A Ventography!

Just two moms letting off some steam

SUPPLEMENTS – OUR NEW NORMAL

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ANNIE’S STORY – PART FIVE OF TWELVE

The Gluten Free Casein Free Diet turned the lights back on for Annie, so I knew I had to keep going. Next up, supplements.

I decided to begin giving Annie a multi vitamin, enzymes, probiotics, and fish oil (EPA/DHA). After I pain stakingly made my supplement concoction, Annie would give it a sniff and spit it all over me as soon as the first few drops would hit her lips. My hands, my clothes, and my whole house smelled like rotting fish. I thought, “I can’t live like this.” But again, the voice in my head told me to keep going.

Even though I didn’t think she could understand me, I told her the supplements were not a choice. It was obvious, from looking at her, that she wasn’t getting the nutrients she needed from her food.  She was malnourished from all the diarrhea. It was “do or die” time. I knew if I let her get away with refusing the supplements now, she would never take them. I explained I was giving her these things to stop her diarrhea and to help her feel better. I tried again to give the supplements and she went to spit them out, again. So, this time, I closed her mouth and held it until she swallowed. She looked at me like I was the meanest mother who ever lived. But you know what? She looked at me!

My mom and I went through several days of holding Annie to get her to take the supplements. Any time I contemplated giving up, I thought about parents who have to hold their children down for chemo or radiation… they don’t want to do it, it hurts them to see their child in pain, but they know it’s what is best for their child. If they manage to help their child deal with all sorts of needles and scary equipment, I could certainly get my child to take some vitamins! After a week, Annie gave in and realized this was simply our new way of life and it wasn’t worth the energy to fight it. I breathed a huge sigh of relief.

I had written down every word Annie ever said before she regressed and to my surprise…within a few weeks of Annie taking the supplements, she had all those words back plus a few more. I realize now how lucky this was since I’ve had plenty of friends and acquaintances who’ve tried supplements with few gains. Supplements were not a miracle cure for Annie… we still had to deal with diarrhea, dark circles, rashes, toe walking, motor deficits, social deficits, language deficits, and sensory issues up the ying yang. But I was encouraged never the less.

Time to take this to the next level and get some professional help. DAN! doctors here we come.

To be continued…

For Parts 1-4 of Annie’s Story: https://ventography.wordpress.com/category/annies-story/

For more information on supplements: http://www.healthinducedautism.com/a—d1.html

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Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

18 thoughts on “SUPPLEMENTS – OUR NEW NORMAL

  1. HI, I have and 11 year old son with autism. Our biggest challenge with him is his verbal stimming. He is constantly repeating phrases from t.v. shows or from things he has viewed on the computer. He does take GABA and a whole bunch of other supplements and oils. Any other things you can suggest trying? We are at our breaking point. Thanks!

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    • Hi! Believe me… I understand about verbal stimming. It’s like “nails on a chalk board” for me. Glad to hear you’re trying GABA, but I have a few questions. Is your son on a low glutamate (low excitotoxin) diet? If not, he may not be getting enough GABA to counteract the glutamates in his food. If you are interested in this, you may want to google Amy Yasko and GABA/Glutamates to read up about foods to avoid. Another thought I had is have you tried inositol along with the GABA? The combination of the 2 was really powerful for my daughter. A third recommendation is neurotransmitter testing. I cannot personally vouch for this, but I have heard that balancing neurotransmitter levels can really help verbal stimming. I’ve heard there is a blood test to determine which neurotransmitter levels are out of balance and then someone can recommend homeopathic products to balance the levels out. Something else I’ve noticed is that if my daughter gets too much tv or computer time, she is a lot more verbally stimmy. In fact, I no longer let her have any electronics before school which has really helped. I let her have an hour of electronics after school to let her “wind down” and immediately I see more “self talk”. I have noticed that fresh air and lots of physical exercise cuts down on her stimmy-ness too. The other thing that I really feel helped her verbal stimming is ABA therapy. I learned from her therapist that I was unknowingly rewarding her verbal stimming through my responses. I hope something here will help. I know what it feels like to be at your breaking point. Thanks for reading! Molly

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  2. You are describing my eldest son – also vaccine-injured (though he never descended all the way to autism – he certainly had some of the traits – hand-flapping, lining things up, toe walking). He was a failure to thrive child with what I called a Biafra belly – huge stomach – skinny everywhere else. Multipe allergies and dark circles under his eyes. What finally turned him around was a wonderful anthroposophical doctor who gave him homoeopathic remedies and tissue salts and minerals. It was brilliant! He still has breathing problems and some environmental allergies, but night and day to what he was before. Keep going – it sounds like Annie is telling you you’re on the right track and she will thank you when she is older and recovered.

