In my recent poll, I asked parents if their ARFID child takes supplements or do they refuse. The results were - 59% said "yes" and 41% said "refuse". The reason I asked this question was because of the 17 year old boy in the news recently that has ARFID and has lost his vision due to nutritional deficiencies. Although blindness is considered an uncommon complication of poor nutrition, as stated by Deanna Paul of the Washington Post, it certainly is an opportunity for all of us parents to inspect our ARFID child's daily nutrient intake.
The article noted that he was deficient in vitamin B12, copper, selenium, and vitamin D, as well as reduced bone mineral density and high levels of zinc (read the full article here). I found this very helpful information and a good starting point as I inspected my own son's nutritional deficiencies.
I've stated in earlier posts that I am a certified holistic nutrition coach. This is something that I no longer use professionally, but I use every day in the choices that I make for myself and my family. I am a true believer that organic, minimally processed, whole foods are the way to go - which makes it very hard to be an ARFID parent.
I've been having my son's blood drawn for Iron for years, but now I have other vitamins and minerals to request tests for. My son shows no visible symptoms of ARFID. He is average height and weight for his age, with a healthy BMI and he even had a 4" growth spurt this past year. So, he "appears" healthy. But as ARFID parents, we can't accept that as good enough. We need to be more diligent.
My son had rejected supplements for most his life. As a young child, I was able to get the Flintstone chewable in him, then we moved on to Pedisure, and now he takes the below supplements - vitamins and fiber daily, Iron is once per week:
I worked very hard to find to healthiest, most natural supplements I could find that he would intake. His Iron went deficient again this past year and he WILL NOT take a pill or liquid, so I give him the patch. It goes on his back once per week while he sleeps. The fiber he actually tolerates, but I have to give it to him in a syringe or he won't take it. The fiber has some kind of an orchard fruit and garden veggie blend acting as the fiber, which is the only fruit or veggie that gets into my son. For the fiber, we started out slow as his body needs to adapt and water is a must with this! The ChildLife multi-vitamin he has taken in liquid form for a couple of years, typically with a refusal - but he gives in - and always with a glass of water and she crackers to get rid of the taste. All of the supplements that we give him we first discussed with his pediatrician. I even called his doctor 3 times to get the Iron dosage right. I don't care if I am annoying, because getting the dosage wrong for a child can be "not" good.
It is a circus act daily to get the supplements in. But it is an important thing that we do. I talk to him about what he needs and why. He is old enough, so I tell him what Iron does for him and what will happen if he doesn't get it. He understands.
The thing about supplements is that they are not regulated by the FDA. I learned that when I was in school studying nutrition. That means that what the company puts on the label isn't necessarily what is in the bottle. Which is a bummer. There are supplements that are third party verified and that is a good thing. That means that the company paid another company to test and verify the ingredients. You may see "USP" on the label as well. USP is a dietary supplement verification program. My child won't take those supplements, but maybe yours will :).
So, the Iron "patch" is cool. But again, not third party verified. So, my way of determining how effective it is is to give it to my son and have his iron levels retested at 6 months. If his iron levels improve, then I would say it is working. So, we will find out in a few months. PatchMD also has a patch for multi-vitamin. But, I find that the ChildLife multi has more of certain vitamins than the patch, so I am still giving him the ChildLife for now, but may switch after further study. My son's pediatrician says he has no experience with the patch, so we will learn together.
I also looked at what my son eats each day without a doubt - 1 cup of Multi-Grain Cheerios and 3 cups of FairLife Chocolate milk. So, I wrote down each of the vitamins and mineral amounts from those so I could see how he was doing. Then I told him he had to have these every day for sure and the less healthy crackers and chips after that.
At his next doctor appointment, I will print the article of the 17 yr old boy off and give it to his pediatrician, then ask for more bloodwork in addition to the Iron. It's always good to share knowledge.
My hope is that you take away 3 things from this post:
1) Don't panic, it's uncommon for the worst to happen
2) Be diligent, find a way and find what works for your child
3) Talk to your pediatrician, get approval for supplements and ask for bloodwork to get the big picture!
Best wishes to you all! Stay positive!
I am an ARFID Mom. I am the mother of a 12 year old boy with Avoidant/Restrictive Food Intake Disorder (ARFID). I have become the "expert" on my son's feeding issues. I am here to share what I've learned.