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.  :-) 

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:

https://tspace.library.utoronto.ca/handle/1807/1649

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?

Having The Rug Pulled Out From Under Your Child: Yet Another Reason To Detest Drug Companies

I am pissed.  That’s putting it mildly.  My kids have enough to deal with, they don’t need further obstacles put in their way.

But that is exactly what is happening.

My biggest issue right now is with the Namenda trial Jack is enrolled in.  We have been at the Children’s National Medical Center site for the Forrest pharmaceuticals study of the use of Namenda (a dementia medication) in the treatment of autism.  Jack began this study in May of 2013; he couldn’t start sooner as he was not old enough.  We went through multiple visits for preliminary testing, then every 2 week visits, then finally monthly.  The study has been run poorly by this company the entire time- they progressed to a “new phase” giving the researchers (at 20 sites in the US mind you) 2 day’s notice to see ALL of their patients.  We have been called back for blood work when they forgot to ask for ONE tube of blood- this is almost a 3 hour journey round trip in traffic.  We have gone for visits at ridiculously inconvenient times, including coming home during rush hour from DC in the direction of the beach on a Friday in August.  That was a blast.  I dealt with being chastised for “frequent absences” from work and made the difficult decision to file for FMLA for both boys, something I should have done long ago, but resisted- it was a pride thing.  I worked my ass off to make sure that I took no more than my allotted hours off, never went over them, but it didn’t matter, because the fact that I took them one day at a time for appointments, etc., created many “incidents” which apparently looks bad.  So I had to protect myself, my family comes first, end of discussion.

But all of this was ok.  I chose to do this study because I wanted to leave no stone unturned when it came to helping the boys.  This medicine is milder than ADHD meds, i.e., Jack didn’t fall asleep 5 times a day or scream when I left him in his room at night, his focus was maybe a little better, but it’s hard to say.  It was a mild difference and honestly could be that he’s just maturing.  So I wasn’t even sure the medication was helping.  But about 3 weeks ago he finally reached the weight cut off and we were able to double his dose- effects may not show for about 8 weeks, so we have been hoping. 

And then?  Rug=pulled.  Forrest decided that they have enough data from other subjects and ended the study.  This is NOT the same thing as ending enrollment, or not taking on any new subjects.  No, they decided to pull all of the kids off of the medication, whether they completed the study period or not.  I am livid and feel that this is extremely unethical.  If the study period was set for 2 years, it was for a reason- this is what we signed up for, this is what we put our children through numerous blood draws, ecgs, and developmental tests to achieve.  This is what caused me to miss so much work.  Every family in this study worked for it.  And now it’s just over.  We went for our “final” visit today- 2 hours of testing (which I frankly considered refusing multiple times) and Jack no longer has the medication.  No weaning, nothing, just done.  So even studies that are there to “benefit” our kids will only benefit them if more data is still needed??? 

Now I am FURTHER refining my criteria for any future studies.  It’s pretty specific.  NIH or center based studies only.  Never again will I subject my child to a study run by a drug company.  They clearly gave no consideration to the subjects as actual people- children.  And it sickens me.  I had to work really hard to be kind to the researcher and nurse today, even knowing that it is totally not their fault.  It is totally out of their hands when the study is “closed”.  But I don’t know that I could work under those circumstances- they have developed relationships and trust with these families, only to withdraw support with no warning.  Awful.  They did tell me that I could ask my pediatrician if they would prescribe it.  I already had, and she said that if I wanted to continue it, she would research it and prescribe it for us.  We are lucky though- we have an amazing pediatrician who is very forward thinking.  That is not the case for many other children.

Between this and our insurance company’s continued denials of both boys’ OT for habilitative services/with an autism diagnosis, I am on the war path.  I have given Cigna IN WRITING, the policy 3 times.  They didn’t develop appropriate coding for the procedure- a rep told me.  Guess what?  Not our problem.  Find a miscellaneous code, and suck it up.  They had better get their asses in gear and quickly as they literally advertised these services in the open enrollment pamphlet for 2014.  I may have been the only one who found out about it for 2013, but it’s common knowledge now.  The HR representative at my husband’s job was to call Cigna and get this fixed, as I know if I call again it will not end well.  Meanwhile, my boys missed their appointments last week.  Because of insurance denying covered services. 

So basically, if you use private insurance you’re screwed, if you go the study route, thus avoiding the insurance debacle, you are also screwed.  Love it. 

