Our NIH and Aricept Journey with Nate

I have had a few people ask me if Nate is ok, so I wanted to post quickly to say YES!  He was in the hospital at NIH last night as part of a study he has been participating in for the past 18 months.  Yesterday was his last of 5 comprehensive appointments (and I do mean comprehensive!!!).  The trial was testing a drug called Aricept, which is traditionally used in Alzheimer’s patients, in children with autism.  One of the commonalities that have been identified in kids with autism is shortened REM cycles during sleep.  It has been proven that in our little ones, lots of brain development occurs during deep sleep.  The hypothesis is that Aricept will help increase the length of the REM cycles (IE the amount of this deep sleep), helping promote brain development, and hopefully leading to increased language/communication. 

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/trials/childrens-studies/the-dreme-study-a-trial-of-donepezil-for-rem-sleep-enhancement-and-improvement-of-asd-core-symptoms.shtml

I was all for this study when we began, and I stand behind my decision to participate.  That being said, what sounds “reasonable” when you are starting can quickly become quite overwhelming.  The study visits were not frequent- approximately every 6 months (except while he was taking the medication, when it was a bit more frequent), however they were extremely intense and had Nate and me leaving feeling like a dish rag that was rung out, crumpled into a ball and hurled down the stairs (not to be dramatic, lol)

Each visit entails about 4 hours of developmental testing- the Mullen Early learning scale, the ADOs, if you are an autism parent you are very familiar with these.  That doesn’t make them any less painful, but you are familiar.  I also sit with the team for a good 2 hours and answer questions (think rating aberrant behaviors, giving a number to measure the progress of his eye contact and answering to his name, etc.).  Then after the kiddo is completely fed up, I am put in a room and told to “play naturally” with him for 15 minutes.  HA!  After that is inpatient registration, admission to the hospital and EEG lead placement.  That is one of the more painful parts, as you have to keep your child still to have MANY electrodes glued to their head and then “blown” dry with puffs of air.  For a child with sensory issues this is NOT an easy task- letting someone hold his head, especially near his ears, hold it still, blow air near his ears, not fun.  The first time we did this with Nate, he was able to stay unrestrained for the full placement.  As we have moved through this process it has become more difficult- could be one of two things- 1- he is wise to our game and isn’t putting up with it, 2- he is more aware of what is going on with his surroundings and more distressed by it.  I tend to think it’s a combination of the two.  In any case, we have used a papoose restraint the last few times.  I made the decision to just put him in it from the get go yesterday- the faster the process goes, the sooner he will be done.  He was actually quite calm.  The research team is incredibly supportive and literally holds your hand through this whole process, and your child’s.  The neurologist has practically stood on her head to get Nate’s iPad at the appropriate angle so he could see it during the lead placement, and she stays the entire time, as do the research assistants- you will see one lounging with Nate below.

After the leads are placed, he has an awake EEG that just measures his regular brain activity.  Then we head downstairs for an hour or two to eat and wait for bedtime.  This is when I am reminded of how blessed we are as a family, as the inpatient pediatric unit at NIH houses children with a multitude of issues, the main commonality is that they are more severe than what we are dealing with.  Yesterday Nate’s nurse was giving another patient a bone marrow transplant (brought back memories of my BMT nursing days!), the patient next to us was 4 and not yet sitting up (and had come from Germany seeking help), and we came face to face with a small child with gray hair and wrinkles (and in a wheelchair).  Sometimes, we all need to see and hear about people dealing with these difficult and life threatening issues to see the blessings in the fact that although yes, Nate is running laps and yelling all day long and can’t tell me exactly what he wants, he CAN run, and he CAN yell, and he knows what he wants.  That is priceless, and something I try not to let myself forget.  But life gets in the way and we all get caught up in our own issues.  Even though I am a nurse and speak with patients with serious medical issues daily, face to face contact really is different.  Nate’s survival is not in question.   This is so crucial to remember.

Anyway, it’s good to get this perspective BEFORE the sleep study begins lol.  Nate always goes to sleep like a champ, and stays asleep for a good 4-5 hours (last night was almost 6!).  But when his normal half waking period in the middle of the night happens, the trouble begins.  He will turn and kick, which he does at home, only now he has electrodes and leads on both legs, and electrodes on his chin (which they place after he falls asleep).  No matter how many times he starts to fall back asleep, and believe you me, we rock, we sing, I massage his legs, I rub his back, and I beg…..he just can’t get back to sleep.  He was up at about 2am, fully awake at 3am.  At 4 am, Rajiv, our wonderful tech popped in and asked me what I thought.  I told him I knew the jig was up- he laughed and said he always knew that when Nate’s legs start kicking, it’s all over.  So then we went through the process of removing all the electrodes (at 4am) during which time it became painfully clear that Nate’s frequent approximations of *uck are not at all coincidental, sigh.  As Rajiv put it, I WAS hoping for language, and I know I said at one point I didn’t care anymore if it was all curse words, at least he would be communicating.  Guess he took that literally- freaking autism, lol.

Saying goodbye was surprisingly hard this morning.  The doctors, techs, psychologists, research assistants, etc. (even our nurse on the inpatient unit) have been following Nate for 18 months.  Nate has done a lot of growing during that time.  I don’t think his assessments are going to show his progress, after all, the fact that he now requests bubbles with “more bubbles, again, now, go” , pointing, and physically pushing the researcher back to the bubbles, as opposed to requesting bubbles with just “more” in the beginning still “tests” as requesting.  I frankly don’t care.  Because I see it.  And I know that the people doing the assessment see it- and that’s all that matters to me.  The subtleties of his improvements may not show up on paper, but they have made a tremendous impact on his and our quality of life.  We will take it.

I would highly recommend that if you or a loved one has a medical condition and you are feeling at a loss, you contact NIH.  We have been to many doctors, facilities, and research groups at this point (Kennedy Krieger, Hopkins, Children’s National Medical Center) and by far, NIH has been the easiest to work with.  They are appreciative of your time, they are respectful of your family, and seem genuinely concerned for their subjects’ well-being. That just can’t be said for everyone out there.  

When we said goodbye to the neurologist this morning, she told us that if Nate ever has any neurological testing ordered by a physician, we should contact them first before going to another facility.  If they can fit him in, they will do any EEG’s or sleep studies he needs there.  Because then they will have even more longitudinal data, and Nate will be in a familiar environment.  Rajiv also said he would see us in 10 years when they had finally put more of the “pieces” together and could recognize any of the, as of yet, unidentified abnormalities on his eeg (there is abnormal brain activity, just not seizure activity).  I have no doubt that if anything that could help Nate comes up, they will get in touch.  That makes every single minute of holding my breath and begging my son to go back to sleep 100% worth it.