Trisomy 21 Down Syndrome Awareness Locket GIVEAWAY

Well, hello, everyone! It's been awhile since I've blogged. Amazing how fast time flies by. Before I knew it, it was October again. What comes with October? Down Syndrome Awareness Month.

For the last few years I've done the 31 for 21 blog challenge - where you blog every day for Down syndrome. This year though, the time snuck up on me and I totally forgot about 31 for 21, until just a few days ago! Sooooo, oh well.

In honor of Down Syndrome Awareness month, I am going to do a special giveaway! One of my website clients runs an online jewelry store called Creative Elements 4 You. She has living life lockets & floating locket charms. I've had the opportunity to photograph many of her items for her website. And, since she heard I had a brother with Down syndrome, she made several custom Trisomy 21/Down Syndrome lockets and jewelry pieces. There's a whole special section on her website for Special Needs now :). Pretty cool!

When I was taking photographs of the T21 jewelry pieces for the website, this one below caught my eye, so I traded her for it.  It has 'T21' stamped on one tag and 'Wonderfully made' stamped on the other tag. Perfect!

But, each of the T21 pieces she has are beautiful! 

So, I have one of her beautiful lockets here to give away. This giveaway starts NOW and ends October 31, 2013 at 11:59pm. One winner will be chosen, announced on the blog and contacted by email.

 

 

There's a few ways to enter the giveaway below. You can enter up to 8 times! After the initial entry below, you will see all 7 bonus entries and can choose to do as few or as many of them as you'd like.

1) Enter with your email in the form below (required)
--Bonus entries:
2) Like 'Creative Elements 4 You' on Facebook (optional)
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5) Follow me (Qadoshyah) on Twitter (optional)
6) Tweet this giveaway (optional)
7) Follow me (Qadoshyah - CountryGirlDesigns) on Instagram (optional)
8) Re-blog this giveaway on your own blog and put the link in the giveaway bonus box below (optional). Put it on your blog by linking to this post or by using this code:

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Have fun and spread the word!

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Jumpy Monkey Coffee - Helping Individuals with Disabilites Get A Job

This came across the Einstein-Syndrome listserv last week and I thought I'd share:

On Hatteberg's People, creating a meaningful and enriching life for the developmentally disabled is the goal of a non-profit company called Mosaic in Winfield. In a unique relationship, they are partnering with local businesses to enrich the lives of the Mosaic clients, and the key is.... coffee.

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Young Man with Down Syndrome Gets His Driver's License - John Marrs

I've posted a few times about John Marrs, via updates from his mom, Jenny, over the years. John has recently graduated highschool and is now going to a local college. This is the most recent update which his mom shared:

John went into the DMV and took his driver's test yesterday. In IL a student starts driver's training as a 15 year old. You must pass the written portion of the IL test before you get your permit to drive with an adult, which John did. Then, if the driver's ed teacher sees fit, the student is given a license following his 16th birthday. Our teacher was not our best friend. So, John had to wait until after he was 18 to test at the DMV. We finally got around to taking him in yesterday for his driver's test. When he returned from his drive, I was told, "he is amazing!" John is now a licensed driver!

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It's Not A Choice. It's A Baby Who Just Happens To Have Down Syndrome.

Every few months I get a call from someone who either has just received a diagnosis of Down syndrome for their baby or is just finding out about TNI.

Yesterday I received a call from a mother who is just a few months along in her pregnancy and had received a prenatal diagnosis of Down syndrome for her unborn baby. I had a good, long conversation with her about what she can do for her baby.

But, some of the conversation dealt with the diagnosis, since it was still so fresh for her. She was discouraged because of the lack of support she had received and the comments to which people hinted towards abortion. She shared she had always been pro-life, so she was keeping her baby. But, I couldn’t sit here and be quiet over one of the comments she shared. I completely understand why she would be discouraged by the comments she has received.

She shared that one of her co-workers had said, "I'm so sorry! That is one of the worst things that could ever happen to you!"

