Posts tagged "GFCF"

A long-overdue update…


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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.

My son the cheater


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Tonight was an exceptionally great night with Bennie… With he & his brother having been at his mom’s since Friday, I was very excited to go pick them up after work and bring them back to my house. As is the norm, Ben was a bit angsty when I picked him up (transitioning is not so easy for him, plus I like to think the emotional excitement of seeing me and coming back to my place is a bit overwhelming for his senses) so he’s usually a bit loud on the drive back.

Once we got back to my house and the boys gave my fiance their big hugs and settled in for dinner, I was captivated by Bennie… He’s always a great eater, and loved the tasty GFCFSF beef veggie stew we made for the boys in the slow cooker, but the usual hyperactivity or giddiness that typically accompanies mealtime wasn’t present tonight. He wolfed his food down (per usual), but was quiet and happy while doing so. When he received his usual prompts to “eat slowly” (geez that kid can eat), he didn’t bark back as he normally does, but listened… and ate slower. He was also tickled pink to get to drink some new chocolate almond milk (2 glasses worth!)

Once dinner was done, I was so excited to surprise him with the special treat I had found for him: hemp vanilla ice cream! I’d tried every variety of non-milk ice cream I could find – rice, soy, tofu, coconut – but each would cause either physical reactions in him (rashes) or lead to emotional outbursts. I’d read about “Tempt,” a hemp-based ice cream, and knew that he had seemed to enjoy hemp milk in the past, but hadn’t been able to find this product at any of my usual shopping haunts. However, I was recently able to pick some up at Whole Foods and I was very excited to get to let Bennie try yet another type of his favorite snack food. (You wouldn’t believe how rough it is to not be able to let your kid eat ice cream – every kid should get to enjoy that simple pleasure…)

His eyes lit up, he raced over to the table with his bowl with eager anticipation, and he devoured it. Then the attentive wait began… Rash? Hyper? Screaming? I am so overjoyed to say that none of those typical symptoms appeared – the Holy Grail of GFCFSF had been found!!

Even better (icing on the proverbial cake): we also noticed that he was more communicative tonight than usual, asking questions and putting longer sentences together. For example, when I showed him the ice cream, he asked me where I got it from. Read that again: he asked me where I got it from. Could this be the (positive) effects of Respen-A (which he’s been on for 10 days now?) I hesitate to get too excited or read too much into it just yet, but it was a very positive observation nonetheless.

We then took the boys to play in the playroom, with Bennie and I playing “Headbands,” a fun thinking game I got him for Christmas in which the players put a plastic headband on their head and place a picture card in it (without looking at the image) and then ask for and respond to clues from the other players. It’s been fascinating to watch Ben’s mind work as we feed him clues and help him guess “who am I?” and then how he tries to do the same for other players. He was on fire tonight, banging out correct answers to his cards, but my proudest moment came when he wasn’t sure what card he had on his head, but had the presence of mind to lean back and look at his reflection in the glass cabinet door beside him. That amazing little bugger cheated! I cannot express how proud I was in that moment – he had the realization that he could see what the card was and then use that (cheating) edge to correctly say what card he had in his headband. I wish someone could have taken a picture of my face at that very moment – it was a mix of excitement, glee, pride and sheer exuberance.

We then went and tackled his homework – 1 sheet of simple math addition problems and 1 sheet of reading comprehension. He nailed both – more calm and focused than I think I’ve ever seen him while doing homework (no frustration or anxiety whatsoever.) I swear he was more thoughtful and engaged than usual, especially with the reading comprehension, which is never easy for him, as he can read pretty much anything, but doesn’t usually retain the knowledge of what he read… but tonight seemed different. Tonight he was able to correctly understand and assign different names under the categories of “people, pets or places.” I was proud, and amazed.

Finally, we finished the night by bouncing a plastic ball of the wall back and forth, with him knocking it out of the air and/or kicking it (usually straight at my head), and one time he even motioned for me to cover up and protect my face before he kicked the ball at about 100 miles an hour at me. Again: another indicator of Respen-A helping his brain be more cognitive? Perhaps, but another exciting observation either way.

What a fantastic, amazing evening on all levels. A happy, beautiful kid got to enjoy some tasty kid treats (chocolate milk & ice cream!), had fun (and cheated!) at a game, hit a homerun with homework, and did not display any of the too-typical outbursts of emotion we typically have to tip-toe around in an effort to avoid.