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

Memantine: One Week In

I am going to try to do an update on Jack weekly at least during these first few months of the study.  He started memantine a little over a week ago.  When I spoke with the study coordinator and the psychiatrist last week, they said that some kids show immediate improvement and with others they see nothing for a good 6 weeks- and of course all other possible permutations of progress.  Something of note- Jack is under 20kg so he is on the lowest dose.  The highest weight for the lowest dose is 20kg, and he is 19.6kg.  So he may not get the full benefit until he gains another pound (and maintains that weight for 2 consecutive visits) and gets bumped up to the next dose.  Luckily, with his tapeworm like appetite, I am hoping this happens sooner rather than later.

So here is the HUGE relief for me and John- we have not seen sleep disturbances- neither more frequent awakening nor falling asleep in the middle of the day.  Both of these were huge issues when we tried typical ADHD meds, so....phew.  That's not to say that Jack didn't wake up at 3:30 once this week and then wake up in the night several other nights, it's just that this is his "norm".  So no worsening of any of this is a very very good thing.

In terms of progress- do I think I see anything?  Kinda.  I say kinda because anything I may be seeing could be a sign of a "good week" also.  So some consistency will definitely be necessary before I will give memantine any credit.  Here is what I have observed- increased emotional lability.  Totally a double edged sword- I didn't think it was possible for his emotions to escalate any faster than they already do- I was wrong.  We have had a few tantrrums that came on much more quickly and were higher in intensity.  Bad.  However, I have also seen Jack cry tears of sadness- when I talked to him about our family friends who are going through something difficult he cried.  He has told me that I hurt his feelings.  When we correct or punish him he cries more frequently and tells us we're "being mean".  This is new, and I think it shows that he is experiencing more intense emotions and also some more appropriate reactions. 

The other thing that has happened- well I have had several extended conversations with Jack this week.  When I say conversation I mean back and forth, give and take, and NOT about one of his areas of interest.  I mean he told me more about his day at school yesterday than he ever has before.  I mean that when I told him he had OT this morning, he asked who would be with him and expressed disappointment that it would not be Miss Sam.  He has been asking me a multitude of questions about Nate as a baby, himself as a baby, asking where his friends live....nothing concrete, but just different than anything he has showed interest in before. 

And of course the sense of humor is still intact:
The other day he was in our bed first thing in the morning and he started in with "Natey is a baby".  Which he know aggravates me since Nate is of course 3, but behaves somewhat like a baby because of his lack of speech (I'm just a wee bit hypersensitive about this).  So I said, you know what Natey is, what is he?  Jack replied "he's a toddler, and guess what he'll be next?"  I replied, a kid?  He said "no, a quadruplet" and then laughed like a maniac.  So there is another positive- he's still Jack, no doubt about it. 

So I guess we just keep watching....

"D Day"

Tomorrow is what I have dubbed "d day".  I will be getting up early, leaving the house with Jack by 7 and heading to DC for a "quick" appointment.  I plan to be home in time to put in a full day of work.  Tomorrow Jack is starting Namenda as part of the study he has been enrolled in.  I am nervous, excited, scared, and hopeful.

  We have been reading a book about Aspergers- I feel like Jack is old enough to notice that things are different for him, and I want to set the precedent early on that yes, different is the right way to say it, not less.  The book I found is called "What It Is to Be Me!- An Asperger Kid Book".

It is like reading or looking at a map of Jack.  It is about a little boy named Danny who has aspergers- he talks about how he's very good at some things, like computers, but has a really hard time with things like writing. (check)  It talks about his very strong senses, and the fact that sound often hurt his ears, and sometimes he likes to wear headphones.  It addresses food texture issues (pasta has never once entered my child's mouth), personal space issues, fixations, difficulty listening, CONSTANT questions about how things work, and taking things super literally.  It is a great book and Jack really likes it.

I tried to use some of these concepts to explain what this new medication is all about, and I have to admit it, mommy FAIL.  I used the example of his "super ears".  Or tried to. I was attempting to explain to Jack that he would be taking a new pill that might help him feel a little different, like things won't hurt his ears as much.  Somehow, he turned it into this- the pill is going to make sounds and it will hurt his ears.  Sigh.  So for the past 5 days I have been trying to undo this damage- every time he takes a supplement that's in pill form we examine it and confirm that it does not in fact have a mouth, so it can't make any sounds.  Hope this works tomorrow.

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.

So please say a few prayers for our family, the next few days could be very telling.