*sigh*

People need to stop and think about what they are saying. This mother is in the very small percentage – 8% - of families who keep their baby after a prenatal diagnosis of Down syndrome. Yes, that’s right, 92% of babies prenatally diagnosed with Down syndrome have their hearts stopped by abortion and are thrown away as if they are not human.

People act like it’s the end of the world to have a child with Down syndrome. Really, folks, when that child is born, it is just.a.baby. That baby, has eyes, ears, a nose, a mouth, hands, feet, legs, arms, just like you and me. It’s a human. That baby wants to be held and loved by its mother as every other newborn does. That baby needs love and care. It needs its diaper changed. That newborn depends on its mother just like every other baby born does, for love, care, nourishment, protection and its voice. You or I could’ve been born with a third chromosome. That child did not choose to have a third 21st chromosome. God chose to give that child an extra chromosome. It’s time to lighten up, start loving, have compassion on that unborn life, be that baby’s voice and realize that all children are a blessing.

You know what, just because someone might take life a little slower, doesn’t justify ending that baby’s life. It can be a good thing to slow down and appreciate the small things in life more.

Sure, there are health concerns that are associated with Down syndrome. The concern for that is understandable, but does that justify snuffing out that little one’s life? To kill a helpless life that cannot speak for itself? No, it’s time to help that child and be that child’s voice, to protect and care for that baby.

Someone can end that life within their womb because of a diagnosis of a third chromosome. But, it’s not justified, it is wrong and they will be held accountable for their acts. God gave that mother a gift. It’s not a choice. It’s a life. It’s a child. It’s a helpless baby.

I look at my brother and see what a huge blessing he has been from the moment he was born. I cannot even begin to fathom how someone could be so cold to kill (abort) such a helpless life, who had nothing to do with having an extra chromosome. Society has promoted that it’s the “mother’s choice”, but no one seems to remember that there is a baby inside of that womb who is a person. Where is that baby’s choice?

Instead of falling into the 92% of families who abort their babies who are prenatally diagnosed with Down Syndrome, I beg any expectant mothers who run across this blog, to protect that baby who is prenatally diagnosed and be a voice for that baby.

Let's celebrate this baby, who just happens to have a diagnosis of Down syndrome, and sing its birthday song when it's born. Instead of being another birthday song that is unsung, because a child was thrown away, torn up and had its heart stopped. Simply because someone didn’t have the love to care for a child who was a little different.

As I sit here and type through the tears, I realize this post may upset some people, but I will not apologize for speaking up for those babies whose hearts are stopped at the hand of violence, and who suffer for wrong, cloaked in the name of ‘choice.’  I’m not afraid to speak up for the unborn babies who have their bloodshed and are torn up by such a shameful, heartless act. Because it’s not her choice, therefore I will not keep silent.

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Green Tea Extract: EGCG & The Benefits It Has for Down Syndrome

EGCG, which stands for Epigallocatechin-3-gallate, is an extract from Green Tea. EGCG is the major polyphenolic compound found in green tea. Green Tea has been known to have lots of health benefits for awhile, but about two years ago it came to the attention of people in the Down syndrome world.

I’ve been watching it over the last couple years. But, when I saw some new research come out about EGCG a couple weeks ago, I decided it was time to jump on the bandwagon and start supplementing with EGCG. As usual though, I needed to have all my ducks in a row, so to speak, have all the research and facts lined up, so I can definitively know why we are using EGCG. Of course, this helps others as well, which is also why I’ve typed it all up.

Original research with EGCG that sparked the attention of those in the DS world was research for Alzheimer’s disease. Let’s look at some of this initial research to lay the groundwork.

EGCG prevents certain apoptotic (pre-programmed) cell death through inhibiting the elevation of Abeta (a protein involved with Alzheimer’s and also involved with DS) via inhibition of beta and gamma-secretases. This, therefore, reduces neuroinflammation that’s associated with the progression of Alzheimer’s disease (1). We also know that neuroinflammation is involved with DS.

Alzheimer’s Disease & Down syndrome have the increased amyloid-beta protein (Abeta), which causes plaques & tangles in the brain. The processes & increases which Abeta cause are reduced by EGCG. EGCG improves memory function, as well as reducing harmful levels of increased Abeta and its associated functions (2).

