Tuesday, December 22, 2009

Ginkgo Biloba FAQ

Ginkgo Biloba is frequently given to children with DS. Since it is fairly new to most families who have children with Down syndrome, it was suggested that I put some of the frequently asked questions about it up. That way everyone has one place they can go to find the answers and have one link to give to those who have questions. So, here it goes:

"What is the recommended dosage of Ginkgo Biloba?"

The recommended dosage is 5.5mgs per kilogram of body weight after 3 years of age. A kilogram is 2.2lbs.

"What form can it be given in?"

There are both liquid forms & pill forms. Depending on your child's age & ability to swallow vitamins, would decide which would be easiest to use.

"What are the best brands of Ginkgo Biloba to give?"

The best pill brand would be Nature's Way Ginkgold. If your child cannot swallow pills, you'll want to use a liquid form. It is an absolute pain to crush these pills. Ginkgold can be bought through International Nutrition. It should be available at a health food store as well.

The best liquid brand is Honeycombs Liquid Alcohol Free Ginkgo Biloba. From what I hear, this one does not taste bad! International Nutrition also carries this Ginkgo. If you order directly from Honeycombs, you can order a large bottle. But, it is quite pricey that way, so we've chosen just to buy it through INI.

"What is the best time to give Ginkgo?"

It is recommended to give Ginkgo Biloba in the morning. Give the full dose at once.

"What age can I start my child on Ginkgo Biloba?"

Trisomy 21 Research Foundation does not recommend starting GB before 3 years of age, due to a possible risk of seizures. But, there are many families who have started GB on their children who are well under 3 years old with no ill effects. Ultimately it is up to the parents and if they feel it is safe for their young child. Just make sure you do your research and make sure you are convinced it is the right thing to do at that time.

We chose to wait until my brother was over 3 years old before we even started giving him the full recommended dosage. He took some Ginkgo Biloba when he was under 3, but it was not the full dosage. We will be starting him on the full recommended dosage soon and he is almost 5 years old.

"Why Ginkgo Biloba?"

About 5 years ago, Stanford University a big problem in Down syndrome. GABA receptor, an inhibitor, was ON continuously in individuals with Down syndrome. What does this do? It doesn't allow the nerves in the memory and learning area of the brain to work properly or "fire." In other words, the nerves weren't working. To balance this problem with the GABA receptor, a GABA antagonist was used to turn it down. Because Ginkgo Biloba is a GABA antagonist, it is being used in hopes that it will turn down the GABA receptor. Ginkgo has been used for a very long time and is quite safe.

Things to consider when buying Ginkgo Biloba:

There was one thing mentioned on a DS listserv I'm on, that I thought would be good to add to the FAQ here.

When finding a good Ginkgo Biloba supplement you want to make sure of a few things:
1) low levels of ginkgolic acid
2) high levels of bilobalide
3) and that the product is standardized and not substandard

Ginkgolic acid is an undesirable part of GB, as some people can be allergic to that part. The above two products I mentioned are low in Ginkgolic acid.

Any other questions? Feel free to leave a comment here or send me an email (qf @ gotdownsyndrome . net - remove spaces) and I will try to add them onto this post.


Monday, December 21, 2009

Speech Appointment

This past Thursday was Osiyyah's monthly speech therapy appointment at Tulsa Sunshine Center. It's a new pediatric therapy building that has recently opened. They have been fantastic so far!

It had been a few months since we had seen Kim T. We had been been seeing another ST there (who is also great!), and Kim mentioned that his oral muscles are looking/feeling great. I guess we're doing something right ;).

Osiyyah made a big accomplishment while we were at therapy this past week. He held a bite block in his mouth on each side for 20 seconds. That's phenomenal! It's Bite Block #4, which is thicker than the two bite blocks I have. I only had 2 & 3, so I'm glad we were able to use a different level. Kim let us borrow their Bite block set, so hopefully we can work him through them over the next month before we see her again :)! We did the bite block again this morning and sure enough, he held it there for 20 seconds. 4 times total (2x per side). Yes, praise the Lord!

Kim gave me several other ideas and things to do with Osiyyah too, so it was a very good visit. She got to do more with him too, which was nice. The last time we saw her, she was still doing the evalution with him, so she wasn't able to work with him much.

Things like . . .

Blowing bubbles:
Getting him to say certain words:

The bite blocks!
(me showing Kim how I do it at home ;))
And blowing horns:


Wednesday, December 16, 2009

To Those Using Longvida Curcumin

I'd like to compile some data & information about those who are using Longvida Curcumin and your experience with it. If anyone using LC could please email me *PRIVATELY* that would be great. You can email me either at feargod @ atruechurch . info (remove spaces) or qf @ gotdownsyndrome . net (remove spaces).