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    • WOW – our kids do sound so similar. What’s even more amazing is that Homeopathy is what I believe has helped my daughter the most too. I am going to talk about it in a later post. I am afraid to talk with most people about Homeopathy because they think it’s so “out there.” But it was truly a miracle for us. I am so happy to hear about your son’s amazing recovery. That’s what I’m shooting for and I won’t stop until we get there. We love your blog – you are gutsy and we admire that! We also admire how hard you’ve fought for your son. Thanks for supporting us – we hope to return the favor. Molly

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  3. Ty for all the information – I’m on it. I actually have culturelle and the Nordic naturals fish oil. (samples) How interesting that my son had reflux to the left kidney and he was on a small dose of an antibiotic for the first year of life until the next VCUG from children’s hospital (they only test once a year). I just knew he had healed within a few months but they would not test him again so soon. My poor boy had such bad diahrrea and diaper rash his whole first year until the doctor recommended culturelle with his bottle once a day. After a year we got him tested again – no reflux anymore and his body/kidney healed itself. we stopped the culturelle and threw out all antibiotics.

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    • It breaks our hearts to hear all that you and our son have been through. That must have been so traumatic. But thank God the reflux went away. Let us know what happens if you try new supplements! -L&M

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  4. Your Annie reminds me of my JR. Intelligent and yet so stubborn. Be careful of DAN’s. Many promise much but deliver not so much. Not sure where u are but in PA I found a DAN who actually takes insurance. You may be close enough to make it worth your while. Let me know.

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    • You hit the nail on the head! Annie is so stubborn. But I guess the positive to that is that she’s a fighter which has been key for us in this battle. That’s amazing that you found a DAN! doctor that takes insurance. I know what you mean – finding the right doctor is so key. My thoughts are with you and JR. -Molly

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  5. Just reading your blog and saw you started proabiotics. Not sure if you are still dealing with bowel issues, but we have tried about 6 different probiotics b/cuz my son had IBS and loose stools and other issues. The probiotic that worked the best for us is Align which is sold at most stores. I usually give him 2 in a.m. and 2 in the p.m. unless he’s on antibiotic then I give him 3 – 2x day. Anyhow, good luck!

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    • Thanks for the tip Elita! I find that we have to change up our probiotics on a regular basis or else they stop working, so I will be sure to check into Align the next time I need to switch. So glad to hear it helped your son’s IBS (that’s a really big deal). Thanks for reading – Molly

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    • GABA has a calming effect and can be used to help with sleep issues. It calms excitotoxins and can help children who have seizures. Both Leah and I have found GABA to be essential for our kids. Leah uses Kirkman’s GABA and I use Integrative Therapeutic Brand. Take care- L&M

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  6. This is about where i am. I need a little guidance on types/names/dosage of enzymes, probiotics, and fish oils. My son’s doctors say it couldn’t hurt, but offered no other info so far. I have got him to actually start on a multi-vitamin and swallow with almond milk of all things!! I’d love some advice from anyone on what else to start with. Already contacted a DAN! and set up for an appointment in April (the soonest we could get in). But hey – it’s a start.

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    • Hi Gabriela-
      The enzymes I use are made by Kirkman’s and they’re called Enzym-Complete DPP-IV with Isogest. Kirkman’s also makes a fruit-free version, in case your child has fruit allergies. I order it from http://www.pureformulas.com b/c of free shipping, but you can get it lots of places (just google it). Leah likes an enzyme by Enzymedica called Digest Spectrum. It’s really good too because you can get it in most health food stores and because it helps your child deal with phenol sensitivity. I think either one is great because they are both broad spectrum enzymes. Leah and I give one enzyme with each meal (after the child has eaten a few bites of food – I never give on an empty stomach because I found it to be too harsh on Annie’s damaged gut). For more information go to our website at, http://www.healthinducedautism.com/enzymes.html.

      The probiotics I’ve used are Flora Five, HMF Intensive, VSL-#3, and Culturelle. Leah is currently using Renew Life Ultimate Flora. We find that you have to switch up probiotics every so often or else the body gets used to them and they no longer work as well. Another tip to offer on probiotics is to find one that doesn’t have Streptococcus Thermophilus because if your child has issues with strep, this strain of bacteria will make it worse. And by the way, Streptococcus Thermophilus is in pretty much all yogurts as well. We have tons of info on probiotics on our website that you may find helpful. Go to http://www.healthinducedautism.com/probiotics.html.

      The fish oil brands we like are Nordic Naturals Cod Liver Oil (Plain-No flavor) and Carlson’s. We are not sure what to tell you on dosage. Try starting with half the adult dose (which is listed on the bottle) and then perhaps your doctor will advise you to work up from there.

      As for your question on what else to start with… we are actually writing up our suggested protocol right now on our website. Here’s the link to what we have so far. http://www.healthinducedautism.com/step-7—basic-supplements.html. These are our favorite (must-have) supplements. Hope that helps!

      Let us know how the DAN! appointment goes. -L&M

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  7. We’re using Gabba, along with supplements, and it’s making a difference in anxiety-levels. Thanks for sharing.

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