So, we have EGCG which prevents cell death, reduces the elevated levels of amyloid beta, reduces Beta Secretase expression, reduces APP (Amyloid Precursor Protein – overexpressed in DS) and reduces neuroinflammation. All of this will help improve neurogenesis. That’s all great stuff, but there’s still more amazing benefits to EGCG – specifically for Down syndrome.

There’s an annoying little gene that is over expressed in Down syndrome called – get ready for this long word - dual-specificity tyrosine-(Y)-phosphorylation regulated kinase 1A, also known as DYRK1A. We’ll use the abbreviated word, since it’s a lot easier to say and remember! DYRK1A causes cognitive & learning impairments in DS and is highly involved in the neurodegenerative process in the Down syndrome brain (3-6). It also plays a role in the Alzheimer-like pathway that is seen in Down syndrome (3).
The good thing about DYRK1A is research has shown that it can be inhibited. If DYRK1A is inhibited, then the harmful effects of the gene won’t be able to function.  Remember, the over expressed aspect of this gene is what is the problem – not just the gene in and of itself.

EGCG is a safe DYRK1A inhibitor and there has been very successful research done in individuals with Down syndrome. The Jerome Lejeune Foundation has a program designed to research what will inhibit this gene. Professor Mara Dierssen, from the Jerome Lejeune Foundation, has had a very successful clinical trial (10) with individuals with Down syndrome using EGCG. Professor Dierssen is also now recruiting for a second clinical trial (11).

EGCG is also a GABA antagonist (7-9). An antagonist is a substance that acts within the body to reduce the physiological activity of another substance. Gamma-aminobutyric acid (GABA) is an inhibitory neurotransmitter.

Now that we have the definitions down, let’s get on to the problem with GABA. GABA is a good thing when it is not in excess, because it creates the perfect balance between neuronal excitation and inhibition to allow for efficient learning. But, there appears to be too much GABA-related inhibition in Down syndrome and therefore it “turns off” too many neurons in the brain and makes it more difficult to process information.

So, EGCG being a GABA antagonist, namely blocking the GABA(A) receptor (recombinant alpha1beta2gamma2L GABA(A) receptor), is a very beneficial thing for individuals with DS.  Having an antagonist which can reduce GABA, will greatly help the brain and learning in Down syndrome.

Mitochondrial dysfunction has been well established in Down syndrome. EGCG prevents oxidative deficit in the mitochondria, reduces oxidative stress and actually promotes mitochondrial biogenesis in Down syndrome (12).  This is amazing, because there has never before, to my knowledge, been a way to efficiently combat the mitochondrial dysfunction in Down syndrome.

EGCG is also an iron-chelator, which can be beneficial for individuals with DS, due to the oxidation issues that come with high levels of iron. Now, if an individual with DS already has low levels of iron, this would be something to keep in mind and monitor the iron levels while supplementing with EGCG.
So, to recap, EGCG helps improve memory, reduce the learning impairment seen in individuals with DS, reduce oxidative stress, is a potent antioxidant, promotes mitochondrial biogenesis, is a GABA antagonist, is an iron-chelator, inhibit DYRK1A, prevents cell death, reduces neuroinflammation, reduces Beta Secretase & APP expression, and causes a reduction in Abeta and the problems it causes.

With all this, one may ask, is there anything negative about EGCG? There is one thing to keep an eye on, but I wouldn’t necessarily call it a “negative.”

EGCG inhibits or reduces DHFR, which is an enzyme involved in the methylation and folate cycle. So, ultimately, it may reduce folate. We already know that folate is reduced in Down syndrome and many people use additional supplements to increase folate in Down syndrome. As long as a sufficient amount of folate or folinic acid is supplemented, I would not be too concerned about this aspect of EGCG. There are some other questions regarding DHFR and some genes that it is involved in regulating – whether it is good to stop that or not.

