Posts tagged "biomedicine"

A return to Respen-A


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It’s been a couple months since we decided to take Ben off of Respen-A. He’d been on for 4-5 months and while the treatment definitely wasn’t hurting him, we weren’t seeing any dramatic improvements, and we also were eager to try some additional treatments/supplements that seemed to have brought about positive changes in other ASD kids (i.e. GABA, fish oil, DMG, etc.) So, we took Ben off Respen-A.

At first, we didn’t see any negative effects in stopping – maybe he was a bit excitable or “stimmy” in the days immediately following, but that seemed to level out. Fish oil and GABA/Inositol were introduced, with no big/pronounced improvements as a result (unfortunately.) As covered in recent blog posts, we started to notice that Ben’s OCD tendencies seemed to flare up, then settle down, but something that seemed to stay escalated was his propensity for being easily upset – i.e. 0-60 in the blink of an eye. If he was told “no” or told to do something he didn’t want to (or to stop doing something he wanted to), he’d fly off the handle. This was what we brought up to his neurologist, who recommended putting Ben on Prozac. And that Rx still sits on my kitchen counter, a cold reminder of how we’ve apparently reached the end of the road (for now) with regards to what traditional medicine can do for us. Our paths have diverged from what Ben’s specialist thinks is best for him, and I’m not interested in continuing down that road (at least not with him.)

So we tried DMG. Within 2 days, Ben was so hyper/overstimulated/easily upset that we decided to stop. Apparently DMG helps most ASD kids, but can have these type of negative side effects for a small minority of kids. Lucky Ben. Truthfully, it could’ve also been lousy timing – his school year had ended a few weeks back (and the summer always brings a painful loss of routine and schedule, which is a nightmare for any ASD kid and their parents), he’d just got back from a weeklong trip to Santa Cruz with his mother (a fun trip, but again: a break in the regular routine) AND he had just begun summer school (new school, new teachers, no chaos.) In hindsight, clearly a lousy time to try introducing a new supplement. Still, his behavior did seem to settle back down after stopping DMG… and at least the full-on meltdowns dissipated. No more screaming/kicking/crying in his room – I hadn’t seen those outbursts in months, if not years. It’s so easy to forget that this used to be the norm and was so scary when it came back on full-force like it did. I was shattered inside – took such a heavy toll on me… and I can’t imagine what it was like for Ben.

So I started to search for “what next” – B6/magnesium? Super NuThera? Then it dawned on me: instead of lucky Google searches and seeing what shows up as as being the most popular treatment from other parents, I should talk to a professional, someone who works with kids and gives professional opinion on what biomedical approaches we can try. So I’m going to look into that more this summer – it’s expensive (as DAN! doctors – “Defeat Autism Now”/biomedical practitioners – are not traditional doctors, so their fees are not covered by health plans), and it’s inconvenient (in that there are only 3 DAN! doctors in Sacramento, but I’m leaning towards going with one in southern California who seems to be at the top of this field)… but ultimately, if it gives us any help/advice/insight on different approaches we can take with Ben, then it’s all worth it. Even if it doesn’t, I’ll feel good knowing we went down that road and exhausted all avenues, and didn’t rely solely on my Google searches.

Which leads me to Respen-A, and it’s new blended chord formulation (different formula, apparently more effective.) In hindsight, it’s clear that a lot of Ben’s ‘setbacks’ as of late coincide with him going off Respen-A. At the time, we weren’t seeing any huge improvements, but obviously got used to the “normalcy” of Ben’s even-keeled behavior. Seeing how things have been the last few weeks (granted, with school ending, etc.), I think the Respen-A was really helping him maintain that steadiness that he’s now missing. I had read that some parents take a “Respen-A vacation” to see if their kids even notice or react when the Respen-A treatments stop for awhile, and I’d say it’s clear that Ben has been affected by going off. So now he’s going back on – shipment should arrive this Friday, and we’ll get those little patches back on his back and see how he takes to the new formula.

Obviously, I’m hopeful and optimistic, as that’s all a parent can be. It’s not a matter of trying to “fix” Ben, only to help him be as comfortable in his own skin as he can be, and lately he has not been. And that absolutely tears me up inside. So the journey continues, 2 steps forward and 1 step back… but always moving forward.

Respen-A: a new treatment (and hope)

Medical, Treatments

January 29, 2011

2 comments

Tags: ,


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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.