A few months ago there was some discussion on the DSTNI Yahoo! group regarding Curcumin and why it is being used in DS. For some, this may seem obvious, but it's not for everyone. So, I thought I would add to what I had written in the email a few months ago, since I think it'll be helpful.
Some were questioning why Curcumin was being studied at all. Turmeric (the spice which Curcumin is from) is used in India and has been for a very long time. Because of the health benefits that it has shown in use in India, there were questions as to why it was being studied.
Curcumin is not being studied because of what it does in India alone. It’s been studied for many years now. Researchers have seen things in vitro, in vivo and in mice on how Curcumin (the active ingredient of the spice, Turmeric) functions. And how it has amazing properties of: neuroprotection, neurogenesis, synaptogenesis, anti-cancer, anti-inflammatory, increasing GSH levels, improving memory, inhibiting apoptosis, breaking up amyloid beta plaques & tangles, and much more.
Some researchers (many of them at UCLA’s Alzheimer's research center) have decided to take the research one step further and specifically look at it for AD. Because other studies have shown that taking only Turmeric or just plain ole Curcumin does not cross the blood-brain-barrier and is not very readily absorbed, UCLA found the most bioavailable form of Curcumin. They then took that bioavailable, somewhat easily absorbed form, and targeted it even more to get the absolute most bioavailble form of Curcumin. They then bound it to a fatty acid so that it’ll be easier to cross the BBB. This was then tested and found to actually cross the BBB and be able to do things in the brain which are helpful for AD (and many other things).
This is far different than just taking Turmeric and using it because people in India use it. Sure, the health benefits that people see in Indians using it, I'm sure has helped the research scene. But, it's not the reason that Curcumin has been studied so much.
So, because Curcumin has shown good results in vitro, in vivo and in animal studies of various health issues, including Alzheimer's disease, that's why it is now used for people with DS. There is a 50% higher incidence of AD in Down syndrome, so it's only natural that something that has shown so much promise in AD would be helpful for people with DS.
It would be great if there was a study done on Curcumin in people with DS, but that has not happened yet. Dr. Leichtman, with the help of Verdue Sciences, is looking into trying to get a study done using LC in people with DS, but it takes some time.
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Monday, December 12, 2011
Why is Curcumin Being Used in DS?
Thursday, November 17, 2011
Confusion regarding Longvida Curcumin
There were some posts on several DS email groups regarding some comments Teresa Cody had made about Longvida Curcumin at the Orlando CMF (Changing Minds Foundation) conference. It was said that she stated that you could take Curcumin with Phosphatidylcholine (PC) and get the same results as Longvida Curcumin (LC).
I emailed Teresa Cody and asked her about this, because saying something along those lines is very misleading. This is her response, which I thought was beneficial to share,
No, I did not say that. I said that Longvida combined curcumin with Phosphatidylcholine and that is what gets it across the BBB. I read it on their site a few years ago. Now instead of telling you what is in it, they say it is a proprietary mixture, or something like that. I was just telling everyone that they needed PC combined with the curcumin to make it work, so just taking curcumin by itself won't do the same thing. I use Longvida myself. I wasn't telling them not to use it. I'm not sure where they got that.Longvida's site does explain the mechanism how LC works. But, I thought it would also be good to share just a little more information regarding this, in case others believe they may get the same result with just giving any Curcumin and PC.
A mom to a little girl with DS, Liora P., asked Verdue Sciences about this concern and the response is below. I have also linked to the PDF study which was sent that shows what is answered. .
Longvida is not a simple mixture of curcumin and phospholipids Longvida is made with a patent-pending technology (Solid-Lipid Curcumin Particle or SLCP) that is a precise complex which includes phospholipids and other lipids and factors that are critical to its bioavailability and activity.Link to study: http://www.gotdownsyndrome.net/LCvsCurcuminPC.pdf
During development of Longvida a curcumin-phospholipid mixture was tested and it was not much of an improvement. In fact, commercial versions of simple curcumin-phospholipid mixtures do not result in any free curcumin in blood, only the inactivated curcumin glucuronide which does not pass the BBB. Attached is a study which shows that.
I hope this will clear up any confusion anyone might have.