But, for now, look at all the benefits for EGCG above and think about all the problems which DYRK1A (and others) cause. The answer is simple for me, at the moment: Supplement with additional folate/folinic acid, or supplements to support the methylation cycle, as you are using EGCG.

Now, the question comes down to, what is the recommended dosage and what are the best brands.

The recommended dosage is 9mg/kg (kg=2.5lbs) of EGCG. This is the dosage that the clinical trials in Down syndrome are using. This is also the dosage that many parents are using with their children.

One important note on the dosage: that is NOT 9mg/kg of Green Tea. This is important to note, as most products will be Green Tea that you are giving. You will have to calculate the amount of EGCG in the product to give the correct amount. You will be giving more Green Tea, but the recommended dosage of 9mg/kg.

Because EGCG is still in the early stages of use and development, it can be a little tricky to get a brand that is bioavailable. A good brand of just EGCG is Teavigo. The problem with Teavigo is that it is not in a liposomal encapsulation (a fatty acid), to make it bioavailable enough to cross the blood-brain-barrier (which is where it is needed).

GreenSelect Phytosomes made by a company named Indena, has been found by some to be a good bioavailable form of EGCG. This has the phospholipid bound to it. There are several companies which use GreenSelect as their base. One example is VitaCost GreenSelect. Another example is Swanson's Ultra GreenSelect Green Tea Phytosome.

Another liposomal brand which some families use with their children is Enzymatic Therapy Green Tea Elite with EGCG. You can view it here and here.

We will be using the Swanson's Ultra GreenSelect Green Tea Phytosome, as is mentioned above. The cost is $14.99 for 60 capsules. Each capsule contains the following:

GreenSelect® Phytosome™

(green tea extract Camellia sinensis leaves/ Glycine max soybeans) -600 mg

Standardized to:  

19-25% polyphenols - 114-150 mg  

13% epigallocatechin 3-0 gallate (EGCG) - 78 mg

The dosage can be a little tricky with the GreenSelect Green Tea. VitaCost's GreenSelect Extract which is mentioned above contains the following per 1 capsule:

“Green Tea Extract (Camellia sinensis leaves/Glycine max soybeans) [standardized to 60% polyphenols 180mg, 40% epigallocatechin 3-0 gallate (EGCG) 120 mg]”

Originally we were going to use the VitaCost brand. But, Richard on the DSTNI list pointed out that VitaCost doesn't calculate the dosage accurately. Yes, it can be a little confusing. But, they miss the dosage part of the fatty acids in the mix. So, the dosage above for Swanson's GreenSelect is accurate and not as confusing. The VitaCost dosage is not accurate.

For a child that is O’s weight – 50 lbs – that would calculate out to 180mg/day of EGCG. With the Swanson GreenSelect EGCG, that would mean approximately 2 & 1/2 capsules. With the VitaCost brand, the dosage is almost doubled.

So, there’s a LONG explanation of why EGCG is good and everything that goes with it. I will keep notes of how O does on the EGCG and any changes we see.

*Note (Update 8/20/15): I realized that it is not mentioned about giving the child the 9mg/kg dosage of EGCG twice a day. That IS the recommended thing to do. It is best to give the 9mg/kg dosage TWICE a day, as then it is in child's body at all times. We do this with O. Some have had problems giving the dosage at night, because it has kept their child awake. Others have not had this problem. We have not experienced this problem at all.