Tonight was great, truly great. Here’s to working towards a repeat tomorrow, and the day after that, and the day after that. I’m not so deluded to expect that this will be the norm every night, but tonight proved that his anxiety and irritability are not constants, but rather seem to be reactions… So continued attentiveness to both his diet and our interactions with him can only help to make tonight more the norm.

And that is ridiculously exciting.

Soy bad

Diet

February 7, 2011

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While I have long since taken this knowledge for granted, most people are surprised to find out that many kids on the Autism spectrum have major dietary sensitivities – especially to gluten (wheat) and cassein (milk) – and that removing those from their kid’s diets (the infamous “GFCF diet”) can result in remarkable behavioral improvements in their children. I’ve seen it first-hand in Bennie, who has been on a GFCF diet for years now. Before (and now, if something he shouldn’t have inadvertently slips into his diet) the result could be remarkable: near-immediate mood changes (typically extreme hyperactivity and/or irritability), digestive problems and – especially when it comes to milk products – a physical rash (usually on the insides of his elbow joints and cheeks.) There’s an entire industry of GFCF products available to allow kids with that type of dietary sensitivity still be able to eat and enjoy “regular” food (as well as kid-friendly junk food), so it’s actually not as difficult to manage and maintain as one might assume.

Further complicating this, however, is that some ASD kids also have soy sensitivities. A great overview can be found here, from which I’ll excerpt the following:

Soy beans are broken down into powder, oils and additives that add protein and flavor to commercially prepared foods. Soy is one of the eight most common food allergens in the United States, according to the University of Maryland. Soy intolerance differs from soy allergy. A true soy allergy involves the immune system recognizing soy protein as a foreign substance and trying to fight it. Soy intolerance does not involve the immune system. Instead, the body may have trouble digesting soy or find it irritating to the digestive system, resulting in uncomfortable symptoms.

Ben is one of those lucky kids who also is intolerant to soy, which does necessitate the need for me to be far more informed as to what GFCF foods I buy for him (as soy is a common substitute in GFCF foods.) As part of my new/more recent learnings into the wild world of Autism, I discovered that many GFCF products may not contain (regular) soy, but do contain something called soy lecithin:

Soy lecithin (E322) is extracted from soybeans either mechanically or chemically. It’s actually a byproduct of the soybean’s oil. Some people use it as a supplement, because it has a high value of the nutrient choline. Choline is good for heart health and brain development. But that’s not the reason soy lecithin is used as an additive in foods. It possesses emulsification properties. This means it can keep a candy bar “together” by making sure that the cocoa and the cocoa butter don’t separate. It is also used in bakery items to keep the dough from sticking and to improve its ability to rise.

Apparently, most people with soy sensitivities have no issues with soy lecithin… however, it would appear Benjo is not one of those lucky few. On Thursday, I gave him a couple new GFCFSF “Oreo”-like cookies I bought for him (again, trying to let him be a kid and eat semi-typical kid junk food.) The cookies did contain soy lecithin, so this was kind of a real-world experiment to see if he would have a reaction, what kind, how bad, would his diet have to be even more restricted, etc.

About an hour after eating the cookies (just 2 small ones), a light rash appeared on his inside elbow joints and cheeks – not bad, but noticeable. If that was as bad as a reaction as he’d have, however, I thought this could mean he could eat from a wider variety of foodstuffs.

Not so lucky, as it turns out.

Saturday night was a rough one. His mom reported to me that he had a really, really “off” night – very irritable, emotional, sad… much more than usual (i.e. outside of what we might consider “typical” outbursts by Ben.) I initially expressed skepticism that it could be related to the soy lecithin, as a few days had passed from when he ate the cookies (just 2 of them, dammit!) But his mom assured me he’d not eaten anything else outside of his regular GFCFSF diet, and as it turns out, bad reactions to soy lecithin can typically come many days after ingesting it:

Intolerance to soy protein may occur immediately or occur several days after ingestion. You may experience changes in mood or behavior after consuming soy protein if you are intolerant. Symptoms may include irritability or nervousness or depressed mood, according to a 2007 article in “Living Without Magazine.” Infants intolerant of soy may exhibit fussiness, irritability or discomfort.

Hard to argue with that. Unfortunate – not only that I’ll have to go through my pantry and toss out numerous tasty-looking foodstuffs I’d recently purchased for my Bennie, but more importantly it means that Bennie may not get to enjoy quite as wide a variety of foods.

Still: it’s a positive, nonetheless – now I know more of what he can’t eat, and I can shop (and, hell, bake/make) yummy foods that he can eat, enjoy and not have bad reactions to.

The never-ending learning process continues…