Autism Therapy: Namenda (memantine hydrochloride)

            I see that summer is just a slower time of year for family “news,” as I read my last blog which was over a month ago.  Since it’s back-to-school time, I expect to have a lot more to say in the coming weeks and months.

            The only big thing that’s happened with Thomas recently was the EEG last Thursday.  The prep wasn’t nearly as difficult for Thomas as it was for me and Jonathan.  And no, the whole family wasn’t up at 1:30 a.m. – Hayley actually slept through until 6:30 a.m., despite Thomas’ gleeful shrieking over the paper airplane Jonathan made.  We had it all planned out:  I would take the first three-hour shift, and Jonathan would take the next.  I’d be up with Thomas from 1:30 a.m. to 4:30 a.m. and then get to sleep.  I woke at the specified time and Thomas woke up pretty well.  Unfortunately for Mr. Second-Shift, Thomas wanted Daddy to get up with him.  Ha!  I was already awake and pumped for middle-of-the-night play activities, so we both just stuck out the whole night.  Thomas was a little confused, but I had drawn pictures for him on Wednesday depicting the whole gruesome affair.

            Patrice came at 9:00 a.m. to take care of Hayley while we were at the hospital, so we left.  I sat in back with Thomas who was then catching his second wind and did a better job of keeping me awake than I did of keeping him awake.  He was really jacked-up by the time we got into the EEG room, and I thought that there was absolutely no way that we were going to get him to sleep.  The nurse who took us through the procedure was very nice and personable and did a good job of distracting Thomas while she gooped Silly Putty-like stuff on his head and stuck the leads (twenty in all!) to him.  Jonathan was in the bed with Thomas (at Thomas’ request; that day was all about Daddy…he wanted nothing to do with me for a change), and I dozed in a rocking chair.  Really, Jonathan and I would have performed splendidly ourselves had we been the patients.  Thomas seemed like he was close to sleep as the nurse finished the sticky part, but as soon as she dimmed the lights and left, Thomas started whining and poking at the wires which were undoubtedly uncomfortable and it took him about forty-five minutes to actually fall asleep.  Before he did, though, the nurse had him look at the strobe light to see if that triggered anything.

            Once Thomas fell asleep, the EEG only took an additional fifteen minutes.  We woke him up and he cried nonstop after that while the leads came off and the nurse shampooed his hair.  He cried until we got into the elevator at which time he turned off the waterworks and was his normal self again.  He actually stayed awake the whole way home and for the rest of the day, though he had this funny look on his face on the ride home.  His eyes were wide open and his brow was furrowed – he looked like an adult going on very little sleep!  It was kind of funny.  Everyone slept very well that night!

            I’m still waiting to hear from the neurologist who should give us a call tomorrow or Tuesday to discuss the results.  If Thomas does not have epilepsy, then I’m going to have a serious chat with the doctor about what results we could expect from this sleep study she’ll prescribe.  If there is a strong likelihood that we will learn nothing from a sleep study, that we will have no more answers after the test than we did before it, then I’m not so sure I’m going to take Thomas down that path.  I’m certain that this doctor has ideas about what a sleep study could reveal, but I’m going to want her to spell those ideas out very clearly to me before we go ahead.  If she’s being rather vague and unclear about what a sleep study could tell us then I’m going to say, “You’re being rather vague and unclear about what a sleep study could tell us.  Please explain again why this test is worth the preparation, time and money.”  Because she has been so wishy-washy about the whole Namenda/Memantine thing, I’m thinking that she’s one of these doctors who doesn’t really care to go into a whole lot of explanation about her motives.  Unfortunately for her and other medical professionals, I’ve become the sort of person who demands a sensible and coherent explanation.  Either way, I guess we’ll continue to do what we gotta do.  I just hope we don’t gotta do the sleep study.

            Jonathan and I were discussing how much Thomas has improved over the summer.  He’s doing a lot better with transitions, and even his temper tantrums have gotten less horrible.  The bad ones are still really bad, but they’re fewer and farther between than before.  I’ve been taking the kids to the zoo by myself lately, and there’s a merry-go-round there.  It has all different animals on it (even cicadas!), but no horses.  Anyway, the first time I took them (by myself) Thomas wanted to ride the carousel.  I bought tickets and we got in line; we rode and then it was time to get off.  Only Thomas didn’t want to.  I ended up dragging him away, but instead of hitting me and screaming, he just sat on a bench and cried.  It was the best!  We just sat there and waited for him to feel better, and when he did we continued with our day.  It was great!  Plenty of kids get over-stimulated and end up crying at the zoo!  Nobody was staring at me because my son was abusing me and I was just taking it!  Nobody was looking on while Thomas slapped my face and hit his head and spat at me!  Just crying…in the words of Homer Simpson, “Woo-hoo!”

            We’ve been mentioning school more and more lately, and while Thomas would get upset as recently as a couple weeks ago at the mere mention of teachers and busses, he now is pleased to say that yes, he would like to ride the bus again and yes, he would like to go to school again.  Huzzah!  Everything is falling into place.  I am eagerly awaiting a call from Thomas’ teacher to schedule a home visit.  I just wish that this could happen sooner in the summer than late August.  When the teacher comes to call, she has a list of supplies she’d like parents to purchase for the school year, but by the time I get this list, the stores have been cleaned out of markers, glue sticks, folders, tape and most other items on the list.  I ended up going to a scrapbook store last year for the glue sticks and I think they weren’t the right ones anyway.  And there’s no pre-prepared list sent by the school; every teacher has different requirements.  At least the Superman backpack from last year is in good enough condition for use this year.

            We have something exciting to look forward to in my family over the coming months:  My youngest sister has recently become engaged to her boyfriend of seven years, and we are all just thrilled!  I’m really excited because this is the promise, albeit far-away, of a get-dressed-up (even if it is in a bridesmaid’s dress) and-ditch-the-kids-for-the-weekend kind of affair.  Luckily, my sister has decided that there will be no ring-bearer or flower girl, so Thomas and Hayley will be spending the day doing something else.  We’ll show them plenty of pictures after.  I wonder who the lucky party will be that gets to watch Thomas and Hayley?  We have plenty of time to riddle that one out!