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Posted by Qadoshyah at 12:50 PM 0 comments
Labels: changing minds foundation, curcumin, Longvida, supplementation
Saturday, October 15, 2011
31 for 21: O's Vitamin Protocol
I thought I would share the supplements we give O every day. I often share what we give him and it's on the site here. But, it can never hurt to share it again :).
Morning:
1/2 teaspoon Nutrivene-D Advanced Daily Antioxidant Supplement (Microencapsulted powder)
1 teaspoon (2,000mgs) Nutrivene Longvida Curcumin Powder
2 Nordic Naturals ProDHA Strawberry Flavored gel cap
1 capsule (30 mgs) Zinc
1 1/2 tablets of Nature's Way Ginkgold Ginkgo Biloba
2,000 IU's Liquid Vitamin D
250mg of L-Carnosine
Evening:
1/2 teaspoon Nutrivene-D Advanced Daily Antioxidant Supplement (Microencapsulted powder)
500mgs TriMethylGlycine (TMG)
1/2 lozenge (500mcg) Jarrow Formulas Methylcobalamin B12
1 capsule Nutrivene-D Nighttime Formula
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Posted by Qadoshyah at 7:30 AM 2 comments
Labels: 31 for 21, curcumin, Down syndrome, Nutrivene, supplementation, targeted nutrition, vitamins
Thursday, January 7, 2010
Curcumin & Iron
Some have heard about Curcumin's iron chelation properties and it has caused some concern, understandably. So, I went ahead and researched it out further.
I did ask Blake about it and then I went ahead and researched it out for myself. My findings are consistent with what I have heard from others.
From what I have researched, Curcumin appears to act as an iron chelator. It actually seems to be part of the benefits of Curcumin and one of the ways it is a powerful antioxidant. Here is a quote from the full text of one of the abstracts I will post below (listed with a couple ** by it):
“Iron chelators could be important as chemopreventive agents, and have mechanisms of action consistent with that role. Iron chelators prevent the participation of iron in the Fenton reaction, which reductively cleaves hydrogen peroxide to produce the hydroxyl radical. By inhibiting this and other iron-catalyzed pathways of oxidative stress [45], iron chelators substantially reduce oxidative injury to critical cellular targets, including DNA, lipids, and protein [46,47]. Such an ability to protect against oxidative stress is a hallmark of a chemopreventive agent [48].”
The iron chelation properties of Curcumin do not seem to be much of a concern though. It should be watched if a person is prone to low levels of iron already or anemic to begin with. But, technically it should not be a problem. If there are excessive levels of iron it may chelate some of them, but it doesn’t automatically take away all iron in the body.
----Some abstracts covering this topic:
Curcumin, a cancer chemopreventive and chemotherapeutic agent, is a biologically active iron chelator.
Jiao Y, Wilkinson J 4th, Di X, Wang W, Hatcher H, Kock ND, D'Agostino R Jr, Knovich MA, Torti FM, Torti SV.
Curcumin is a natural product currently in human clinical trials for a variety of neoplastic, preneoplastic, and inflammatory conditions. We previously observed that, in cultured cells, curcumin exhibits properties of an iron chelator. To test whether the chelator activity of curcumin is sufficient to induce iron deficiency in vivo, mice were placed on diets containing graded concentrations of both iron and curcumin for 26 weeks. Mice receiving the lowest level of dietary iron exhibited borderline iron deficiency, with reductions in spleen and liver iron, but little effect on hemoglobin, hematocrit, transferrin saturation, or plasma iron. Against this backdrop of subclinical iron deficiency, curcumin exerted profound 2 effects on systemic iron, inducing a dose-dependent decline in hematocrit, hemoglobin, serum iron, and transferrin saturation, the appearance of microcytic anisocytotic red blood cells, and decreases in spleen and liver iron content. Curcumin repressed synthesis of hepcidin, a peptide that plays a central role in regulation of systemic iron balance. These results demonstrate that curcumin has the potential to affect systemic iron metabolism, particularly in a setting of subclinical iron deficiency. This may affect the use of curcumin in patients with marginal iron stores or those exhibiting the anemia of cancer and chronic disease.
**Iron chelation in the biological activity of curcumin.** **Click here for full text**
Jiao Y, Wilkinson J 4th, Christine Pietsch E, Buss JL, Wang W, Planalp R, Torti FM, Torti SV.
Department of Cancer Biology, Wake Forest University Health Sciences, Winston-Salem, NC 27157, USA.
