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.