Metabolic Connection?

After we learned of Ryan’s apraxia Dx, and then learned the more traditional resources were suggesting intense therapy and nothing more, I started what I like to call the “research rampage” to find additional ways to help Ryan.

I consistently came across the theory that there may be a connection between the function of the gut and the brain in kids (with autism, apraxia, etc).  No, it’s not mainstream, but EVERY mom you talk to swears it’s there, and most every “alternative” doctor will agree as well (think naturopath, DAN docs, nutritionists, even some chiropractors).  If you’re at all open to this idea, and even if you’re not, I’d encourage you to read the book “Healing the New Childhood Epidemics” by Kenneth Bock.  While I don’t subscribe to every thing he says, I do think he’s on to something and I believe his perspective led us to suspend our disbelief about some strategies we might have not otherwise tried.  The same strategies that have made a great impact on Ryan.

Additionally, I came across the following Malabsorption Study 2009 that suggests there may be issues in the gut that further prevent the brain from functioning properly.  And, in addition to therapy, there may be nutritional interventions that make a significant impact on these children.

When I first read the study I remember praying that my son fell into this category; hoping that maybe Ryan had some wierd allergy that caused him to have apraxia symptoms.  I knew it was a long shot, but I was desperate.  We ran the same labs on Ryan and what do you know…he matched up with many of the issues in this study.  Low carnitine, gluten sensitivity, other food allergies, some deficiencies.  Could it be?

We tried supplementation for some of the deficiencies, but Ryan had a 6th sense when it came to hiding supplements in his food, so we could never get them in him. We considered gluten/casein free.  I SOO did not want to go there.  I know many people do it with great success, but quite frankly, I dreaded the very thought.  I still cringe when I think of it.  It was my goal to exhaust all other efforts before we went there…and fortunately we found NutriiVeda which helped.  Additionally, we recently started NAET treatments that I believe are helping to heal Ryan of his allergies.  Our hope is that the combination of things we’ve tried and continue to do will be enough to heal his gut and keep him on track. (more on that later)

All of this to say, we saw this study and read the Bock book and started to believe there might be a gut/brain connection. We then tried:

1.  Probiotics:  Ryan went through a pretty awful first week.  We almost stopped them, but decided to hang in for a full week.  After that, we realized he was probably going through some sort of detox.  Once adjusted, we saw improvements.  His eczema lessened and even went away for small periods of time.  He was less constipated than normal.  Still constipated, but not as bad.  He seemed a bit happier and even made a little progress with language/articulation (nothing major, but progress still).  Okay – so now we have fish oils and probiotics making an impact…hmmm.

2.  Metabolic Testing:  We then decided to do the typical DAN testing protocol:  OAT test, Comprehensive Stool Panel, Gluten/Casein Peptide Test and Comprehensive Allergy Test.  From those test results, we learned Ryan had a yeast issue in his stomach, he was basically allergic to EVERYTHING and every alternative to everything (both IGE & IGG).  As well, there was evidence suggesting he may suffer from leaky gut syndrome which really clicked with Paul (the hubster) and I.  Based upon these results, in addition to fish oils and probiotics (which everyone should take daily anyway), the DAN doc recommended we add in a digestive enzyme and do a 2 month yeast treatment with Nystatin.

2.  Nystatin & Digestive Enzyme:  WOW!  We had seen great results from NutriiVeda – I mean wonderful.  But when we treated for yeast and added in the digestive enzyme, we saw another big jump.  The biggest results seemed to be Ryan’s appetite and willingness to try new foods. He had self-limited his foods to a VERY small number and refused to try anything new for quite some time.  NutriiVeda helped with this some, but not 100%.  The first week on Nystatin & digestive enzymes again, Ryan went through a detox.  The first day, in fact, he vomited all day and it smelled like he’d been at the local brewery having too much fun.  He got random rashes, blisters on his lips and his bowel movements were a sight to behold.  But, he came out on the other side even better.  We could tell, for the first time in who knows how long, his stomach wasn’t hurting as much.  I am positive NutriiVeda helped with this a ton.  We started NV the day after we submitted the labs for the DAN tests.  We’d seen such great progress for the 3 months before we started Nystatin & digestive enzymes, but I think the Nystatin/dig enz really took it to the next level in regards to helping heal Ryan’s stomach.  Maybe NutriiVeda would’ve eventually dealt with it all – who knows.  But I’m glad we tried the additional treatments.  If you’re interested in learning more, there is really great information on digestion and enzymes at www.enzymestuff.com take some time and check it out.

That’s the extent of supplementation we’ve tried that’s worked so far.  Currently Ryan is on fish oils, NutriiVeda, a probiotic and digestive enzyme.  The only two that I refuse to let him go even a day without are the fish oils and NutriiVeda.  The other two are nice additions but not as critical to me.  I do give them daily, but I don’t freak out if I forget.  If you have anything else that has worked for you I’d love to hear/share with others!

7 Responses to Metabolic Connection?

  1. jennifer Kozek says:

    Thank you soo much as we continue to treat our son with global apraxia. L’Glunamine will also help to seal the itenstinal walls and reverse leaky gut. So much i am leaning. My sin is 5 thank god we are finding all this now.

    • svraciu says:

      Interesting -thanks for sharing. I constantly worry about leaky gut and how to address it. I will certainly be in touch if we choose to go down the path of looking in to L’GLunamine.