Curcumin is among the more successful chemopreventive compounds investigated in recent years, and is currently in human trials to prevent cancer. The mechanism of action of curcumin is complex and likely multifactorial. We have made the unexpected observation that curcumin strikingly modulates proteins of iron metabolism in cells and in tissues, suggesting that curcumin has properties of an iron chelator. Curcumin increased mRNA levels of ferritin and GSTalpha in cultured liver cells. Unexpectedly, however, although levels of GSTalpha protein increased in parallel with mRNA levels in response to curcumin, levels of ferritin protein declined. Since iron chelators repress ferritin translation, we considered that curcumin may act as an iron chelator. To test this hypothesis, we measured the effect of curcumin on transferrin receptor 1, a protein stabilized under conditions of iron limitation, as well as the ability of curcumin to activate iron regulatory proteins (IRPs). Both transferrin receptor 1 and activated IRP, indicators of iron depletion, increased in response to curcumin. Consistent with the hypothesis that curcumin acts as an iron chelator, mice that were fed diets supplemented with curcumin exhibited a decline in levels of ferritin protein in the liver. These results suggest that iron chelation may be an additional mode of action of curcumin.
Curcumin: From ancient medicine to current clinical trials
H. Hatcher1, R. Planalp2, J. Cho2, F. M. Torti1, 4 and S. V. Torti3, 4
Abstract. Curcumin is the active ingredient in the traditional herbal remedy and dietary spice turmeric (Curcuma longa). Curcumin has a surprisingly wide range of beneficial properties, including anti-inflammatory, antioxidant, chemopreventive and chemotherapeutic activity. The pleiotropic activities of curcumin derive from its complex chemistry as well as its ability to influence multiple signaling pathways, including survival pathways such as those regulated by NF-κB, Akt, and growth factors; cytoprotective pathways dependent on Nrf2; and metastatic and angiogenic pathways. Curcumin is a free radical scavenger and hydrogen donor, and exhibits both pro- and antioxidant activity. It also binds metals, particularly iron and copper, and can function as an iron chelator. Curcumin is remarkably non-toxic and exhibits limited bioavailability. Curcumin exhibits great promise as a therapeutic agent, and is currently in human clinical trials for a variety of conditions, including multiple myeloma, pancreatic cancer, myelodysplastic syndromes, colon cancer, psoriasis and Alzheimer’s disease.
A theoretical study on Cu(II)-chelating properties of curcumin and its implications for curcumin as a multipotent agent to combat Alzheimer's disease. Curcumin has been recognized as an efficient natural product to treat Alzheimer's disease (AD) by scavenging radicals and blocking Aβ aggregation. As metal ions, e.g. Cu(II), are also implicated in AD and curcumin is a metal chelator, it is interesting to investigate curcumin's metal-chelating property, which stimulates our interest to evaluate curcumin's Cu(II)-chelating ability and the effect of Cu(II) on its radical-scavenging activity by theoretical calculation. It was revealed that curcumin could efficiently sequester Cu(II) and the Cu(II)-curcumin complexes were more active than the parent curcumin in scavenging radicals by donating proton or electron. Therefore, curcumin is a multipotent agent to combat AD, with the activities of scavenging ROS, blocking Aβ aggregation and chelating metal ions.
Efficacy of curcuminoids in alleviation of iron overload and lipid peroxidation in thalassemic mice.
Thephinlap C, Phisalaphong C, Fucharoen S, Porter JB, Srichairatanakool S.
Department of Biochemistry, Faculty of Medicine, Chiang Mai University, Chiang Mai 50200, Thailand.
