Friday, 23 August 2013

Are The Tides Turning for Nathan!

Wow, it’s been an eventful few days on the Nathan-front.  In a good way.

I spoke with the study coordinator at NIH yesterday and it IS a drug study.  The medication involved is Aricept. 

NIH did an initial study on this medication.  The purpose of the study was to look at abnormal sleep patterns in children with autism, and then determine if the addition of Aricept can normalize sleep.  Children with autism are known to have issues with sleep, but even those who don’t wake up all night (ahem, Jack) often have abnormalities- significantly decreased periods of REM sleep.  REM sleep is thought to be crucial to normal brain development, and lack of it is thought to lead to many of the behaviors associated with autism.  So of course the hope is that if these cycles are normalized, brain development can occur and thus the symptoms will decrease.  This first study was TINY, but there have been other studies done at other institutions.

Here is the study we are invited to join (or at least be screened for):

I am very interested in this.  Jack is taking memantine on study with Children’s National Medical Center.  Both of these medications are labeled for Alzheimer’s currently, and researchers have even started to study the effects of these two medications when given together (for alzheimer’s).  Initial studies are suggestive of a synergistic effect.  Meaning that when given together, the effect of each individual medication is increased.  This all sounds great, but I am concerned and still have many questions.  I have requested to speak with the physician conducting the study and am waiting for a call back.  My main concern is that this study, unlike the one Jack is participating in, has a placebo group.  And the study period is long- 18 months.  If we are unable to add other medications, or if we are told particular interventions are not allowed during this period, it would make me think twice about joining this study.  18 months of development in a young child with autism is an eternity and things can change so much in this period of time.  I am not willing to potentially sacrifice this time and have him receive no drug.  The study also includes 3 2-night sleep studies, which would mean hospital stays for me and Natey.  Not a huge deal, but I want to be able to view the results.  I hate it when tests are conducted for “research purposes” and the parents are never told what was found.  For instance, when we did the SEED study, they took Nate’s, John’s and my blood to study for genetic abnormalities.  We are not privy to these results which really just annoys the crap out of me.  If I am putting my child through these potentially uncomfortable procedures, I want to know the outcome.  Nate would have to demonstrate an abnormal REM sleep pattern in order to qualify for the study.  My first inclination was that he would not be the child of mine to study regarding this issue, but according to the research assistant, the fact that he appears to sleep well says nothing about his REM sleep.  So we shall see.

I finally obtained the results of Nate’s urine amino acid testing yesterday, and….

He has SEVERE yeast issues and also has clostridia (a bacterial infection in the gut common in children with autism).  This goes back to the whole theory of autistic children’s symptoms appearing or worsening after repeated rounds of antibiotics in infancy.  The normal gut flora is destroyed (and these kiddos have decreased ability to tolerate or compensate for this) and thus opportunistic infections occur.  Yeast is known to increase autistic symptoms.  A little more information on this:

If you read the information in that link you will see that Nate demonstrates most of the behaviors associated with yeast.  I have suspected or honestly, intuitively known that this is an issue for a long time.  The doctor has even empirically treated him for yeast in the past, clearly to no avail.  So what do we do about this?  Well, we double his probiotic and we start fluconazole.  Again.  I have a feeling we will be on several courses of this.  It’s a stronger medication than nystatin.  His symptoms have temporarily improved in the past when he was on nystatin, but the minute we stop we are right back where we started.  I need to work on cutting sugar from Nate’s diet- which is extremely difficult in a child with such a picky palate.  We also will be starting Nate on flagyl for the clostridia.

As if this wasn’t enough, there are several metabolites out of whack in Nate’s testing that could indicate some other abnormalities; further testing is needed, but interestingly he has an extremely low level of CoQ10, which is something contained in the mitochondrial cocktail we are about to start.  This level and several other data points are indicative of some type of metabolic problem or mitochondrial disorder.  I need to get further information from his doctor on this, because other than the infection information, I am getting this data straight from his lab results, which his md only received when I faxed them to him yesterday.  He hasn’t had a chance to examine all the results or explain them to me.

Phew, that was a lot of information thrown out there all at once.  What is the bottom line?  To me, this all means one thing- HOPE.  We have identified some real issues, (albeit all at once and in an overwhelming fashion) issues that can be addressed.  And address them we will.  Please say some extra prayers for my sweet boy as we embark on some of these new interventions.  And say some prayers for his mama that she will make a wise decision when it comes to this new study opportunity.

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