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. 

The Scoop on Nate- Latest Developments

First of all, to those of you who have donated to Nate's medical fund- I want to make sure I say thank you.  Some of you I don't even know, some I haven't spoken with since high school.  I can't begin to express how touched we are.  So here's what we know so far, I submitted all of the paperwork to take both boys to Dr. Usman; I decided it just made more sense to take them both at once, and plus, the last few posts that have been about Jack have made me really think about how much his life is impacted at this point- it's a lot.  I didn't hear back for quite awhile, so I emailed the office staff, who informed me that she hasn't gotten to our intake sheets (she will then decide if she will "accept" the boys- although when you have two kids with the same developmental diagnosis few practitioners can resist), but she also shared this pretty piece of news- new patients are currently being scheduled for spring of 2015.  Sigh.  I should have expected this.  It doesn't change my level of disappointment though.

So clearly, if you have met me you know that I am not one to sit twiddling my thumbs for one of the most important years of my child's development whilst "waiting" for an appointment.  Not going to happen.  I have been looking at other, more homeopathic treatments to try while we are waiting, and am very enthused about some options.  Maybe someday I will talk about this, but not right now.

About a week ago I decided to give Nathan a break from his diflucan and antibiotics.  He's been on them for two months with no break, and I worry about his little system.  Three days later I found him standing on his head (one of his major sensory seeking behaviors from when he was first diagnosed- we would find him this way in his crib).  Not a coincidence.  And further confirmation that an unbalanced gut and immune system are significant contributors to his behaviors.  This actually gives me hope though- that's the world I live in- I just want to know how to help him.  Even if it means confirming a new problem- who am I kidding, finding a solvable problem is a big victory.

He continues with school, speech, OT, Cisco Center, etc.  I think he is in a very good place with his therapies actually.  Working with Carla "officially" for speech (she was always "working" with him, just not one on one) is very beneficial for him.  Not only is she able to sit down and work on the methods that she employs during a session, but she is able to reinforce this on a daily basis when they are working in the classroom setting.  Consistency is key for these kiddos. 

Today he was playing with Carla a little bit right before we left- they were doing some singing and then peek a boo.  Nate literally said "I see you".  I heard it clear as day.  When these phrases pop out it's like winning the lottery.  The one unfortunate part of that is that recurrence is not likely (at least not in the near future).  But Carla pushes him- she is not afraid of pushing his limits, I think that is part of what makes her such an effective practitioner.  And even though Nate often ends up crying in frustration, he is always happy to see her the next day.  It's a great balance.  Anyway, Nate continues requesting things consistently at home- he will point to which cabinet the item he wants is kept in if verbal attempts are not effective.  I guess the point of this is that he is trying, he is really trying.  His repetition of familiar words also continues.  He is still working with PECS as well, but because of how much effort he is making verbally, it's hard to decide how much to use them.  I don't want him to get frustrated, but I don't want to take away the incentive to use words (since he seems to want to use them).  So we are finding our own balance, as I guess every family does.  He will say "watch" if he wants a program on TV.  We put on netflix and he walks over and points to the program he wants, and says "want".  This is great progress, especially since it doesn't involve his biggest motivator- food.  The other day, I was giving him a "grain free cookie" (don't judge, I am an awesome mom, lol), and I said "just one".  Swear to God the kid looked right at me and said "two".  Luckily John heard it too- so either I'm not crazy or we both are ha.

This is his last full week on the Aricept trial through NIH.  He will stop taking the medication next Friday night, at which time we will go through a battery of tests- developmental, blood, ecg, and a sleep study (only one night this time, thank GAWD).  Then they will follow up with us for the next year.  I have mixed emotions about stopping the medication.  His speech has definitely progressed in the last six months, and I do think that Aricept must have something to do with that.  On the other hand, we have been very consistently treating his yeast issues also.  The positive part of stopping the medication is that we are free to try other interventions.  I have held off on certain things because we didn't know if they would interact with Aricept.  So we shall see...either way, I would highly recommend NIH to any parent who is looking for cutting edge treatment for their child.  They have been an absolute pleasure to work with.  At least from mommy's perspective. 

Memantine and Autism- An Update and Comparison to Aricept

I woke up this morning to discover that my post Memantine:  One Week In, http://jackandnatesmom.blogspot.com/2013/06/memantine-one-week-in.html
has become my most frequently read post ever.  What this tells me is that parents are desperate for information on the drug and interested in trying it in their children with autism.  Unfortunately, the study that we participated in was prematurely (to us) closed because Forest Labs "had enough data".  So they screwed the families that had committed to the study and spent countless hours doing assessments, lab work, interviews, and ummm....driving.  Not that I'm still bitter or anything.

So here is some info on Namenda I posted right before we started the study:
"Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising. 

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored."


OK, so the first thing that comes to my mind is, wow, they kicked like 700 kids off of this study early????  That is insane.  Makes me more angry than I already was.