References:
1. Brain Res. 2009 Jan 23;1250:164-74 (-)-Epigallocatechin-3-gallate prevents lipopolysaccharide-induced elevation of beta-amyloid generation and memory deficiency. Lee YK, Yuk DY, Lee JW, Lee SY, Ha TY, Oh KW, Yun YP, Hong JT.
2. Nutr. 2009 Oct;139(10):1987-93. Green tea (-)-epigallocatechin-3-gallate inhibits beta-amyloid-induced cognitive dysfunction through modification of secretase activity via inhibition of ERK and NF-kappaB pathways in mice. Lee JW, Lee YK, Ban JO, Ha TY, Yun YP, Han SB, Oh KW, Hong JT.
3. Ageing in Down Syndrome: DYRK1A As a Candidate Gene for Cognitive Decline
http://www.sciencedirect.com/science/article/pii/S2171974808700394
4. Dyrk1A Overexpression Inhibits Proliferation and Induces Premature Neuronal Differentiation of Neural Progenitor Cells. http://www.jneurosci.org/content/30/11/4004.full
5. DYRK1A in normal brain development and Down syndrome. http://www.nature.com/nrn/journal/v13/n12/fig_tab/nrn3314_F2.html 
6. Green Tea Polyphenols Rescue of Brain Defects Induced by Overexpression of DYRK1A http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0004606
7. http://sydney.edu.au/medicine/pharmacology/adrien-albert/images/pdfs/RefsPDFs/367.pdf 
8. Reducing GABAA α5 Receptor-Mediated Inhibition Rescues Functional and Neuromorphological Deficits in a Mouse Model of Down Syndrome. http://www.jneurosci.org/content/33/9/3953.full
9. Implications for treatment: GABAA receptors in aging, Down syndrome and Alzheimer's disease. http://www.ncbi.nlm.nih.gov/pubmed/21388375
10. http://clinicaltrials.gov/ct2/show/NCT01394796?term=EGCG+and+down+syndrome&rank=1
11. http://clinicaltrials.gov/ct2/show/NCT01699711?term=EGCG+and+down+syndrome&rank=2
12. Epigallocatechin-3-gallate prevents oxidative phosphorylation deficit and promotes mitochondrial biogenesis in human cells from subjects with Down's syndrome http://www.sciencedirect.com/science/article/pii/S092544391200302X
13.  A few helpful websites:
https://sites.google.com/site/superdownsyndrome/supplements/green-tea-extract
http://changingmindsaboutdownsyndrome.blogspot.com (search EGCG)
http://dsdaytoday.blogspot.com/2011/03/egcg-green-tea-extract.html
http://dstoner.net/Math_Science/Downs.html

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Using the term "Mentally Retarded"

Last week I received an email from a new mother of a baby with DS who recently came across my blog. She was furious that the term "mentally retarded" had been used in this blog. She even went so far as to say, "...you use the term mentally RETARDED!!!??? Really there's no other word besides retarded that you can use!!!!!????? So fricking ignorant of you people. OUR children are not retarded..."

In my response to her, I said I was sorry that she was offended. I asked her to point out the articles on our site which refer to individuals with DS in a derogatory way with the term "mentally retarded", so I could change it.

But, I searched my blog and only found this term used in medical literature that is being discussed in posts on the blog. And also in one post where I discuss the concern over the use of the word "retard." I told her I don't believe my brother with DS is stupid, so she must've completely misunderstood and misread my blog.

The term "mentally retarded" is what is commonly used in medical literature as they are researching ways to help individuals with Down syndrome. To have them disregard this term, would be completely ridiculous. All this term means is that there is "mental slowness." The word "retard" means "slow." Is there something wrong with an individual being slow? Is there something wrong with an individual having "mental slowness"? I don't believe there is, therefore this word does not offend me, because it is the medical way to describe one of the conditions that Trisomy 21 causes.

Is there something to try to run from because your child is "mentally retarded"? In reading medical literature, you will run across the word "mentally retarded." I don't try to hide from this word, because my brother has Down syndrome. Let's face reality. He learns slower. He does some things slower. Big deal! 

There has been a movement, at least in the past, to try to ban the words "mentally retarded", "mental retardation", "retarded", etc from being used in medical literature. To ban these words is crazy, in my opinion, because these are words to describe a symptom. All sorts of conditions & genetic abnormalities have used these words at various times to describe something. This term is used even outside of the medical world to describe various ways things work. 

It seems to me that so many people are offended over this word where it is used because they don't want to face reality. Reality is that individuals with Down syndrome function a little slower than an individual without Down syndrome. Our society has made it such a bad thing and something that nobody wants. So, when a person is faced with the reality that they may have a child now that is going to do things at a slower pace, they try to push every aspect that may hint towards that off. 

