Just The Way You Are

This video was posted on non-other than a rabbit breeder message board. I hadn't seen it before and I thought it was very sweet and cute. The response by at least one person on this board was "I feel sorry for . . .", so I had to watch the video to see what it was about. And then of course give that person a lesson . . . there's no reason to feel sorry for someone with Down syndrome.

A 7 year old boy sang this song about and for his little sister who has Down syndrome.




Enjoy!

Raising Glutathione Levels

Glutathione is a very important amino acid. And even more important for individuals with DS. As I say in an article on our website,

Glutathione is commonly deficient in individuals with Down Syndrome, due to the extra chromosome & overexpression of the SOD-1 gene. Glutathione is an important antioxidant. It helps scavenge free radicals, deal with oxidative stress & the pro-oxidant state of individuals with Down Syndrome.

Glutathione is very difficult to absorb. We have given Reduced L-Glutathione to Osiyyah over the years, in hopes that it will be absorbed at least some to help him. And I think it has helped him, especially when he was younger and struggled with minor lung issues.

I was talking with someone on the phone the other day about Glutathione in Down syndrome. And I remember about a study I read which Dr. Jill James did that showed Methylcobalamin B12 helped increase Glutathione levels in children with Autism.

Methylcobalamin B12 is already used in DS to help with the low folic acid issues caused by the overexpression of the CBS gene and the messed up SAM cycle. We give Osiyyah MethylB12. So, by giving MeB12, we are covering a couple bases at once - folic acid problem and helping increase Glutathione levels (hopefully ;)).

Here is the abstract of the study which Jill James did. The bolded parts are the key parts.

Efficacy of methylcobalamin and folinic acid treatment on glutathione redox status in children with autism

Background: Metabolic abnormalities and targeted treatment trials have been reported for several neurobehavioral disorders but are relatively understudied in autism.
Objective: The objective of this study was to determine whether or not treatment with the metabolic precursors, methylcobalamin and folinic acid, would improve plasma concentrations of transmethylation/transsulfuration metabolites and glutathione redox status in autistic children.
Design: In an open-label trial, 40 autistic children were treated with 75 µg/kg methylcobalamin (2 times/wk) and 400 µg folinic acid (2 times/d) for 3 mo. Metabolites in the transmethylation/transsulfuration pathway were measured before and after treatment and compared with values measured in age-matched control children.
Results: The results indicated that pretreatment metabolite concentrations in autistic children were significantly different from values in the control children. The 3-mo intervention resulted in significant increases in cysteine, cysteinylglycine, and glutathione concentrations (P < 0.001). The oxidized disulfide form of glutathione was decreased and the glutathione redox ratio increased after treatment (P < 0.008). Although mean metabolite concentrations were improved significantly after intervention, they remained below those in unaffected control children.
Conclusion: The significant improvements observed in transmethylation metabolites and glutathione redox status after treatment suggest that targeted nutritional intervention with methylcobalamin and folinic acid may be of clinical benefit in some children who have autism.

Expect. Don't Accept

This article was posted on some of the DS lists I'm on and I thought it was a great article.

So many parents of children with Down syndrome deal with the same things this family did. I know we did. We had to deal with the "your child won't do . . ." a whole long list of things. And you know what, Osiyyah has proven all those "professionals" wrong. Why? Because we expect Osiyyah to be a part of our family. To do things a normal little boy would do. To help, to work, to achieve and to progress. And, by God's kindness, our hard work and Osiyyah's out-going, do-it-himself personality has made him progress greatly.

Expect. Don't Accept. 

2009 Keynote Address by Paul Daugherty

(Paul Daugherty delivered this keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center.)

Thank you very very much for inviting me to speak to such a "remarkable" group of people. Life has given you a gift. If you don't realize that already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have blazed more trails than Daniel Boone. We have sat in countless meetings with teachers and administrators. We have spent countless nights and hours agonizing over homework assignments that were not modified for Jillian or overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you don't, we will be there, hauling you into a meeting, demanding for Jillian what you so freely offer every other kid: An honest chance. Let her tell you the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies, when we expand our thinking to account for the impossible. We went to the moon, didn't we? We eradicated polio, we can take pictures with a telephone. We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud.  Don't let them tell you what your kid can do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and improving.