Non-transferrin bound iron (NTBI) is detectable in plasma of beta-thalassemia patients and participates in free-radical formation and oxidative tissue damage. Desferrioxamine (DFO), deferiprone (DFP) and deferasirox (DFX) are iron chelators used for treatment of iron overload; however they may cause adverse effects. Curcuminoids (CUR) exhibits many pharmacological activities and presents beta-diketone group to bind metal ions. Iron-chelating capacity of CUR was investigated in thalassemic mice. The mice (C57BL/6 stain); wild type ((mu)beta(+/+)) and heterozygous beta-knockout ((mu)beta(th-3/+)) were fed with ferrocene-supplemented diet for 2 months, and coincidently intervened with CUR (200 mg/kg/day) and DFP (50 mg/kg/day). Plasma NTBI was quantified using NTA chelation/HPLC method, and MDA concentration was analyzed by TBARS-based HPLC. Hepatic iron content (HIC) and total glutathione concentration were measured colorimetrically. Tissue iron accumulation was determined by Perl's staining. Ferrocene-supplemented diet induced occurrence of NTBI in plasma of thalassemic mice as well as markedly increased iron deposition in spleen and liver. Treatment with CUR and DFP decreased levels of the NTBI and MDA effectively. Hepatic MDA and nonheme iron content was also decreased in liver of the treated mice whilst total glutathione levels were increased. Importantly, the CUR and DFP reduced liver weight index and iron accumulation. Clearly, CUR is effective in chelation of plasma NTBI in iron-loaded thalassemic mice. Consequently, it can alleviate iron toxicity and harmfulness of free radicals. In prospective, efficacy of curcumin in removal of labile iron pool (LIP) in hepatocytes and cardiomyocytes are essential for investigation.
--------
Another plus for Curcumin: Hydrogen peroxide scavenger ~
Antioxidant and radical scavenging properties of curcumin.
Ak T, Gülçin I.
Faculty of Arts and Sciences, Department of Chemistry, Atatürk University, TR-25240 Erzurum, Turkey.
Curcumin (diferuoyl methane) is a phenolic compound and a major component of Curcuma longa L. In the present paper, we determined the antioxidant activity of curcumin by employing various in vitro antioxidant assays such as 1,1-diphenyl-2-picryl-hydrazyl free radical (DPPH*) scavenging, 2,2'-azino-bis(3-ethylbenzthiazoline-6-sulfonic acid) (ABTS) radical scavenging activity, N,N-dimethyl-p-phenylenediamine dihydrochloride (DMPD) radical scavenging activity, total antioxidant activity determination by ferric thiocyanate, total reducing ability determination by the Fe(3+)-Fe(2+) transformation method, superoxide anion radical scavenging by the riboflavin/methionine/illuminate system, hydrogen peroxide scavenging and ferrous ions (Fe(2+)) chelating activities. Curcumin inhibited 97.3% lipid peroxidation of linoleic acid emulsion at 15 microg/mL concentration (20 mM). On the other hand, butylated hydroxyanisole (BHA, 123 mM), butylated hydroxytoluene (BHT, 102 mM), alpha-tocopherol (51 mM) and trolox (90 mM) as standard antioxidants indicated inhibition of 95.4, 99.7, 84.6 and 95.6% on peroxidation of linoleic acid emulsion at 45 microg/mL concentration, respectively. In addition, curcumin had an effective DPPH* scavenging, ABTS*(+) scavenging, DMPD*(+) scavenging, superoxide anion radical scavenging, hydrogen peroxide scavenging, ferric ions (Fe(3+)) reducing power and ferrous ions (Fe(2+)) chelating activities. Also, BHA, BHT, alpha-tocopherol and trolox, were used as the reference antioxidant and radical scavenger compounds. According to the present study, curcumin can be used in the pharmacological and food industry because of these properties.
Qadoshyah
Tuesday, September 15, 2009
A Little More Info On Longvida
I found out a bit more info on Longvida and exactly what the fatty acid part that is that it consists of:
Soy lecithin with high phosphatidylcholine content, stearic acid, and vitamin C palmitate.That's all very good stuff! The PC is used in individuals with DS in the Changing Minds protocol, so I think that's great that it is in Longvida as well.
More later,
Qadoshyah
Thursday, September 10, 2009
Curcumin Studies
I thought I would post some links to a few good studies showing the benefits of Curcumin.
Neuroprotective Effects of Curcumin
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17569212
Neurogenesis and Synaptogenesis
http://www.ncbi.nlm.nih.gov/pubmed/16646663
Neurogenesis in the hippocampus
http://www.jbc.org/cgi/content/abstract/283/21/14497
Curcumin increases GSH levels
http://www3.interscience.wiley.com/journal/121654363/abstract?CRETRY=1&SRETRY=0
Improved memory & inhibits apoptosis
http://www.cmj.org/Periodical/paperlist.asp?id=CMJLW2008430312239002495&linkintype=pubmed
Qadoshyah
Monday, September 7, 2009
Loads of Information about Longvida Curcumin
Alright, well, this is the post I've wanted to get up for awhile. All the loads of information I've gotten about Longvida and continue to forward to folks who are interested in more information about this. So, here goes . . .
