Targeted Nutritional Intervention--Vitamins

Skip this post now, or forever hold your peace.

No, really, I am open to any comments or questions about the topic of TNI, but please be respectful. Be assured that our family really has considered all angles of this subject. I certainly respect that other families make different choices and I never push nutritional supplements on to other families. I am writing because I have been asked about vitamin supplementation, not because I want to influence others' decisions.

The short explanation as to why and how we came to the decision to supplement Hannah is that we knew that the parts of the typical TNI protocol that we would use were safe; there were no medical dangers involved. And, we could afford it. We had no reason not to try it. The mainstream medical approach to T21 has not come up with anything to address the metabolic issues caused by the triplicated chromosome. It's true that there have been no scientific studies to prove or disprove the efficacy of any TNI protocol. And there won't be any in the foreseeable future.

I can't say one way or another that all the vitamins and supplements we've put into Hannah have had any effect--I'm not able to do a double-blind study on my kid. When we started with supplementation we were not looking for visible or measurable changes in her. We were hoping that her neuronal pathways would be healthier down the road, that her immune system would function a little better, and that perhaps she'd have less risk for Alzheimer's. Maybe we're throwing money away. It's a risk we're willing to take. So far science hasn't decided that Down syndrome is interesting enough or worthwhile enough to spend big research dollars on anything other than prenatal diagnostic tests. There are small studies that reveal metabolic deficiencies and disruptions, but not many studies that look at solutions to these problems.

The long answer:

For starters, we view Down syndrome as a progressive disorder--the extra 21st chromosome doesn't just show up once and make our kids slow learners--the extra chromosome is actively overproducing certain proteins and enzymes (all with long scientific names like cystathionine β-synthase). It isn't going to stop until we can turn off some of the genes on the extra 21st chromosome (which isn't going to happen for quite a while). This abundance of excess gene products is an ongoing, compounding issue in our kids' bodies and brains. There are too many cooks in the kitchen and too many leftover waste products cycling in our children's brains and bodies. These excess products are interfering with the endocrine system (thyroid, diabetes), immune system (celiac), and produce other biochemical abnormalities (leukemia, neurological issues). This is well documented in scientific literature (for an example, see here).

For a layman's overview to understand all this, you might want to read this from the Einstein site. (BTW, there is a picture of Hannah, age 3, on this page--on the left, second one from the top--wearing a crown.)

When Hannah was a toddler, some months after her heart surgery, Dr. Jill James (University of Arkansas) started a research study measuring how well certain nutrients were absorbed by the Ds metabolism. The specific nutrients were folic acid, trimethylglycine (TMG) and...umm...something else I can't recall right now. We signed Hannah up as a participant. They took pre-test blood labs, and then we started with the supplements. She had her blood tested at 3 months and then at 6 months. She was followed by her pediatrician through it all. None of the nutrients were anything dangerous, but they were at a higher level than the RDA. This was because there was a previous study that indicated that the RDA for these nutrients was not sufficient for the Ds metabolism. The study was to determine how much did the average person with Ds need to reach the "normalized" level of the typical population.

At this time, we had been in the Down syndrome game for almost three years, and I had read as much as I could. Being very active in our local Ds community I also got to reflect on the results of mainstream approaches to Down syndrome. To be frank, the available therapeutic interventions just were not cutting it by my standards. It was clear that the medical establishment was not interested in looking for methods to ameliorate the expression of the extra chromosome. Nobody seemed to want to spend money on our kids to do any double-blind studies to determine whether or not anti-oxidants or zinc supplementation would make a difference. Without such a study, no doctor worth his or her malpractice insurance could possibly risk suggesting using nutritional supplementation. (Well, there are a few out there, but Hannah's never been seen by one of them.)

When the six-month study ended, we could have stopped right there. But we had no reason to stop. Hannah was already on a pretty good course cognitively (pre-TNI). She was talking in sentences, had a sight word vocabulary of about 200 words, and knew her letters, shapes and colors. Our focus for her was on speech and cognition, two aspects that were going to make or break her as an adult. We weren't expecting that doses of vitamins, antioxidants and essential fatty acids (EFA) would change much. We were skeptical of anecdotes about facial structure changes, or miraculous leaps in development. We were in it for the long run.

