Tuesday, July 15, 2008

Third time a charm?

We are back again.  Drew was discharged on June 28 (it just occurred to me that we were discharged the first time on May 28 - what's up with 28?) and did great at home for the first couple days.  At the doctor's orders we dropped the level of one of his meds on Monday the 30th though and that didn't seem to agree with him.  By Wednesday he was seizing more and his left eye and cheek were also included this time.  He couldn't eat/drink because of this so back we went.  This hospital visit this time was less about tests and more about getting his weight and appetite back up, and about getting the seizures under control.  We would have to admit that the newest addition to the seizures goes well with Drew's charming personality as much as we hated to see it - the way his left eye was going it looked like he was intentionally winking at you, and the left corner of his mouth would twitch up giving him a "cute" little smirk.  (We have learned quickly to look for the bright side of things!)  
On Monday, July 7th we started giving Drew Melatonin to help him sleep.  The seizures have likely inflamed his brain so much that it may be affecting his sleep and appetite according to the doctor.  Others would like to think he just has so much fun playing with us that he thinks he might miss something if he sleeps at night!  (He was awake for over 5 hours two nights in a row! - Mom feels like she has a newborn again!)  It has helped alot and now he's back to almost normal sleep patterns - thank goodness!
On Tuesday the doctor decided we should try him on Prednisone (a steroid) on the (very) off chance that he has an autoimmune disorder.  One of the results of the blood tests came back showing elevated antibodies which could indicate a disorder like that or it could just be the result of the IVIG process they did a couple weeks ago.  The best way to find out is to do a trial of this drug for two weeks.  It is a mixed bag as it will increase his appetite but could also make him more susceptible to illness (do they realize he has a 3 year old brother who dotes on him???).  We are trying not to get our hopes up that it could be this, but if it was at least we would have a treatment option and it wouldn't be so uncommon.  (We have to admit that we have been praying that it will be this.)  He will donate yet some more blood to check this out in August likely, and they may try to do a C-Spine at the same time to confirm one way or the other (if the antibodies are elevated in the blood AND the spinal fluid it would answer whether it is an autoimmune disorder or not).
Thursday was a good day for Drew.  We had a prayer session for him that morning and whether it was that or whether it was a (corresponding?) raise in one of his meds and he liked that or whether he is responding to the steroid we don't know, but we do know he is seizing less and seems more alert.  His twitch that has been constant to this point is less constant, actually giving him moments of reprieve now and his face is not seizing unless he has a more intense seizure (those are coming and going now, lasting for around a minute and involve more body parts that just his arm or leg - these seem to bother him a bit more).  We think the nurses were a bit sad to see the winking and smirking go, but we'll take eating over smirking these days!  

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