Why is Longvida Curcumin different & better than just plain 'ole Turmeric?
Longvida is based on a patent-pending invention Verdue Sciences license from UCLA that was developed by a group in the Alzheimers center there. As you probably know, curcumin has tremendous promise as a potential Alzheimer's treatment and anti-inflammatory and has at least 10 different neuroprotective effects, but its not water soluble or bioavailable via oral dosing. What we have done is scale up this technology that coats curcumin microparticles with an amphiphilic/lipophilic coating. The support for its absorption is based on pK data and research from UCLA showing it reverses amyloid beta, tau tangles, neuroinflammation, and neurooxidation in Alzheimer's models. The formula was selected from hundreds of mainly lipid-based formulas that were tried and this one was selected based on bioavailability data in animals and humans. Of particular interest is what we believe to be the highest brain curcumin levels in animals that have been achieved via oral dosing. All the ingredients are commonly found in the food chain and are legal dietary supplement and food additive ingredients.
The other ingredients in Longvida Curcumin are a fatty acid & lecithin. Why are there two other ingredients in it? They are needed for optimum absorption.
What is the cost of Longvida Curcumin & where can it be ordered?
Because Longvida Curcumin is so new and not readily available through other companies yet, the pricing is only introductory pricing, so will be changing once it is widely available.
Longvida can be ordered by contacting Blake Ebersole at:
Blake Ebersole
1250 E. Conner Street
Noblesville, IN 46060 USA
+1.317.776.3600
bebersole@vs-corp.com
www.longvida.com
*Note: Longvida's website doesn't have much information on it yet, but it should be up shortly!
Is there any research about Longvida?
Yes, there is. I asked Blake Ebersole this question back when I was first looking into this in May '09. He sent me the powerpoint that was given at Neuroscience in November and also gave me another pdf from the UCLA Alzheimer's researcher who I have been in contact with (Sally Frautschy). I haven't looked at what he sent yet, but I will be going through it.
Because the data regarding this formula has not been published yet, I cannot post or give any of the above info that he sent me out. UCLA is in the process of putting the manuscript together and the journals won't publish data that has been made public elsewhere. But, you are welcome to email Blake and he should be able to pass on the research that he has.
I also have several studies that show all the benefits of Curcumin. I will try to post those up at another time.
What is the dosing?
The dosing for Longvida Curcumin is not a clear issue, because it is so new and has such limited use in people. I asked about how the dosages some of the other children who are on this are taking and this is what I was able to find out: a 3 yr old taking 6000mgs/day, 4 yr old twins - 2-4g [2000-4000mgs]/day, two teenagers (1000, 4000 & 6000mgs per day),
I also emailed Chris Hempel (mom of twin girls with Niemann Pick Type C Disease who we originally found out about Longvida from) and asked her a few questions regarding the dosages her daughters take and all. She gives them 6 capsules a day (3000mgs) each and they are currently 5 years old.
We give my brother 2000mgs/day. Initially we started at 500mgs/day for a week, then increased to 1000mgs/day and stayed at that for 7 weeks. We then increased to 1500mgs/day for a week and finally went to our goal of 2000mgs/day. Whenever you start something new, you want to start slow and increase it slowly so that it doesn't get overwhelming.
Several other parents of children with DS are using 1000mgs, 1500mgs, and even 2000mgs. Dr. Leichtman has recently started using this with his patients and he is using the dosage of 1000mgs/day for the time being.
How many people are using this?
To my knowledge, there are around 100 families/individuals using this with their child/children with Down syndrome. There are probably others who are using this with their kids/adults with DS that I am not aware of. If you're using this with your kid, would you mind sending me an email or leaving a comment here? That would be great, since all the more information we have about this the better, since it is all SO new.
Information from Sally Frautschy, professor of Neurology from UCLA (& she also helped develop Longvida):
I emailed her the log of what we have seen with Osiyyah, as I have been in contact with her since before we started Longvida. She was glad to know that we have seen changes and she also said she was surprised that we had seen all those improvements at such a low dose. I was surprised as well, as I really didn't expect to see any changes. But, what we saw (& see) is so amazing, it has to be from the Longvida.