I'd like to know:

*The dosage you are using

*Age & weight of your child

*How long you've been using it

*How long you stayed at a certain dose before increasing (if you did that)

*Any changes or lack of changes you've seen

*At what dosage you started to see changes, if you have seen any changes

*And any other experiences you may have had

*Feel free to email me also if you have just started using LC, since it would at least be nice to know you're using it ;).

I am hoping to get some data compiled over the next couple weeks. It would be nice to know and have in one spot how many people (at least on these lists ;)) are using it and what their experiences have been.

Since this is all so new, all the data & information we can get is so valuable! I'd like to compile this and then put it up on our blog or website. Your name can be kept confidential when I put the data together.

Feel free to forward this to anyone you know who may be using LC or any lists/boards who have families using it.

If someone would rather give me a call, let me know and I can give you my phone number. Or vice-versa.



Friday, December 11, 2009

M-O-M . . . A Speech Journey

Speech can be a long hard road for some children. Osiyyah's one of the kids who's weak area is speech. It always has been. He's excelled in almost every other area, but the speech is just slow in coming.

When he was a year or so old, we got some of Sara Rosenfeld-Johnson's material and tools to try to implement some of her work. We did what we could, but it wasn't easy to figure out exactly what Osiyyah needed. We started the straw hiearchy and the horn hiearchy, but more complex things like jaw instability . . . yeah, that took me a couple years to figure out.

Earlier this year, I set out on a quest to study as much as I could (we had 3 books from TalkTools, so I just needed to READ them!) and try to implement whatever oral placement therapy techniques we could.

I read through Sara's books, but the one book that solidifed everything in my mind and made me realize where we needed to start with Osiyyah's speech was the Jaw book. That book was the most valuable resource I read on speech ever. Everything was starting to make sense and it didn't seem like I had such a huge cloud of "what to do's?" hanging over me anymore.

Since reading Sara's books and emailing back & forth with Renee Hill, one of Sara's collegues, I feel we've been able to adequately start to address Osiyyah's jaw instability & weak oral muscles.

So, around February-April of this year we really started to work hard on Osiyyah's speech therapy here at home. On a typical day, I do 30-40 minutes of oral motor & speech therapy with Osiyyah. We do see a speech therapist once a month and she gives us ideas on what more we can do for Osiyyah.

We work on blowing bubbles, blowing horn #2, holding a popsicle stick (with a penny on each end) between his lips, using the chewy tube (15 chews per side), bite blocks and a few other excercises that correspond with all of those.

The consistency of working with Osiyyah on his oral motor & speech has started to pay off. It's taken a few months. There have been times of frustration, tears, triumph & joy.

Frustation & tears when I realized *how much* work he needed. He couldn't even bite & hold for a second on the bite block. It felt, for a moment, that it would take forever! But, thankfully, with much persistence & consistency, just a few weeks later he was doing bite & hold on the bite block for several seconds per side. Triumph & joy then! To see before my eyes, what I had read in the Jaw book, actually happen, was simply exciting.

Besides Osiyyah's jaw instability, he leaves off the ending consonant of most words, whether it's a sound he can say or not. Over the months we've worked hard on this also. One key word that I will use as an example here is "Mom." He always and only called Mom "Ma" because he could not get the ending sound on that word. A couple months ago, he started getting that final "M" sound at the end. And shortly thereafter, started using it in his everyday life & conversations.

"M-O-M." The full word. With every sound said correctly. And perfectly clear. Everytime I hear him say "MOM", I am so thankful. God used our diligence in oral motor therapy, speech therapy & Longvida Curcumin to help Osiyyah talk. Praise the Lord!

I never knew if we would hear Osiyyah say the full word "Mom." I was happy with him saying "Ma" everytime he called for mom. But, to hear him say "Mom" all day long is amazing.


Friday, November 27, 2009

Adoption Awareness Month

November is Adoption Awareness Month. Adoption is something very near & dear to me. If I was able to adopt, I would. But, as of right now it isn't able to happen.

Why is adoption so important? In many countries around the world, Russia, Ukraine, Bulgaria, Serbia, Republic of Georgia, Ethiopia & so many others, children with Down syndrome (& other special needs) are put away into mental institutions. Left to die. It is a horrific & incredibly sad reality. The video below gives a small glimpse into the way many of these children are treated. Not all institutions are as horrible as the one shown in this video, but nonetheless many of the children transferred to mental institutions die within the first year of being there. From sickness, malnutrition, starvation.