On the harshest emotional night, Jillian Phillips Daugherty couldn't wait to get out. The occasion of her birth was melancholy to everyone but her. Jillian loved being born. Her older brother Kelly had taken his sweet time. He slept late in the womb. Fourteen hours of labor before he emerged, wary and wailing. Jillian couldn't wait to see everybody. It took less than an hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days she can sleep late, or hears me coming into the house and screams like it's 1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour, the next chance to be Jillian. Jillian wasn't born 19 years ago. She was unleashed.

When she was a couple months old, she developed mucous in her chest and lungs so thick, she could barely breathe. Jillian was in the hospital 11 days and nearly to the point she needed a respirator. Then one more in a silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years ago, when I yelled at her for some transgression or another. Unfortunately, having Down Syndrome doesn't mean you won't spill apple juice or try to ride the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up and says, "Do you want a piece of me?"

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't have the coordination. Even if she did, she wouldn't have the stamina. These Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for a summer. Then the training wheels came off. For awhile, Jillian's wheels came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. We spent three months learning to ride the two-wheeler. It was like cracking a code or something. Every day, I'd drag poor Jillian out to the driveway we share with three other houses. I'd help her up, get her started and hold the back of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam. The kid never quit. The amazing thing was, she wasn't doing it so much for her as for me. She knew how much I wanted her to ride that two-wheeler. She saw how happy it made me when she managed a few more feet than the day before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going, to the end of the driveway, dread mixed with elation. "Dad, I'm doing it. Oh my gosh." She was off and riding. I was in the clouds. The last time Jillian and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the rear. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a Bruce Springsteen song called Walk Like A Man. One of the lines was, "I was young and I didn't know what to do, when I saw your best steps stolen away from you; I'll do what I can. I'll walk like a man."

I was wrong about that. From the instant she appeared, Jillian has never lost a step. She doesn't get cheated, to use a baseball term. Jillian gets her hacks. We quickly got over the immediate emotions surrounding her birth. Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my heart. I can't help that. But I don't expect anything less from her. And I accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

It's hard. It's very hard. But we wouldn't be here today if we didn't believe, with everything we've got, that it's worth it. Expect, don't accept. Carry on and thank you again for the privilege of speaking to you today.

Recipe 7: Homemade Salsa & Chips

Since it's gardening time, we've been making a decent amount of homemade salsa. With everything straight from the garden. Yummy! Our tomato yield hasn't been as good as last year, but at least we have some.

Homemade Salsa
Click here for a printer-friendly version of the recipe.

Ingredients:
We never follow any specific amount of vegetables, as we're either making a HUGE batch or we're making a medium sized batch (probably the size most "normal" families would make ;)).

Tomatoes
Garlic (lots of it - we always use 6-10 cloves per batch!)
Jalapenos
Onions
*either a bit of a red onion, one small white onion or several green onions (green onions always make the best)
Green Bell Pepper (optional, but it does add some really nice flavor)
Cilantro (optional, but makes the salsa WAY better)
Garlic Powder
Garlic Salt
Pepper
Lemon or Lime juice (optional. We have to leave it out because one of my brother's is sensitive to lemon & lime)

Directions:

Chop the vegetables up using a food processor. Mix all together. Add seasonings & lemon or lime juice to taste.

That's it - very easy :)!


Since we seem to go through chips like they are going out of style, we frequently have to make our own chips from corn tortillas. Which really isn't too hard and they taste a lot better.

Homemade Tortilla Chips

Take a stack of corn tortillas. Cut the tortillas up into 6-8 triangular pieces.

Pour some oil in a frying pan and warm it up (best if the flame is started on high).

Toss several cut-up tortillas in the hot oil. Flip them over when they start to look light brown. It takes just a few seconds if the oil is hot enough. After another few seconds, take the chips out of the oil. You should have a nice golden-medium dark brown chip!

Salt to preference when you're all done.

Enjoy with your salsa!

Cure for Down Syndrome?

Christy S. posted an article she wrote on the Changing Minds Foundation protocol to a few DS listservs.

I thought I'd share her article here.

While I don't agree with all of it (just in using the full CMF protocol), I think the general idea is great. And definitely has potential, as I've said before.