We started with the whole Nutrivene package: Daily Supplement (microencapsulated powder), Daily enzymes, and the Nighttime formula. At that time we also used Evening Primrose Oil for EFAs. We quickly determined that Hannah did not need the enzymes. We also noticed that Hannah did not sleep as well if she had the NightTime formula. (The Night time formula is primarily to promote growth and regular sleep patterns. Hannah was already in the 75 percentile for height on the regular growth charts, so we didn't need more growth). So we dropped those. Over the years there has been some tweaking of what we give her. We've always viewed vitamins as a non-negotiable thing. When she was little, they did taste bad. We'd mix the powder with cinnamon applesauce or pureed fruit to hide the flavor. When she was four years old she started taking capsules, which made everything much easier. She still prefers to take the capsules and tablets with spoonfuls of applesauce, usually two or three capsules at a time.

The first addition we made was a probiotic. Now, this is one thing that I DO HIGHLY recommend for our kids, and for the rest of us. It's the first line of defense against constipation. Probiotics are healthy bacteria that reside in the GI tract. Many times, due to antibiotics (which indiscriminately kills all bacteria, helpful or harmful), a child gets diarrhea, which is frequently followed by constipation. Low motility in the GI tract also contributes to constipation. A probiotic powder or capsule will replenish the colonies of healthy bacteria that do the work of digestion. (This is what Activia yogurt is all about.) Later, we changed from Evening Primrose Oil to an Omega 3/DHA combination. This decision was based on research about DHA (which is now found in baby formulas as a crucial element in brain development). We do not use Piracetam.

About 20 months ago we added ginkgo to Hannah's daily intake. Ginkgo is the first herb she's had, and it's the first thing that we've supplemented that actually surprised us with an obvious change. Language has always been one of Hannah's strengths, but we were amazed with her new awareness of conversations and her ability to express herself more maturely. We always use a low dose when starting a new supplement (additionally, I always try the supplements as well, before giving them to her, so I know how they taste (fish burp?) or make me feel). Our goal was to get to 180 mg/day. We had been giving her 120 mg in the morning, and then an additional 60 at night. We weren't seeing any difference until one day I was late in giving her the vitamins (it was after lunch), so I gave her all 180 mg at once. That night at dinner she said an amazing sentence, something like, "Chris, would you describe how the dogs in Hotel for Dogs managed to escape the police?" Since then I give her all 180 mg in the morning. More recently we have added another 60mg at night since she has grown considerably in the past year.

Hannah has various blood tests done annually:

CBC, Vitamin A, Selenium, Zinc, Ferritin, Iron, Homocysteine and a full Thyroid panel.

morning vitamins

Here's the run-down of her current protocol:

Nutrivene-D, 12 capsules a day (dosage by weight)

1500mg ProDHA

2 probiotic capsules

500mg calcium with Vitamin D.

Her iron stores were low this year, so we are adding a small amount of iron to her diet (typically iron is not recommended in the Ds population as it contributes to oxidation and is difficult to excrete excess iron).

evening vitamins

I'd like to point out that there is another protocol, one put out by the Changing Minds Foundation. We already were using some similar components of the CM regimen, but not all. I have done some reading about the use of Prozac and its potential for neurogenesis. I do not doubt the potential for it to be a valuable player, but at this time we are not going to pursue pharmaceuticals. I understand that the national Ds groups and other prominent Ds researchers have felt the need to discourage people from using the CM protocol to protect themselves legally, since the use of Prozac for neurogenesis would be an off-label use. I encourage everyone to do their own homework and decide for themselves what approaches they want to pursue for their child.

The last thing is that most doctors are recommending things like fish oil and antioxidants for the general population for optimal health. I see no argument against that usage, so why should we not use the same logic with the Down syndrome population? Our foods are becoming less and less nutritious, we are all at risk for deficiencies.

So there you have it. I'm happy to answer questions or clarify any points regarding Hannah's protocol, via comments or email.

Addendum: I have a follow-up post you can read here.