Rough night of hockey

Personal

January 30, 2011

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I was very excited tonight, as I finally had an early (6:45pm) hockey game, which meant my boys could finally come out and watch their daddy skate around like Gretzky (at least in their eyes – thankfully they’re too young to know just how off that comparison is.) They were very excited to get to come, but my spidey sense tingled when the first thing Ben asked – and really, the only thing he asked – was if he could go to the bathroom.

See, Ben used to have a real fixation with bathrooms – more specifically, with flushing toilets. Something about the rushing water used to fixate him to the point where going anywhere in public was a (futile) exercise in patience and typically ended up with dragging a screaming kid out of a store (much to the disapproving looks of passer-bys, who didn’t know just what they were witnessing.) Over the course of the past year or so, and thanks to Ben’s (many) therapies and (admittedly) the positive effects of the medication he was/is taking (Risperidone), he’d been able to get that fixation in check, to the point where he may still want to flush the toilet at new places, but he’d be good with a single (okay, double) flush and then we could carry on with our business.

Tonight was a painful reminder of the severity of Ben’s recent setbacks, as the poor kid just couldn’t help himself. Before I’d even gone to get suited up for the game, he’d insisted on going to the bathroom several times (to which I acquiesced, doing whatever I could to try and deliver a fun and positive night for the boys.) Plus, my fiance was with the boys solo at the game (with no one there to help or to at least be able to focus on Ben’s little brother so she could attend to Ben) and I really didn’t want to leave her to have to handle Ben’s fixation by herself.

From the bench during the game, I kept looking at the stands, and more often than not, the 3 of them weren’t anywhere to be found… and sadly, I knew what that meant. Turns out Ben sat very still (with his headphones on and music playing to help drown out the loud sounds of the game and the buzzer which overwhelmed his senses), but once the first period was over, he (logically) assumed the game was over and it was bathroom time again. Which then continued through the next 2 periods.

He was happy – he wasn’t throwing a fit, he wasn’t making a scene – but it was clear that the poor kid just couldn’t help himself. He was fixated on that damn bathroom and just couldn’t shake it’s pull on him. Add to that the pointed stares from others in the stands (who apparently couldn’t fathom why my fiance wouldn’t let the poor kid go to the bathroom) and the commentary from (hopefully) well-intentioned strangers in the bathroom who insisted that he wasn’t done and still had to go when she was trying to call him out of the men’s room… Suffice it to say it was a difficult night.

It was a quiet ride back to drop the boys off at their mom’s house, and more than once I broke down in tears after I got home, as tonight just further demonstrated how much Ben has regressed (how I loathe admitting that) and the challenges he’s facing.

The positive is that it wasn’t as bad as it could’ve been – or has been in the past – and other than his uncontrollable fixation, it was (I suppose) an overall positive public outing. But my poor Bennie – how I wish I could reach inside your head and just flip off the switch that controls your obsession with toilets so you could look up and around at the amazing world you live in and not lose yourself to your fixation.

We’ll work on this, together, my beautiful boy. Daddy’s here, always.

Respen-A: a new treatment (and hope)

Medical, Treatments

January 29, 2011

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In my recent forays into scouring the web for information on new (or, really, any & all) approaches for ASD, I stumbled across a new treatment that’s been introduced in the last couple years: Respen-A. Here’s a solid overview pulled from the news release (click here to read the full text)

Respen-AA new, homeopathic treatment for autism, Respen-A, improves symptoms of autism associated with communication, speech, emotion and bonding, according to the researcher who created Respen-A, Elaine DeLack, RN. Unlike theories that center on negative reaction to vaccinations, DeLack considered data regarding exposure to a commonly used drug used during delivery in combination with brain enzymes that affect infants’ brain at birth, and again in early childhood.

DeLack’s hypothesis (which can be viewed in slide show format at www.Respen-A.com, connects children with autism to the mother’s use of epidurals during childbirth. Epidurals were introduced into this country in the 1960’s. By the mid-80’s, 22 percent of women received an epidural during delivery. In the mid-90’s, the number grew to 67%. Today, nearly 90% of women receive an epidural during pregnancy.

DeLack contends that the development of autism is not due to the actual epidural procedure, but rather the effect of a “cocktail” of drugs used throughout the procedure, including one drug commonly used in conjunction with the epidural to induce labor: Pitocin. In combination, the drugs have the potential of skewing the brain if the infant is unable genetically to process the drugs quickly through their system.

Pitocin crosses the placenta to the infant’s system during childbirth. The drug requires adequate production of an enzyme found in the liver (CYP 3A4) in order to rid it from the body. If the infant has a genetic inadequacy of the CYP 3A4 enzyme (found more often to be lacking statistically in boys than girls), the drug’s intensity elevates in the infant’s system, builds with another naturally occurring neurotransmitter that plays a key role in very early brain development: the hormone Ocytocin.

