A long-overdue update…

It’s been some time since I last posted to the blog, and not for lack of desire to do so. Truthfully, I found that I needed to pull back a bit from my immersion into all things Autism-related, as it was becoming all-encompassing for me, both mentally but also emotionally – i.e. I would get so excited about this article, or this possible treatment, or this something to try, and then would find myself getting worn down when I saw Ben was having a bad day, or the positive changes I’m so desperate to help him realize weren’t revealing themselves quickly enough (a relative term, I admit.)

That being said, my quest continues and my commitment is unwavering – I just need to learn to do a better job tempering my excitement, expectations, hopes and emotions as they relate to working with and for Bennie to improve all things in his life.

So, here’s what’s been going on (commence braindump):

Respen-A: Ben’s now been on Respen-A for several weeks and while he hasn’t experienced any negative side effects from the treatment, admittedly we’re also not seeing any dramatic improvements. In the first couple weeks, I could swear I noticed more complicated speech and questions from Ben (i.e. “Where did you buy it from?”), but (full disclosure) his ABA therapists had been focusing on “W” questions around the same time, so it’d be tough to credit that solely to Respen-A. Still – it hasn’t been hurting him any, and the FAQs associated with Respen-A do state that some kids can take several weeks for the positive improvements to surface… and other parents do a “vacation” from Respen-A for a few days (i.e. take a weekend off) to help gauge the positive effects of teh treatment (by removing it and seeing what, if any, repercussions there are as a result.) So we’ll likely try that soon, just to see.

Also worth noting is that the doctor who created Respen-A has come up with a new formula for it that they’re seeing some positive early results from:

We currently are working on a new formulation of the Respen-A to try and increase the effectiveness we have seen thus far. The new formulation is called 4X12C at this point (nothing of importance to you, but this is how you will hear it referred to during the trial). A few parents of long term Respen-A users have tried this new formulation and tested it in their children, and up to date, they are seeing much better results than with the original formulation of Respen-A.

So we’re likely to try that and see if we notice any positive improvements/results.

FOS: In all my reading online, I read about how it’s typical for some ASD kids to have “gut issues” – that is, build up of bad bacteria and/or yeast in their stomachs, which can leak into their bloodstream and affect their personalities/brains (“leaky gut syndrome.”) I’ve seen first-hand how Bennie can react within minutes to eating something and then get incredibly hyper and/or stimmy (giggling uncontrollably, hyper, bouncing around), so this seemed to resonate with him. As a result, we’ve put him on a daily dose of prebiotic FOS (fructooligosaccharides):

FOS: a Supernutrient Documented to Rebuild Intestinal Flora, improve mineral absorption, and more
• A naturally sweet, indigestible fiber derived from chicory roots, FOS (fructooligosaccharides) are one of the best-documented, natural nutrients for promoting the growth of Lactobacilli and bifidobacteria bacteria, a key to sound health
• Minimal impact on blood sugar levels
• Increases populations of beneficial bifidobacteria in the colon
• Reduces populations of harmful bacteria, such as Clostridium perfringens
• Improves calcium and magnesium absorption
• Improves liver function

Thus far, no negative side effects as a result, and it’s just 2 more (large) pills (poor) Ben has to wolf down in the morning (kid takes 10 pills every morning – wow.)

Strict GFCFSF diet: Probably the biggest, and most positive change, we’ve made when it comes to Ben these past few weeks is a much stricter adherence to a gluten/casein/soy-free diet (especially cutting out the soy.) Now that I’m reading the ingredients label of every single thing he eats (wow it’s amazing how many things you can find soy in), the frequent rashes and/or intolerance-triggered outbursts have basically been reduced to zero. There’s still so many yummy, healthy foods he can enjoy and, in fact, the menu choices have expanded dramatically now that I’m shopping at places like Gluten Free Specialty, Whole Foods and Sacramento Natural Foods Co-op – Ben’s now enjoying homemade pizza, tasty chicken or beef tacos, even friend chicken (and soon: perogies!) and he’s loving it. The kid can eat (I don’t know how he stays so skinny, but I’m envious, I’ll say that much.) Ultimately, it’s just great to see that we’ve managed to cut out the negative reactions associated with the food he’d previously been eating (SOY), and to see him enjoy so many tasty dishes.

