Well, so far so good! No stomach upset, no weird side effects. We started him on 1,000 mgs, 2 capsules a day, and I will say, he did seem a bit more talkative yesterday. He was more descriptive in his story telling, more enthusiastic with trying to get the details in. I'll keep you all posted!
Ok, between Facebook, Twitter @MyHealthiestLif, and My Healthiest Life, it's all I can do to keep up with Jaden's Journal anymore. Follow me on Facebook, if you can, that's where I'm updating the most! Hope everyone's doing well! I love hearing from you:)
I have great news. We are going to be starting Jaden on Curcumin as soon as it arrives in the mail, hopefully this Friday. We will be doing updates on everything we notice as far as improvements in speech and/or cognition. I wanted to post a first hand account from an extraordinary young lady who's younger brother, Oisiyyah has Down Syndrome. She has taken on the role of activist, author, researcher and teacher for not only her brother but many other parent's and is truly an inspiration in all that she does. She has also written a book called, Down Syndrome: What you CAN Do, available at LuLu.com She, along with many other parent's has been witnessing first hand the amazing changes taking place in her younger brother. Please read below to hear what she has to say.
Written By: Qadoshyah Fish
Longvida Curcumin – Our experience with Osiyyah
New research regarding Down syndrome is always going around the web. Sometimes the research is very in-depth and I may not have the time at that exact moment to research that particular subject, so it’ll go in my “Research to look at” folder. But, when I was approached with information about Longvida Curcumin back in April of this year (’09), I jumped into the research mode. The small bit of information I was presented with initially and asked to look at further looked so promising, I had to know more about Longvida Curcumin.
It only took about two days of research before I was completely convinced that Longvida Curcumin was something that showed a lot of promise for individuals with Down syndrome.
Over the years, I had researched Curcumin, the active ingredient in Turmeric and found it to have many benefits. But, there was a problem as to how it could be adequately absorbed into the body, especially the brain, where it is needed most.
For several years we gave my brother, Osiyyah, Turmeric in hopes that it would be beneficial to him. We never noticed any changes, so who knows if it was actually helping him or not.
Curcumin has many benefits: Preventing amyloid plaque build-up, breaking up amyloid plaques & tangles, reducing inflammation & oxidative stress, causing neurogenesis & synaptogenesis, increasing glutathione levels, anti-cancer and so much more.
We started giving Osiyyah Longvida Curcumin the first part of May. As usual, we started with a small dose and slowly increased the dosage over the course of a week. For the first week we were at 500mgs/day, then went to 1000mgs/day for 8 weeks. At the 8 week mark we increased to 1500mgs/day and after a week of that we went to 2000mgs/day. That is the dosage we have been on since July.
About 2 weeks into Osiyyah taking Longvida, we started noticing changes. To put this in perspective, we were *not* expecting to see any results or changes for several weeks (I had 8 weeks in my mind), since for some things, it may take awhile to see any results. But, the changes we started seeing were not just coincidence. They were HUGE changes. Changes I would’ve never expected. Changes that weren’t happening before Longvida.
What were those changes? Those changes all involved Osiyyah’s speech. Osiyyah is 4 ½ years old and his speech is *very* delayed for his age. Osiyyah started saying new words very frequently . . . every day he would have a new word or 5 new words! He copied everything we’d say and repeat the words we said.
Within a couple more weeks, Osiyyah started using two word sentences very regularly. And he also continued to say new words and KEEP saying those new words. It wasn’t just a one-time coincidence.
As the weeks went on, we continued to notice MASSIVE changes. Osiyyah’s speech was picking up so much and so quickly, it was amazing.
He started using several word sentences on a consistent basis and has not stopped. These changes weren’t a one-time thing, they are changes that have occurred and continue. One of my favorite sentences he says is “Whole Bunch” – the way he says it is just too cute!
As we are about 5 months into giving Longvida Curcumin now, we have continued to see progress. I’d call the changes we have seen over the past few weeks, “deeper progress.” Osiyyah asks questions all the time, like “Why?”, “Who?”, “What?” & his newest one as of today “Do?”. As in “Why are we doing this?”, “Who’s is this?”, “What do you want?” or “What are you doing?” or “What can I do?”.
