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
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