As anyone who follows this blog probably knows, we entered Naomi in a study for MRT - Magnetic Resonance Technology. I've been interested in this since I saw John Elder Robison participate in a study on TMS Transcranial Magnetic Stimulation - a kissing cousin to MRT - in 2008. When this oppotunity came up, we took it. We've been in the Atlanta area for the study and we just got back. This is our summary of the experience.
Naomi finished her 10 week MRT trial a week ago. I am having a hard time writing about
it. Throughout the 10 weeks I thought of
a few things I wanted to write, but I wanted to try to keep from judging
anything until we were done. I also
didn't have any writing time since Naomi wasn't in school.
The study started off with an EEG. It was a little tough to get Naomi to agree
to wear the “hat” for the EEG and then close her eyes and relax as they
recorded her brain waves, but we got it done!
We went through different questionnaires with the doctors and did blood
and urine tests on Naomi. Once the EEG
was assessed the treatment plan was set up, Naomi started getting MRT treatments. As far as I could tell it was pretty simple.
They set the intensity and frequency of the coil, and identified a position on
Naomi’s head for placement. The computer
was set so that every 60 seconds there was a chime to alert the technician that
the coil needed to be in place. “Head
up, Naomi,” The tech would usually say, just before bringing the coil to her
head. Then for 6 seconds there was a
clicking sound after which we could rest for another minute before starting the
process over again. The sessions were 30
minutes long and we did them every day except Sunday.
The doctors told me to make sure she got an hour of natural
light exposure every morning before 9am.
Even on days when it was raining they said we should just go out on the
porch. The reason was that natural light
would help Naomi make melatonin 12 hours later and thus help improve her
sleep. I quickly found out that I had
been naively optimistic about the weather in Atlanta, especially the weather
before 9am. Because of the elevation,
nights and mornings were cold, and I hadn’t brought hats and gloves. We went
out every morning, but not always for an hour. It was just too cold. In spite of following
directions, Naomi still wasn't sleeping well and often got up in the middle of
the night. At home we are a late to bed,
late to rise family. Naomi goes to
school late, so it works well this way.
Our new schedule was bed around 9:00pm. It usually resulted in Naomi waking up in the middle of the
night for 2-3 hours and then falling
back to sleep until around 6:00am. This was
not working for either of us. Over
time, I let her sleep later and we relaxed the doctor’s rules, We went out
every morning, but it usually wasn’t done before 9 am. We went back to our late to bed and late to
rise schedule and her sleep was better.
Naomi was a little resistant to the treatment at first, but
after a couple of days the tech had gained her trust and she became comfortable
with the routine. I was extremely
grateful that she was very good natured that first week and adapted well to settling
into life in suburban Atlanta. I don’t
know how I would have survived that first week otherwise. Very soon after starting treatments I noticed
that Naomi became much cuddlier. She wanted hugs all the time: in the grocery
store, in a parking lot, in the middle of dinner, as she fell asleep and first
thing in the morning. I joked that she
was making up for the last 8 years of avoiding cuddles as much as possible.
In those first 3 weeks, I kept looking for changes, but I
didn’t really see any other than the cuddles.
She was a little calmer – not really different from herself, but just
like herself when were going through a good stage. It was hard to say if it was the treatment,
being in a different place or just plain good luck! Overall, I was guessing we were part of the
placebo group. (There were 2 groups that
lasted 10 weeks. One would get a placebo
for the first 5 weeks, and then treatment for the second 5 weeks. The other group would get treatment for the
full 10 weeks.) Then there was an error
in the treatment and Naomi, of all people, was able to identify it. “Turn it around!” she said referring to the
coil. The tech checked the treatment
plan and got flustered. It was clear
something had to be altered. It was done
quietly and the error was quickly corrected, but this made be believe we were
part of the treatment group. It’s
possible that Naomi had just felt something unusual and was actually asking for
the sham side of the coil, but I doubted it.
We’ll find out in a few months if Naomi and I were right..
In about the 4th week, Naomi’s aggression
increased. It wasn’t particularly awful,
just like Naomi during those not-so-very-good periods. She would usually avoid hitting me and
instead hit the car seat or the furniture or even herself. This was still not ‘good’ but I know when she
is not hitting me she has a little more self-control. I figured that as long as she could keep it
from getting overly violent, we’d be okay.
One day the tech witnessed Naomi
kicking and the kick happened to hit me.
I don’t think that was Naomi’s intent but that’s what happened. The tech consulted the doctor and decided to
decrease the intensity of the treatment. Naomi continued to have the same level
of aggression for a few days in spite of the changes and then things started to
get better. The clinic kept the lower
intensity for a little over a week and then I suggested increasing it up to the
regular level. When they did so, she
seemed to respond relatively well.
