DownSyn Forum

[Riley's mommy]

I'd like to try giving supplements such as Nutrivene, Curcumin, Ginko Biloba and a probiotic to my newborn. Has anyone else given these to their newborns? If so, in what quantites?
If you held off, why and at what age did you start?

[Excalibur]

Welcome to the forum, and to this very special parents club. OK, you just found out your baby is "broken" and you are probably thinking, "maybe I can fix this like I fix everything else by spending money on it"? But firstly there is nothing really wrong (different yes, wrong, no) and secondly you can't fix or change the Down's Syndrome part of your child .. and anyway, the longer you get to know about it the more it just becomes a normal and hopefully cool thing to be with. Think of it like giving up smoking: it is painful at the start giving up your addiction to "normal" but the longer you do it the nicer it becomes. And then it all becomes part of a richer, more diverse and interesting kind of "normal" . And meanwhile, you get to become a nice kind of person. So its win-win.

So, anyway, the answer is: No, no no no no no and no!
And then again, no!
Please follow your doctors advice and do not waste good money and risk damaging your baby's health on unproven snake oil.
My son is now 17, he attends mainstream college, and he is physically fit and travels independently by public bus. He boxes, skis, and swims most weeks using mainstream facilities and clubs, and he likes hiking, canoeing, sailing, and surfing the net. Oh, and girls.
He has never taken a supplement in his life, and has never been to hospital since he was a baby. He is rather fond of fresh fish. And he has a brilliant sense of humour.

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

[JanAndFamily]

I started Christopher on fish oil at 18 months, and gingko and curcumin at 2.5 or so. I know Changing Minds Foundation recommends starting their protocol as newborns. I probably wouldn't have even if I had heard of it then because Christopher had some reflux issues then and I think they would have made them worse. He's actually been off the gingko and curcumin for a while because we thought they were negatively affecting his behavior. I just tried the curcumin again a couple days ago, and he spit up afterward (which he rarely does these days). Will have to build up gradually and try a different time of day I think (his stomach is most sensitive in the mornings). When he was on both together, he seemed to become more hyper, and I don't like the CMF idea of ritalin to control that - we just took him off the supplements instead. His language did seem to show noticeable improvements while on them though, so we're going to try again, especially now that he's not going to preschool and I can observe him more closely at home and not worry about his disrupting a class.

I'd say it's an individual decision, but be on the lookout for signs of tummy upset if you try it that early. If your baby seems extra fussy in general, it could also be the over-stimulation from the supplements too, so keep that in mind too. With all the things you're thinking of trying, I would DEFINITELY just introduce one at a time and take it slowly so you can see any adverse effects from them and know which thing it is that's causing them.

Jan

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wife and mother of Katherine (2004) and Christopher (Aug. 2007, DS)

[TheBradyBunch]

absolutely DO NOT start supplements like that as a newborn. They have such fragile little systems that are meant to digest breast milk, even formula is hard on their system (in comparison to breast milk). NO no no no no no no. Not ever on a newborn, and it doesn't matter what changing minds foundation is recommending. Wait until their bodies can handle regular food. Wait until it's normal that different vitamins and minerals and whatever else can be ingested by a child actually eating them, because that means your childs body is ready to handle them.

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[JanAndFamily]

Good point about babies and what their systems can and can't handle.

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wife and mother of Katherine (2004) and Christopher (Aug. 2007, DS)

[jtkkmom]

We gave probiotics to our daughter as a newborn. I think it is safe & important if they have to be on antibiotics for any reason.

We held off on Nutrivene, Curcumin, & Ginko Biloba until our daughter was 3.

If you are considering ginkgo now, research the risk of seizures with this supplement for kids under the age of 3.

Curumin is recommended for kids older than one year due to gastrointestinal difficulties in babies.

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Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential

[Ally's mum]

Personally I would never ever give supplements like these to a newborn. I also agree with Excalibur.

[Excalibur]

I have no idea how much these supplements cost? And what is their attraction to new parents, given the weakness of the academic research that supports them?
I'm obviously curious to know how supplements might compare, dollar for dollar, euro for euro, with other forms of alternative 'therapy' such as horse riding or swimming, a classically healthy mediterranean or Japanese type diet rich in fish, fruit and vegetables, or other popular treatments such as reflexology or hydrotherapy. Or indeed, any combination of the above, (because nobody I know would use their child as a guinea pig by limiting them to a single 'treatment').

But as far as I can see it, the companies manufacturing these additives that make the most profit are also the best able to spend even more money promoting their chemicals, regardless of their merits compared with other therapies than dont make much money, such as, say, walking.

