Down syndrome supplements

March 3rd, 2012

There is circumstantial and anecdotal evidence that some supplements may be particularly helpful for Down syndrome. At the moment, mainstream doctors/pediatricians do not recommend supplements targeted for Down syndrome. With no particular help from our pediatrician or developmental doctor, we were left to do our own research and take our own decisions. So, this is what we did.

Please, do your own research. I do not recommend these supplements here, as I am not a doctor. I'm only sharing our experience. 

List of supplements my son takes now:
Morning: longvida curcumin,  ginkgo biloba, omega 3 with D3, probiotic (alternate Culturelle/ Garden of Life every 3 weeks), B12
Evening: ginkgo biloba

What you need to know:

• Ginkgo needs to be Standardized Extract containing min. 24% Ginkgoflavonglycosides and 6% Terpene Lactones. 
• Curcumin needs to be longvida for increased bioavailability.
• Omega 3 needs to be mainly DHA.

After we introduced longvida curcumin we've noticed an increase in speech. This is very subjective, of course, my son was ready to talk more anyway. His teacher also commented on how much more he's talking. After we introduced ginkgo in the morning, the nap was significantly reduced. After we introduced ginkgo in the evening, the night sleep was reduced by an hour. His energy levels stayed the same, so I really think his sleep got more efficient. I'm very pleased with this effect, since the main reason I introduced ginkgo was to increase REM sleep, which is supposed to help with memory consolidation. Before ginkgo, my son scored 5% REM during a sleep study (vs. 25% typical for age). This is often the case for children with DS.

What we did:

• decided to wait until 3 years old. Some parents start very early and it seems fine.
• did a lot of research/reading. See list below.
• considered only supplements with solid safety record. 
• decided against Prozac, Focalin XR
• I tried each supplement first for a couple of weeks - just looking for weird side effects.
• introduced one supplement at a time.
• introduced supplements in the morning.
• introduced at lower dose, increased gradually

When giving curcumin, ginkgo and omega 3, clotting tests are recommended after 3 months on supplements to check for unforeseen interactions between the three. I'm also planning to ask for zinc levels check. Research shows that zinc levels may start to decrease starting from 4 years old in children with DS.  I'm keeping in mind the risk of sulfation deficiency, but I don't think will be a problem at the current dosages.

Resources we've considered:

• http://www.changingmindsfoundation.org/documents/links.html
• http://gotdownsyndrome.blogspot.com/2009/09/loads-of-information-about-longvida.html
• http://dsdaytoday.blogspot.com/2011/03/longvida-curcumin.html
• http://dsdaytoday.blogspot.com/2011/03/gingko-hows-and-whys-for-down-syndrome.html
• http://changingmindsaboutdownsyndrome.blogspot.com/2011/02/can-sleep-be-as-easy-as-gb.html
• http://health.groups.yahoo.com/group/DS-GB/messages/1?xm=1&m=e&l=1
• http://community.babycenter.com/post/a29912983/how_to_give_longvida_curcumin
• http://sites.google.com/site/superdownsyndrome/supplements/curcumin
• http://sites.google.com/site/superdownsyndrome/supplements/ginko-biloba
• http://sites.google.com/site/superdownsyndrome/gastrointestinal-issues/sulfation-deficits