Vitamins Take 2 (and call me in the morning)

I'm glad that many of you found my vitamin post to be of help (and, look! no mean people!). After nine years of managing and tweaking Hannah's supplements, I can still find myself wandering into a health food store or vitamin aisle and completely freeze in place--there are so many many choices--they all can't be all that necessary, right? I mean, humanity has actually survived for quite a while without the help of many of these nutrients, right? I understand your confusion and hesitation.

Years ago I didn't know where to start at all. I joined a very medical and metabolic focused Down syndrome listserv, sort of by accident. I was a lurker for many months. The moms on that list are amazing--they know so much, and continue to pursue all kinds of interesting approaches to solving some of Down syndrome's challenges. I didn't have the time or inclination to do all the research they do. I do actually spend some time reading current research. When I go to conventions, I usually seek out the more scientific and medical seminars. But I can't keep up with all of it. So I have to compromise, and just give some ideas a try. Nutrivene is about as mainstream as an alternative therapy can get. Does that make any sense? I'm trying to say that it's not like it's uncharted territory--there are thousands of families that are using Nutrivene or MSB (a similar Canadian brand of vitamin). It might seem way out there, far from what *most* families choose, but it isn't all that distant from a good quality vitamin.

I'm going to give some more specifics about ginkgo, since I've had quite a few questions about that. Then I'll go into more depth about the blood tests we use.

We use Ginkgold, and I usually buy it from Vitacost since it's usually cheaper than through Nutrivene. The Nutrivene site doesn't carry liquid Ginkgold, but it is available elsewhere. I know some people use the Ginkgold tablets and crush them for their little ones who can't take pills yet. The Ginkgold brand tablets are very hard, so you'd need a mortar and pestle to crush them. For dosage we use 2.5mg per pound of body weight. When I start a new supplement for Hannah, I always try it myself first, and then I'll give it to her, but only a half dose. I work up to the full dosage over the course of a couple weeks. With Ginkgo, the dosage seems to really vary according to the individual. Some people see differences at lower doses, some need more. The upper limit for adults is 240mg a day, which is what Hannah takes. I take 180mg, but I don't have an extra chromosome (don't forget, Hannah's a tall sturdy girl--nearly 100 lbs). Ginkgo does have the potential to mildly inhibit coagulation, so it is important to let your doctor/dentist know that your child is taking it.

With regard to blood tests, I began with the basic blood tests: Thyroid and CBC.

The CBC (complete blood count) is needed to monitor general health, plus screenings such as anemia and leukemia. Most doctors know that these labs need to be run annually. (Though I've had to train most of Hannah's doctors myself--they usually do not argue against blood labs, especially when I come in with a list.) Please note that the CBC is used for "screening", not for :diagnosing" a problem. It pretty much tells the doctor if s/he needs to look further.

Since we know that there are some known enzymes and elements that are typically low in the Down syndrome metabolism, we should test for these as well. Selenium and Zinc are two main culprits. Both of these are important to healthy thyroid production. If I want Hannah to maintain a healthy thyroid, I know that I need to keep an eye on her levels of Selenium and Zinc as well as the regular annual thyroid testing.

I know that iron can build up excessively in my child with Ds; I want to make sure that she has enough for her body to be healthy, but not too much that could compromise cell membranes and function (hello neurons? hello cardiac issues?). To do this, I need a lab test that shows how much iron she has in her blood, plus I need to know if she has enough of transferrin, which transports iron (Iron and TIBC-total iron-binding capacity). In addition, it would be helpful to know how much iron she has stored in her body. This is the ferritin lab.

Homocysteine is a tricky deal. Did you know that high homocysteine levels in mothers have been suspected of one of the potential causes of the sticky extra chromosome to begin with? That's not actually relevant to our kids, but an interesting knowledge point. With our kids, the issue is that homocysteine is usually low. This is because of trouble with folate and/or B12, which is caused by the extra chromosome.

If your doctor questions you about the labs, you can always ask them "why not?". If they have a good argument (for instance, Vitamin A is a questionable test. Yes, too much Vit A is a dangerous thing, but it is an extremely rare condition, and without any symptoms, the test is usually not needed). I've had doctors who have resisted the Vit A/Carotene test, and other doctors who have added it to the list once they know that we supplement.

I'm going to add a Vitamin D level to Hannah's annual labs as well. American kids are coming up short with regards to Vitamin D. They spend far less time outside, and their diets are not optimal. With Hannah's red hair, fair skin and copious amounts of sunscreen, she is at risk for not getting enough Vitamin D. (And I already have a kid who has Vit D/Calcium absorption problems.)

A doctor should never hesitate to test for celiac disease if the child has not yet had the the screening. This disease can be asymptomatic, or have unexpected symptoms, so it is prudent to have this done during the toddler/preschool years, and perhaps adolescence as well.

Other tips:

To learn to take pills, we used fish oil gelcaps that we punctured and squeezed out the oil. We used the empty "skin" and plopped it onto a spoonful of applesauce or yogurt. We told Hannah to "gulp" it down. Once that went smoothly, we added in larger empty capsules, and finally moved on to actual supplements.

Always always get a hard copy of all lab results! Keep a file folder with labs and other medical reports. It is likely that you will be the one that notices a trend one direction or another than the doctor would. And you'll have the results to help you remember what you need on the lab order then next year!

Costs: If you have Healthcare Savings Account, you could see if your doctor is willing to write a prescription for Nutrivene and other supplements. That way you could pay with your pre-tax dollars. Over the counter vitamins are covered if you have a prescription.

We keep a budget item line for vitamins. We set aside $50 a paycheck for Hannah's supplements. I order vitamins about every 2.5 months or so, so the money accumulates "hidden" in the checkbook until I use it. For younger or smaller children, the costs would be reduced accordingly. When Hannah was two, we probably paid about $100 for 3 months of supplements, about a dollar a day. Now we're up to ~$3.00/day, but we've added more items to her protocol.

Don't start more than one supplement at a time. Take that one (at full dosage) for at least 2 weeks before adding a new supplement. Try not to add something new when other new things are going on (such as the beginning of the school year, or immediately after surgery). This way you can identify any changes or reactions in your child.

Again, if you have questions or concerns, email me or leave a comment!

I've updated our supplements in this post.   October 17, 2012

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.