And there is my problem. There isnt really an industry making much profit from promoting walking, fishing and ski-ing in the Scottish hills, but I just know from personal experience that wild-country adventure is the most amazingly life-enhancing thing that any parent can offer their child, - with or without DS!! And to be fair, it makes no difference whether you do it in Mongolia, the Appalachians, or the Pennines - it is more about getting up close and personal with your child and knowing that - whilst you may not be 'an expert' - you know your own child, and they want to spend quality time with you.

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

[Excalibur]

I have no idea how much these supplements cost? And what is their attraction to new parents, given the weakness of the academic research that supports them?
I'm obviously curious to know how supplements might compare, dollar for dollar, euro for euro, with other forms of alternative 'therapy' such as horse riding or swimming, a classically healthy mediterranean or Japanese type diet rich in fish, fruit and vegetables, or other popular treatments such as reflexology or hydrotherapy. Or indeed, any combination of the above, (because nobody I know would use their child as a guinea pig by limiting them to a single 'treatment' - well would they? I do hope not).

I mean, lets imagine for one moment that all these kids on supplements have Moms who also give their kids peanut butter for tea, every day. And lets say these kids do 10% better in tests than the kids who dont get the supplements (or the peanut butter). So, who can say, for certain, whether the 'miracle cure' is the supplements, or the peanut butter? Realistically, nobody can, but does that stop the folk who are making money. Er, no. Because consumer protection is very poorly funded compared with the largely unregulated industry that is making a small fortune selling, er, snake oil. Its a case of 'buyer beware' really, but it really helps if the buyer has a postgraduate degree in bullsh!t detection.

As far as I can see it, the companies manufacturing these additives that make the most profit are also the best able to spend even more money promoting their chemicals to the gullible, regardless of their merits compared with other therapies than dont make much money, such as, say, walking.

And there is my problem. There isnt really an industry making much profit from promoting walking, fishing and ski-ing in the Scottish hills, but I just know from personal experience that wild-country adventure is the most amazingly life-enhancing thing that any parent can offer their child, - with or without DS!! And to be fair, it makes no difference whether you do it in Mongolia, the Appalachians, or the Pennines - it is more about getting up close and personal with your child and knowing that - whilst you may not be 'an expert' - you know your own child, and they want to spend quality time with you having fun in a space where there isnt a lot of distraction, like the great outdoors. Or even your living room. Lets get close to our kids, and cut out the commercial stuff that only gets in the way.

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

[TheosMom]

Thank-You Excalibur for this post!
I have worked in the health food/supplement industry and do believe their can be helpful products out there of course, but you have just confirmed what I feel deep down, which is that fresh air and lots of love are the best treatment that can be given. I am having a rough patch, my little one has pneumonia and I was spending the morning blaming my self, but you have given me the slap in the face that though my little man isn't on any special therapies or drugs he does get outside and we spend lots of time with other outdoorsy like-minded families and live in a beautiful part of the world, inspiring really. So thanks, even though you wrote this months ago it made my today.

[lioralourie]

Gut bacteria and long term health has been the topic of many research studies. Mother's flora, breastfeeding, birth route (vag vs c-section) all impact gut flora.

Probiotics are very safe for infants and I now recommend them for all new mothers in our Birth groups here in Beijing- do start slowly and work up- and I wish I had used them with all three of my kids at early ages, now that I have seen what the new studies show about gut flora and neuropsychiatric illness, and serious differences in kids with autism having distinctly different gut flora (don't know if this is a cause or an effect of the autism, something tells me, a little of both).

The things that have been extensively studied, and are SAFE for newborns are:

Vitamin D drop (in olive oil or MCT which is medium chain triglycerides, which is just purified Coconut oil). I believe the current reco for infants with DS is 1000 a day but I would check at the DSTNI yahoo group to be sure.

Probiotics: work up to 8 billion organisms a day. 8 to 10 strains of lactobacilus and bifidus (to be extra careful, avoid strep strains, anything starting with an S. like S. Thermophilus is strep).

Nutrivene-D but once again, I would start off with 1/8 a dose (dosage is by weight, see the side of the bottle). and work up from there.

DHA get a good tasting kind, we like Gentle Prenatal by Bluebonnet brand, 200 mg a day, open up the little softgel with your teeth or a pin, squeeze into baby's mouth. Critical for brain development.

Start next, after all these are in place: some sort of Choline. Check DSTNI but the normal dosages are 250 a day for older babies....we use CDP Citicoline from Iherb.com, also PC Body Bio Oil is great- but pricey and Dr. L says it is unnecessary. Cognizin/Citicoline/CDP is excellent, and inexpensive.

Please see the other top post in this forum, for the links to the three amazing DS groups where I learn all this stuff!

Good luck!!