She said that there is approximately 250mgs of Curcumin per 1000mgs. The other ingredients in Longvida are the fatty acid and lecithin. The fatty acid and such are necessary to help make the Curcumin bioavailable.
She also suggested giving the full Curcumin dose once a day, at night or before bedtime. This will help so that the Curcumin can do it's optimum, while the child is resting and it's body isn't "working" on anything else.
But, it's also because it will build up in fatty tissues, like the brain, so it doesn't need to be given more than once a day.
She also recommended giving a higher dose for 7 days once a month. I am considering doing that with Osiyyah. He will be taking 2000mgs/day and then for 7 days a month go up to 3000mgs/day.
Question 1 - "What do you think an ideal dose of Longvida would be for a child with DS (let's say age 4)?"
Sally said he best guess is that a baseline for a small child would be 250-500mg of Curcumin. Which would be 1250-2500mg of Longvida. We are at the 2000mg/day mark (after being at 1500 for the past week), and just may increase to 2500mg. We will see how things go.
Question 2 - "You suggested to increase the dose for 7 days a month. Is that to help it (Curcumin) build up in the fatty tissues?"
Sally said it is to help build up the dose in fatty tissues, but it is more specifically to clear amyloid from the brain. She said the dose for clearing amyloid appears to be higher.
Question 3 - "How much of a higher dose do you think would be necessary to clear the amyloid from the brain?"
Sally said in a study using mice getting levels of 0.5 uM in plasma is high enough to reduce the size of preexisting plaques in mice in 7 days. She said that seems to be a good target.. She would suggest giving a young child 1000mg Curcumin (which is equivalent to 5000mgs Longvida).
Yet more information from Prof. Frautschy regarding Longvida:
"CURCUMIN IS NOT LIKELY TO PROVE TO BE A BLOOD THINNER. The in vitro data arguing that curcumin can be a blood thinnner has not panned out in vivo. It had the opposite effects in our patient study. IN terms of the blood thinning properties of curcumin, there is no data in vivo to support that curcumin acts that way, nothing at all like aspirin. It is highly unlikely since it doesn't impact COX-1 directly. However, EPA from fish has "blood thinning" (as demonstrated by restriction of platelet aggregation) properties and DHA may impact that to a lesser extent. . I suggest that when on these supplements to get a clotting tests after 3 months on the supplement, in case there is an unforeseen interaction of DHA/EPA and curcumin. If there is easy bruising when one bumps themselves, make sure to go get clotting tested. My guess is that if one is on a high dose of DHA, then this would lower the dose of NSAID one needs (curcumin or whatever), but again , we don't know the perfect combination because NIH and pharma will not fund the proper number experiments needed to do to answer these important questions.
INTERACTIONS: Don't know about interactions of curcumin with ginkgo biloba."
Qadoshyah
Posted by Qadoshyah at 11:37 AM
Labels: alzheimer's disease, curcumin, Down syndrome, inflammation, Longvida, neurogenesis
Saturday, September 5, 2009
Posting . . .
Sorry for not posting the past few days. We were gone Thursday for a speech evaluation for my brother. We're seeing a new ST now and she seems to be exactly what we are looking for :). Friday I was busy doing various things. I rarely get time on the computer on the weekends, so don't be surprised if you don't see a post from me until Monday.
I am hoping to put together a big post with a bunch of information about Longvida Curcumin and all the info I've received about it from Sally Frautschy (professor or neurology from UCLA) and others.
After I get the Longvida information up here, hopefully I'll post some other information about speech, supplements and whatever else I come up with :). I hope to try to keep this blog as informative and updated as I can.
That's all for now . . .
Qadoshyah
Tuesday, September 1, 2009
Changes Since Starting Longvida Curcumin - Log 2 @ 2000mgs/day
Changes Since Starting Longvida Curcumin Part 2
-Started 1500mgs/day on June 29th – week 8 of Longvida. We have been giving him the full dose at night, as recommended by professor Frautschy.
-Increased dose to 2000mgs/day July 7th – week 9 of Longvida. Osiyyah has said several new words and phrases. He is also saying the other new words he learned so well and so clear – he just continues to get clearer.
He is saying cookie as “tookie.”
He has said “kitty” – “titty.” It has really helped that I just got two new kittens for my rabbit barn and he thoroughly enjoys seeing them. He has even said “hi kitty” and “bye kitty” when we go in and out of the barn.