People do need to realize that medical research has come a LONG way since Down syndrome was first "discovered." And we should take advantage of the knowledge we do know, if there is a good way to counteract some of these issues. And there are many safe ways to do this with supplements, interventions and therapies and there are many more "in the works."

Personally, I don't like using the term "cure", even though "remedy" is one of the definitions of "cure." Most people associate "cure" with getting rid of Down syndrome. That ain't gonna happen, no matter how many therapies, drugs, supplements, or interventions that you do. You are not going to take away that 3rd chromosome. I know Christy, who wrote the article, realizes this. But, many people, from what I have seen, do not.

When "cure" is mentioned on many online DS forums, it turns into a huge debate, because people say, "I don't want to change my child." I agree, I don't want to change Osiyyah either, in terms of taking away the 3rd chromosome. But, do I want to HELP him? Lessen the bad effects of the extra chromosome? Of course we do! That is completely why we give him Nutrivene-D, Ginkgo Biloba, Longvida Curcumin, DHA, etc. To help minimize and reduce the damage some of those pesky over-expressed genes & proteins cause.

Will giving Nutrivene-D, Ginkgo Biloba, Longvida Curcumin, etc, change Osiyyah for who he is? Absolutely not. It will only help him to be able to function better, achieve more and be a healthy, stronger little boy.

I'll step off my soapbox now :)!

Stanford DS Research Blog

Stanford Down Syndrome Research Center have started a new blog called,

Innovations in Neurodevelopmental Disorders

Stanford always has very interested research, so it should be an interesting blog to watch.

To Those Using Longvida Curcumin

It’s been a few months since I compiled data on those who are using Longvida Curcumin, so I’d like to do it again. It's be great to even hear from those who responded to this a few months ago.

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 few 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.

Why I Blog . . .

Alysha from Blessed With More Than Deserved left a comment on one of the blog posts here. I thought I'd share it and expound on it more.

I just had to stop by and leave you a REALLY BIG Thanks :D Your blog & all the time you've invested in helping other families has been such a huge blessing & educating tool in my life. Thank you for all your time & for the willingness to share all your findings. Your blog award is 100% earned (I think you should have been #1, but 2 ain't bad :) Keep up the great job Q...we moms need you & God for sure knew what He was doing by placing O so perfectly where he belongs in your family. God bless, Alysha

Alysha has two little boys with Down syndrome. One biological, Eli and one adopted from the Ukraine, Issac. Shortly after bringing Issac home last year, Alysha emailed me asking for more information about Longvida Curcumin and waiting for me to post an update on this blog about it. This was a bit over a year ago and I wasn't keeping the blog very updated. So, her email spurred me on to regularly blog, because I realized I actually had people reading the blog looking for information. And, so I've been a pretty regular blogger for over the last year and I'm so glad I've been able to help families.

Everything from one of my biggest passions in the Down syndrome world - research on nutrition to help people with DS - to another one of my favorite subjects - speech & oral motor therapy - and anything random in between. It's been great to be able to blog regularly and have people benefit from it.

That's why we wrote our book. To help other families who have children with Down syndrome. I know we would've benefited greatly from a blog like this or a book like ours (in fact we found a book similar - Circle of Friends II, but it was out of print) when Osiyyah was first born. But, he was 8+ months old before we found the Circle of Friends II book or anything along these lines. I get emails fairly regularly from new families thanking me for the book and saying it's been such a huge help.

When my brother was born, I purposed to do everything I could for him. Out of love for my wonderful little brother, and knowing how the knowledge and information I've learned over the last 5+ years has helped HIM tremendously, I share, because I know it will (and has) helped others.

Another Couple with Down Syndrome to Marry!

There have been several couples with Down syndrome over the years who have married. I've mentioned a few of them on this blog in the past. Josh & Bernadette, Sujeet & Carrie, etc.

Well, I  received an email today about another couple with DS who will be getting married in September ~ Tyler & Heather in Joplin, MO.

You can see their website at: http://tylerandheatherwedding.com/

Enjoy!

In The News!

Since Osiyyah's picture will be featured in the slideshow played at the NDSS Buddy Walk in September in Times Square, our local newspaper, the Tahlequah Daily Press, ran a short article on it.