In terms of Jack on Namenda- I know that one area of interest for this medication is language.  I cannot really speak to that with regard to Jack- his language is excellent and has been since he was about a year old.  He is hyperverbal if there is such a thing- although quite a bit of it is quoting.  Our goal was to work on sensory issues and social issues.  It is hard to look at the progress with Jack, as one has to look past his penchant for perseveration, which frankly is really hard to do.  To look at social interaction with Jack, one would have to catch him in a moment when he is not busy spouting facts at you about his current area of interest.  The fact that this has not changed I guess is one telling piece of information- this drug has definitely not impacted his obsessiveness.  AT ALL.  The mood swings?  It hasn't effected that much- although I will say that when he was removed from the drug at the study cut off, he experienced a period of really labile behavior- so much so that our pediatrician prescribed the medication for us- so far the insurance is covering it.

Social-  Jack continues to struggle with this aspect of life.  When we are in a calm moment we have definitely noticed that he is better capable of carrying on a back and forth conversation.  These are brief moments, but they are there, which is better than in the past.  As he gets older (and his peers get older) we are already noticing a decreased tolerance for his constant talking and how shall I say, "information sharing".  We are working really hard at redirecting, but I'll be honest, his will is MUCH stronger than ours.  He has worn. us. down.  I almost fell over laughing the other day when Jack was telling our next door neighbor some fact and then asking him if that was right.  Our neighbor said "exactly like that".  That is one of the few responses that satisfies Jack and one that John and I have said in unison many a time.  Since he has taught us the appropriate responses, clearly he is now moving on to our neighbors.

Attention-  He struggles with this the most.  Which always intrigues me.  How can he be soooo hyperfocused on some things and yet be unable to attend to something as simple as 8 spelling words for more than 30 seconds?  He continues to require constant guidance and redirection at school by an aide- we have an upcoming IEP meeting and if there was any suggestion of changing this I would likely pass out.  At some point we may have to bite the bullet and try another ADHD medication, but I am terrified after our initial experience.  Jack is very sensitive and I just don't see it ending well.

There have been some bright spots- I have seen more empathy from my little boy this year without question.  He saw a child in a wheelchair and cried because he couldn't walk.  One day I caught him crying in the back seat, and he asked me to change the song.  I assumed that the sound was bothering him (sensory)- but when I asked he said "no mom, it's a really sad song".  (Pink- Just Give Me A Reason)  That is very new.  He tells me more about his day now- he tells stories.  His day is no longer "in the vault" as it used to be.  But here's the thing- it's been a year, right?  Who's to say that this isn't development that would have occurred without the namenda?  How can I draw any conclusion based on these small changes?  The truth is that I really can't.

For us, Namenda is not "the answer".  Did we have some baby steps?  yes.  Was it because of Namenda?  I doubt I will ever be able to answer that.

I do want to mention one other thing- which is Nate and his Aricept study.  With Nate we ARE looking at language.  I would estimate him to be at maybe a 16-18 mo level when it comes to receptive and expressive language.  I will have a more exact number after our next NIH visit, which is the second week of April.  He will also stop the medication then, and they will continue to monitor his development for the next year, to see if there is any long term increase in REM sleep from this short period of giving the medication, and how it affects his development. (Mommy is really worried about the medication stopping) Now, keep in mind that we are also treating chronic infections in Nate right now, and we have seen marked improvement in his engagement since starting antibiotics and antifungals.  That all being said, we have seen an increase in speech with Nate.  I can say that definitively.  Not only does he have more words, but he also seems to get the concept of repeating.  If you ask him to say something, he quite often attempts it.  This never happened in the past.  He also, for lack of a better way to say it, follows commands more consistently.  He claps hands, stomps feet, puts on his coat, goes to the door when I say it is time to go, says bye bye consistently.  When we walk to the door, I say "open door" and he says "open".  When we get to the car, I tell him "up" and he says "up".  If he is ready to leave he says "go" spontaneously.  He says "I want", however the item is always "fry inna".  No, we don't know.  But if we work with him for a few minutes, and makes suggestions he will usually identify which food item he wants (chip, chicken, toast, etc).  Which means he also attempts to say these words- chicken is "wicken" which is just so cute.  He is more opinionated about say, the programming on tv.  Let me rephrase- he throws a fit if he doesn't get what he wants.  This is all since about December.  I can honestly say that if I had the option to try either namenda or aricept, my choice would be Aricept, hands down.

Here's a little food for thought- these two medications have actually been used synergistically for alzheimer's.  http://www.alzheimersreadingroom.com/2009/08/does-combination-of-aricept-and-namenda.html

http://news.frx.com/press-release/rd-news/jama-reports-alzheimers-patients-treated-combination-namendatm-memantine-hcl-a

Interesting, right?  So those are my thoughts for now, for what they are worth.  It's all anecdotal obviously, but I consider myself to be fairly observant in general, my assessment skills as a nurse are pretty well honed, and well, when it comes to my kiddos, just call me eagle eyes.  :-)