Tuesday, January 10, 2012

Autism, Obesity and Medication: Our Run, Jump, Fly Boy Says NO THANK YOU!

Run, Jump, Fly Boy 2007

Run, Jump, Fly Boy 2011

There are many news reports concerning possible connections between obesity and medications prescribed for children and adults with autism and other developmental disorder.  Those reports help stiffen our resolve to avoid medications for our autistic son Conor, our Run, Jump, Fly Boy.

In the article In Treating Disabled, Potent Drugs and Few Rules  the NYT examined the psychotropic medications given with few guidelines to children with developmental disorders and the possible harmful effects, including obesity, anxiety and in some instances enlarged breasts in boys requiring surgery, that can result. The NYT article also quotes sources indicating that the medications do not treat the underlying conditions.

In Texas Johnson & Johnson is soon  to go on trial in respect of its practices in marketing Risperdal a medication often prescribed for autistic children. The AP article Texas suit against J&J over drug to go to trial reports that Risperdal and similar antipsychotic drugs have been associated with  increased risk of strokes and death in elderly dementia patients, seizures, major weight gain, onset of diabetes and potentially fatal high blood sugar.  

A UK report Parents' tragedy as autistic son found dead in Haringey care home tells of parents' grief at learning that their 20 year old son, who had been placed in a group home 15 months earlier and during his time there had been prescribed chloropromazine, had died of an obesity linked heart attack after being found faced down in his room hours earlier:

"Coroner Dr Andrew Walker of Barnet Coroner’s Court ruled the 22-stone teenager’s death was due to a heart attack linked to obesity at an inquest on Wednesday last week (January 4). But Harry’s parents, Jennifer Horne-Roberts and Keith Roberts, claimed strong anti-psychotic drugs he was given without their knowledge were responsible. They claim his three stone weight gain during 15 months in care was due to the drug chloropromazine and that the boisterous 6t-teen was given the drugs without their knowledge.

Before he moved to the care home, Harry had been exuberant and regularly took part in sports and outings. His parents took the heartbreaking step to put Harry into care to increase his independence, but claimed during the inquest they were instead locked out of his treatment with catastrophic consequences. They only learned that he was on the drug when a carer let the information slip in March 2009 and then wrote four letters to Harry's psychiatrist without receiving a reply.

During the inquest psychiatrist Dr Sujeet Jaydeokar said: There was a breakdown of communications."

In our son's case, shortly after Conor was originally diagnosed his pediatrician, who has considerable expertise with children with autism disorders, recommended that we avoid medications for Conor ... as long as possible.  So far we have avoided resort to medication even as Conor, soon to turn 16, and standing a solid 6'1" in height (as measured by hospital staff in a recent visit),  continues on the sometimes challenging journey known as adolescence.

The first combined photo above is from 2007 and the next two are from 2011.  Our son loves to run, jump and fly when we are out outdoors on our local trail systems (and sometimes indoors).  As long as we can we will avoid any medication for Conor as his pediatrician recommended so many years ago.  I do not want to see him lose the joy he obviously experiences when he decides to Run, Jump and Fly.

I don't want to take Conor's joy of movement from him and I don't want to see the physical and mental harm that appears to have been inflicted on some autistic children and adults by medications. I want our Run, Jump, Fly Boy to enjoy life and his love of movement, for as long as possible. So far we have not resorted to medication.  We have instead adopted a behavioral management approach, as recommended sources in the NYT article. At school which he loves dearly, he works with a UNB-CEL Autism Intervention trained Education Assistant using the ABA principles recognized by several credible authorities.  For now at least our Run Jump Fly Boy can continue to be who he is, and continue to enjoy his love of movement. 


Paul Whiteley said...

Thanks for the post. It is indeed a tragedy the story of Harry Horne-Roberts. This should serve as a wake-up call to all health and social care professionals involved that where indicated, good medicines management is a cornerstone of patient care.
That and the fact that a diagnosis of autism does not seem to be protective of other conditions including those physically manifested.

farmwifetwo said...

Med's are a personal thing IMO. One that has no right in any discussion of "right or wrong" to treat autism. But, I'll add my nickel's worth and what I've learned over the years so other's can think about it and make up their own minds.

My eldest was put on Risperdal at 6yrs of age. He could not sit at all. He'd sit and immediately stand up. He couldn't control his brain, his emotions and you could litterally see him have 2 thoughts at once. The risperdal was at a minimal dose. The goal was to take the edge off. 99% of the world had no idea he was on meds... that's how it should be. Then we were able to use private speech, homeschooling (on top of reg. school), and teaching of proper behaviour skills to teach him. He was in control, but by no means a compliant angel.. we still had mood swings and general being a kid behaviour. At 8.5 it rebounded. Unfortunately most parents and Ped's don't understand this happens. BUT, our Ped (who admitted his lack of understanding) sent us to a Child Psych who did and he immediately had us wean him off of the meds.

See... a child should never be on meds longer than 6 to 12 mths at a time without a min. of a 2 week break.. 4 as he said if both of you can handle it. He had recommendations for other meds if we needed to go that route. Instead at 12 he is still meds free, but we did in May get some lorazapam for emergencies. He used 1/2 after an hours sit in traffic in TO (June) when we went under the GO bridge and the claustrophobia finally became unbearable. Considering he'd lasted an hour up to this point... I think he did very well. It only took the edge off, and his "normal" mood/behaviour returned.

I am not convinced he'll manage puberty without anti-anxiety meds... but not today. I have no intentions of being one of those parents after something has gone horribly wrong who says "I didn't notice".... Whatever.

When Russ was still in the regular class in Gr 3 we tried meds to deal with the sensory. He requires a lot of movement. Long story short... it was a bust and after 6mths we weaned him off of the Risperdal (Adderall had some nasty side-effects and it only lasted a couple of days) and he's now in self-contained (started Gr 4 to 6 and he's in 5) where I have since discovered that the OT sensory plan was never put in place. He is meds free and doing amazing. There was no need for meds... just a decent school with a good Teacher.

Stranded said...

Looks like he is dunking a pretend basketball. So awesome.