RE: Nutrivene, ginkgo, etc

December 26, 2008

Sounds like you had a good visit with Dr. Capone!

We give my brother Nutrivene-D Daily Supplement & the

Nighttime formula. We do not give him the Daily Enzyme because he has reflux at

times.

We have never checked my brother’s vitamin D levels, as I don’t

feel that is necessary. The levels of Vitamin D in NTV are not as high as they

could & should be. They will be increasing the levels of D soon. The amount

of Vitamin A is slightly high, but it is not that high. We check my brother’s

Vitamin A levels every now and then.

Qadoshyah

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From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of Almeida

Sent: Friday, December 26, 2008 7:27 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Nutrivene, ginkgo, etc

Hi everyone,

Hope you had a great Christmas.

We came to land to stay with friends this Christmas and I took

the opportunity to take to see dr Capone, from the

Kennedy Krieger Institute in Baltimore.

It was worth every minute of the trip - nothing like people with a

lot of experience and who knows exactly what they are talking about.

He confirmed my guess that should have a sleep study done

because she might be having apnea - her tonsils are very large and

she sleeps sitting down (all folded down on her legs - incredible

flexibility !). He said a lot of people with DS do that because it

opens their air ways and they can breathe better (the student that

was attending the appointment was most impressed).

I also, of course, asked about nutrivene and ginkgo. He said it was

quite safe to start with those, only that we should monitor her

vitamins a and d levels every 6 months because of high levels in the

nutrivene. As for the ginkgo, he only said to start it low. I might

start her on DHA as well. I commented that I belonged to this list,

that a lots of people were using ginkgo and that I thought it was a

pity that the DS organizations reacted so badly about the Changing

Minds protocol, that there could have been a better and more

constructive way to handle the issue. He agreed with me and said that

overreacting is what they usually do, and argumented that the only

way to revert that doing the tests. Nothing new there, but it showed

that he is a sensible guy. He laso said they are doing tests with two

different medicines for Alzheimers at the clinic (ant remember the

names), but all with older children (9 and older).

Let me get to the point - I want to start on Nutrivene and

ginkgo, possibly DHA, too. I wanted to know - do you use the complete

program, or just the daily dosage ? About gingko there are a lot of

previous messages, I will just go over those.

Thank you all for the info and suppor this whole year ! I love this

list !!

Best wishes for 2009!!

Pat and (4)

December 26, 2008

There is a lot of information on how to start Nutrivene on the

Riverbend site(link below)

Rule of thumb, though, is to ‘start low and go slow’.

http://www.altonweb.com/cs/downsyndrome/ntdso.html

Here is the page to calculate your child’s daily dose(it

is based on age/weight)

http://www.altonweb.com/cs/downsyndrome/ntdrda.html

Danny has been on NVD since he was 16 months old. It tastes

truly wretched…..he used to take it well if I mixed it with a teaspoonful

of cinnamon applesauce…I made the mistake of mixing it with his food

when he first started taking it, and he got to the point where he would refuse

to eat because it tasted so bad…but the applesauce worked well. He has

been able to take capsules for several years, so that has been great.

If you call International Nutrition and tell them that you

are just getting started, they will probably send you samples of the powdered

form and the microencapsulated form so you can see which kind will take

best. The microencapsulated form is little tiny beads that are coated so that

it doesn’t taste as bad…Danny used to have problems with textures,

so he wouldn’t take that kind..We get blood levels checked once a year

(Vitamin A, zinc, and they have never been high)

He takes the daily enzymes, which really helped his

digestion/bowels…he used to be horribly constipated, and the enzymes took

care of that. If your child as reflux, they shouldn’t take the enzymes,

because the enzymes can cause damage to the esophagus if they are refluxed.

Danny also takes extra TMG (to bring his homocysteine level

to the normal range…his was always very low before taking extra TMG)

Longevity Science Omega 3 oil (lemon flavored…he calls

it ‘robot oil’ and loves it)

Gingko 60 mg daily

I also give him blueberry capsules because they are high in antioxidants.

I am glad that Dr. Capone was so open to the use of NVD…I

don’t think that he used to be, so this is good news.

And I agree..I think that the ‘warning’ about

the Changing Minds’ protocol could have been handled much better. I

think that it came off as pretty heavy handed, when it really didn’t need

to be.

KathyR (Danny is 10 ½ yrs old now)

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Almeida

Sent: Friday, December 26, 2008 8:27 AM