Moodys child to be Broadway ambassador

(photograph is here in the newspaper article. Under it, it reads "Osiyyah Fish, pictured with a newborn lamb on the farm, will be a part of the National Down Syndrome Society's video that will play in Times Square in New York City)

*He'll show how Down Syndrome children can have big roles in society.

Osiyyah Fish of Moodys will appear in lights on Broadway on Saturday, Sept. 25, as part of the National Down Syndrome Society's video production to demonstrate that people with DOwn syndrome can be successfully included in community activities, education and employment.

The photo of Osiyyah, who has Down syndrome, was selected from over 1,000 entries in the NDSS worldwide call for photos. Approximately 225 photographs will appear in a video production to be shown on the larger-than-life MTV plasma screen, in the heart of Times Square. The video presentation, produced by NDSS, illustrates children, teens and adults with Down syndrome working, playing and learning with friends and family.

The Times Square video production kicks off National Down Syndrome Awareness Month, which inclues the 2010 Buddy Walk. This year, walks will be held in more than 275 cities across the country, as well as many international walks. For information about National Down Syndrome Awareness Month or the NDSS Buddy Walk, visit www.ndss.org or call (800) 221-4602.

The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing the 400,000 Americans who have Down syndrome. The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

Top Down Syndrome Blog 2010

I received an email today from Medical Assistant Schools notifying me that this blog made it into the 2010 Top Down Syndrome blogs. We're listed as #2 in the list of 30 blogs :). How exciting!

You can see the badge for the Top DS blog for 2010 on the sidebar of the blog.

Connecting the Rainbow Heading to Ukraine

I've posted about Connecting the Rainbow a few times before. CTR is an off-shoot of Reece's Rainbow that is designed to educate families and professionals in Eastern European countries. Education is so important in EE countries, because families are not told the truth about raising a child with Down syndrome. They are told to put them into an institution or an orphanage. There are only a few families in these countries that actually keep their children with Down syndrome.

Actually, there was one family a few months ago, who, by the encouragement of RR, brought their child home out of the orphanage to live with them.

As I've posted about before, CTR has made a couple trips to Bulgaria to deliver resources and therapy items to families there. They will be going back to Bulgaria in March 2011 for World Down Syndrome Day for a 2-day conference.

Our book has made it to Bulgaria with CTR and to the families there. It also recently went with a family who was adopting from an orphanage in Ukraine to give to the director of the orphanage . . . he actually requested books on Down syndrome.

CTR has been working on ways to give more information, resources and therapy items to families in the Ukraine and Serbia. And just to educate the public there. Well, they have been given an amazing opportunity to attend the DownsEd International Down syndrome conference in Kiev, Ukraine!

Here's a bit of info that Shelley recently posted about the upcoming trip to Kiev:

In the midst of the beginning preparations for the CTR trip to Bulgaria next March, we were given an exciting opportunity to make face-to-face contact and really "open" our program in Ukraine!

Though the timing was a big unexpected (and fast!), the opportunity was too great to pass up.  I, along with Reece's Rainbow's Ukraine coordinator, Meredith Cornish, will be attending the Down Syndrome conference in Kiev, Ukraine!!! We will have the opportunity to meet with birth families in Kiev, speak with leaders of the Down syndrome group to assess how we can best support the families and visit the new Down Syndrome Early Development Center. We are extremely blessed to have this opportunity for face-to-face meetings with the parents that are right now "in the trenches" in Ukraine, working to change the minds and hearts of their society about the value and potential of people with Down syndrome. Just like in Bulgaria, we know that meeting these families "where they are" is THE most effective way to truly understand their needs and to plan for the most effective way to partner with them and support them and their children.

In addition to the exciting things happening in Kiev, we've been given a 2nd opportunity to impact another area of Ukraine. Connecting The Rainbow will be partnering with another organization to assist in supporting a special needs center in the Donetsk region of Ukraine. The center is in the city of Artemovsk and will serve ALL children with special needs and their families in the community and surrounding areas. It will be a place for families to come for support, information, resources, etc. It will be a place for the children to receive therapy, to play with developmentally appropriate toys and to interact with other children. We are very excited about the opportunity to assist with this project as it will serve so many children with a variety of special needs. There are already over 190 families signed up to receive support from this facility!

