Monday, November 7, 2011

How To Choose What To Give?

I know it can get overwhelming at times as to what supplements to give, how to afford them, etc. Every family has their own set of supplements they give and the reasons why they give them. Yes, some are the same across the board, but you will typically find a variety of additional supplements that each family uses.

When the discussion of different supplements arises on various message boards, one can feel overwhelmed at times as to what to give.

Should I be giving that too? Oh and that supplement? What about this supplement that I just heard so-and-so recommend?

If you gave every supplement every person suggested, the list would be incredibly long and really expensive.

This is the way we do it:

I research things and I look at all the pros and cons of every supplement. Then, I look at what I feel, from research and our current situation, is the most important for O and he takes those supplements.

Longvida Curcumin is a large expense every month, but that one is an "unquestionable" supplement. One that, because of research and what it does for O, we won't do with out.

The "base" supplements he takes are:

Nutrivene-D Daily Supplement & Nighttime Formula
Longvida Curcumin
Ginkgo Biloba
Zinc
Vitamin D
TMG
Blueberry
Methylcobalamin B12
DHA

There are more supplements that O would be taking, if we were able to do it. At some points we do add more on and then that's just factored into what he needs to take. The supplements I would add on, if possible are:

Coenzyme Q10
EGCG
Seabuckthorn (possibly)

But, because I feel O is getting what he needs with the current supplements he takes, I'm not going to stress over not being able to get every good supplement into him.

There are some things he is simply not able to handle, even though they look like they should be good for him, according to research. Like Probiotics, Piracetam, Nutrivene's Daily Enzyme, or Folinic Acid, to name a few.

If your child can't handle a certain supplement, then maybe he will never be able to handle it, so therefore it's not beneficial for him or her. Or, maybe the child is too young and he will be able to have it again as he gets older. Or, maybe he needs a lower dose. It takes a lot of figuring out to see what works best for your child.

There are also some supplements which many families give, even to young babies, that we simply will not use with O. Or, certain dosages of supplements. Because through research that I've done, I don't feel it is safe to give him.

One of those supplements that we would not give, and many people use, is Prozac. There is no way that we are comfortable giving Prozac to O. I'm quite sure there are other supplements as well, but I can't think of any off the top of my head.

There is a certain Ginkgo Biloba dosage that is recommended by the Changing Minds Foundation which I feel is extremely too high of a dosage. So, we give the recommended dosage from Trisomy 21 Research Foundation & Nutrivene.

If there's something I'm not sure of, I'd rather be safe than sorry. It's my brother's health and well being we are trying to help, not damage, in giving him supplements.


Country Girl Designs

10 comments:

My Little Wonders said...

I really enjoy your supplementation posts as it helps me narrow in on what I want to give Miss K. I am slowly adding supplements to her day, both as she gets older (she'll be 1 in two weeks) and as I learn more. For now, we give the NVD daily and LC on a regular basis (sometimes I forget the LC as I have to give that at night so she doesn't spit it up). I will be adding the NVD nighttime when it arrives later this week.

Next on my list is zinc and vitamin D, but I want to have a blood draw first to check current levels (she'll have that done after her 1 year check). I agree with you ... Prozac concerns me greatly and I do not see us ever giving it to her. I do want to restart DHA; she had been on it when she was younger, but she would spit up with it and I had to throw away a few clothing items, so I shelved the idea. I think I could give it to her now at night with the LC and we'd be okay.

Thank you for taking time to share what you are doing with O. I appreciate the information and thoughts. :)

Pilgrimian said...

Hi there!

We have been giving our 17-month-old daughter w/ D.S. Acetyl-Glutathione (made by Nutricology) and S.O.D. (Vitamin Shoppe). It's great to be reading about Nutrivene Longvida Curcumin--thank you for this valuable info. It led me to a post you made elsewhere on the 'Net in 2009 with many links to published papers and UCLA studies. I had read your post about the other form of glutathione, too, that causes Leaky Gut, and made sure what we weren't giving our daughter that form. A chiropractor friend told me that the acetylized form of glutathione is the best. However, after reading your latest blog we're reconsidering our daughter's supplementation regimen.

Pilgrimian said...
This comment has been removed by the author.
Liora said...

Hi! Make sure the CoQ10 is the UbiquinOL (not the Ubiquinone) form.

the amount used in the studies has been 10 mg per kg. We give a little less as our toddler is 12 kg+ she takes 100 mg a day

Qadoshyah said...

@My Little Wonders - You're welcome! That's why I can blog, in the hopes I can help someone :).

