarily pleasant either.  It is a pain to have 20+ electrodes stuck to your head and chest. Because David was having this done as an outpatient he also had to have part of the recorder on his head, and then had to have his head wrapped up.  He also had to carry a small computer monitor, which was recording all of the information, at all times.  While these things are not terrible, they are annoying, especially when you are a kid.  It didn't help that a few of the electrodes were located in the same area as his glasses, thus rubbing uncomfortably.  It also did not help that it was not a comfortable way to sleep.

On Tuesday evening I notices that David's cheeks were getting very flush and starting to rash.  By Wednesday he had a full on rash cover his cheeks and his back.  I contacted his neurologist because his new medication can have a rash side effect and it also has a risk for Steven Johnson's Syndrome.  The on-call neurologist had me keep his medication the way they were (he was supposed to be starting an increased dose that night) and was going to have his neurologist follow up the following day.

By Thursday morning David was covered from head to toe in a red angry rash.  It was the most pronounced on his face and it was continuing to spread.  When the neurologist called he advised to stop his new medication as he was having an allergic reaction to the medication and there was a high concern he was having a Steven Johnson's Syndrome reaction again (David had Steven Johnson's Syndrome in January of this year from a different medication). As the morning progressed, and by progressed I mean getting up and getting clothes on, David was horribly uncomfortable.  We headed to the hospital to have him "unhooked" during which time he could barely sit still he was itching so much and he was crying he was in so much discomfort and pain.  Once he was unhooked from the EEG we decided to walk over to the ER and have him evaluated.

They took him in immediately and examined him.  They put in an IV and took a great deal of blood work and then began giving him multiple medications including benedryl and epinephrine to stop the reaction.  Luckily it helped, unfortunately it didn't last.  David's rash was spreading close to his eye and he was starting to run a low grade fever, that combined with the fact that they could not control his pain/itching discomfort, they made the decision to have him transported to the hospital closer to our house and have him admitted.

Let me say I am so happy they admitted him because after the night we had last night, there is no way we would have been able to control his pain/itching discomfort from home.  In fact we were up most of the night because he was miserable.  We are continuing to struggle with the fact that they are having a very difficult time controlling his comfort level.  It seems that both medications he is taking for the itching wear off within the first two hours, however he can only get the medications every six hours.  And while they have tried to taper them, we are really struggling to keep him comfortable.

The neurologist saw him this morning and decided, despite some improvement he wanted to have David remain in the hospital for at least one more night and he and the pediatrician would re-evaluate on Saturday.  Again, I am thankful for this because we are still having such a hard time maintaining his comfort level.  At this point we know we will be here until at least Saturday with the possibility of staying until Sunday.

As for continued treatment, like everything else, we just have to wait for it to leave his system.  He will also now be considered allergic to this medication too and as his neurologist says he is getting harder to treat because the list of available medications is narrowing and the concern for allergic reaction is increasing.  For now we are hopeful the anti-itch medications will do what they are supposed to and his rash will continue to recede. 

David Hanging Out In the Hospital 

New meds, new David?

So after getting the results of David's short EEG and MRI we also started new medication.  We had been tapering down on his Depakote and David's neurologist and psychiatrist decided to start him on a medication called Lamictal in the hopes that it would be able to treat both the seizure issues and treat the behavior issues related to his ASD.  At this point David was only on Depakote, as we had stopped all of his other medications in response to all of his other symptoms.

Well no meds equals hell on wheels.  David was incredibly defiant, increasingly agitated, irritable and aggressive.  In short he was hell.  He was also dangerous.  He was unwrapping paperclips and trying to stab himself in the hand with them.  He was also trying to do this to my mom who was watching him during part of the day.  He got mad at his brother and wrenched his arm, luckily with no damage. And decided a chopping knife was a fun new toy.  The latter was the most disturbing to me not so much because of the "danger" aspect (and yes, that did scare me), but more so because David is terrified of knives.  He doesn't even like butter knives and he cowers if someone has a knife that is sharper than a steak knife near him.  So it was just so abnormal.  This was also the first time he has been this "unmedicated" since he was first diagnosed with ADHD and eventually ASD. David continued this fabulous behavior with a wonderful 36 hours of being awake which makes for very irritable, less than tolerant, crabby parents.  Sufficed to say it was a very difficult few days.