It’s very neat and exciting to see Osiyyah being so much more interactive and understanding in everything :)!
For more details of the changes we’ve seen, they can be seen at our blog - http://gotdownsyndrome.blogspot.com/search/label/Longvida
Finally! Caught on tape, Jaden Break Dancing! It only took a year and a half to capture him break dancing live! Every time I have gone to turn on the camera to catch his moves, he has stopped! How frustrating, right? I'm sure you all know what that's like, trying to get your child in one of their cute performances!
One of Jaden's favorite past times is break dancing and when he hears a song with a good beat, watch out, he breaks out the Old School Moves! He does the worm and everything! Boom Boom Boom, by the Black Eyed Peas is Definitely his new favorite song. He asks for it to be played constantly! Hope you enjoy this!
CAUTION: Sorry, but the sound is pretty loud, turn down your volume! Get ready to laugh!
Curcumin, which comes from Tumeric. just may be the natural remedy researchers have long been waiting for! Currently it is being studied to help treat everything from AIDS and Alzheimer's to Cancer. So far, most studies look very promising and there have been very few negative side effects reported. UCLA is currently doing a long term study using Curcumin to treat Alzheimer's patients and so far the results have Scientists very optimistic. Here is a little background on Curcumin and why it is so beneficial. But before you run to your local Health Food store and ask for Curcumin, you need to understand that most commercially available curcumin is not Bio-Available, meaning it doesn't really absorb well or stay in the blood stream. It's taken researchers quite a bit of time to get the right formula down, so that it can actually be a bio-available treatment which crosses the Blood-Brain-Barrier (BBB) Because my son has Down Syndrome, we closely follow new research on any natural product that reduces inflammation and plaque build up, especially since Down Syndrome and Alzheimer's Disease share many similar characteristics. In fact, it is now shown that most people with Down Syndrome will inevitably develop Alzheimer's Disease.
The benefits of taking curcumin daily, the active component of the spice turmeric, may be many or none, depending on the supplement. Many of the curcumin benefits have to do with the prevention of chronic and life threatening diseases that are often related to
But, in order to provide this preventative benefit, it must be able to get to your bloodstream. Researchers have found that eating turmeric or taking a supplement by mouth does not significantly increase curcumin-levels in the blood. Digestive acids have a damaging effect that basically renders it useless for anything other than stomach complaints.
In order to get the long-term health benefits of taking curcumin daily, a supplement must include an enteric coating. The standard veggie-caps used by most supplement manufacturers don't work.
After scientists had done some of the research concerning the curcumin benefits as anti-cancer, anti-inflammatory and anti-oxidant agents, they looked at how well the compound is absorbed into the bloodstream. The measured blood serum levels after volunteers had taken very large amounts, up to 10 grams, and found that concentration was very low.
This is seen with other nutrients, as well. An enteric coating is necessary to allow the nutrients to make it through the stomach, undamaged. Once in the upper intestine, the nutrients can pass through the intestinal wall and enter the bloodstream.
The curcumin benefits that you will see listed on a standard supplement are based on laboratory studies using cell cultures and animal models. In order to provide the benefit, the nutrient must be able to interact directly with the cells. This will only happen if it is absorbed into the bloodstream. The same is true of resveratrol and other anti-cancer nutrients.
Assuming that the supplement is properly designed, the benefits of taking curcumin daily may include lower cholesterol, a healthier circulatory system and improved mental clarity. It may be beneficial for relieving stress, depression and anxiety, as it has been shown to increase concentrations of one of the brain's proteins. Called BDNF, low levels of this protein are associated with those conditions, as well as decreased mental clarity.
The Health Benefits of Curcumin
I recently had the privilege of speaking with Chris Hempel, mother to Cassidy and Addison, via Email. I am totally inspired by the work she is doing in helping to find treatments for her daughter's who have been diagnosed with the rare and so far fatal genetic condition called Niemann-Pick Type C. The article below was recently published in The Wall Street Journal and beautifully reported by Amy Docker Marcus. This an inspirational story for many reasons, and because this is a neurological condition with similarities to Alzheimers Disease, there may be treatments that work in Down Syndrome that could potentially work in treating Niemann-Pick Type C. To read more about Addi and Cassi Hempel after you read this article, go to their website HERE.
