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Friday, May 9, 2014

Our Experience With The MRT Study

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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