Because of this horrible reality, a group called Reece's Rainbow brings awareness and finds homes for many children in orphanages around the world. In the 3 short years it has been in existence, a couple hundred children have found homes.

Due to this fact, a girl named Lydia started a project (the "Darya Project") a week before Thanksgiving to bring one of the children shown on Reece's Rainbow's website home. She set out on a goal to raise $20,000 in 8 days (by Thanksgiving). If she was able to do this, her family would adopt a little girl, Darya, in an orphanage in Eastern Europe. Through bake sales, car washes, photo shoots, and many other things, Lydia was able to raise $26,000 by Thanksgiving morning! As of Friday, the total was $28,500. The extra money is going to another family who has been wanting to adopt a little one with Down syndrome. So, after 8 days of fundraising, 2 children will be rescued out of the orphanages in Eastern Europe.


Wednesday, November 11, 2009

Through Uncharted Waters

I received an email today from Greg Cole, a professor of Medicine & Neurology at UCLA. He works with Sally Frautschy on Curcumin and other things. He was emailing in regards to Longvida Curcumin and our use of it.

His email was a word of caution. A caution to realize that we are "experimenting" with Longvida Curcumin, as it is not clinically proven to help individuals with DS. There have been no clinical trials done on it's safety & use in people with DS. This is a great concern and word of caution and I totally understand where he is coming from and agree.

Whenever we use a supplement that is not clinically proven in people with DS, we are going through uncharted waters and "experimenting." We always need to be cautious and aware of what we are doing. Aware of any changes that are seen with a certain supplement, be it good or bad. And aware of the dosage we use, whether it is too high or too low, or just right.

We've been on the path of using various supplements and "experimenting" with Osiyyah since he was 8 months old (he's 4 1/2 years old now). The way we feel, is that we have to do everything we can for him. Even if something has not been proven in clinical trials. If the research looks promising, is something that looks like it'll benefit him, and as best we can tell is safe to give him, we give it a try. Of course we don't jump into giving him anything unless we have thoroughly researched and am convinced that it is safe & good to try.

It would be wonderful if clinical trials are done, but we can't wait for clinical trials to be done. My brother's life & understanding is on the line. He needs the help right now. This is why we, and many other families of children with DS, take the initiative to use certain supplements well before they have gone through clinical trials.

If we were to wait until something was proven to help children with DS, it would be YEARS and the most crucial time of Osiyyah's development would be gone. I want to do all I can to help my brother reach his fullest potential. That's what I determined from the time he was born and we knew he had DS. To do any less, would not be beneficial to him.

I am so incredibly thankful that we have taken many out of the norm, against the grain steps, because Osiyyah has progressed so well and benefited from them so much. I am convinced he would not be where he is at today had we not started this journey of research back when he was 8 months old. I know that because he visually, before our eyes changed and was a different child, when we started him on the first supplement back then. Granted, that first supplement is Nutrivene-D. But, still, there are MANY people who advocate not to use that supplement, because it is not "clinically proven." If we would've listened to many of the "professionals" in the DS world, we would not be giving Nutrivene-D. I'm so thankful we didn't listen to them.

There is so much that many families use with their kids with DS that are not clinically proven in DS. But, why are they used by so many families? Because someone took the initiative and stepped out of the box and decided to give that particular thing a try. Those who have taken the initiative into uncharted waters have benefited many families. To name a few, Dr. Turkel, Dixie Lawrence, Dr. Leichtman, Teresa Cody, and others.

Our family will always be thankful for the work of people like Dixie Lawrence & Dr. Leichtman in regards to Nutrivene-D. It changed Osiyyah's life. He is not the boy he was before Nutrivene-D.

Or mom's like Chris Hempel, whose twin daughters have Niemann-Pick Type C disease. That's how we found out about Longvida Curcumin. Longvida Curcumin has changed Osiyyah's life also. He can communicate & understand so much more than he was able to 5 months ago. It's amazing.

We will gladly continue to go through uncharted waters and step out of the box to be able to benefit my wonderful little brother and others with Down syndrome.


Monday, November 2, 2009

A Time To Dance

Osiyyah thoroughly enjoys dancing! We dance together quite often and he always has such a blast. One of my brother's was doing some remodeling to the bathrooms, so he took out the mirror. Osiyyah thought it was the coolest thing to dance and watch himself in the mirror :)!


Sunday, November 1, 2009

Silent Auction At "From The Trenches of Adoption"

Valerie & her husband have biological triplets, adopted 2 boys with special needs from 2 different countries within the last couple years. They are now in the process of adopting 3 more children from Bulgaria.

Because the costs of adoption are so high, they are having a silent auction over at their blog From The Trenches of Adoption. There are a lot of nice items available at the silent auction.