So, there are a lot of exciting things happening in Ukraine! Connecting The Rainbow has been given incredible opportunities to partner with families in Ukraine and to assist them in providing for the needs of their children. We're currently in the process of compiling a list of items that will be needed for the special needs center in Artemovsk and also items that the families in Kiev want/need as well. We're looking forward to the opportunity to be able to visit both facilities, gather a lot of information and take lots of pictures to share with all of you!

Reece's Rainbow at Buddy Walks

October is just around the corner and that is Down Syndrome Awareness Month. Many Down Syndrome Associations (DSA) have buddy walks now, in October and shortly after October.

Reece's Rainbow is doing something new this year. They are giving "kits" to set up a table about RR or just brochures to DSA's around the country.

You can see if your local buddy walk/DSA is doing it yet or not at the RR website.

A New Study Using a DS Mouse Model

A new study was recently published in the Journal of Neuroscience. This studied Ts65Dn mice who were treated with Prozac. Ts65Dn mice are mouse models of Down syndrome. I won't bore you with the whole study, but here is a quote from the abstract conclusion, "Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS." If you would like to read the study you can do so here.

A commentary was also written by someone and I thought it was interesting as well. It doesn't give so many big words, like the study does, so I figured this one would be an interesting read for ya'll.

Can Down Syndrome Be Treated?
(from: http://tinyurl.com/26j4uwt)
By Jim Schnabel
July 22, 2010

Down syndrome (DS) causes such a complex set of abnormalities in the developing nervous system that the resulting mental disabilities of people with DS have been considered untreatable. But researchers have created strains of mice that mimic DS’s genetic abnormalities, and have begun to show that existing drugs can successfully treat specific kinds of cognitive deficit in these mice. A study published on June 30 in the Journal of Neuroscience, for example, indicates that Prozac (fluoxetine), delivered to these mice shortly after birth, reverses a key brain abnormality and enables the mice to perform a standard memory test as well as normal mice.

“Based on all our data we think that fluoxetine is a good candidate for clinical trials,” says Renata Bartesaghi of the University of Bologna, senior author of the study.

“I think the field is wide open now and really ripe for major discoveries,” says Alberto Costa of the University of Colorado–Denver Medical School, whose lab has shown similar results for the cognitive-boosting drug memantine, and is now conducting a clinical trial of the drug in young people with DS.

Restoring neurogenesis

In humans, DS typically begins with a mistake in the formation of an egg cell that leaves it—and any embryo resulting from the fertilization of that egg—with an extra copy of chromosome 21. A segment of the mouse chromosome 16 is very similar to human chromosome 21, so mice engineered to have an extra copy of this segment—known as Ts65Dn mice—are considered a potentially useful model of the human disease, despite the obviously incomplete similarity between mice and humans.

In Ts65Dn mice as well as in humans with DS, researchers previously have noted a relative lack of neurogenesis, or production of new neurons, which is crucial for normal brain development. Some antidepressant drugs such as fluoxetine are known to promote neurogenesis, so Bartesaghi and her colleagues dosed their Ts65Dn mice with fluoexetine from day 3 to day 15 after birth, and then compared them to a group of untreated Ts65Dn mice.

The treated mice seemed vastly improved. They showed normal or even higher-than-normal levels of neurogenesis at day 15 and day 45, whereas untreated Ts65Dn mice showed much lower than normal levels. The treated Ts65Dn mice also regained a normal number of cells in a part of a crucial memory region, the hippocampus, where neurogenesis is particularly intense and persists into adulthood in humans. In a test of the memory of a specific place—a memory strongly dependent on the hippocampus—the treated Ts65Dn mice also performed as well as genetically normal mice. By contrast, the untreated Ts65Dn mice scored poorly on all measures.

The study appears to confirm and extend a study published in 2006 by a group of researchers including Costa, who found similar improvements in neurogenesis for fluoxetine-treated Ts65Dn mice—but adult mice, not newborns. “It’s always nice to see some of your own findings being replicated,” says Costa. “And on top of that they did experiments we hadn’t done.”