@Pilgrimian - At the top of my blog, I have a button that links to all the posts on my blog about Longvida. There is quite a bit of info there :). I have never heard of Acetyl Glutathione. Also, in regards to S.O.D...I'm doing some research on that. I know SOD is overexpressed in DS and therefore causes TOO much oxidative stress and free radicals (which is a bad thing). But, I don't know the specifics of the supplemental SOD and if it's similar to the overexpressed SOD gene.

@Liora - thanks! Yes, that's the form of CoQ10 we would use.

km said...

Thank you so much for all your work to help your brother and others in the process! My son is 8 with DS and I have felt overwhelmed and guilty that I have not done enough for him via supplementation. I found your site and blog on the day I really needed some friendly support:) Thank you for all of your work for our wonderful DS kids!!

Qadoshyah said...

@km - I'm so glad to hear from you that the blog has been helpful! I know the overwhelming feeling. Feel free to email me anytime - qf {at} gotdownsyndrome {dot} net (remove spaces).

Holly Fedele said...

Hi. I visited this blog from "The Blessing Of Verity Blog" and am absolutely new to the idea of supplementation for Ds. I respect Susanna over at the above blog so much, I came on over to check you out.

My son with Ds will be 4 in a few months. I have already purchased Ginko Biloba in a powdered capsule. I will pour the powder in his milk each morning. I didn't figure out the dosage until I had already bought it so I purchased 120mg. According to his weight, he will need a little less, but my question to you is: Is the recommended dose you gave in your FAQ the max advised dose or an average? If it is average, I will just give him the little extra.

I also purchased Fish Oil gummies. It is Fish Oil with D3. The serving size is 4 gummies, which contain 736 mg of fish oil, 192 mg or omega-3, 1000 IU vitamin D, 32 mg of EPA and 160 mg of DHA. It is listed as being for adults, but I assumed that giving my son 1 gummy would be a safe bet. Each of those numbers divided by 4 seem to be acceptable for his weight. But I'm curious if it is too low a dose of Vit D and DHA? Any suggestions?

I do plan to add more supplements later on but wanted to give these two some time first...to look for both positive and negative reactions and just because I've never been much of a vitamin giver before...lol. I am out of my personal comfort zone, but his response times and attention could definitely use the help. Furthermore, the various therapies he receives are making little progress although I know how hard they work and how good the therapists are.

Thanks!

Holly Fedele said...

Hello!

I visited this blog from "The Blessing Of Verity" blog and am absolutely new to the idea of supplementation for Ds. I respect Susanna (the mom of Verity) very much, sp I came on over to check you out.

My son with Ds will be 4 in a few months. I have already purchased Ginko Biloba in a powdered capsule. I will pour the powder in his milk each morning. I didn't figure out the dosage until I had already bought it so I purchased 120mg. According to his weight, he will need a little less, but my question to you is: Is the recommended dose you gave in your FAQ the max advised dose or an average? If it is average, I will just give him the little extra.

I also purchased Fish Oil gummies. It is Fish Oil with D3. The serving size is 4 gummies, which contain 736 mg of fish oil, 192 mg or omega-3, 1000 IU vitamin D, 32 mg of EPA and 160 mg of DHA. It is listed as being for adults, but I assumed that giving my son 1 gummy would be a safe bet. Each of those numbers divided by 4 seem to be acceptable for his weight. But I'm curious if it is too low a dose of Vit D and DHA? Any suggestions?

I do plan to add more supplements later but wanted to give these two some time first...to look for both positive and negative reactions and just because I've never been much of a supplement giver before. I am out of my personal comfort zone, but his response times and attention could definitely use the help.

Furthermore, his progress with his various therapies seem to stall quite often. His progress is minimal. I know how hard the therapists work, how good the therapists are (I work with them in my own career), and his father and I follow up at home. I am ready to try to boost his brain.

Thanks!

Qadoshyah said...

Thanks for the comment, Holly. Sorry for the delay in response.

"Is the recommended dose you gave in your FAQ the max advised dose or an average?" - There is a higher dose that the Changing Minds Foundation recommends. But, Dr. Leichtman and others recommend the dosage I gave.

"Each of those numbers divided by 4 seem to be acceptable for his weight. But I'm curious if it is too low a dose of Vit D and DHA? Any suggestions? " I would recommend giving him the full dosage of 4 gummies, because even at the full dosage, it is not the optimum amount of D and fish oil that he should be getting. Vitamin D should be at least 2000IU at his age.

Anymore questions, don't hesitate to email: qf@gotdownsyndrome.net

Related Posts with Thumbnails