We continued to have sleep problems, despite the new meds, although we did see some behavioral improvements.  So we headed to Chicago to check out the new Ann and Robert H Lurie Children's Hospital, because we had nothing better to do on a Thursday afternoon, and because that is wear David's  sleep medicine specialist is at.   And while I figured David's wonderful sleep medicine doctor would not have a magic answer or magic pill/ treatment to fix him I have to admit a part of me was sad when he said he wanted to wait to see what happens when his meds stabilize before trying to add or do anything else.  On the upside, I got some much needed validation on my parenting and constant solution seeking from his doctor, which is one of the many reasons I love him.  He looked at me and just knew I was exhausted, a bit lost, and needing someone other than my husband, family, or friends to tell me that I was doing the right thing.  And he was right I needed it desperately.

After almost a week, David started another medication to help with sleep as well behavior to replace the medication that caused all of the distonia.  Since then his sleeping has improved and so has his behavior and attitude.   He is looking forward to going back to school, although he is a bit concerned about being behind.  We are hopeful that once we can get his medication stable he we be back in school quickly.


Presenting Dr. Joaquin...
while at our appointment on of the doctors' let 
Joaquin play with his stethoscope

Examining the patient

Trick-or-Treat

I feel like it has been forever since I last updated this blog. We have had a bunch of ups and downs since getting the results of the short EEG and MRI.  But I figured I would start with an up.  David was finally starting to feel better.  He was asking about when he would get to go back to school and looking forward to Halloween.  And while he was still having issues with shaking, twitching, some vacant moments, and a joyous 36 hours of not sleeping coupled with increased irritability and agitation, anger and aggressive behavior; we finally felt like we were heading in the right direction.  David was very disappointed that he was unable to go to school and attend his school Halloween party, but he was happy to be able to go trick-or-treating.  After a great deal of back and forth the boys hashed out who was going to be who and we were ready to go.  Every year we try to pick a family theme, so that we can all take part in the fun. Halloween is my favorite holiday, and sadly my husband has to pay the consequence of that.  Luckily, he usually plays along, although some years are harder than others.

This year however was easy.  We decided to go as the Justice League.  I have always loved Wonder Woman so I knew right away who I was going as. Both of the boys love batman, so the battle to be Batman was on. After a bunch of going back and forth Joaquin ended up winning out and go to be Batman. David then struggled between being Green Lantern and Robin, and ultimately decided to go with Robin. And then there was Daddy, what would we have him be?  Well lucky for Daddy he has a Superman shirt so he got to wear it with a cape and some jeans.  Despite freezing temperatures the boys had a great time and hauled in the candy!
Me and My Super Boys


Daddy and His Super Boys

Super Parents
Wonder Woman and Superman

Justice League Diaz-Dixon Style
Batman, Wonder Woman, Superman, and Robin!



Monday, October 29, 2012

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.

Sunday, October 28, 2012

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

Tuesday, October 23, 2012

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

Wednesday, October 17, 2012

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

Saturday, October 13, 2012

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.


Friday, October 12, 2012

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



Wednesday, October 3, 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

Tuesday, October 2, 2012

New school year, new issues

As many parents of children on spectrum know dealing with the school system is a pain.  It is a particular pain when the school in unwilling to work with you, your child, or within the bounds of your child's IEP or 504 plan.

After struggling for two years to get a 504 plan in place, and then working with the school on multiple occasions to create the most appropriate and in depth plan possible.  The idea of course being create the most  detailed plan outlining the appropriate services to fit David's needs and aid not only with his current needs but help him continue to acquire skills so that he can become more adaptive in the school setting, specifically in transitions.

