Parents of ADHD Children
ADHD Double Blind Trial??
Has ANYONE had to go through a Double Blind Trial?
Here’s some background:
My ds (8) is in 2nd grade. At the start of kindergarten I realized that he wasn’t sleeping at night. I put a deer camera in his room and recorded him for about 2 weeks. He was moving non stop all night long and sitting up quite a bit…sometimes it looked like he was awake and some he was still sleeping…like sleep walking just never leaving his bed. We started seeing a pediatric neurologist, had a sleep study done that came back perfect..nothing wrong with him. Neuro was shocked at the footage we took her. He was put on imipramine for quite some time until he developed side effects that caused me to pull him from it. No meds at all during the last quarter of 1st grade and his teacher started reporting behavior issues. Saw our pediatrician, who sent us to an ADHD specialist, results came back “on the fence” so he said to continue working with the neurologist. She then put ds on gabapentin and did a 2nd sleep study which also came back perfectly normal. She had no reason or diagnosis other than that I reported he was waking rested even though he was still moving all night long.
Fast forward to 2nd grade…1st qtr was good. 2nd quarter his behavior marks weren’t very good. Started getting reports daily from teacher. Refusing to do work, throwing tantrums in class, disruptive and disrespectful towards classmates and teachers. Seemed very depressed. 3rd qtr was even worse. We removed the gabapentin.and we saw the neuro again and she had us do a re-eval for ADHD which came back as yes, he qualifies so let’s do this trial. At this point, I was reaching for ANYTHING AND EVERYTHING to find out what could be causing issues with him…I had to at least rule out ADHD if not to diagnose him. It was to the point I was looking to pull him from school and homeschool but it was too late in the year I was told, so I sat in his class a few times…just so that the behavior wouldn’t happen and the class could have some uninterrupted learning.
The neuro had us start this DOUBLE BLIND TRIAL. Meaning, no one except pharmacy would know what week was a real rx and what week was a sugar pill. and we’d do this for 4 weeks and at the end of each week, we’d report back (the teacher, ds, and myself each had our own report). One week would be concerta 18mg, One week would be concerta 36mg and 2 weeks would be a placebo.
Week 1…my son LOVED LIFE LOVED HIMSELF and LOVED SCHOOL. He was such a happy child. He actually had AWESOME marks from the teacher’s daily behavior plan that we had to start him on before the trial. The SAME math test that he’s been stuck on since the start of 3rd qtr which WHEN he chose to do the test, he was lucky if he got a 12 out of 50….but on the Week one pill from the study, he got a 46/50 and was so proud and a few days later told me he couldn’t WAIT to take it again because he KNEW he was going to pass it!! He was even waking rested and movements were less…not a lot less..but enough to make a difference in how he wakes up.
This week was week 2 and we are right back to where we were before starting the trial. He told me he wants to feel like he did when he took the pill before (meaning week 1).
Now mind you…all the pills look the same…we don’t know what week is what. This week has gotten progressively worse…so today I skipped and gave him a week 4 pill just to see if there was a difference from the week 2 pill. (and there is…he’s so happy and co-operative today..good report from school and NO I didn’t tell anyone that I skipped and gave a week 4 pill)
So today I called the neuro and asked to be taken off the trial and told them all of what has been happening. The assistant told me in a round about way so that “I wouldn’t know” that week 1 was not a medication. She said she had to word it so that she wasn’t telling me it wasn’t a med but so that I would know. Then she said that they alternated weeks. So I asked"so then you are telling me that week 1 wasn’t a med which means week 2 is a med?” she said yes.
Now, here’s the kicker…the day after easter…the day after indulging in sugar…he had an awesome day at school. They are refusing to pull us from the trial. I argued that it’s not fair to my child to hate his life, himself, school, everything for another whole week. If the placebo is just a sugar pill…and monday after indulging in sugar was a good day…what is going on?? His appetite is decreased this week..noticeably.
I asked if there was anyway they made a mistake in writing down what was what week. She said no, she double checked everything :(
I’m at a complete loss. I made an appt with our pediatrician for next week to get his input and maybe a point in another direction. HEEEELLLLLP!!!
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