But, really, it's not that big of a deal to have a child do things at a slower pace, or to learn things slower. I accept what God has given us and am thankful for it. The genetic anomalies that happen due to the third copy of Chromosome 21 in Down syndrome are not always pretty and those aspects I'd like to stop, or slow down. So, I do what I know is good and what I can to help stop those processes or to at least slow them down. 

Really, I'm thankful I have a brother who takes life a little slower. It's good for us :).

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John Marrs Update

I got an email from Jenny the other day with an update on John Marrs and his website. His website link had changed over the years and she just found out that it had to be updated.

http://myplace.frontier.com/~ezlopin/johnmarrs/index.html

I had updated about John Marrs last year here. Below is Jenny's newest update:

John is a senior now. He just took part in the National Honor Society inducting the juniors. He will get to wear his honors sash one last time when he graduates in May.  He took Geometry this year. I was worried a little about that, but he has done himself proud. I talked with his teacher recently because they were going to do a unit on trigonometry. His teacher said that he hadn't had to modify anything for him all year, and he was wracking his brain trying to figure out how to get through trig, which he thought would be hard. John came home one day with a few problems done. I asked him how he did them, and he actually taught me how. He sailed through the unit.... 

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Tim's Place in Albuquerque - Man with Down Syndrome Owns His Own Restaurant

If you haven't watched this video about an Albuquerque, New Mexico restaurant called Tim's Place, you've got to watch it.

Tim is the owner of the restaurant and he just happens to have Down syndrome. He dances into work every morning, and gives everyone a hug when they come to his restaurant. He said he had always dreamed of owning a restaurant when he was a kid, and once he became an adult, his parents helped him fulfill that dream.

Their slogan is "Breakfast, Lunch & Hugs." Tim says the best part about it is giving people hugs, because "food is just food."

Everyone could learn a lesson from this. Pretty cool.




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8 Blessed Years

8 years ago this month, my life changed forever. O & his twin sister, Yo, were born. 

I was 16 years old at the time and had been running the house with my then 14 year old sister, Ez, because the twin pregnancy was tough on my mom. Finally, one Wednesday night, my mom went into labor, so down to the hospital we all went. After a long night, the twins were born. 

Ez & I had stayed with my mom in the hospital all night, so we were exhausted as we stood in the hall outside of the operating room waiting for the news of the twins arrival. Eventually the nurses wheeled them by us in a little bed. I remember their tiny little faces both staring up at us as they whisked them by. They were so small. So cute. And we were so excited for their arrival. 

Shortly after they were taken into the NICU, my dad came out of the NICU saying, "there is some bad news..." I know I've posted this before, but it's so clearly etched in my memory of their birth. I remember exactly where we were standing and I have a picture of that moment frozen into my head. After my dad said those words, in the second before he finished his sentence, my sister & I's hearts sunk, not knowing what he was going to say. My dad finished his sentence by saying, "it looks like the little boy might have Down syndrome." Our hearts were relieved and I felt like I could breath again. We both said, "that's not bad." 

And his diagnosis is not bad. I was completely clueless at the time as to the details of what Down syndrome was. In my 16 years of life, I had never once thought about having a sibling with a "syndrome" or special needs. But, was the excitement of having two new siblings going to change because one had a "syndrome"? No. It's just another step along this journey of life. And I determined to jump on the bandwagon with him and do whatever he needed and whatever we would need to do. 

I quickly learned a lot about Down syndrome. That first year there was a lot of learning that had to be done. And it had to be done quickly, because a little guys life and well being depended on it. 

Throughout the years, we've had our challenges. But, it's just part of this journey. I couldn't be more thankful that God put O in our life. I'm so thankful he was put into a large family, because it has been a tremendous help for him. Having so many "cheerleaders" around him all the time, has encouraged him to get to those milestones.

It's hard to believe O & Yo are 8 years old now. I remember not being able to picture what it would be like when he would be 5 years old, let alone 8. I remember when I first joined certain listservs and I would be getting advice from parents with "big kids" who had Down syndrome - their kids were 5, 8, 10 years old - and that seemed so far off.

