DownSyn Forum

whaleritis · Posted: May 22 2006, 8:26 PM Post subject:

hey all. was wondering what the popular (or unpopular, har har, know this is a controversial topic) wisdom is in regards to how early to start with the nutrivene? our little one is due in a little over 2 weeks, and I bought a bottle of the powdered nutrivene already, not really sure at that point that we'd even use it (though i think we will) but thinking it would be nice to have in my back pocket...

we discussed the matter with the pediatrician we've already signed up with (who was referred to us by the people who've been monitoring the baby's progress via ultrasound and did the amnio, etc.) and she seemed noncommittal either way, indicating that there have been various trends throughout the years as to "vitamins" for children with down syndrome, but she was open to the idea, but was curious to check out the bottle & its ingredients.

notwithstanding what the doc has to say though, what do you all think? start right off the bat? wait a couple weeks?

hope all is well for all.......

lilpayton · Posted: May 22 2006, 9:11 PM Post subject:

We started at 3 months, but I believe Dr. L told me it can be started right from birth. Did you also get the enzymes and nighttime formula?

_________________
Bethany, Mommy to Mason (6), Payton (4, DS) and Addison (3, DS)

Family blog:
http://thebalsisfamily.blogspot.com/

Adoption blog:
http://dreamingonanangel.blogspot.com/

Take control of your health with Juice Plus
www.livelife-juiceplus.com

elizasmom · Posted: May 22 2006, 10:30 PM Post subject:

We started off slowly between 3 and 4 months. I didn't want to go for the whole dosage cause i wanted to see how it affected her system. We don't do the enzymes cause of reflux and we just started nighttime formula. It's still a work in progress cause it is affecting her sleep.

_________________
Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

lcbrownfam · Posted: May 27 2006, 1:04 AM Post subject:

We started Justin at 1 week old on about 1/3 of the recommended dosage and slowly worked up.

_________________
Carol
Blessed Mom to Kaitlyn 6/92, Andrew 4/95, Aimee 2/98, Hannah 3/01, Stephen 2/03 and Justin DS 12/05

McKenna · Posted: May 27 2006, 10:07 AM Post subject:

We're on different supplements for kids with DS, but we waited a month after her open-heart surgery. I didn't want anything to interfere with her while she was in heart failure.

_________________

klem · Posted: May 27 2006, 10:22 AM Post subject:

We started at two months, but that's just because that's when we found it. A tip---keep the opened bottle in the refrigerator. It has been my experience that it seems to oxidize or something when left out (it says on the bottle to store either way) but it turns dark orange and smells horrible after a while. It stays fresh the entire time when in the fridge.

_________________
Kelley, Chris's wife
mom of Taylor 14, Daulton 11, Cameron 9 & Drake 6 (DS)

Carson's Mom · Posted: May 28 2006, 9:28 PM Post subject:

At 4 months we started. We would have started earlier but we had other medical issues.

_________________
,
,

Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

tsmith · Posted: May 28 2006, 11:48 PM Post subject:

We started around his first birthday, and then quit because of the pneumonia complications after his surgery... We then started him back, after we were settled back into a routine- Which has only been the past few weeks... So far, so good. Before, he was getting sick all the time, and we've gone several weeks with him without anything major- which in T Luke's case, that is major in itself.
Luke is a little slow with the physical stuff (motor skills) but I have to tell ya', cognitively, this kid is on the level- He knows what's up. He really has seemed more alert and awake...
BTW... We would have started earlier as well, but I kept putting it off. Glad I didn't put it off any longer.

_________________
Amanda, wife to Tim- Admitted STL Cardinals NUT!!! World Champs!

Elizabeth Cameron 3/11/99
Caleb Mark 8/29/01
Emily Robin 10/22/02
Timothy Luke 3/09/05

whaleritis

well, our little angel is here, and almost 2 weeks old, we've been holding off on the nutrivene so far, because she was having some minor issues with jaundice (which look to be clear) and her blood platelette levels (which seem to be rising toward normal levels). I brought up the topic of the nutrivene with out pediatrician at our last checkup, but we were in the middle of the jaundice thing (Brylee, our daughter, had to be readmitted to sit under the lamp for a day) and she didn't want anything else interfering at that time. I'm nervous to start up until I have the pediatrician at least give me the green light. When i mentioned the idea to her at our initial visit a month ago, she seemed open to the idea, but wanted to see the ingredients.

question: did all of you using this stuff have your pediatrician look at it first? has anyone seen any adverse effects from giving it to your kids? Brylee seems to be doing so good right now, I don't want to rock the boat, but at the same time I don't want to deprive her of something that could be potentially helping her, especially seeing as I have it sitting right in my fridge ready for dispensation...

comments/advice anyone??

thanks!

Carson's Mom · Posted: June 11 2006, 6:18 PM Post subject:

My pediatrician doesn't necesarily approve of it- but knows that we are going to use it and doesn't have a problem with it. She is supportive either way. Congratulations on your new baby. Have you posted pictures and I missed them?

_________________
,
,

Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

whaleritis · Posted: June 11 2006, 6:33 PM Post subject:

thanks - no, haven't posted pics yet, haven't had a chance to upload any! they are coming, i promise...