A return to Respen-A


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

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.

14 Responses to “A return to Respen-A”

  1. Ben's Dad says:

    An interesting realization: when I called in to get a new batch of Respen-A shipped out to us, the pharmacy said we actually had been shipped the new blended chord formulation back in April (news to us.) What’s interesting is that this could time out very well for the noticeable increase in Ben’s OCD/stimminess/outbursts in May – if he was indeed (unknowingly) on the new, stronger version of Respen-A, and was NOT taking the recommended bit of gluten each day to help, AND was taking a full patch (instead of the 1/2 that’s recommended), then that could be why we saw such an increase in his behaviors…. Interesting. And, in a weird way, reassuring, in that THIS could explain them, which means we can work through/around them going forward (smaller dosage, make sure to supplement with Inositol instead of gluten, etc.)

    I’m feeling much more optimistic today than I was last night.

  2. Antoinette says:

    Have you tried getting Ben into the MIND Institute? I know you used to go to Sutter. Is his pediatrician helpful/knowledgeable about herbal supplements and vitamins? We personally found both the be great resources. Much better than Google.

    • Ben's Dad says:

      Thx Antoinette – appreciate your suggestion. I didn’t mention it, but the MIND Institute is definitely another avenue I want to pursue as well. Amazing that this fantastic resource is in our backyard but, to date, we’ve never really explored what help they may be able to offer us. Yet.

      As for Ben’s pediatrician, his actual pediatrician is probably very open to herbal supplements and vitamins, whereas his specialist/neurologist is not. Unfortunately. That’s why I’m now thinking of moving away from the latter and talking to a DAN doctor – see what additional information/recommendations we might be able to glean from that. Here’s hoping. Thx again.

  3. Antoinette says:

    P.S. A lot of times once someone is taken off a medication it isn’t as affective when reintroduced. Just something to keep in mind.

  4. Lindsay says:

    Hello,

    I have been searching the internet for information on Respen-A. I am thinking of asking my doctor for a prescription for my 3 year old son. I was curious as to how your son has been doing on Respen-A since you last posted. I really appreciate your help! We are new to this process and are trying to help our son any way we can.

    Thanks!

    • Ben's Dad says:

      Hi Lindsay – thanks for your comment. I apologize for not keeping this blog more up to date (as I’d originally intended to): it’s been a hectic summer and early start to fall and a combination of laziness and exhaustion has combined to keep me away from posting… but I will remedy that soon and post a new update shortly.

      With regards to Respen-A, we continue to see positive results and I highly encourage you to reach out to Dr. Elaine DeLack at either http://www.respena.com/ or https://www.facebook.com/pages/Respen-A/123142187742874 — she’s incredibly helpful, supportive and a huge fountain of knowledge (since she came up with Respen-A in the first place.) I’ve always found her to be wonderful with replying to my questions (via email, phone or Facebook) — I’m sure she can help you explore whether Respen-A might be right for your son…

      Thanks again for your comment and for reading this (dusty) blog…

  5. Leah says:

    Hello,

    “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.”

    Wow, this sounds incredibly familiar. We had the same issues after taking Brody off of Respen-A two summers ago. I believe the behaviors were due to the high amounts of calcium, not the Respen-A itself.
    The calcium issues outweighed the positives we were seeing with Respen-A. If Elaine DeLack could figure out a way to lower the calcium amount needed, we would try Respen-A again.

    • Ben's Dad says:

      thanks so much for your comment and sharing your experience – i actually didn’t realize calcium could have such a profound negative effect, but am very glad you shared that. definitely something we should/will look into….

  6. Denise Cooke says:

    I am from Canada, my 14 year old son is into full puberty, over six feet tall and going from 0-60 at things that never used to bother him, I discovered the Respen a when investigation Inistol for behaviors. I have an appt with the doctor to getr a prescription. His anxiety level is high. Do you recommend asking for help from Elaine? Wondering in the dark about this, school wants him on Reseradole or similar. any comment would be welcome

    • Ben's Dad says:

      hi denise – we’re also from canada! (and apologies for the delay in replying…)

      i would definitely recommend reaching out to elaine to find out more about respen-a – she’s a fountain of knowledge, and whatever you can find answers to on the respen-a web site or facebook page she can provide via phone or email.

      as for anxiety, i feel your pain. we’re still dealing with that every day with bennie… the respen-a can help with that, but admittedly it hasn’t completely lessened the anxiety in ben. it’s helped, but not on it’s own – he’s also taking concerta (time-released ritalin) and risperidal… and this seems to be a good mix for him at this time. i’d prefer to not have so many meds coursing through his body, but i don’t want to rock the boat if it seems to mostly be working (at least keeping his anxiety mostly in check.) he still has his ramp ups, but thankfully is able to wind & settle down relatively quickly….and that didn’t use to be the case.

      best of luck to you!

  7. Kimberlee says:

    Thanks for your posts about your experience with Respen-A. I have an 11 year old Fantasy Aspie and he is just coming off Saphris, Tenex & Topomax. Efficacy had gone out the window. SPECT Scan at Amen Clinic was helpful, but as I reflect back on my decision to put him on pharmaceuticals….today I would have made a different choice. While I am very supportive of DAN protocol, I had a very negative experience with a DAN practitioner – hysterical, overpriced and insisted upon starting my (at the time) 4-1/2 year old on a ridiculous amount of supplements ALL at one time. He became very sick & dehydrated so decided to use my common sense and get back to basics. Our future was and is still about: detoxing him with bentonite clay, Fish Oil, BrainChild Nutritionals, Enzymes, Probiotics, Candex to battle yeast, GF/CF diet and for my guy who exhibits ADHD behaviors, Pharmagaba & L-Theanine.

    Just did Neuroscience transmitter testing and waiting for results. Coming off the meds was difficult, but he seems to be stabalizing. Most horrifying part of meds, is that he developed a twitch/jerking that some believe is merely a temporary tic, others believe more closely aligned with Tardive Dyskinesia. Either way, I have decided that the horrific side effects, brain fog, weight issues, cognitive impairment was simply not worth the price…..Good luck to you. Look forward to reading about your progress.

    • Ben's Dad says:

      thanks very much for taking the time to share your own experiences – it’s definitely a slippery slope when a parent starts to explore the myriad of “help” available out there, and it’s up to each one of us to do the best job we can of identifying, observing and reacting to each new treatment (even if they’re “natural”) for our darling kids… all the best to you & yours.

  8. Crimson Wife says:

    I stumbled across this post today after googling “DMG + hyper”. I gave my 3 y.o. her first dose of DMG this morning, and while she has been chatting up a storm (mostly echolalic but some spontaneous speech as well) she has been driving her siblings and I nuts with her hyperactivity. She is high energy to begin with so having her act like she’s had too many Red Bulls is not a good thing.

    We are seeing an integrative neurodevelopmental pediatrician (try saying that one 3 times fast!) at UCSF, Dr. Sanford Newmark. He did warn us that certain nutritional supplements can help with speech but also have the side effect of hyperactivity. The B12 shot was one in particular he mentioned this being a common problem. He said it’s a tradeoff between the speech and the energy level. We have our next appointment with Dr. Newmark in mid-April so he may tweak the dosage of the DMG.

    • Ben's Dad says:

      Thanks for sharing your experiences with DMG – we decided to stay off of it and go back to Respen-A, but admittedly DMG does remain “on the bench” for future consideration and a second attempt for us… Hope it goes well for you!

Leave a Reply