      Thanks for reading the blog and posting! Isn’t it great that we can all share and are learning so much for our kids – mostly online! I often wonder where Ryan would be if it weren’t for us having access to all of this information these days.
      Sharon

      • Jennifer Kozek says:

        Thanks for replying. I have passed this information to all therapists, special ed teachers and friends with children with Apraxia related disorders. Including, the president of the CT chapter of the Apraxia Research. My dad was recently diagnosed at age 68 with leaky gut and he has suffered with learning disabilities, “dyslexia” etc. all these years. I would make sense that Evan may have it too. My dad also swears by Tumeric “spice” for reducing the inflamation all around, along with L’Glutamine and digestive enzymes. Apparently with the L’Gluatamine it allows him to eat gluten and dairy in moderation. He says it has saved his life. It is absolutely amazing that of the 20 professionals: speech language pathologists, OT’s PT’s no one have ever heard of the link.

        Thanks again.

  2. Jim says:

    Hello. How does one go about making an official diagnosis of leaky gut syndrome? What kind of doctor? Also, what kind of doctor would run the type of metabolic/casein/stool testing you had done? Thanks a mil! It’s encouraging to hear someone making progress.

    • svraciu says:

      Hi Jim.

      Hope this letter finds you well and my sincerest apologies for getting back to you in such an UNtimely manner. We went to a metabolic specialist, who happened to focus efforts in Autism and special needs. We had all of our tests run there. Many people see DAN doctors for this as well. Any general doctor can order the metabolic/casein/stool testing, but they might not necessarily know what to do with the info in the way you’ll want them too. I’d look for someone who subscribes to the type of thinking I’ve outlined, as many many traditional mainstream doctors didn’t necessarily believe there was a tie between the metabolic function and how the brain works. I dug and dug until I could find institutes or docs that were supportive of this information and knew what to do with it. I’d reach out to your special needs community (especially families in the autism community) and they’ll have a host of doctor reco’s. Best of luck!

  3. Jill says:

    Hi!

    I hoping to get some opinions on where we should go from here. My son, age 5, has autism. We had him on NV from Jan 2013- March 2013. We saw great results with it. The reason we stopped was because he was accepted into a biomedical grant program. It was 90 days and they gave use pretty basic supplements and two visits to see a DAN dr. He was not able to be on any other products, so we reluctantly stopped NV. We did a multivitamin, fish oil, digestive enzymes, probiotics, that type of thing. We just received his comprehensive stool results and all was pretty normal with a few levels that were off. The DAN recommended we start Fluconazole, Lactoprime Plus and Trufiber. He said ” overall testing looked good, but the lower PH and higher sigA suggest yeast could be an issue.” My son is very regular, doesn’t have any allergies, no skin issues and no outright GI issues. I am hesitant to start this because we just started NV again last week. I feel like the suggested treatment may be a “just give it a try” sort of thing. Will NV most likely help with the yeast over time? If he does have yeast I don’t think it’s a major problem bc of the lack of symptoms. I am nervous about the antifungals and would rather stick with NV, but I don’t want to not treat the yeast if NV wont take care of it. Thanks so much for any advice!!!!

    • svraciu says:

      Hi Jill! So sorry it’s taken me some time to return your message. Honestly, we don’t know for certain that NV helps specifically with yeast or not. Although it sounds like you are not sure your son even has a yeast issue in the first place, right? What we do know is that NV does have a detox component to it. The first two weeks my son was on it (and this is true for many many kids who have tried it) it was almost as if he was going through detox. NV gets really deep down into your cells/body and some of the ingredients in NV specifically help flush/rid the body of those toxins that, for whatever reason, the body couldn’t do on it’s own. Ryan was cranky, moody, and down right miserable. But, once he made it over the hump we saw major results. We also did a yeast treatment, however we had Ryan’s blood/stool tests done the day before we started NV. It took something like a full month to get the test results back and by then we’d been on NV for a while. We still followed through with a yeast treatment that I believe did further detox Ryan’s system, however we were told he DID have a definite yeast issue. After seeing the detox Ryan went through on the antifungal, I remember at the time my husband and I wondered if NV had done a “round 1” detox of yeast and the anti-fungal finished it off. We’ll never know for sure, but b/c Ryan’s detox with NV was as significant as it was with Nystatin – we considered the possibility.

      If I were you – I’d follow my gut on this one. By no means can it hurt to try NV for a few months, then go back to the DAN reco’d treatment plan. You could even try NV for a few months, then see if your DAN would be okay if you added his treatment alongSIDE NV instead of replacing it (like we did). I know many parents were concerned that NV would CAUSE or worsen a yeast issue, but we’ve been told that the chromium, molybdenum, iodine, selenium, and manganese yeast found in NV are all inactive and could be taken even by someone who has a Candida problem.

      I can’t tell you which way to go for certain, but if your DAN isn’t convinced yeast is a major issue in the first place (and you aren’t convinced either) then try something you’re comfortable with. We know NV can’t hurt your son at the least.

      We never had my son tested for yeast again after the initial testing and subsequent Nystatin treatment. So I’m not sure where he netted out in regards to having a yeast issue or not. However, since he has no major signs/symptoms of a yeast issue and is functioning so very well now we haven’t really worried about it.

      If you feel like you should try the yeast treatment I can tell you that Nystatin was very safe. It caused some nasty detox effects, but all in all I think it’s considered one of the safer antifungals. It doesn’t get absorbed into the bloodstream, stays in the intestinal tract and virtually 100% gets eliminated in the feces. I am not sure how Fluconazole works so I can’t speak to whether or not it gets absorbed in the blood stream.

      Best of luck! I’m interested to hear back on what you decided to do and how it’s going.
      Sharon

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