Well new school year + new teacher + new principal = unhappy mommy and a very disregulated David.  Now to be fair I really like the new principal.  He seems to be willing to work with me, he addresses my concerns directly, and has solid plans to improve the school.  Also, the transition from summer to school year is a transition that regularly causes friction and emotional disregulation for David. Fortunately for David he has had amazing teachers who have taken the time to work with his specific needs and have always worked with us as parents in making sure his emotional and academic needs are met.

This year is unfortunately not the same.  David's teacher this year is much more stand off'ish, has limited contact with us, and does not follow his 504 plan well.  In fact the teacher's way of handling his emotional difficulties when picked on, bullied, or when having difficulties with transitions is to send him into the hall.  Sadly, I was not made aware of this until David came to me crying fearful he would be expelled. When addressed with the concerns, the teacher advised me this is how disruptions were handled in the classroom.  Completely unsatisfied, I contacted the principal who has since talked with the teacher and the ridiculous behavior management technique of sending a child with transition issues into the hall when he is not acting in a way one finds acceptable has stopped.  Unfortunately, we still have little to no contact with the teacher and I have a great deal of concern about David's ability  to be successful in this classroom.  I am hopeful once we have his new 504 meeting we will be able to come to a collective understanding of David's needs and how to best meet them.

Here's hoping things will get better...

 David and Joaquin on the first day of school 
David 4th grade, Joaquin Kindergarten

David first day of 4th grade

Catching Up After a Long Break

I am feel bad since it has been so long since I have updated this blog.  So much has been going on with our family and with David since I last updated this blog.  I was able to attend the Autism One conference in May which was amazing.  It was so interesting and inspiring to hear doctors talk about different treatments and parents talk about the stories of their children improving.  We also participated in the Autism Speaks walk-a-thon in Chicago.  It was wonderful to have our kids participate  in the walk with us and to have David see that he is not the only child dealing with these issues.

End of school has come and gone.  We said goodbye to the third grade, a wonderful third grade teacher, great school support and moved ahead into summer looking forward to fun times at the pool and hanging out.  Like most children on spectrum, David thrives on structure, unfortunately summer does not come with a ton of structure.  My husband and I have thought about saturating David with camps and activities, but at the end of the day so much of our income goes into therapy and medication, there really isn't extra money available for camps and activities to fill the summer.  So summer focused on fun times at the pool, hanging out with friends, karate, and karate camp.


We had fun over the summer going to the beach at Lake Michigan. We even got to meet my best friend from college's amazing little girl Charlotte.  The boys were absolutely smitten with her.  We also spent time as a family taking hikes, hitting balls and playing golf, playing tennis, swimming at the pool, and hanging out at the farm.  The boys love going to our friends' family farm because there is a pool, trampoline, and most importantly they get to ride. Something both boys have come to love.

One of the big accomplishments of the summer included David testing and getting his brown belt in karate.  He and his best buddies at karate will all be testing for their black belts next summer.  I cannot believe how hard he has worked and how well he has done.  David also had a wonderful time at karate camp.  He loved being able to focus on karate and be able to do different activities that they are not always able to focus on in class.

Some hard times in the summer included some increased aggression and frustration which lead to some med changes.  I definitely noticed the lack of structure and all the time with his brother taking its toll on him. Luckily tweaking his meds we definitely saw improvements.  And then it was time to head back to school...


Some Pictures from over the summer



Our Family at the Autism Speak Walk in Chicago
(We were inside Soldier Field for this pic) 


At the beach at Lake Michigan with our friend Charlotte 


Sandmonster David


Sandmonster Joaquin  


 Joaquin hanging at the pool


 David hanging at the pool


 Me and my boys on a family hike



 Brent and the boys with Google on a family hike



 David riding Pinto



 Joaquin riding Pinto



 David riding


 David at the driving range



 David and I at the golfing rang



 David and Mr. Hund after his brown belt exam



 Future black belts... David and his friends after getting their brown belts



 Karate Camp... David is on the right


National Karate (NK) star ( a camp tradition)
David is waving from the top row in the red shorts