As some of you may know, I have a small home business doing graphics & web designing, Country Girl Designs. I donated a Blog Makeover to the Silent Auction.

You can see all the items at this link (just keep scrolling down to see them all). You can see the Blog Makeover at this link.

Feel free to pass on & forward to anyone you know :)!


Thursday, October 29, 2009

Our book & Longvida experience featured at Jaden's Journal

Noelle from Jaden's Journal & My Healthiest Life asked me to write about the changes we've seen in Osiyyah since starting Longvida Curcumin. While she was at it, she also mentioned our book (Down Syndrome: What You CAN Do) in her post.

You can check it out at this link ~ "Is Curcumin A Breakthrough Treatment for Down Syndrome?"


Longvida Curcumin News

International Nutrition has started carrying UCLA's Longvida Curcumin. Each bottle contains 60, 500mg capsules. The price is $39.95, but INI is having a special introductory price of $35.95.

You can view the product by clicking here.

Here is some more changes we have seen with Longvida Curcumin over the past month:

9/28/09 –

Osiyyah has said a few new words lately. He started saying “Hooee" (one of his sister's nicknames) He can say it really well, unless he starts getting excited and saying it in a fast tone and then it comes out as “hooweewe" or "weewee" ;).

He said “Oops” this morning during speech very well. But, he could only say it with the “p” sound in the middle if I slowed him down and made him say it real slow. Otherwise it was just the “s” sound at the end.

10/28/09 ------ Deeper Progress:

We have continued to see progress and I’d call it “deeper” progress now, as we are into it farther.

Osiyyah asks questions all the time – like “Why?” and “Who?” He has never been one to ask “Who does this belong to?” or “Why are we doing this?” etc. So, it has been neat to have him asking those types of questions. He also asks “What?” when he wants to be sure he’s heard something right or something along those lines. Today (10/28) he started asking “Do?” for “What are you doing?” or “What can I do?”. Wow, that is simply amazing!! I was shocked to hear him say that, as I had never heard him say that before!


Wednesday, October 28, 2009

Straw #3

Sorry for the long break between posting!

At our last speech therapy appointment, the ST suggested that we move Osiyyah up to straw # 3. He had been at #2 for awhile and it was time to move on. So, we decided to move up to #3 and I'm glad we did. I have noticed more improvement in drinking with that straw since we started it.

In case someone is not familiar with what I am referring to when I say "Straw #3" I am referring to the Straw Hierarchy from TalkTools/Sara Rosenfeld Johnson's Oral Motor (Placement) Therapy Program.

The straw hierarchy works on lip close, tongue retraction & lip rounding. In the above picture, Straw #1 is on the left & it goes to Straw #8 on the right (they are in order from L to R). With Straw #1, it takes a little bit longer to "master" that straw than some of the others. Straw #1 has a long tip before the tongue block. As the child is able to drink out of the straw better & better, 1/4" is cut off of the straw, until there is only 1/4" of straw left above the lip block. This will encourage the child to suck out of the straw using his lips, rather than his tongue. By using his tongue, that encourages tongue protrusion and not tongue retraction. Using his lips, it encourages tongue retraction, lip closure & lip rounding.

As to where to get Talk Tools Straw Hierarchy, click here.

Straw #3 is quite a tall straw! It looks kind of funny in the cups Osiyyah uses:


Wednesday, October 21, 2009

Josh & Bernadette's Wedding

Josh & Bernadette, both have Down syndrome. They were the first couple with Down syndrome to be married in Tennessee.

There are a couple videos of their wedding & reception at the link below. What a cute couple and beautiful videos!



Monday, October 19, 2009

Buddy Walk: O's Ranch Hands

Wow, last week flew by! I just had time to sit down and answer a few emails, but not to get a blog post up! We picked my grandma up at the airport last week. She flew in from California and is visiting for a couple weeks.

The day we picked her up, our local DS association (DSAT) had their annual "Kick it off Party" for the Buddy Walk. The party was at Pump It Up. We got there kind of late, but still had a BLAST!

The Buddy Walk was yesterday (Sunday). DSAT has a great turn-out and every year their walk grows! The walk draws 2500+ and this was just the 7th annual walk. DSAT does a great job of putting on a wonderful walk and raising awareness about Down syndrome. This was the first year we actually did the full thing (last year we were only there for the last 30-40 minutes), and it was great. We even got to do some dancing while we were hanging out :). Here's a couple pictures from the day:

Hopefully I can post more later . . .


Thursday, October 8, 2009

Coming . . .