It has been a blessed 8 years. O struggles with some things still, but is thriving. He is doing so well, it's truly a blessing. His biggest delay has always been his speech clarity, but most of us (who are around him all the time) understand him. He says full sentences, just needs help in clarity.

Seriously, I think a lot of people would be way better off if they had the blessing of someone with Down syndrome in their life.



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Individuals with Special Needs Getting Married

On one of the Down syndrome listservs I'm on, someone share this sweet story of a man with Down syndrome and a woman with Hydrocephalus getting married: "When Bill met Shelley: No disability could keep them apart".

This story reminded me of the documentary we watched a few weeks ago called Monica & David. It's a documentary of a couple with Down syndrome who end up getting married. It was a sweet, really neat documentary to watch. We enjoyed the whole thing! I'll just share the trailer here.



The website for the film, Monica & David, can be seen here: MonicaandDavid.com. There are pictures on the site and also where you can get the full documentary. We watched the documentary on Netflix


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SimplyThick - Warning With It's Use in Infants - Causes Death

My friend forwarded this news article to me. While some of it may be old news, I thought this was important and I would share it. I know SimplyThick has been recommended and used with babies who have Down syndrome to help with reflux and feeding issues.

Warning Too Late for Some Babies
By CATHERINE SAINT LOUIS

Six weeks after Jack Mahoney was born prematurely on Feb. 3, 2011, the neonatal staff at WakeMed Hospital in Raleigh, N.C., noticed that his heart rate slowed slightly when he ate. They figured he was having difficulty feeding, and they added a thickener to help.

When Jack was discharged, his parents were given the thickener, SimplyThick, to mix into his formula. Two weeks later, Jack was back in the hospital, with a swollen belly and in inconsolable pain. By then, most of his small intestine had stopped working. He died soon after, at 66 days old.

A month later, the Food and Drug Administration issued a caution that SimplyThick should not be fed to premature infants because it may cause necrotizing enterocolitis, or NEC, a life-threatening condition that damages intestinal tissue.

Experts do not know how the product may be linked to the condition, but Jack is not the only child to die after receiving SimplyThick. An F.D.A. investigation of 84 cases, published in The Journal of Pediatrics in 2012, found a "distinct illness pattern" in 22 instances that suggested a possible link between SimplyThick and NEC. Seven deaths were cited; 14 infants required surgery.

Last September, after more adverse events were reported, the F.D.A. warned that the thickener should not be given to any infants. But the fact that SimplyThick was widely used at all in neonatal intensive care units has spawned a spate of lawsuits and raised questions about regulatory oversight of food additives for infants.

SimplyThick is made from xanthan gum, a widely-used food additive on the F.D.A.'s list of substances "generally recognized as safe." SimplyThick is classified as a food and the F.D.A. did not assess it for safety.

John Holahan, president of SimplyThick, which is based in St. Louis, acknowledged that the company marketed the product to speech language pathologists who in turn recommended it to infants. The patent touted its effectiveness in breast milk.

However, Mr. Holahan said, "There was no need to conduct studies, as the use of thickeners overall was already well established. In addition, the safety of xanthan gum was already well established."

Since 2001, SimplyThick has been widely used by adults with swallowing difficulties. A liquid thickened to about the consistency of honey allows the drinker more time to close his airway and prevent aspiration.

Doctors in newborn intensive care units often ask non-physician colleagues like speech pathologists to determine whether an infant has a swallowing problem. And those auxiliary feeding specialists often recommended SimplyThick for neonates with swallowing troubles or acid reflux.

The thickener became popular because it was easy to mix, could be used with breast milk, and maintained its consistency, unlike alternatives like rice cereal.

"It was word of mouth, then neonatologists got used to using it. It became adopted," said Dr. Steven Abrams, a neonatologist at Texas Children's Hospital in Houston. "At any given time, several babies in our nursery - and in any neonatal unit - would be on it."

