An update on my beautiful boy


Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

Warning: Illegal string offset 'status_txt' in /home/darkseid/walkwithben.com/blog/wp-content/plugins/share-and-follow/share-and-follow.php on line 1243

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.

4 Responses to “An update on my beautiful boy”

  1. Pam says:

    Thanks for the update on Ben, Blaine. So many parents would just give their child whatever the doctor prescribed in such a situation. Good for you for doing your own research and being cautious with what your little boys takes into his system. You are an outstanding father to him!

  2. Crystal says:

    I am about to wean my son from Respen-A, as I do not want to move ahead with the new Blended Chord formulation, due to the recommendations of reintroducing gluten. How did you go about weaning your son from Respen? Or did you go cold turkey? Did you see sleep disturbances when taking him off? This has been our biggest issue before when I tried to take him off of it. Thanks for any advice you can give! Please continue to post updates about your son! You’re doing a great job of fighting the fight!!

    • Ben's Dad says:

      Thanks for your kind words – so appreciated!

      We went cold turkey off of Respen-A and didn’ notice any big reactions. However, the new blended chord formulation may not require gluten after all – apparently, Inositol could do the trick. Be sure to check the Respen-A site for more details.

      Not seeing any big improvements on GABA, and DMG messed Bennie up, so I’m considering trying the new formulation of Respen-A…. We’ll see!

  3. Nathan Smith says:

    Hey Ben! By reading this post I get inspired. There is lot of lessons I learn from this post. I think doing your own research and being cautious for your kids, it’s a good idea. I’m planning to continuously visit here. Thanks :)

Leave a Reply