I know I've majorly slacked in getting another blog post up. I haven't had much time to sit down and do any blogging. But, I have two blog posts that I want to put up, so hopefully I can get to them between tomorrow and the next couple days :).


Monday, September 28, 2009


My brother was born into a large family and never put off to the side. We've always treated him just like anyone else in the family, expected & encouraged him to help and do what the other kids do. Of course there are certain things he can't do as well, or it takes him longer to do, or he just isn't able to do yet, but those are few and far between. . . especially as he has gotten older.

If we didn't include him in everything and encouraged him to do things, I don't think he would be as far along as he is. We've never put any limits on him and he's always done well.

If he wants to do something, we let him try. If he thinks he can't do it, he is encourage to try some more. If he absolutely can't do it, then we will help him. But, he always gets so excited to be able to help and do things like the other kids.

He helps the kids empty the trash cans that are around the house. Of course he lags behind a little in keeping up with them running around the house, but he gets a kick out of helping. He empties the dishwasher all by himself and knows where just about everything goes. The dishes aren't necessarily put away perfect. The silverware may just be thrown in the drawer and not sorted, but at least he put it where it belongs. Someone will come straighten it up.

The other day I had Osiyyah & his twin sister, Yophiyyah, out in my bunny barn helping me fill water bottles, feed the kittens, feed the bunnies, hold the new day old baby bunnies, etc. Yophiyyah will typically fill the water bottles while I am feeding if she is out there. This time, Osiyyah wanted to fill bottles. So, I told him to find the bottles that needed filling and fill 'em up.

He took the bottles off that needed filled, had me open them and then he tried to fill them all by himself. Now, it's kind of a hard job, so he was not able to do it without someone's help. Yophiyyah offered to help, so he and her pushed the water jug spout in while the bottle filled up. It was so cute to watch them both work at it together and succeed in filling up the bottle!

Today I explained to him what the bottles looked like that needed to be filled and what the bottles looked like that were full. He'll get the hang of it soon, Lord willing.

And, since we're on the topic, here is a picture of him & his sister filling the bottles:

I think living on a farm has been even more beneficial to Osiyyah. He enjoys helping with all the chores and animals, so it makes him be more interactive and work more.

He waters the garden when everyone else is weeding it or picking stuff. He doesn't only water it though, he also waters himself (i.e. turns the hose towards himself), LOL! But, he has a blast doing it!

All this to say, don't put limits on your kids. Encourage them to do all they can and they may just surprise ya and succeed!


Friday, September 25, 2009

Persistence with Speech

I do all of my brother's speech therapy at home with him. We have an ST who we see once a month and she works with him, gives us more exercises/ideas to do with him. We've always been like this - doing everything we can for him when it comes to my brother's therapies. I've educated myself on ST & OMT/OPT (oral motor therapy aka oral placement therapy) and do a bunch of exercises with him every day.

When it comes to speech therapy or oral motor therapy the key is persistence. If you are not persistent, your work will take much longer to pay off. We've already seen our work paying off and it is so great!

The main area my brother needs work on is his jaw. Jaw stability is key to success in speech. The jaw is the fundamental support of all components of speech. Then comes the tongue and lips. Of course we are also working on his tongue and lips, but tongue retraction will come when there is proper jaw strength. If you work on the lips & tongue first, yet don't have proper jaw strength & stability, you are not going to get very far.

Bite Blocks are essential for building jaw strength. When I first tried the Bite Blocks with my brother, he would not bite down on them *at all*. This is due to a few reasons, but in particular, lack of jaw strength. So, we went to having him chew various foods on coffee straws, since that would help his jaw. It would also help him realize that he needed to bite and it would make him do the chewing motion. I would put a small piece of food on each end of the straw (either a fruit chew or cheeto). One end of the straw would go in my mouth on my molars and the other end in O's mouth. He would see me chewing the straw/piece of food and therefore he would want to do it to be able to do what I was doing. We had great success with this and he was able to work up to 12-15 repetitions a day.

We worked on the chewing exercises for a couple months. But, I continued to try the Bite Blocks every now and then and he'd bite for maybe a second or two and then immediately want to go into fixing (tensing up).

A couple weeks ago I tried one block and we finally had success! He can hold the bite block (#2 since it's the smallest one I have) for 6 seconds per side with me very lightly pulling it, just like described in the Jaw book from TalkTools! We've been doing 4 repetitions for 6 seconds per side every day. It's so great to see our hard work paying off!!


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,

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

Neurogenesis and Synaptogenesis

Neurogenesis in the hippocampus

Curcumin increases GSH levels

Improved memory & inhibits apoptosis


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

*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."


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 . . .


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


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 :).

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