Therapies: In the question to seek out whatever additional help there might be, we started to go with Ben to a therapist who supposedly specialized in kid and ASD/ADHD-related issues. She meant well, and I’ll definitely credit our (few) sessions with some eye-opening insights (mostly due to Ben’s mother & I talking about how we handle/do things differently at our respective houses so we could standardize to provide a more level norm for Bennie), but after just 3 or 4 sessions it became clear that this really wasn’t going to be all that helpful for us – and especially Ben – so we moved on.

We then visited with a child psychologist (also specializing in ASD/ADHS issues), but after he spent a 1/2 hour 1-on-1 with Ben, he regrettably informed us that due to Ben’s limited abilities to communicate (either expressing or understanding), he really couldn’t help “crack through” to Ben and help work through issues with him.

But the search continues – we’ll find someone.

Allergist: long (long) overdue, but Ben was finally tested for the full suite of allergies. (I would love to regale you all with how epically BAD the allergy testing went and how it took me + 3 other people to hold Ben down as he screamed while getting blood drawn, but truthfully I’d rather just forget about the whole awful experience.) Turns out Ben has a mild allergy to eggs. That’s it. Nothing else. On one hand, I wasn’t surprised, but on the other hand, what about gluten? Soy? Milk? The allergist explained that just because he doesn’t have a physical allergy to these things, it doesn’t mean he doesn’t have an intolerance to them (see “leaky gut” above) – so: we remain on the strict GFCFSF diet. But good to know he won’t be going into anaphylactic shock anytime soon.

Doctor: we had our quarterly session with Ben’s specialist (a neurologist focusing on ASD kids) a couple weeks back and he could see that Ben was doing “better” compared to our last visit. He suggested not changing anything (treatment or prescription-wise) for the next 3 months, to give his brain & body a chance to level out and process the recent changes in treatments. I realized then – and in light of the many things we’ve tried/changed in Ben’s treatments these past couple months – how much his initially being on Risperidone helped him overcome his stimmy and obsessive behaviors… but the side effects of up’ing those meds are just too damn scary to risk (in our minds)… so the hunt continues.

OCD: the one area that really hasn’t improved, and has stayed regrettably regressed, is Ben’s uncontrollable obsession with public restrooms (flushing toilets and running water in sinks) and the stimmy repetition of songs, tv show songs & dialogue, etc. These were all things that were really pulled into check when he first went onto Risperione, but now that his body has built up a tolerance to his current dosage, they’ve come back full force. And it’s really hard – formerly “safe” places like our weekend forays to Sky Zone or Target have now ended with me literally carrying a screaming, crying, kicking kid out while he wails for the bathroom and passerbys pass judgment with their searing glances (just say 1 thing to me, I dare you.)

We’ve talked about this with Ben’s ABA lead therapists, who’ve suggested going back to doing social stories every time we go out anywhere, even if it’s to normally “safe” places:

Social Stories are a tool for teaching social skills to children with autism and related disabilities. Social stories provide an individual with accurate information about those situations that he may find difficult or confusing. The situation is described in detail and focus is given to a few key points: the important social cues, the events and reactions the individual might expect to occur in the situation, the actions and reactions that might be expected of him, and why. The goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question.

As well, I’ve noticed some (hopefully positive) responses in Ben when I tell him “no more bathroom talk” when he brings up restrooms in conversation – this seems to register with him, and while he may not stop entirely, he pauses for thought, acknowledging the request, so that’s something. I’ll take whatever little, tiny wins I can get.

Super Proud Daddy Day:
the most positive thing I have to share is March 10th, 2011 – on that day, Ben did me proud in 3 separate ways:

  1. He had to do a school project “all about Ben” and in the portion where he had to write down what he wanted to be when he grew up, he wrote “Daddy.” Wow.
  2. At his school assembly, Ben was presented with an award for “Citizenship & Character” (the only one in his class who received the award) – you should have seen the smile on his face when he stood in front of the assembly to receive his award!
  3. Unexpectedly, I received an IM from Ben’s mom mid-afternoon, which began with “Hi Daddy – it’s Ben.” I then proceeded to have an instant messaging conversation with Bennie with him doing the typing! (obviously with his mother’s help, but his answers & his typing!) I was astounded. And beaming.

So there’s an update over the past couple weeks – lots going on, lots of positives, but many miles yet to go. Still – it’s about the inches won, not the game, and step by step we’re getting there. He is, and remains, the happiest and most loving kid on the planet, and I am the luckiest father as a result.

