Sunday, 19 January 2014

How Nathan Turned My Day Around- An Aricept Update

We all have them- those days when we just know we shouldn’t have gotten out of bed within the first hour of being awake.  Friday morning was like that for me…..

I cut my finger trying to open vacuum sealed coffee (yes, in fact I was very aggressively trying to open it, yes I was in a hurry- coffee is serious business in this house).  Jack had a sore throat and was coughing.  He told us he was “sick”.  This was the first time he had ever done that.  I can’t miss work- not even going to go there.  Plus I had to take Nate to NIH after lunch.  So John had to take one for the team- thanks babe. 

After I got Nate onto the bus, I settled in to work.  About an hour after I sat down my phone rang.  It was the agency that handles FMLA claims for my company.  They were denying both Jack and Nate’s claims.  Ummmm….excuse me???   I asked the reason for this ridiculousness and they told me.  Our amazing pediatrician (no sarcasm) had filled out the paperwork in one business day because it had taken so long to get here and it was due the next day- or the claim would be “denied”.  When she specified that I would need approximately 12hrs/month for each boy, she “specified wrong”.  I don’t know how else to put it.  She needed to say, 3 4hr appts a month instead of just “12 hours”.  They contacted the office once to request the information, they didn’t get it, and so without warning they denied both cases.  What does this mean?  It means I am supposed to start all over again.  I. don’t. think. so.  After having a…how should I put it….hmmm, pointed and somewhat hostile conversation with the supervisor, they opened new cases for each boy but agreed to utilize the forms they already had and only require the changes they had previously requested.  And it was then that my work phone cut out.  Stopped working- they couldn’t hear me.  Awesome.  So I was cut off from “my person”.  We all know what that means when using an automated system.  I rebooted my computer twice and could not get the phone back (it’s through the computer).  I called back on my cell and was lucky enough to get an intelligent person who finished what I had started.  Then I called the pediatrician and explained in detail what was needed.  Then I emailed the instructions to them as well.  Fingers crossed. 

So I was unable to work, and I needed to work because I had to leave at noon.  Very frustrating.  I ran around like a mad woman getting ready to go get Nate off of the bus, but even so, I was running late.  I jumped into the car to go meet Nate’s bus (he gets dropped off at Cisco Center) and realized I forgot his favorite cookies.  OK- well my kid only works for food!  So I backed halfway down the block, ran inside (flying past my bewildered husband) grabbed the goods and I was finally off.  To drive behind someone who drove 18 miles an hour (in a 40) the ENTIRE way to Cisco Center.  This is not a big deal, I realize, but it was a contributing factor to the stress of the day.  I did make it in time, phew, but noticed that my gas tank was empty (ahem, husband who drove the boys last).  I was on a tight deadline and you just never know what the traffic is going to be like on the DC beltway, so I ran to the nearest gas station.  Where my credit card was rejected by two different pumps.  I ran inside to pay and found a group of people talking to the clerk because NONE of the credit card machines were functioning. Awesome- so I ran to another gas station and drove to NIH- I remember thinking I’d better drive pretty carefully because if the beginning of the day was any indication, I was having some pretty bad luck.

Then I looked in my rearview mirror.  I saw the most beautiful little boy just grinning away because mommy had gotten him off the bus.  And it all just melted away.  Nate and I were on a road trip- ok, to a hospital, but still, one on one time is special in any form. 

We got to NIH on time; they were on time and amazingly efficient as always.  We talked about what happened to our family with the memantine study at CNMC and they expressed that they too found this abrupt termination unethical.  They stated that it would be one thing if the drug was unsafe for some reason, but that since that was not the case, they agreed that if a child started they should be able to finish.  They assured me this would not happen to Nathan with the Aricept. 

Most of Friday’s assessments were actually question and answer with me.  It’s really difficult to answer developmental questions about your child after only 3 months, to remember what you said in the past and try to evaluate if there have been changes.  Is he turning his head when I point more or less than he was in October?  Does he react more positively to new people?  Is he noticing other children more or less?  Would any of you be able to definitively give a numerical answer for these fields as compared to three months ago?  It was tough, and as I tried to explain the things that Nate has progressed in, I realized that the team was not going to see this as a miraculous development like I do.  They called his speech “echolalia”
Definition “A” in the dictionary:  The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types of schizophrenia.

Well I prefer to think of it as definition B!
An infant's repetition of the sounds made by others, a normal occurrence in childhood development

No, he’s not an infant, but he is significantly delayed, so I think it applies.  I mean, of course I recognize that many of the new words he is saying are simple repetition at this point.  Don’t care.  He is doing something today that he wasn’t doing before October.  And while, for the research team’s purposes, this is just one little box to check off, for his family it is a miracle.  I expressed this to them and also made sure that they understood that some of his new speech is spontaneous.  I also pointed to the fact that he is associating some words with actions- finally!  Clapping his hands, stomping his feet, rubbing his head.  He could not do this before. 

They were able to observe Nate while we were talking- they commented on his increased eye contact with them.  He rarely made eye contact with “strangers” in the past.  But he made meaningful, even teasing (playing peekaboo) eye contact with both the research assistant and the developmental pediatrician.  This is great because no matter how much of a “good historian” you are as a parent, honestly, they don’t believe it until they see it.  It’s so annoying- I mean why would I say my kid can do things that he can’t?  Luckily he also used some words while we were all sitting there(4 doctors for this- seriously)- I want juice (juice now has a C at the end and everything) and the doctor was like “give that boy his cup!”  When I explained to her that he had finished it all, she sent the research assistant to get more- needless to say, I think she was pretty impressed- she certainly wanted to reward the behavior. 