By AMY DOCKSER MARCUS
From the moment her twin daughters, Addison and Cassidy, were diagnosed with a fatal genetic disease in October 2007, Chris Hempel has been searching for a drug that might save their lives.
The 5-year-old girls were diagnosed with a devastating cholesterol metabolism disorder known as Niemann-Pick Type C, which is ultimately fatal. Soon after, Ms. Hempel learned that researchers found that a form of a compound called cyclodextrin extended the lives of affected mice.
Ms. Hempel set out to gather as much data as possible. She got a list of all major cyclodextrin distributors and connected with one in Florida, who shared scientific studies and other information with her. She found a short report in the medical literature about a doctor who had treated a child with a different disease using cyclodextrin and tracked him down. She became increasingly hopeful that, although cyclodextrin isn't approved as a drug in the U.S., she might get the Food and Drug Administration to allow her to give cyclodextrin infusions to her girls as an experimental treatment.
Her search for information also led her to James Hildreth, 52, a pre-eminent AIDS researcher who heads the Center for AIDS Health Disparities Research at Meharry Medical College in Nashville, Tenn. It turned out that he too was seeking FDA approval to run a trial using cyclodextrin, in a vaginal cream to help prevent HIV transmission during heterosexual sex. Ms. Hempel wanted him to combine forces with the NP-C investigators to push forward cyclodextrin research.
That was only the beginning of Ms. Hempel's long journey through the health-care research community -- a distributed and labyrinthine collection of researchers who, for all their expertise, often remain unaware of advances made elsewhere. The problem is even more acute among researchers working on different diseases. But for some serendipity, curiosity -- or, in this case, a willful Ms. Hempel -- some knowledge in one lab may never make its way to another that could be on the verge of a new therapy.
Drugs approved for one disease often turn out to be effective in others -- frequently when someone has a hunch. Thalidomide, originally used for morning sickness but taken off the market because it caused birth defects, is being used in cancer treatment.
Researchers at Pfizer were developing Viagra to treat high blood pressure when they noticed during early tests that it treated impotence. But that happened within the same company. It is even more difficult when researchers are at different labs.
When Ms. Hempel, who lives in Reno, Nev., became passionate about Dr. Hildreth's work, she was determined to bridge the disparate knowledge. "Right now we have limited data on cyclodextrin. But what if a lot of people started looking at it from different angles and across different diseases?" Ms. Hempel said. "It could lead to something that helps save Addi and Cassi's lives."
Ms. Hempel had been researching cyclodextrin for months when she attended the June 2008 meeting in Tucson, Ariz., of the Ara Parseghian Medical Research Foundation, set up by the family of the legendary football coach who lost three grandchildren to NP-C disease. The foundation was providing some funding for cyclodextrin studies in the rare disease, and the latest data were presented there. In an email sent after the meeting, Ms. Hempel wrote to the NP-C researchers that, based on the data she heard, she and her husband, Hugh, planned to seek FDA approval to give the girls cyclodextrin infusions. "I feel very strongly that we must try this to help save Addi and Cassi from this horrible disease," she wrote.
She had already put together a three-inch binder of research studies about cyclodextrin. Working with three other families whose children have NP-C disease, they hired a scientist who began writing a request to the FDA for the Hempel children to receive cyclodextrin infusions. But Ms. Hempel knew that she needed more human data if she was going to persuade the FDA that the drug was safe enough to use in her children.
While searching for safety data on cyclodextrin, she spoke with Charles E. Strattan, a cyclodextrin expert and CEO of CTD Holdings Inc., who was helping Ms. Hempel do research. He told her Dr. Hildreth was interested in the same compound for his work in HIV and suggested that the two of them talk.
During a long phone conversation in October 2008, Dr. Hildreth told Ms. Hempel that he believed the protein responsible for NP-C disease also plays an important role in HIV. And in previously published work, he showed that cyclodextrin appeared to inactivate the HIV virus and prevent it from replicating.