Costa abandoned fluoxetine as a candidate because despite their recovery of neurogenesis, his treated Ts65Dn mice failed to show improvement on a key memory test then commonly used – a variant of what is known as the Morris water maze. The behavioral improvements in newborn Ts65Dn mice reported by Bartesaghi’s group make him more optimistic about the drug, however. “I find their results interesting and impressive,” he says. “I definitely would include fluoxetine as a candidate for clinical trials in the future.”

The Bartesaghi group emphasizes treatment at the start of life, not in adulthood, in order to correct abnormalities in brain development at the earliest possible stage. But early treatment poses a special challenge in humans:  Neurogenesis in most parts of the brain, including the cortex, which mediates higher, distinctively “human” functions, is largely completed during the fetal stage of life.

Bartesaghi says that her group therefore has begun treatment on Ts65Dn mice when they are still in the womb, to see if the growth of the cortex, which is much reduced in people with DS, can be somewhat restored. “From our preliminary data it appears that prenatal treatment is extremely effective and does not have aversive effects on the pups,” she says.

High hopes and caveats

In 2008, Costa’s group reported that memantine, a drug currently approved for treating symptoms of Alzheimer’s disease, restored the performance of grown Ts65Dn mice on a memory test similar to the one used by Bartesaghi’s group. Memantine has the effect of moderately reducing the activity of NMDA receptors on brain cells – activity that appears to be abnormally high in Ts65Dn mice. But Costa doesn’t yet know precisely how memantine’s effects on NMDA receptors translates into cognitive improvements in the mice. Memantine does appear to be a relatively safe drug, however, and Costa recently was able to begin enrolling 40 adolescents and young adults with DS in an initial 16-week clinical trial, which he expects to conclude late this year or early in 2011. More than 400,000 people in the United States have DS, according to the National Down Syndrome Society.

Even though his DS subjects are nearly full-grown, Costa hopes that the study will show some hints of cognitive improvement. But he doesn’t expect a miracle. “Nothing’s going to happen in the four months of our trial that will change daily living skills for those individuals,” he says. “Those take a long time even in a normally developing person.” Much larger and longer trials would be necessary to prove memantine’s efficacy in any case, Costa adds.

Frances Wiseman, a DS researcher at University College, London, also cautions that, so far, these mouse tests have been done with relatively narrow measures of cognitive performance. In the case of fluoxetine, she says, “it would be sensible to repeat the treatment with a wider range of behavioral tests, and perhaps in another mouse model of Down syndrome, before embarking on a clinical trial.”

Both she and Costa note that although fluoxetine is now routinely prescribed for children as an antidepressant, an apparently above-normal incidence of suicidal ideation in young users has made its use in this age group somewhat controversial. Wiseman points out too that in at least one case reported in the early 1990s, fluoxetine was associated with seizures in a patient with DS.

Lithium, another mood-stabilizing drug that has the effect of promoting neurogenesis, is also being tested in adults with DS in a clinical trial at King’s College, London. Bartesaghi and her colleagues reported earlier this year on a successful test of lithium in Ts65Dn mice. But Bartesaghi doesn’t think lithium is a good candidate for use in children or infants with DS, because it is considered too toxic in that age group; in her lab, newborn Ts65Dn mice given the drug had a high mortality rate.

“One has to be aware of all the caveats,” says Costa. “But on the whole I’m now very optimistic about the prospects for treating Down syndrome, otherwise I wouldn’t have started a clinical trial. The field has long been neglected, but it’s now definitely getting interesting.”

Back At The Ranch

I know I kept the blog posts coming up and then there hasn't been anything since Monday! I was out of town from the end of July until early Tuesday morning, but I had put up a bunch of scheduled posts to keep the blog going. Since I've been home, it's taken a few days to get caught up on things on the computer, unpacking, things around the ranch, plus every day life.

Some of my family & friends traveled out to California. It was a long trip, but very good. Driving 25 hours straight from California to Oklahoma is probably the toughest part of the trip :). Thankfully multiple drivers helps a lot . . . and having a cab-over camper!

A storm in New Mexico (or Arizona, can't remember) on the way out . . .

Coming back through New Mexico on the way home . . .

Well, that's where I've been lately. I'm glad to be home and I'll continue to keep you all updated with interesting posts, Lord willing.