He says every goat’s name as best as he can. Several of them you can make out the name of the goat, but a few you cannot.
Can say Riata’s (one of the goats) name very well – at least the first part. “Reeyah” is how he says it. It is SO cute to watch him make that “R” sound!
He said “big pig” for me the other day.
The end of week 7, he said “Tub” for the therapist. That was amazing, as he always has such trouble saying the latter part of the word.
Week 9 –
He said a lot of new words this week! Zebra, Deer, Two, and Boot!
Learned to say “Poo” instead of only knowing how to say “Pee” for whenever he had to go to the bathroom.
Week 10 & 11 –
He is consistently saying 3 and 4 word sentences all the time. A week ago he said “Yophiyyah gave me a bar” and “Riata ate my bar”. Of course it wasn’t as clear as we would speak, but we could completely understand what he was trying to say.
Today (7-28) he yelled to his sister, Ezriyah, and told her that Yophiyyah took her seat at the table. It was so cute! He was saying a sentence!
He told me a sentence the other day clear as anything, but I can’t remember for the life of me what it was he said!
Said the word “Puppy” clear as day. We got a new puppy last week, so that has helped him say that word more.
Week 12 & 13 –
Said two new words yesterday when I did speech with him – Fire & Temple. We were singing together and those two words were in the song and he said them so well.
He has started saying the word “Hi” very clear. He says it all the time when we go out to the bunny barn – “Hi kitty” and “Hi bunny.”
8-7-09 – Said two new words today – “Sock” and “Shoe.” Both are huge improvements, since he normally calls his socks and shoes and feet, “peet.”
Week of 8-16-09 (through 8-30-09) – This week he started asking “Why” almost every time you tell him something. Osiyyah says it as “I”, but in a tone that dictates a question. It is SO cute. He has *never* done this before, so this is amazing.
Whenever he does something like jumping off the couch, or skipping between chairs, or turning off & on a lightswitch, he says “at” for “Watch.” He’ll put it together with whoever’s name he is trying to show – like “Da at.” He’ll keep doing it every time he does it also. It’s so cute, as he has never done this before either!
He’s also started saying “wait” when someone is going somewhere with him. Like everytime him & I go upstairs to do speech stuff, or he comes out to the bunny barn with me, he says “ait” if I get just a step or two in front of him. It’s so hilarious! If you do it back to him, he thinks it’s the greatest thing :).
Last week (8/23) he said “Tractor.” The next day he was telling one of his sisters “Tractor here.” It came out more like “Tractor ere.” But, you could understand what he was saying!
He has been copying words when we read, sing or talk, like crazy. It’s been a lot more than normal and he’s been saying the words MUCH clearer. Very cute!
He finally learned to blow bubbles last week (8/23). I don’t know that I attribute this to the Curcumin or not though, since we have been working very hard on him being able to blow bubbles by blowing out of his mouth for the past several months.
We watched a video on Lewis & Clark a few weeks ago and ever since then Osiyyah has been walking around saying Sacagawea. His version of it is “greea.” I think he thinks it’s a fun word to say :)!
Monday, August 31, 2009
Changes Since Starting Longvida Curcuming - Log 1 @ 1000mgs/day
Changes Since Starting Longvida Curcumin
Started: 5-4-09
Week 2 - started 1000mgs/day:
Is putting two words together A LOT! Trying to say numerous two word sentences. "Bunch Hand" when asking for a bunch of pretzels in his hand. There are several other ones also.
Is trying to say many new words. Said "Scissors" the other day and we could
totally understand what he wanted. Signing & trying to cue with me as we sing the songs at church. He was trying to say the words as best as he can also.
Week 2 ½ to 3:
Said "scissors" when the kids were talking about scissors
Said "alfalfa" when Yo (his twin sister) & them were outside dealing with
the goats
Says "chicken" when signing chicken
Week 3 ½ to 4:
Said "Abba" (what the kids call Dad) clear as day!
Has been consistently saying "Bunny" and "bye-bye bunny" when we leave my barn at night.
Said "cookie" as best as he could when asked to say it - "ookie"
I really can't believe how much his speech has jumped. He says new words all the time and tries to copy and say new words whenever he can.
He doesn't always say them so we can totally understand them, but most of the time you can hear a little bit of the word that he is trying to say.
Says the name of his favorite goat, Willa - "illa."
