Evan's Story - Part One of many

Evan was born March 10, 2003 at a local community hospital.  I had a rather uneventful pregnancy, aside from no appetite.  During my pregnancy I lost 50 or 60 lbs, though I really needed to since I was very heavy.  Evan was considered a high risk pregnancy since his older sister was born with a heart defect (PDA - Patent Ductus Arteriosis).  He was monitored and got all the advanced scans and tests, but was given the thumbs up all the way through.  I did notice that he didn't move nearly as much as his sister had when I was pregnant with her, but I just assumed that she was perhaps a feisty one (which is very true).  Evan was induced 2 weeks early due to size.  His older sister had been quite large and thankfully the OB decided to spare me the grief of birthing a baby that large again!  So at 4:16pm that afternoon, Evan was birthed naturally and with no complications, though the OB literally barely showed up in time to catch him!

Immediately it was obvious something was amiss.  Evan was covered from head to toe in tiny blisters or pustules and he looked, well...just odd.  His skin was unusually loose.  He had 2 skin tags around his right ear. He also had a really big forehead and huge floppy ears. The nurses handed him to me for a moment to hold and took him for examination shortly thereafter while I got some post birthing care.  Afterwards however, I didn't get him back immediately after I asked for him, the nurses kept stalling.  Eventually I got up and walked around to the nursery and saw him in the incubator.  Eventually I found out that he had been witnessed having a suspected seizure and was going to be transported to New Hanover Regional Medical Center to the NICU.  I was devastated.  Here I was again faced with the unfortunate fact of not being able to take my baby home after being released.  Evan was transported that evening to NHRMC and I was not able to go with him because I was not able to be released until 5am the next morning.  The attending pediatrician told me that she suspected some particular genetic defect, though I cannot recall which.  Of course it did not turn out to be a correct suspicion.  His tiny pustules were diagnosed as pustular melanosis.  Very odd.  Very odd indeed.

5am March 11, 2007 I hit the ground running to NHRMC to see my baby.  He was in NICU for 4 days.  While there, he had 2 MRIs and an EEG.  The MRI showed that he had a brain hemmorage and his EEG showed that his brain waves were abnormal.  Initial genetics testing was inconclusive, though the doctors agreed something was going on.  They also found that he had a very deep sacral dimple at the base of his spine.  MRI on his spine however showed that it was closed thankfully.  We spent 2 days in the Pediatrics unit for observation and then we were allowed to go home.  I remember being so very angry that we were being kept and all these tests were inconclusive.  I just wanted to take Evan home because I kept insisting NOTHING WAS WRONG.  Just leave us alone...

Evan was put on Enfamil AR because he had terrible reflux.  Evan would not breastfeed either, not matter how hard I tried to get him to.  In fact, he didn't want to be held.  He would cry until I put him down often times, even for feeding.  Just prop up a bottle and he was fine.  Less than 2 weeks after I brought him home however, he has a reflux episode that was so bad, he aspirated on the formula and I had to call 911 because he had completely filled his lungs and could not breathe.  Thankfully I lived VERY close to the hospital, or the poor fellow would have been totally lost to us.  As it was by the time the ambulance met me with him, he was completely unresponsive.  I'm sure that did not help much at all.  We were transferred to Pitt Memorial to make sure Evan didn't develop infection in his lungs.  We stayed there a week or so before being released.

Evan always had feeding problems.  When it came time for solid food, he would choke on it.  I had to take him for a barium swallow test, and all I was told was that it showed he had an infantile swallow reflex.  The fix for that was to give him "finger foods".  That worked out pretty well and eventually he tolerated solid foods pretty well.


Of course from here, we're seeing a neurologist and genetics.  The neurologist is focusing on the brain hemmorage of course and that's all I've been asking about because I don't know any better.  I've been going on what I've been told verbally.  Basically however, I'm being told that genetics tests aren't showing anything yet, but to check back later since tests get better all the time.  The neurologist has me come in for follow up appts at certain intervals, but basically at that point, we didn't know what all that had happened to him would mean.  And from what I remember at that point, Evan seemed rather normal.  Evan however, was a very floppy baby.  He had almost no muscle tone.  On the other hand, I am not sure if I'd have allowed myself to see anything otherwise.  I was in much stubborn denial at that point.  I didn't want anything to be wrong with my child.  I tied strings around the skin tags on his ears so that they just fell off.  I treated him like a normal child. 