Ocytocin builds naturally in the brain during the first 7 – 10 days of life, ensuring that nerve patterning develops as it should in the brain. Once Oxytocin levels reach a naturally predetermined level, the development of the brain’s nerve system (HNS system) ceases.

DeLack theorizes that the addition of Pitocin and epidural-related drugs into the bloodstream of infants without adequate CYP 3A4 genetic enzymes, causes brain development to “shut off” early, stunting crucial neuro-development.

A second enzyme may explain why autism shows up in many children around the age of three or so. The enzyme MAO-A is essential in regulating serotonin levels in the brain. Unaffected by the drugs used in childbirth, MAO-A levels remain high in the first years of life, assisting brain function. The impact of MAO-A may, in fact, cover symptoms of brain impairment in infants and toddlers.

MAO-A levels diminish as the child ages – allowing serotonin levels to rise, impacting the areas of the brain associated with communication, speech, emotion and bonding. Many parents of autistic children don’t realize their child has been affected until their child shows issues with speech, communication, and bonding.

Respen-A curbs the level of serotonin in the autistic brain, allowing for more normalized function. Respen-A is being prescribed by physicians – and many parents are seeing dramatic improvement. If further study upholds the theory, birthing procedures could change. “We see promise in all of this,” DeLack says. “Further study will determine if simple modification during childbirth could be all that is needed to stem the surging tide of autism,” states DeLack. And for those who have autism?

“Respen-A could give them a quality of life that they – and their parents – deserve.” Respen-A is administered via a topical disk. A prescription is needed, and a daily calcium supplement is also required.

I was, and remain, very excited by the potential this new treatment offers, as DeLack’s theory really struck a chord with me. Ben’s birth was a difficult one, with his mother being induced (with heavy, heavy doses of Pitocin) and also received an eipdural as well. It’s not so much that I’m globbing onto this because I need to know the “how” or the “why” Ben ended up on the Autism spectrum, but more so the logic behind this theory just seems to resonate with me and (obviously) hits close to home.

The fact that Respen-A is (essentially) a homepathic treatment is also a plus – I’ve always struggled with the fact that Ben’s been prescribed a series of heavy pharmaceutical in our efforts to help him. I have never considered his ASD to be only an issue with his brain, not to mention the unknown long-term side effects of heavy meds on his still-developing brain) Respen-A offers a new approach that appears to address the key challenges Ben is facing right now: focus, socialization, and irritability.

Ben’s doctor had not heard about Respen-A before, but after reading through the materials I provided him, he agreed that this treatment will not harm Ben in anyway, so he is open to prescribing it so long as we keep him informed as to Ben’s progress, as well as having a plan for how much time we intend to “try” the Respen-A for (before deeming it helpful or not)… which is a totally reasonable request.

While Respen-A (by all accounts) is “safe,” there are some key things parents need to be aware of, the most notable being that kids taking the treatment must ensure they also take significant amounts of calcium carbonate to ensure they don’t become calcium depleted. (Thankfully, the pharmacy that is filling Ben’s prescription also includes a specially-compounded mixture specifically for Respen-A kids.) As well, the best success has been seen with kids who limit the amount of certain types of vitamins and supplements they’re taking, which is very good and timely to know as I embark on my immersion into all types of helpful approaches to dealing with ASD. All of this, and more, is explained in great detail in the Frequently Asked Questions section of the Respen-A web site.

So, with much hope and excitement, our first batch of Respen-A was delivered to us yesterday, and Ben will begin treatment within the hour. Again: I’m not looking for that one magical solution to Ben’s challenges, but I admit to being very hopeful that this exciting new treatment could bring some of the positive results so many other ASD kids have been fortunate enough to experience.

Also worth noting: Elaine DeLack, the creator of Respen-A, has been incredibly helpful and responsive with my many (many) questions about Respen-A and the potential conflicts with other medications, vitamins and supplements. She’s clearly someone who cares.

Hello world, this is my blog.

Misc

January 28, 2011

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Welcome to the “Walk With Ben” blog. The background on why I took it upon myself to launch this blog can be found on the “About” page, but the Cliff’s Notes version is my son is on the Autism spectrum, I’ve recently immersed myself into researching and reading all I can about ASD (Autism Spectrum Disorder) in hopes of seeking out whatever types of treatments might help my darling son blossom and shine, and I’ve taken to posting to this blog to share out whatever I think is interesting.

There’s such a wealth of information available on the web – with the most interesting stuff scattered and disparate where only determined Google searches can unearth it – so I decided to set up this blog to help me capture and organize the information of interest I found for myself, as I work to chart a course to improve my son’s daily world. Of course, my hope is that other parents out there might benefit from what I post here, which would just be delicious icing on an already rewarding cake…

I’m not a professional writer. I’m not writing for a specific audience. I have no set agenda or schedule – I may post once a week or 10 times a day. But I am, first and foremost, a loving and devoted father, so my posts (be they informational or emotional) will reflect that first and foremost. This blog is for, and dedicated to, my son Ben, who lights up my life every single day.