My Letter to a Non TNI mom

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My letter to a mom not on a TNI list asking about Vit. D... nothing too controversial here but thought this might help someone hereShe is adopting a baby with Ds who is being given up for adoption by the birth mom! (He is not born yet) Best, LioraBLESS YOU for adopting an awesome child with Ds. What the mothers write

is not an exaggeration- this child will probably be the most amazing person you've ever known. FULL of love and cuddles and you'll bond with

this child like perhaps no other... My baby was born with Ds, I don't do all those awful scans and stuff, would never abort so I don't give the Whitecoats the chance to poison my mind! Anyway I'm too outspoken I

know. Thinking back on when she was born, I really don't have any idea

now, what I was so sad about when we 'found out" after she was born! I

just think I didn't know what it meant...I felt I had lost all my baby's "dreams" motherhood etc...but not true! She's AMAZING and can do

anything in life, I feel.

Anyway, kids with DS need more of certain nutrients than than non-Ds. and that includes Vit. D.

This is 15 ML (small size bottle) and 2,000 IU per drop. They use IU rather than Milligrams, for some reason, when measuring Vitamin D3.

the U.S. RDA is 400 IU per day. This is the BARE MINIMUM for preventing rickets and will not help anyone's immune system!

I give my little girl (age 21 months) with DS 4,000 to 8,000 daily most days in winter, and this amount for my other kids too especially if they

are actively sick. Sounds high, but a full sun exposure on the body produces some 10,000 to 25,000 IU over a 24 hour period, so our bodies can really benefit from that amount.

Which list did u see this on? Reeces' Rainbow? Because on the Targeted

Nutritional Intervention lists, plenty of other moms there can pipe in with the amts they give their kids and stuff. It's a lot of info! We just started with the basic Nutrivene products. Then quickly added in more supplements one by one as I learned why each one was really helpful. Today, other than a delay in walking independently, Etel at 21

months is developmentally (cognitively) doing very, very well. She talks a teeny bit, communicates with sign and nonverbally a LOT, solves problems, is curious about everything, and very mobile cruising around with her walking toys and holding onto chairs and walls and such. Here she is at age 17 and 18 months.

<http://vimeo.com/13260300>

<http://vimeo.com/13638521>

<http://vimeo.com/13259899>

I think they are still active. Since I posted those, Vimeo is now blocked in China just like Youtube! (We live in Beijng for my husband's

work). I need to find a way to put the new ones up. She's blabbering

away and pointing at everything...

Some AWESOME lists to be on for Nutritional stuff and DS are

1) <http://groups.yahoo.com/group/DSTNI/> This is Dr. Leichtman's group. He is a pediatrician and Geneticist and nutritionist, and specializes in

kids with DS. He has seen thousands and thousands.

2) <http://listserv.tbinet.org/scripts/wa-tbinet.exe?A0=EINSTEIN-SYNDROME> A bunch of super researching moms.

3) <http://groups.yahoo.com/group/DownSyndromeInfoExchange/> Also a great list for current news and research and activism.

Just subscribe on Daily Digest and start reading and learning.

Also, this is huge, a lot of research here at the Einstein Syndrome blog

site itself <http://einstein-syndrome.com/2009/04/11/top-15-things-a-new-parent-should-know/>

this mom Miriam is A SUPER RESEARCHING MOM Don't let this info overwhelm you. But do go one by one and pay attention and you can drastically change the mental and physical health and life choices of your child. If you want to know the "Whys" of TNI this is quite detailed <http://einstein-syndrome.com/biochemistry_101/cell_biology/> but really useful.

For an introduction, this is a little more easily digested <http://www.lleichtman.org/tni.shtml> This is Dr. Leichtman's page and written in the format for parents to give to their children's doctors to help educate the Dr.'s about DS and metabolism.

