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 :)!

Related Posts with Thumbnails