Things I Wish We Would've Known Sooner

As with almost anything when you look back in life, there are things you wish you could go back and redo. Just like the saying "Hindsight's always 20/20." There are things that we wish we would've known about sooner or done when Osiyyah was much younger.

That is why we put the book together that we did. Because we found a resource similar to it when Osiyyah was around a year old and that book was a lifesaver! We had never read so much encouraging, knowledgeable and helpful research before!

So, some of those things we wish we would've known about sooner are .  .  .

1 ~ Targeted Nutritional Intervention
2 ~ Oral Motor Therapy
3 ~ Early Reading

1~ Targeted Nutritional Intervention made such a drastic change in Osiyyah. It was like night and day. This little tiny, skinny boy transformed before our eyes into a healthy, chunky little baby. I've written about it in full already on the blog and you can read it here.

But, why do I wish we would've known about it sooner? Osiyyah was 8 months old before we heard anything about Nutrivene-D. How nuts is that?! While some may think, 8 months isn't that long, for Osiyyah it was. He needed the help of Nutrivene and he totally would've benefited from it when he was born. But, because of the contrariness towards Nutrivene that is very common in many online forums, it was *never* suggested to us as something that may benefit his major problems that he had when he was little.

Seeing how Osiyyah responded to Nutrivene-D when we started him on it, I know it would have benefited him greatly if he could've been given it at 2 weeks old (or sooner!). We could've saved countless hours in the doctor's office (and a doctor's office that knew absolutely nothing about DS) and Osiyyah would've been doing much better off. Of course though, God is the one who led us to find Nutrivene-D when we did, so it was all in His good will.

One of the first things that I would recommend for a new family would be Nutrivene-D. It. is. so. important.

2 ~ Seeing that speech (especially lack of oral muscles) is Osiyyah's biggest struggle, I am convinced that he would've been greatly helped had we started SRJ's oral motor therapy when he was a baby.

But, again, we did not find out about it until he was around a year old. And even then, at that time, everything seemed overwhelming. All the research I was doing about nutrition and genes still hadn't fully cleared and become easy to understand, so put on top of that OMT  . . . what exactly did we need to do?

We did the straws, and some NUK brush work. But, that was about it. We tried the horns, but he couldn't do them because he didn't know how to blow.

Had we known that jaw strength was so fundamental to being able to talk well, we could've started OMT for his jaw way sooner. We didn't start working hard on his jaw until about a year ago. And the difference that has made for him has been incredible!

Oral motor therapy is one of the first things I would recommend to new families also!

3 ~ Osiyyah knows a few sight words, but not that many. There are many families who do early reading (flash card work) with their kids from the time they are a few months and their children are reading VERY early.

We did not do too much of this, since we didn't know much about it. We did (and do) a bit of Doman's program with the big flash cards, but since Osiyyah is older, we'll have to work more on reading. Speech has been our biggest focus in the last year for Osiyyah anyways. But, I think Osiyyah could pick up reading very easily, knowing him.

Doing a flash card program every day is another thing I would recommend to new families.

PROMPT Commands

The PROMPT commands I am sharing here are the ones we use and have learned from Osiyyah's ST. There may be a slight variance in how each PROMPT is done from therapist to therapist. There's no saying whether this is the exact way every therapist trained in PROMPT does each command.

I just wanted to make sure that was clear for all, in case anybody might get confused if they here another way to do a command. And, if you do hear another way, I'd be glad to know!

I hope you all enjoy the PROMPT commands - I know I would've really enjoyed being able to go to a site to learn some of these. I will continue to post any new commands as soon as I learn them :).

A Way to Encourage the "S" sound

Osiyyah's speech therapist is very hands-on and uses a lot of "cues" to help a kid say certain sounds. This has been VERY helpful for Osiyyah, because he is so visually oriented when it comes to learning new things.

This is one cue she has used to help Osiyyah get the "S" sound at the end of or in certain words. It has worked quite well for Osiyyah.

Take the child's arm, put your finger at the child's elbow and "draw" an "S"/snake shape along the child's arm and "land" in the palm of the child's hand. When you start say "sssss" and say that the whole way until you "land" at the end. Then have the child say the sound while you are "drawing" the "S" or snake on the child's arm.

