Infantile Spasms

Danielle was admitted to Inova Fairfax Hospital yesterday morning for something that is completely unrelated to her heart.  She started having movements that I immediately recognized as Infantile Spasms (a seizure disorder.)  I knew that’s what I was seeing but hoped that the spasms where benign.   It was around 3pm yesterday that she was hooked up to an EEG (like an EKG, except this test measures brain activity.)  A technician glued 21 electrodes to hear little head.   He said before he started that the process wasn’t going to be painful but that she would likely cry because it would be “annoying” for her.  That guy is a liar.  She screamed for 30 minutes while he scraped awful smelling glue on to her head with a q-tip, firmly pressed and electrode on to her head, and then hurryingly glued gauze over the electrode.  21 times she had to endure this process that I know was painful for her (a mother knows her child’s cries; she’s not lost her voice from screaming because she was annoyed.)  The process was made even more grueling by a lack of professionalism.  The leads from the EEG where all tangled in a nest of wire, so after each electrode was placed, the tech had to search for the next electrode in this mess and untangle it before it could be placed.  I REALLY don’t like that guy.  If I didn’t have more self control, I might pin him down and give him a taste of his own medicine.  I know it’s not fair to be angry with him, but it did seem to help to have someone to pin my frustration on.  Poor guy has a tough job… probably doesn’t make many friends around here.   

Danielle had a few episodes while being monitored by the EEG.  The neurologist called me from home after reviewing the report and said it is infantile spasms.  I feared this news and hoped it wasn’t true, but I knew that’s what I was seeing, I just knew.  My poor baby didn’t do anything to deserve this.   I wish I could go back to two weeks ago when my biggest concern was the timing of her surgery to repair her heart.  The good news is that we caught it early.  Forgive me for saying, but Danielle is blessed to have a very insistent mommy.  One of the residents here says I'm a great diagnostician and asked if I had a medical background.  Haha, no, but mommas intuition is unparalleled.  Children with Down syndrome typically respond much better to treatment for Infantile Spasms, which is also a bit comforting to know.   I’m waiting for her to come out of her MRI now.  They want to make sure there is nothing going on (other than a chromosomal abnormality) that could be causing these seizures.  I should be talking to the neurologist today about medications that are used to treat this and I’m hoping to get some more input from her Cardiologist too… I’ll insist on it, actually ;-).  I think the plan for now is to get a handle on this before we make any plans for open heart surgery.  This totally sucks but we’re taking it one step at a time.

Aside from the EEG tech who ran out of my room, accidentally leaving some of his equipment behind, after his encounter with a momma bear, everyone has been really great.  Many of the staff members here recognized Danielle’s name when we were admitted (she has been on their calendar three times now,) and they are making sure to take good care of our special girl.

The messages of thoughts and prayers keep coming, and we are so grateful for the support.  THANK YOU!