Again, she was Naomi, as she is when she is relatively relaxed. There were a few moments of impatience or
anger, but no huge outbursts. She showed
some signs of tightly shutting her eyes or holding her head during the
treatments, but she never complained.
The techs did a few variations in the intensity depending on her
behavior, but overall things went pretty much the same. It was
during this time that we went into the 2nd five weeks – the period
when we knew we were getting treatment.
I still didn’t really notice anything. Transitions? Not really.
Improvement in imitation? I don’t
think so. Visual acuity? Nope.
Language? Nope. Every once in a while I would notice some
little thing and think “Maybe…..” The assessment reviews we did with one of the
doctors really encouraged me to err on the side of seeing progress, but
overall, I really didn’t think so. Even
when Naomi is not getting treatment, we notice mild changes and what I was
seeing didn’t seem to exceed what I had seen in the past. Naomi was still very cuddly, so I hoped that
this one change would continue and I started looking forward to going
home.
So we had a few relatively good, but not noticeably
wonderful weeks. Then around the 8th
week things got crazy. The aggression
started as it had before, outbursts of frustration, crying hitting furniture
etc. Then it got worse- much worse. Huge battles over not changing a DVD quickly
enough, over being told we couldn’t go out for a walk at 11pm or for seemingly
no reason at all. I realized how much
stronger Naomi had become since her last violent outbreak over a year ago and I
realized that I was not able to stop her very easily. It broke my heart, but there were times that
I could not restrain her and I was getting hurt. I had to make her feel pain in order to
disrupt what she was doing long enough to stop her. I was wondering if MRT was doing far more
harm than good. I went into the clinic
that Monday and asked that the intensity be decreased. “Let’s just try one more day.” The tech
said. “There isn’t that much difference
between 52 and 56.” Since there had
never been any hesitation to lower the intensity for much flimsier reasons, I
was shocked that the tech essentially blew me off. Much less intense aggression earlier in the
study was a call for significant decrease in the intensity without me
requesting it. I assume the difference was that we were
dealing with a different tech. I wasn’t prepared for his response, so
although I made it clear that I was disappointed, I didn’t fight it. Still, I was annoyed to say the least.
The next 24 hours were awful. More of the same. More aggression, more violence. None of it made sense. “I want to intensity decreased and if you
don’t do it, we’re quitting the study and going home!!“ I told the tech the next day. We
were seeing a different tech this time and she quickly complied. She seemed to be a little surprised that the
last tech hadn’t even consulted the doctor.
I hoped this would make the difference, although I feared it would not.
That afternoon, I took Naomi swimming. We spent about 2 hours there, had a snack in
the lounge and started heading off to Kroger as our evening ritual
dictates. “DRIVE THIS WAY!! SWIMMING!!!
SWIMMING!!!!!” She was freaking out,
kicking the seat, screaming crying, trying to open the car door – thank God for
safety locks. She was trying to get to me but unable to control her movements
well enough to take her seatbelt off. It
was as if she had completely forgotten that we had just been at the pool. Telling her the pool was closed and we had
already gone swimming was not helping. The meltdown lasted for another half
hour after we got to the Kroger parking lot.
At the end she said “I’m all done.”
I wrote the doctor an email that night and she responded
quickly. Treatments would be
suspended. We would have an EEG the next
day and there was a possibility that we would have to quit the study. We went ahead with the treatment and the
doctor in California assessed it. When I
spoke to him I was in an active waiting room and on a cell phone, so I wasn’t
able to follow it 100%, but what I gathered was that there were no alpha waves
on the left side of Naomi’s brain. He
said that her reaction was very rare, (the number 1 in 2000 comes to mind, but
I’m not sure that is correct.) He said it happens sometimes in adults with a
result of depression, but in children it is more likely to make them
hyperactive. We reviewed the need for
light exposure in the morning, Naomi’s diet, her recreational activities and in
the end he told me they would be altering her MRT treatment. The position, the
intensity and the frequency would all be different. The next day we did the new treatment and I
noticed a change. It was mild, but I
called Stephen and told him that we had turned the page and I was
relieved. Then I gave her a
medication. (I write about the med in a
later paragraph.) Everything went crazy
again. The outburst was bad. It was about an hour and a quarter long. The next morning, we had more of the
same.
I saw the doctor the next day and we stopped the med. We
went back to getting the new MRT treatment and things got better. I was grateful, but warn down. I just wanted this to end and to go
home. I would even say I was mildly
disappointed that we weren’t let go from the study. Another side of me was hopeful that the week
of treatments we had left would make staying worthwhile.
