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!

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!

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.