Week 5:
Saturday (6-6): When they were getting ready to go out to milk the goats, I asked Osiyyah what they were going to feed the goats. He was standing there, crossed his arms and his leg and said "tink" (think) and then answered with "alfalfa." So cute!
Said two new words today (Sun.) - Apple & Blue. It's completely amazing that he is actually saying these words! He has never said Apple or Blue anything close to clear. It's always just been "ple" for Apple or "b" for Blue.
Said "Boobies" when Norayah (his brother) was tickling him this morning
(Mon).
Thought: I had been wondering about Apraxia with Osiyyah, but since starting the Curcumin and seeing these changes, my feeling that he may have it has really decreased. I'm wondering if this would have anything to do with helping with cognition and such in regards to Apraxia. Because, he has been able to say words he has never said before (and continuing to use them). AND, he has been saying words, well one word in particular, that he said months ago and never said again. He says "Bunny" now, whereas before he rarely said it. If you could make him say it, it was amazing. He had said it about 9 months ago and never really said it again.
Started singing at random times. He says all kinds of sounds & words, closes his eyes and really gets into the singing. He started singing while we were driving home in the car the other day, and there wasn't even any music on. He's continued to do it and even did it this morning with Norayah while he played the guitar. It's so cute!
Said "Pig" the other day.
At his therapy appointment on Friday (6-12), the therapist, Liz, commented that "he is talking a lot more today." We hadn't even told her that we were doing anything different. We told her at the end of the appointment and she was interested in hearing more.
Week 6:
Said "Bubble" this morning (6-15).
Week 7:
He sings every time we have bible study or church throughout most of the songs. He never did this before and every time we'd ask him, he would never do it. This is just so cool!
He seems to understand everything so much better and so well. I rarely have to repeat myself when asking Osiyyah a question, or asking him to do something, or telling him something.
Osiyyah has continued to say all the new words he has learned and hasn't forgotten one of them :).
Long overdue Update
I'm so sorry for the lack of updates! I will try to update this more regularly, we'll see how that goes though ;).
I'm sure y'all are wondering how the progress is going still with Longvida Curcumin. It's been about 3 months now (almost 4 actually) since we started giving my brother Longvida. We have continued to see amazing changes and results from it. I kept a log of the first 8 weeks of giving it to my brother at 1000mgs/day and then I started a second log when we increased the dosage to 2000mgs/day.
There is also a lot more information that I have not posted to my blog yet, since I have been in contact with a professor of Neurology from UCLA who helped develop Longvida - Sally Frautschy. She has been a wealth of information!
Over the course of this week, hopefully every day, I will post a new post with the information that I am referring to above. I don't want to post it all at once or it might be overwhelming :)!
I will post the log I kept of the changes we saw in my brother over the first 8 weeks here today.
Please let me know if you have started your kid on Longvida or would like to and if you wouldn't mind, please keep a log any changes you may see and the dosage it is at. This is all SO new, the more information we can have the better. So, the more people who use it and keep records of stuff the more it'll help. Feel free to email me with any of this and also any questions about Longvida Curcumin - qf @ gotdownsyndrome.net (remove spaces).
Qadoshyah
Friday, April 24, 2009
UCLA's Curcumin
I recently was informed of a bioavailable Curcumin formula that UCLA has developed along with Verdue Sciences. The information is absolutely fascinating and it shows a lot of promise for individuals with DS.
This appears to cross the blood brain barrier, which is incredibly important. Curcumin shows a lot of promise in breaking up amyloid beta plaques & tangles, decreasing oxidative stress & apoptosis, and causing neurogenesis & synaptogenesis. It even has the possibility to increase glutathione levels. But, because it is typically not very absorable, it does not do many of these things when just plain ole Turmeric is given.
Verdue Sciences & UCLA have developed a formula called Longvida that is very optimized and they have seen the highest brain levels of Curcumin with this formula. Longvida is not out on the market yet, but the patent is being worked on. UCLA & Professor Frautschy are working on putting together the manuscript of their research for the journals.
We have decided to order some of this Curcumin and give it a try with my brother. It is very safe and has potentially amazing benefits.
I will try to post more information next week, Lord willing. In the mean time feel free to email me if you would like more information - qf @ gotdownsyndrome.net (remove spaces).
Qadoshyah

