With 5 days left Naomi got an intestinal bug. It started as a fever. “Owie on your head. Owie on your tummy.” I figured it was general malaise. I didn’t consider the stomach bug. About 3am I found out it was more than
malaise. She was throwing up. We had no
washing machine in our apartment and a lot of cleaning up to do. Naomi seemed better in the morning, but I phoned
the clinic to tell them what was going on.
“We can make up for the time over the week end. Why don’t you stay home today?” I didn’t want to have to delay the end of this by any time at all. I wanted to get done and go home. So we went to the appointment. After a long wait in the waiting room they told me they would have to take Naomi’s temperature before proceeding and they would have to get one from the other clinic. So we waited some more. The whole time I was thinking “I am probably going to get this stomach bug next, I have no one in town to help me and I haven’t got the laundry done!! I’ve got not time to wait. Hurry up! “ Naomi’s temperature was normal and she got the treatment . Luckily, I didn’t get the bug and Naomi wasn’t sick again. Small mercies. Naomi was calmer, but it was hard for me to know if it was just part of the lethargy and exhaustion that comes after one has been sick, or if she was emotionally better. “Owie on my bum!” She frequently said over the next few days. I thought this meant that diarrhea was coming, but it never did. More small mercies. The ‘owie’ slowly went away. I was counting the minutes before we could head home.
On our last day Stephen flew in to town to help us pack and
drive home. I asked him if he noticed
any change. “Not really,” he said,
confirming what I thought. A few hours
later he said “I haven’t seen her make an angry face.”
It was true. With the
illness and counting the minutes to go home I hadn’t noticed, but her tendency
to get angry and lose patience over small things had significantly diminished
over the past few days. Unfortunately,
there were only 8 days of MRT treatment left when the position and frequency
were altered, but I think those 8 days made a difference. We were happy about this because Naomi’s
emotional issues are the most difficult to deal with. Naomi was less cuddly after the treatment
procedure changed too. At first, I
assumed this was because of her illness, but when she got better and the cuddly
nature did not return, I reconsidered it.
Maybe it was due to the MRT treatment changes.
Our trip home was uneventful and Naomi adjusted well. She asked for her doll house upon returning. She hadn’t played with it in years and I
didn’t know where it was. When I told
her I’d look but maybe it was gone, she gave me a very sad and disappointed
look. No anger, no growling, no hitting
the wall or yelling “DOLL HOUSE!” Just a
sad look. This was a definite
change. This wouldn’t have happened
before MRT. (I found the doll house 5
minutes later amidst our numerous boxes of clutter so this story had a happy
ending.)
The next few days were also good. Stephan and I would often look at each other
with a knowing look that said “Wow, she stayed calm though that.” “Hey, she
didn’t get angry!” But this period of
peace was short lived. About 5 days
after we got home signs of anger and impatience showed up again. Every day there was a little more until we
were back to where we started before MRT.
Her teachers at school have avoided answering the “Do you
notice any difference?” question. My
guess is that they don’t want to disappoint us by saying “No.” Mainly they have commented that she has gotten
back into the routine of school well and her academic performance hasn’t
regressed. Good things, but not the
reason for perusing MRT.
Yeast is a very big part of this story and I don’t know
where nor how it fits into Naomi’s experience. A urine test was done at the
beginning of the study. I knew she had
yeast, but I didn’t know how bad it was.
It was really bad. Like 10 times
the healthy limits bad. We started on Nystatin.
After a couple of weeks, I really didn’t think it was working since she
had even more of the thick, frothy saliva that tells me the yeast much more
pervasive than it should be. So I put
her on some herbs. They helped, but not
much. Then we started Diflucan. Honestly, I still noticed that thick, frothy
saliva was increasingly present. It was
around her 2nd week of Diflucan that she started to get very
aggressive and I contacted the doctor.
There is still some question as to whether the treatment, the Diflucan
or some combination with bad luck thrown in were the cause in this negative
behavior change, but I guess we’ll never know.
The treatment for the MRT was changed, we stopped the Diflucan and Naomi
was getting better. That was good
enough. We are still fighting yeast.
So in the end… I don’t know.
I think this is why I’ve put off writing about it. Obviously, the results were mild, temporary,
and not what we had hoped for. Yet, if
by some miracle we are told that we were in the placebo group and therefore
entitled to an additional 5 weeks of treatment, I’d be there. I
still have hope for MRT. Maybe we are
just a link in the chain that helps make changes so this becomes more effective.
I usually hate the phrase “At least you tried,” but this time that’s what I’m
saying. “At least we tried,” and for
whatever reason, I’m glad we did.
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