It has been a very busy couple of days, to say the least.  Among many other goings-on, we have had two days full of appointments–most of which were for A. 

Monday, we had an evaluation for speech therapy, which was very enlightening.  As it turned out, A passed well within the normal ranges.  His vocabulary was incredible–I didn’t even know he knew that many words.  When identifying photos, if he didn’t know the actual word, he was very good at using other words to explain what the items were.  He followed instructions well, caught on to the exercises quickly, and just overall, really amazed me and the therapist.  That being said, it also became clear that his vocabulary and comprehension were not part of his problems, as I had believed.  Rather, through the eval process, it was easy to see that his problems were in annunciation, transitions, and pulling things from his memory “files.”  I was thrilled, and though the therapist still thought he would benefit from speech therapy, she said we would be OK to do the required therapy exercises with him at home.  I have to go back in a couple weeks to pick up our homework assignments.  She didn’t think it would be difficult to overcome his annunciation problem, but did encourage us to pursue seeking the occupational therapy and getting the results of the EEG. 

Tuesday was also very enlightening, if one of the more difficult days we have had on this journey.  It was the long-awaited EEG test, followed by another appointment with the new neurologist at the children’s hospital.  In case you didn’t know, an EEG, which measures and reads brain waves, is more accurate with a sleep deprived brain.  Therefore, I had to keep A up until midnight the night before, then we went to bed for a few hours, then S had to wake A up at 4 a.m. and entertain him.  Finally, JR, A, and I loaded up just after breakfast to head to Denver.  JR agreed to come along to help keep A awake on the drive.  We spent the entire day in Denver.  After the testing, we had about 2 hours before our follow-up with the neurologist, so we went out to the car where I made a bed of sorts for A to nap.  He did, thankfully, which made him a little more tolerable.  A 3-year-old running on 4 hours of sleep is NOT pleasant, to say the least.  During our follow-up, the new, now permanently assigned, neurologist once again evaluated A from head to toe.  He noticed several issues that the previous neurologist missed (or perhaps A’s neurologic symptoms had worsened–don’t know).  In one instance, he even got to witness one of the many daily falls A experiences, as he fell over backwards, landing in a heap on the floor.  This inspired a bunch of questions from the doctor for me to answer.  Finally, he read the EEG results, and discussed the findings.  To put it simply, A showed some frequent, though mild (as in can’t see any seizure on the outside) seizure activity in the right side of his brain.  He also showed very slow synapse connections and electrical impulses.  In laymen’s theory, this POSSIBLY means that the seizures are not allowing A to sleep well at night, may be contributing to his periodic night terrors and frequent restlessness (although he appears to be sleeping), which in turn, would account for his behaviour in the daytime.  It is also possible they are related to his frequent falls.  The slow connections are likely an explanation of why A can’t find the “files” of his brain, and transition from one task or thought to another with normal speed.  In either case, we still don’t know the cause. 

This EEG was very basic, but it showed enough to confirm I wasn’t imagining things, and that further testing is a necessity.  That being said, the next step in terms of neurology is a 3 day/2 night EEG and sleep study.  A will be monitored for the full time he is in the hospital, through both EEG wires and video cameras.  I will be with him the whole time, but we will not be allowed to leave his room.  In the event the doctor gets the results he needs sooner, then the test may end sooner, but that is the alloted time frame we have to plan for.  He said this test should tell us just how intense and frequent the seizures are, and give us a much better understanding of the reasons behind some of his issues.  This test, combined with further amino acid testing done yesterday, in combination with the upcoming endocrinology appointment and metobolic tests that will be done, should mean that we will have definitive answers and a plan for dealing by summer.  How wonderful that day will be!

As a parent, you never want to wish something is wrong with your child, or that a test result shows something less than perfect.  At the same time, however, when you have struggled for almost 4 years like we have, seen your child regress, plateau, and be delayed, witnessed him struggle through his days–both physically and behaviourally, and your gut has screamed for so long that something is NOT right, it is really quite a relief to finally have a test show something.  Thankfully, everything still seems to be mild, and possibly treatable.  But, this new-found knowledge will help direct us to the proper experts who can teach us how to best deal with A and his issues at this time, and hopefully get him on a good track for future development.

Advertisements