3 Responses to “A long-overdue update…”

  1. Heather says:

    Have you ever tried inositol with Ben? My son used to have very rigid behaviors and OCD traits as well as a lot of highs and lows with his moods, and several meltdowns a day! We started him on GABA which helped level out his moods and Insositol, which really helps control rigid behavior.
    We saw a huge change in his OCD and severe mood swings. These are both natural supplements that you can buy in a health store or Kirkman Labs sells a product that is a combo of both.
    Probiotics are great, a lot of ASD kids suffer with all kinds of horrible gastro issues, healing the insides is such an important part of helping our kiddos. Vitamin B12 is a great supplement for them too. Have you consulted with a DAN doctor?
    I really feel ya about having to step back, I was the same way, immersing myself and overloading my brain, eventually I burned out and took a long break too. You are doing a great job, Ben is a lucky kid :)

    • Ben's Dad says:

      Wow – I’d never heard of either of those before — thank you so much! Gonna be Googling both of those tonight and seeing if they could possibly be of help to darling Bennie… Thank you very, very much for taking the time to share what you’ve learned with your own children – so appreciated…

  2. Bridy says:

    Hi

    I can relate to many of the things you are going through. Our son has Asperger’s (Tourette’s, OCD and Anxiety to name a few) and although he is HFA life is a struggle every day.
    We have also been told he had ADHD, (which I am contesting) but that is a story for another day. With the ADHD possible diagnosis I quickly ran to my library and took out the book, “The Truth About ADHD and other Neurobiological Disorders” This books is amazing! up to date as of January 2011 and opens your eyes to many things, including Asperger’s, OCD, Tourette’s and of course ADHD to name a few.
    It talks shortly on Candida(yeast over growth) PANDAS, (streptococcal infections causing neurobiological disorders), also simple things like, Omega 3, iron, iodine, and zinc deficiencies causing neuro disorders, along with resistance to Thyroid Hormones. I highly recommend the book even if your son doesn’t have ADHD, it confirmed everything I read on the Internet and made me realise I wasn’t crazy for thinking these things could be true(PANDAS especially) Our son suffered from so many ear and throat infections as a toddler that we will always question at what point did these infections either cause or contribute to how he is now.

    I also wanted to mention that you can get food intolerance testing done. It is amazingly accurate if you go to a good source like a natropath.

    I have to also suggest some supplements that we have seen amazing results with. Keeping in mind every child is different you may want to try them if you see no changes with Ben’s current list of vitamins and prescriptions.

    We give our son a magnesium supplement from Peter Gillham. When his Tourettes was at a high I was desperate for some natural relief and everything I read said that magnesium is the key. We saw amazing results, even his teachers who knew nothing of us giving Dorian the magnesium mentioned how much he changed. Magnesium is also great for attention issues but thankfully it was our ticket to calming the tics.
    This is the link to Peter Gillham’s Magnesium. http://www.petergillham.com/wp/2009/11/natural-calm/
    I just give my son 1tsp of the powder magnesium natural-calm, the liquide has a nasty preservative I stay away from.

    I also did a lot of research on probiotics and find that HMF Neuro to be the best, it addresses the Candida issue.
    I always buy mine from Rockwell Nutrition.
    http://www.rockwellnutrition-canada.com/HMF-Neuro-by-Genestra-NON-RETURNABLE_p_802.html
    There is an american site to buy in the US.
    You just put it in your sons juice.

    I alsot recently bought a super Omega3 fish oil
    http://www.rockwellnutrition-canada.com/Super-EFA-Liquid-by-Genestra_p_269.html
    I can’t say I am seeing any results, but we have just started giving it to him and if anything it is good for him to have anyway even if it doesn’t “change” him.

    We also do a multi vitamin, also made by Genstra, it has half the amount of iron that my son needs per day. I can’t say he loves the vitamins, but thankfully he does take them when I ask him to.

    The Great thing about rockwell Nutrition is you can type in Candida, or Autism and it will come up with products for that condition.

    I hope I have not been too annoying with information. If you have any questions or thoughts please feel free to e-mail me.

    We have considered doing the GFDF diet, but we have decided to do the intolerance testing first to see what the results may be. Keep in mind, if you do decide to do testing you have to start feeding your son gluten and dairy to get it back into his system to see how his body reacts to it from the testing.
    The blood tests are hopfully going to be coordinated so we don’t have to do too many. One time we tried to get blood drawn and he ran out of the building and down the road. My husband had to chase him down the street to get him back, needless to say we are still waiting to get some blood drawn for some testing.
    He is an amazing little boy(6 years old) who has such a loving spirit and I learn from him every day about how hard it must be to live in a skin that is so different from others. He is the brave one and I have to remind myself that he is struggeling more than I could ever understand.

    Bridy

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