The talk galvanized Ms. Hempel. Dr. Hildreth offered to share what he knew about cyclodextrin's safety with the FDA in support of the Hempels' request. Ms. Hempel proposed that the two of them go to Johnson & Johnson, which had studied cyclodextrin, to see if the company would be interested in sponsoring a clinical trial. "I knew our stories would be even more powerful if we told them together," she said.
As is typical in the field, Dr. Hildreth was reluctant to share unpublished data, and he rarely went to scientific meetings that weren't related to HIV. He was moved by Ms. Hempel's efforts to help her children, but also surprised by her embrace of his work. "Some of the things we as scientists take for granted about how work will be done and the fact there are silos, with her there is none of that at all," he said.
When Ms. Hempel called a top National Institutes of Health AIDS researcher to tell him about Dr. Hildreth's findings and propose joint work in HIV and NP-C disease, Dr. Hildreth told her that a scientist never would have made such a call. In recent months, Ms. Hempel has introduced Dr. Hildreth to NP-C researchers who were also studying cyclodextrin. She also arranged for him to discuss his HIV findings with two Nobel Prize-winning scientists interested in Niemann-Pick proteins. "Our paths would not have crossed otherwise," he said.
He and Ms. Hempel recently had a conversation with senior officials at Johnson & Johnson. The FDA at first turned down the Hempels' request to do cyclodextrin infusions in the girls, concerned there wasn't enough human safety data. But after Ms. Hempel contacted them about her plight, the company wrote a letter to the FDA giving the agency permission to look at all of the safety data it had submitted related to cyclodextrin. The FDA subsequently gave permission for the Hempels to proceed. The girls will start cyclodextrin infusions this month.
That might have been the end of the story except for Ms. Hempel's insistence that more was at stake, says Steven A. Silber, a vice president at Johnson & Johnson. After listening to Ms. Hempel and Dr. Hildreth's presentation, Dr. Silber set up a meeting so Dr. Hildreth can present his data to the head of one of its companies that makes anti-viral medications. Dr. Hildreth says that Ms. Hempel's involvement got his research "the attention of individuals higher up in the organization than I might have been able to get on my own."
This May, the Parseghian Foundation will host its annual scientific meeting. The group plans to hold a special session dedicated to the work on cyclodextrin. Cindy Parseghian, president of the foundation, says she hopes researchers working with cyclodextrin in other diseases will also attend. "We think there should be more cross-fertilization," she said. Dr. Hildreth says he plans to share his findings at the meeting.
Dr. Hildreth recognizes that his unusual partnership with Ms. Hempel also has some risks for the HIV trial he is planning. "It is a remote possibility, but is a possibility, that if her beautiful girls are done some harm by the infusions, that would clearly do harm to our efforts," he said. Still, he adds, "I spent a lot of time thinking about what I would do if I were in her position. My answer is I would do exactly the same thing."
Late last month, the Hempel girls underwent surgery at a California hospital to get a small medical device implanted under their skin to make it easier to receive regular cyclodextrin infusions. Dr. Hildreth visited them in the hospital.
Write to Amy Dockser Marcus at email@example.com
Well, he's been in school and busy with his life! It's been a while...I seem to say that every time I post something new. Must be guilt. Progress is definitely being made. Jaden knows the ENTIRE alphabet and is beginning to sight read. We just bought the program Your Baby Can Read, and I'll keep you posted on how it works. Jaden is now 4 and 4 months. He has known the sign language alphabet for a VERY long time now. He has known the written alphabet for a good 5 months, but started showing us he recognized letters over 1 year ago. So now we've moved onto words. I know that there are children with Down Syndrome who can read much earlier than this as well and I would love to hear from these parents. It's always good to hear the success other parents have and to find out what programs they have used. It's been hard to get Jaden on Video doing his letters because he's become a little rebellious when asked to do things now, go figure. This is the best I could get for now and I promise to upload a more entertaining video next!
From my favorite site, Natural News, Mike Adams does it again with another interesting article about what happens to children when they take ADHD Drugs. If you haven't been to the Natural News website and/or don't subscribe to the Natural News Newsletter, I highly suggest doing so. It is truly one of the most informative, educational sites on the Web today. Click on the link below to read the full article.
ADHD Drugs Cause Hallucinations in Children; Psychiatry Pushes Hallucinogenic Drugs for Profit