Posts tagged "GABA"

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.

An update on my beautiful boy


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Sadly, it’s becoming all too common that I begin my posts with a “it’s been quite awhile since my last update…” The reasons remain pretty much the same as in the past: on one hand, lots going on with Ben (and when I step away from the blog for a few weeks it’s somewhat overwhelming to think about trying to capture and document it all, which just becomes an endless loop the more time that passes), and also the realization that I don’t feel as compelled to share every single nuance and detail of what’s going on with Ben these days. There’s middle-ground, however, and that’s what I’ll try to focus on with this post. Where to begin…

In general
Bennie’s been doing great these past few weeks: happy happy happy, finished out his school year strong and with more awards for citizenship (which means others recognize just what a sweet, warm-hearted boy he truly is), and starting summer school starting next week. Usually that’s a recipe for disaster, as typically summer school is staffed by student teachers, with little organization and lots of chaos (recipe for disaster for ASD kids who need structure and routine in their days.) However, thankfully, Ben’s regular year teacher will be taking the reigns on Ben’s summer school class this year, which will be fantastic.

Ben also just “graduated” out of his ABA (applied behavior analysis) therapy. For the past few years – actually, pretty much since we moved to California – Ben’s been fortunate enough to receive in-home ABA therapy 4 days a week (provided by the excellent staff @ Learning Solutions and funded by ALTA.) Ben’s come so far over the years thanks to this intensive therapy – it’s amazing to think where they started (teaching him how to properly hold & use scissors and button his shirts) and now where he’s ended up (engaging in back-and-forth conversations, problem solving skills, reading and answering questions about what he just read, etc.) It’s also a bit scary, as not only has the therapy helped him every single day, but (frankly) it’s also been a regularly scheduled block of time 4 days a week that Ben could count on and we knew would fill his time. Now that it’s over, we’re going to have to fill the time and find new ways to engage Ben and keep his development moving forward. Thankfully, he will still continue his weekly “group play” group sessions @ Learning Solutions once a week.

OCD
While Ben’s overall mood continues to remain pretty much in check – i.e. he rarely gets upset and irate and flips out anymore (something that seems like a distant memory, but really was just a few months ago that he could absolutely fall to pieces and take up to an hour to regroup.) However, the OCD and perseverance remains – not too extreme, but noticeable, especially as his emotional outbursts subsided and these OCD tendencies (previously lurking more in the background, but overshadowed by the outbursts) were now able to come to the forefront.

Bennie had his quarterly doctor’s appointment with this ASD specialist/neurologist in late May, and we took these concerns to his doctor to get in his input. Almost immediately, he recommended putting Ben on Prozac. That was like a punch in the gut for me, as it seemed like a sledgehammer approach. I don’t doubt for a second that his doctor is knowledgeable and only has Ben’s best interests at heart, but given my concerns with the amount of pharmaceuticals already pumping through Ben’s body, and truthfully I went into this appointment thinking we could hopefully cut back the amount of meds he was taking… so adding a jackhammer like Prozac into the mix just knocked me back on my ass and sent my brain spinning. We talked it through with the doctor, took the time to understand his point of view and appreciated how he addressed the fact that any chances of negative side effects were dramatically outweighed by the likelihood of positive effects. Even still, I walked out of there in a daze… but confidently knowing that we were not going to get that prescription filled anytime soon.

New treatments
Instead, we decided to try some other treatments that I’d read had been effective in helping kids with OCD, ADHD and/or anxiety control their impulses (not to mention hearing from friends who had seen positive effects in their kids dealing with similar issues.) We finished up Ben’s last package of Respen-A, deciding to stop that treatment (as we hadn’t seen any dramatic positive results from it, unfortunately), take a week off, and then begin introducing GABA+Inositol capsules into his daily intake of horse pills (geez the kid takes a lot of pills, but does so like a champ.) Here’s a quick overview:

GABA is a neurotransmitter in the brain, thus it is an essential substance that supports proper brain function. GABA is naturally produced in the body from glutamic acid with the help of vitamin B6. Glutamic acid is an amino acid that helps decrease the activity of brain cells. GABA also works in synergy with other nutrients such as niacine and inositol to reduce symptoms of stress and anxiety. Some anti-anxiety drugs such as benzodiazepines stimulate GABA receptors, thus delivering the same relaxing and calming effect as a GABA supplement.

Basically, my thinking was it can’t hurt to try this first… see if Ben realizes any positive results… and if not, then consider going down the stronger (pharmaceutical) route. So we started him on a formulation called GABA Plus, which combines GABA with Inositol.

The first week, we didn’t really notice any big difference (and truthfully were wondering if we were perhaps seeing a slight regression due to taking him off Respen-A), but by the 2nd week (and slightly upping the dosage), the subtle-but-visible indicators started to appear. Yes, he still perseverated on toilets – going any place new in public immediately resulted/results in him asking if he can go to the restroom – but that’s kind of always been the case, and while it’s difficult to put a longer-term view on things (so hard to remember a month ago, let alone a year ago), summers are always tough for Ben, as school is out, routine is busted, and now ABA is done and his daily reality is changing… which is always when his toilet fixations ramp up. Anyway, the toilet fixation remains, but the stronger OCD tendencies we’d been seeing as of late – always hugging 3 times, aligning the kitchen chairs just so, getting upset if I didn’t throw a ball to him 8 times (and he caught it every time), etc. – appear to be vastly dissipated, if not gone entirely.

I can’t say for sure that these positive changes were solely the result of introducing GABA+Inositol into his body, but sure as hell it hasn’t hurt and the timing seems to suggest it’s helping. He’s still happy, he still sleeps like a rock, he’s more social and communicative than ever before, so it seems we may have a good mix of medicines, treatments and therapies on the go right now. The last thing I want to do is rock the boat, and that prescription for Prozac looms large in the background: a last resort, but also something I’m desperate to avoid if at all possible. I will say that if it/when it comes time to try, I will be positive about it – if it helps Ben, no one will be happier than me. Just right now, with other non-medical, non-pharmaceutical options available, I want to try those first before taking the big step into big meds. I also have purchased a literal library of books from Amazon over the past couple months, and now it’s long overdue that I dive in once more to absorb and learn all I can on new ways to help my beautiful boy.

So here’s to the summer – play dates with classmates, fun summer school, swimming in the backyard pool, trip up to visit Grandma, Auntie & cousin in Canada, and many more good things. Ben is still the happiest, most beautiful boy in the world and every day I look for ways to make his life that much better, easier, more rewarding for him. He makes me smile every single day. Every. Single. Day. I treasure him more than words can say.