However, it seemed after the first year, things seemed to unravel.  I remember Evan cruising holding on to furniture before he turned a year old and thinking he would be walking any time now.   It wasn't until he was 19 months old and not walking that I finally had to admit that he needed help.  From what I recall, Evan even had said a few words at some point and then it dried up.  Somehow after 12 or 13 months, I lost the normal baby I remembered.  Or I just opened my eyes, I'm not quite sure which it was honestly.  Evan fit the criteria for autism and I had him evaluated.  He was rated as severly autistic at that point.  He was very aggressive, slept very little, completely non verbal and most of the time didn't even seem to be aware of his surroundings.  He injured himself by beating his head.  I remember he used to love running kamikaze into my big screen TV and just smacking into it.  He had severe sensory issues.  He of course was very developmentally delayed.  Needless to say, I was crushed.  This is a very difficult thing to accept.  I remember sitting in the parking lot after the appointment and crying at my steering wheel for what seemed like forever.  How could this happen to me?  It was almost like mourning the death of a child...or at least the idea or projection of the child.  I accepted whatever help I was offered however, since I was convinced that early intervention would help Evan and he would "grow out of it".

Evan began to get therapy at home.  Speech therapy, occupational therapy, so many I forget at this point.  I talked to Evan incessantly though he didn't talk to me.  To this day I could hold a full 2 sided conversation with a wall.  I learned that talking to Evan in a high pitched sing songy voice was the only way he even seemed to even notice anyone was even talking at all.  Evan never did any pretend play and to this day does very very little.   Around the age of 2 Evan began having crying jags where he would just cry for no apparent reason for days.  Afterwards however he would seem to be a bit more advanced than before.  It's my opinion that he was having headaches and they were caused by his brain healing and neurons/synapses reconnecting.

Evan finally learned how to say single words with a very small vocabulary around the age of 3.  This was also around the time that he aged out of the Early Intervention program and was put into the Pre-K program at public school that had just been started.  Evan was also released from the neurologist at this time.  He had an MRI around this time and the neurologist told me that the hemmorage had resolved and no new ones had occurred.  He also explained to me that Evan's rate of developmental progress would be consistent as it was then.  So basically with Evan, take his physical age and anywhere from 1/3 - 1/2 of that will be his developmental age.  At that time I was hopeful that Evan would still "grow out of it".  However, the 1/2 - 1/3 formula has been pretty consistent even to this day as different abilities are at different levels. 

At the age of 4, Evan was talking a bit better, though his aggression and anxiety was still awful.  I couldn't take him into the grocery store without him beating his head on the grocery cart.  Life was rough.  We couldn't sing around him without setting him off.  Certain music would set him off.  There was a list a mile long that would set him off.  I was exhausted and I am sure he was too.  I started taking him to a pediatrician that dealt more with kids like Evan, though more often with ADHD.  Evan was put on clonidine patches to calm him down.  However, Evan is super flexible and that didn't work very well since he was constantly pulling them off.  The clonidine was nice otherwise since Evan was for once much calmer.  Evan was switched to Risperdal in liquid form, which is frequently prescribed to autistic children to calm them.  Life was MUCH better then.  Evan was much calmer and then talking better too. He FINALLY potty trained at 4 as well, which I was very thankful for since diapers are hard to come by for kids this size.  One unfortunate side effect was appetite, but at first that wasn't a bad thing since Evan never had eaten much before.  Eventually of course, he got kind of chubby, especially with family coddling him.  But what can you do?  You do what you can to keep the boy happy is what you do!

Age 5 and he starts Kindergarten.  That's right, I put him into mainstream Kindergarten.  The summer before I had put him on ADHD meds and that had also given him some pretty good improvement.  In fact, after that he started talking in sentences.  With the Pre-K he had received for those 2 years in public school and the fact I had kept him mainstreamed, I felt he stood a good chance of doing ok in Kindergarten.  I think he did pretty well considering.  I fought to keep him in regular Kindergarten for a while.  In retrospect, I think I fought for it so hard because I felt like if he was in Kindergarten, then he was ok, cut and dry.  Midyear however, I finally had to accept the cold hard truth yet again.  He was floundering of course and his Kindergarten teacher simply did not have the resources to give him the one-on-one attention he desparately needed.  He was put in EC for a few hours a day at first and over time it became more and more. 

Now he is 6 and was promoted to 1st grade this year.  He actually does math on a Kindergarten level and can hold a very simple conversation with you.  He can read a few words.  I have even witnessed him doing some light pretend play every now and then.  He talks a lot in movie script lines and TV show/cartoon script lines. He's very loud and self unaware.  I still have to tie his shoes and help him in the bathroom with wiping.  He's also very angry and volatile at home.  At school he does well, partially due to the structure, partially due to the fact that his meds are working at that point.  By the time he gets home, the meds have worn off.  He's also very obsessive with things.  He plays video games all the time.  He watches certain movies over and over, skipping to his favorite parts and reciting the lines all the way through.  Evan is a tall blonde elfish looking fellow, very sweet, but very anxious and tormented.  I WILL get to the bottom of this and help him.

Medically, I have recently discovered on my own MUCH more than was ever revealed to me to the puzzle that is Evan.  I will post this next.