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