30 M0NTHS ON DRUGS AND COUNTING

I received the first official comment for my blog.  This means a comment not from a friend or family member with the polite “good job”.   Instead a stranger somehow happened upon one of my blogs – in this case the one titled “The Gateway Drug” (see http://sensingseamus.com/2011/02/07/the-gateway-drug/).  She simply asked me “what happened”.  How dare I leave my readership of at least 1 solid fan hanging?

To recap:  When I wrote that post, my husband and I were  grappling with the prospect of giving our son his first dosage of psychotropic drugs.  That was Feb 7, 2011 and he remains on medication.  All in all it was the right decision but not the only one of serious import that we have had to make during this time.

Since then we have also had to find a new school that could educate our son appropriately, and use up a good chunk of inheritance money doing so as legal fees and educational consultants cost dearly.  We have gone through a myriad of professionals – psychologists, primary care physicians, occupational therapists, and speech pathologists.  Most have been wonderful, but all have required much work to get them up to speed on Seamus.  We have had to monitor progress or lack thereof and cut them off when we hit a wall – monetary and or emotional.  And, we have had to pick up the pieces of a crushed child when that professional changes jobs, dies, or when Seamus just ages out of that particular person’s expertise.  (See my post “Goodbye Dr. Chips.” http://sensingseamus.com/2013/04/22/goodbye-dr-chips/)

The medication itself – on top of all of this – has required constant tweaking and making sure that he actually consumes those little morsels every day.  At the beginning, certain dosages caused Seamus to be over emotional – crying at the slightest thing.  So we had to lower the Intuniv dosage and increase the Concerta.  But wait Concerta over 27 mg causes him constipation.  This defied logic, as constipation is not a known side effect.  (Note to self to write a journal article for the Lancet on this medical breakthrough!)  At one point he was acting great at the start of school but by 1pm was flopping all over the place and acting in his most unregulated self.  So, that meant, drugs in school.  The nurse would visit him and dispense the magic pill daily to carry him to at least 3pm.

During all of this, Seamus’ weight has been an issue. He started looking literally skeletal thanks to Concerta and its appetite suppression.  Whole milk and carnation instant breakfast drink were the remedies we were given.  So if he wants extra ice cream should I say yes?

Our developmental pediatrician doctor ended his practice and so we are now with a psychiatrist who is managing the meds.  Now my little guy takes 3 pills in the morning.  Are they working? Depends on the day.  Depends on the other influences around him.  Depends on so many things I can’t track, monitor, or predict.

I can say that Seamus now has more positive days then negative although today he cursed out his teacher and made fun of a classmate.  Such seepages occur and continue to highlight that this is – no matter how many drugs or different dosages or at what time of day they are administered – a boy with severe ADHD and sensory processing disorder.  The world remains a hard place for him to accommodate himself to and no pill will make it perfect.  At best, we hope that the pill makes more days then not easier.  That is the hook for us and why we keep at it.

I love him unconditionally and wish I had the secret pill to make it all go away  – his unexplained anger, his need to hurt himself, and the self-loathing he has after a bad episode.

We will keep with the meds, plus the right school, and the litany of professionals who thankfully dedicated themselves to helping kids like mine.  He and we still need help despite 32 months years on drugs.

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About mazeyshea

A mom of a child with autism.
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