July 24, 2009

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


Dustin and Kelly said...

WOW, Beth, you really seem to have this stuff down...it's making my head swim. I am glad you posted information about it. I've wondered for quite some time and get such mixed reactions when I bring up the topic. I have actually started taking ginseng myself and plan to start ginko to see if helps with my mental processing! :) Thank you for the information. HOpefully, taking these new supplements will help me absorb and understand! :)

Stephanie said...

Thanks again for explaining this stuff in English! LOL! I am trying to investigate this more for Christopher, but until we know what is really going on with him, I am stuck. His last blood levels showed that his Folate/B12 was HIGH, I'm thinking D too. We never do anything normally. :) Met a new doc this week who threw ANOTHER diagnosis into the mix.

LOVE Hannah's worksheets. My nephew is very literal too. He's a hoot!

Steph and Christopher

Cheryl said...

I'm hoping Ruby's peditrician will give me a prescription for the Nutrivene so I can use my FSA money.
She's really good with Ruby and ordered bloodwork on her at her 9 month check-up to check her thyroid and iron levels,maybe she wont give me any trouble about the bloodwork you suggest every year.
Thanks for another great post!

Tina said...

Thanks sooo much for the detailed "laymans" explanation. I have been so worried about the different tests and if I am doing the right stuff at the right time, especially when I read so much about leukemia. Saira has hypothyroidism and so we have been checking her thryroid but never realised how important selenium and zinc were - thanks! Its always wonderful having thinks explained the way you have and I might just have more questions, hope thats o.k. with you.
Also lots of questions about Gingko, have read stuff on it but never actually spoke to someone who has been trying it out. What has your experience been? and how lond has Hannah been taking it? would love to know :)

Stephanie said...

Hi--I see there's another Stephanie posting here too. Hope I'm not causing too much confusion :) Anyway thanks so much for these posts. Very infomative and you've given me a lot to consider, although I admit, I'm still terribly confused. My DH is a big fan of supplements, so it looks like we'll prob. be starting something soon for our little man.

alaskamama said...

Hi BEth....
u r amazing! I thot I was pretty well versed, but after reading you and wonderful Miriam Kauk at her ES site...I am put to shame...
I am debating between liquid and caps for the Ginkgo...the liquid was from another place and Teresa Cody from CMF says that liquid is hard to gauge...all manufacturers are #...I think she recommends 10mg per kg of weight. The non liquid has been upped by INTN to 5.5 per kg of weight...the liquid is so EASY, just squirt it in! The caps have to be broken apart since my son *12YO( does not swallow pills :(...and he tells me that it is yuk...I tried it and yes it is bitter...even in applesauce with lots of cinnamon. So still deciding...
blessings to you and Hannah...u girls are amazing...

M.Hilton said...

What an amazing wealth of information! You are doing such a great job with your wonderful daughter's medical care. Thank you so much for sharing!

ds.mama said...

Thanks for posting so much info on this topic. We have been using NutriVene with Summer since she was 6 mo old. I believe it makes a difference. Next time I post on this topic, I'm going to link to you!