PROMPT: The "P" Command

This PROMPT command is for the "P" sound. This is a PROMPT we have used quite a few times with Osiyyah to help facilitate that light "Puh" sound.

To do this command: Place your two fingers around the child's lips, as seen in the first picture. This command starts out very similar to the "B" command. Then gently "pop" the child's lips with your fingers and bring your hand away from the child's mouth, as seen in the second picture. Say the "P" sound  while you are doing this command. Have the child say the sound at the same time as well. Support may be necessary for the child's head to keep the child in a proper position.

PROMPT: The "L" Command

This PROMPT command is for the "L" sound.We've only used this a little bit with Osiyyah, as Osiyyah can say that sound quite well. But, he does have a hard time getting that sound into words and sentences (that's motor planning problems for ya!)

To do this command: Place your middle at the back of the jaw under the mouth/throat area, as seen in the first picture. Then move your finger up towards the front of the jaw. Say the "L" sound while you are doing this command. Have the child say the sound at the same time as well. Support may be necessary for the child's head to keep the child in a proper position.

Changing Minds Foundation Holds Conference

We don't totally agree with everything the CMF Protocol uses. Just because we tend to be a bit leery of using drugs at times, especially a drug like Prozac, at this time. But, I think their general concept and idea is VERY good. Which is why we use Ginkgo Biloba. But, we do not use the rest of the protocol.

Changing Minds Foundation holds conference about treatment for Down syndrome

By Patricia Almeida exclusive for Inclusive

The Changing Minds Foundation (CMF) held  its first Conference on July 23-24, in Houston, TX,  to discuss available treatments for the different symptoms that affect persons with Down syndrome and to present the research that is currently being carried out in this area.

Various testimonies of families and professionals,  who work with those using the Changing Minds protocol, were presented, as well as  findings from researchers at Stanford University that investigate drugs to enhance memory and cognition in individuals with Down syndrome by testing them on DS mouse models.

The Changing Minds treatment protocol was established in 2006 by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they all researched the internet to find an array of scientific studies. The studies using DS mouse models showed improvment in the mice’s ability to learn and remember. The protocol, that uses only FDA approved or over the counter drugs includes B12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR or another ADHD medication(this last one only in cases of attention deficit).

Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least part of it, and the large majority of these families have observed great advances in their child’s development with no appreciable side effects. Some of the parents in attendance even related that the use of those medications have changed their child´s life, in many cases providing what they called real miracles. According to presenters, some children have started to follow the protocol as young as 3 months old and have been showing development similar to that of a typical child. Pictures and videos of the treated children were shown to illustrate the improvements.

Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus, Ohio,  14 of them on the CMF protocol.  She said that the difference between the students who take the protocol and those who don’t is remarkable.  The title of her talk was ‘Draw a Line in the Sand’. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster and remember what they learn. She also said she noticed the good results comparing the students to themselves, before and after starting the CMF protocol.

Research 
Scientists from Stanford University Down Syndrome Research Center, H. Craig Heller, PhD, Craig C. Garner, PhD , and Daniel Wetmore, PhD, talked about their research using PTZ (Pentylenetetrazol,) and how that drug would have a similar effect to Ginkgo Biloba, which is currently being used in the CMF protocol.  It acts on the GABA receptors of the cell, controlling excitatory  and inhibitory inputs, aiming to regulate these two stimuli, that are out of balance in mice and individuals with Down syndrome.  As the researchers described, too much inhibition can lead to retardation and even coma, while an excess of excitation can cause  hyperactivity to seizures.  Drs Heller, Garner and Wetmore all affirmed that this research is advanced , but it will take time and funds  for them to reach a safe and approved treatment for persons with Down syndrome. They estimate that some drug will be available on the market in about 10 years time, after the various investigation phases that include FDA approval and clinical trials on people with DS.  In their opinion, based on the studies carried out to date, PTZ would be  more effective than Ginkgo Biloba.

The Stanford team, as well as other participants of the Conference, stressed  the need for families to engage in fund raising as well as putting political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with their patients that wish to use the treatments that are already available, like those proposed by the Changing Minds Foundation.

More info: http://www.changingmindsfoundation.org/
http://dsresearch.stanford.edu/
Source: Inclusive