And to learn how to slow down and playfully interact with the goal of SPEECH, teaching especially preverbal and communication skills this list

is awesome. <http://health.groups.yahoo.com/group/communicating>

However I have to say, ordering his DVDs ECO I and ECO II and SHORTCUTS were really even much better than the book Play To Talk, for me. They even showed communication with infants and even though I practiced attachment parenting and was responsive etc. I was communicating poorly at the infant level for all 3 of my kids! The list has GREAT reminders and good discussions from parents seeing results. But the DVDs painfully showed me exactly where I was going wrong, ....and thinking I was doing it all right. I have a degree in Child Development, too! Anyway I LOVE those DVDs. Really Invaluable.

Just for your catalog this is what we give Etel currently (and we are about to add in TMG & Methyl b12 spray & DHEA)

Nutrivene DS multivitamin supplement

Nutrivene Daily Enzyme

Body Bio PC (Phosphatidyl Choline) oil AND/or CDP Choline (Cognizin Citicoline is what we use, best price on Iherb.com)

DHA (Neuromins open one gelcap and squeeze onto food) (NEED TO REORDER)

Probiotics (Baby Biotic approx 1/4 t) and/or Probiotic from Dr. Mercola 1 capsule

Vitamin D drops 2,000 to 10,000 IU daily seasonal

Piracetam 1/2 scoop (400 mg)

Ginkgo Biloba Honeycombs liquid (5.5 mg per kg- at 3.3 mg per drop = currently 16 drops)

CoQ10 Enzyme- just ran out of it but was 100 mg/day Ubiquinone. Upgrade to Ubiquinol next order

Curcumin Longvida brand 3-4 scoops (moms are divided as to whether best given at night or in the morning) also at Nutrivene website. When baby is old enough to eat solids, get the POWDER not the capsules (search carefully, the photo link is for the CAPS)

no more than 1 hour before bedtime and without protein:

Nutrivene Nighttime formula 1/3 capsule

Daily Enzyme 1/3 capsule

hope that helps.

For a young, fully botttlefed infant, I'd recommend starting only with 2 things:

1) the Nutrivene basic combination set (Nutrivene-DS, Daily Enzyme and Nighttime formula). at www.nutrivene.com, adding in the Nutrivene supplement (powdered form dissolves best in bottles) into the baby bottle. Start with 1/2 the daily dose (spread out the recommended amount over a full day, like 2 feedings or 3, it's not much maybe 1/4 teaspoon per day to start with). Then over 1 or 2 weeks work up to full

dose. Then add in the Enzyme. Then add in the nighttime formula (you

can just start out with all three, too, if you like.)

2) THEN and equally important, the other single most important brain growth thing is CHOLINE. Choline is in high amounts in breast milk and egg yolks. The powder is virtually flavorless and mixes in a bottle easily too. We found the BEST product and best price here <http://www.iherb.com/Healthy-Origins-Cognizin-Citicoline-250-mg-150-Capsules/13484?at=0>

(this is 150 capsules. They offer a discount on 4 bottles. This same brand also has a 60 capsule product but at the 60 capsule packaging the JARROW brand is cheaper http://www.iherb.com/Jarrow-Formulas-Citicoline-CDP-Choline-250-mg-60-Capsules/112?at=0

this is what we started out with to make sure it was the right product,

palatable, etc.) Use my code URi094 and you get five U.S. dollars off

your first order. And I get a little percentage toward my vitamins too. Then get your own code at the REWARDS PROGRAM link there!

GOOD luck and do join those lists to hear of lots of kids with DS doing really well! blessings,Liora Pearlman , ModeratorMom blessings,Liora Pearlman , ModeratorMom"The only safe vaccine is one that is never used" - Dr. R. , former director of the (U.S.) National Institutes of Health (NIH)"There is a

great deal of evidence to prove that immunization of children does more harm than good" J. , PhD, Former Chief Vaccine Control Officer and Research Virologist for the FDA. "I want to sell drugs to everyone. I want to sell drugs to healthy people. I want drugs to sell like chewing gum.†Henry Gadsden, Merck CEO (at the time) "You medical people will have more lives to answer for in the other world than even we generals - Napoleon Bonaparte