Once the interview was complete, I was required to have a 15 minute “play session” with Nate in a small room while being videotaped.  I am no stranger to doing this with either of my kids- but I still hate it.  It would be one thing if my son was interested in playing with toys, but that’s always been a challenge.  15 minutes feels like eternity when you are being recorded.  I managed to get him to do a puzzle, and read a book with me; he half-heartedly did the shape sorter.  The activities that really showed his engagement were “itsy bitsy spider”- in which he laughed and said “down” and “again” and then “humpty dumpty”,(the very, ahem, active version so he gets some sensory input), and he said “again”.  Then we did airplane and he said “up”.  Then I chased him while he ran laps for the last 8 minutes.  Still, it’s more than he would have done in the past.  At one point when I asked him to come play he laughed and shook his head no- even this is an improvement as in the past he would not have responded at all.. 

On the drive home, I had a bit of a laugh at my own expense.  I wanted them to tell me that Nate was improving.  Silly me.  How the heck do they know?  They know if I tell them so.  Why did I think I needed someone else to tell me what I already know?  I do really want to see how he would score on the ADOS (autism diagnostic observation schedule) and the Denver developmental assessment tools- these will be done in April along with another sleep study.  But I know in my heart (and frankly in my head) that Nate is showing improvements.  I don’t know the why.  The team told me that based on their hypothesis (whoopity do) they would not expect to see any changes at this point.  This is based on what they are looking at.  They are trying to make my child dream and show that this impacts his development over time.  I am down with that.  But there is this too:

Recent studies in autistic brain samples have shown diminished acetylcholine and nicotinic receptor activity. We hypothesized that acetylcholinergic enhancement may pharmacologically improve some autistic characteristics. Donepezil hydrochloride, an acetylcholinesterase inhibitor, was studied previously in two open label studies which showed improvement in the expressive and receptive speech and aberrant behaviors of autistic children. We therefore undertook a double-blind placebo controlled study to confirm these findings. Forty-three patients (35 males, 8 females, average age 6.8 yrs., range 2.1-10.3 yrs), with diagnoses of Autistic Spectrum Disorders enrolled in a randomized six-week, double-blind, placebo-controlled trial of donepezil hydrochloride, with an additional six weeks of open-label treatment. Change was evaluated by the Childhood Autistic Rating Scale, Gardner's Expressive One-Word Picture Vocabulary Test, Revised, and Gardner's Receptive One-Word Picture Vocabulary Test. Testing was administered at baseline, six-week, and twelve-week follow-up. Expressive and receptive speech gains, as well as decreases in severity of overall autistic behavior, were documented after 6-weeks for the treatment group. These improvements were statistically significant when compared to placebo, and were clinically meaningful as assessed over time. Donepezil hydrochloride appears to improve expressive and receptive language as well as overall autistic features, consistent with the hypothesis of acetylcholinergic enhancement

Hey, it’s a win win right?  They get their dreams and Nate gets his speech.  Works for me.  In the meantime, we have increased other interventions both at school and at Cisco; he has been on the mitochondrial cocktail for quite a while now; he had antifungal treatment when he was on antibiotics.  All of these are likely contributing factors to any successes we are seeing.  It’s hard to know.  Frankly the only reason that I care about what is causing the improvement is because I want to make sure we continue whatever it is.  Overall, I am just incredibly grateful.  The aggravations of the morning were long gone….all of the work we have put in, we are finally seeing some progress- there is nothing more important than that.  Now that’s enough to turn a girl’s day around, don’t you think?


  1. Hi Jenny,
    I am a father of an ASD boy whose diagnosis was confirmed about one year ago.
    I understand that you are a nurse and very involved in the potential treatments for your boys, by taking part in clinical trials.
    My son is middle-functional. My son has been taking ABA lesions but the progress is slow, not without progress, but slow.
    I do not believe much in nutrient, supplement etc. What I wonder is that whether some drug interventions will be indeed useful treatment for sub-groups of kids.
    We can note recently about Arbaclofen, and Bumetanide. There had been talking about low-dose naltrexone, Piracetam, etc. Strict clinical trials have been mostly negative, but on the web there are some talking about quite positive results individually. We know that ASD is a catchall term, and children will have very different biological causes, and the extents of damage are also very different.
    Whether we, as parent, should try these medicines such as low-dose naltrexone, Piracetam, baclofen etc. I am doctor and can have access to these medicines, and I know they are safe. Maybe one of these will work very well for the sub-group of our kids.
    I do not mean cure, and some significant improvement.
    Jenny, what is your thought or experience of this? By the way, baclofen is not popularly tried by parents?

  2. Like this study show negative results. However, your boy is improving.

    J Child Adolesc Psychopharmacol. 2011 Feb;21(1):43-50. doi: 10.1089/cap.2010.0024.
    Safety and efficacy of donepezil in children and adolescents with autism: neuropsychological measures.
    Thirty-four children and adolescents with ASD (age range 8-17 years; IQ >75) were enrolled in a 10-week, double-blind, placebo-controlled trial of donepezil (doses of 5 and 10 mg), followed by a 10-week open label trial for placebo nonresponders.
    RESULTS: The effect of donepezil treatment on EF was examined. Despite improvement on a number of EF measures, no statistically significant between-group differences were found (with gains observed for both the placebo and donepezil groups).