But in early 2011, Dr. Benson Silverman, the director of the F.D.A.'s infant formula section, was alerted to an online forum where doctors had reported 15 cases of NEC among infants given SimplyThick. The agency issued its first warning about its use in babies that May. "We can only do something with the information we are provided with," he said. "If information is not provided, how would we know?"

Most infants who took SimplyThick did not fall ill, and NEC is not uncommon in premature infants. But most who develop NEC do so while still in the hospital. Some premature infants given SimplyThick developed NEC later than usual, a few after they went home, a pattern the F.D.A. found unusually worrisome.

Even now it is not known how the thickener might have contributed to the infant deaths. One possibility is that xanthan gum itself is not suitable for the fragile digestive systems of newborns. The intestines of premature babies are "much more likely to have bacterial overgrowth" than adults', said Dr. Jeffrey Pietz, the chief of newborn medicine at Children's Hospital Central California in Madera.

"You try not to put anything in a baby's intestine that's not natural." If you do, he added, "you've got to have a good reason."

A second possibility is that batches of the thickener were contaminated with harmful bacteria. In late May 2011, the F.D.A. inspected the plants that make SimplyThick and found violations at one in Stone Mountain, Ga., including a failure to "thermally process" the product to destroy bacteria of a "public health significance."

The company, Thermo Pac, voluntarily withdrew certain batches. But it appears some children may have ingested potentially contaminated batches.

The parents of Jaden Santos, a preemie who died of NEC while on SimplyThick, still have unused packets of recalled lots, according to their lawyer, Joe Taraska.

The authors of the F.D.A. report theorized that the infants' intestinal membranes could have been damaged by bacteria breaking down the xanthan gum into too many toxic byproducts.

Dr. Qing Yang, a neonatologist at Wake Forest University, is a co-author of a case series in the Journal of Perinatology about three premature infants who took SimplyThick, developed NEC and were treated. The paper speculates that NEC was "most likely caused by the stimulation of the immature gut by xanthan gum."

Dr. Yang said she only belatedly realized "there's a lack of data" on xanthan gum's use in preemies. "The lesson I learned is not to be totally dependent on the speech pathologist."

Julie Mueller's daughter Addison was born full-term and given SimplyThick after a swallow test showed she was at risk of choking. It was recommended by a speech pathologist at the hospital.

Less than a month later, Addison was dead with multiple holes in her small intestine. "It was a nightmare," said Ms. Mueller, who has filed a lawsuit against SimplyThick. "I was astounded how a hospital and manufacturer was gearing this toward newborns when they never had to prove it would be safe for them. Basically we just did a research trial for the manufacturer."


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Dr. Julia Kinder & A Petition to Medical Schools

I received an email about 10 days ago and just kept forgetting to look at it with much detail. I took a look at it today and while it's not Down Syndrome Awareness Month still, thought it would be good to share nonetheless. 

Celebrate the UPside of Down™ during National Down Syndrome

Awareness Month: Dispelling Myths and Smashing Stereotypes

Dr. Julia Kinder is celebrating National Down Syndrome Awareness Month with a Sweepstakes,

Photo Contest, and a Petition to Medical School Faculty across the United States.

Cape Girardeau, MO – October 18, 2012 – Dr. Julia Kinder, practicing physician, national speaker, and an advocate for children with special needs, is celebrating National Down Syndrome Awareness Month with an online Photo Contest, Sweepstakes, and a very important Petition. These can be found on her website, www.JuliaKinder.com. The photo contest gives families of children with Down syndrome an avenue for showcasing their child’s abilities. The sweepstakes offers fun awareness products created by Dr. Kinder while drawing attention to dispelling the myths and stereotypes surrounding Down syndrome.  The newly launched petition calls upon medical schools to provide more training on Down syndrome.

“No parent should feel like their baby's life starts out with a death; the death of their dreams for the future, the end of their hope for a happy, healthy child,” said Dr. Kinder, owner of JuliaKinder.com. “But it happens every day, because physicians who deliver the diagnosis of Down syndrome often give inaccurate, incomplete, and negative information that intensifies the unfounded fear of this diagnosis.”

Currently physicians do not receive training on giving the diagnosis of Down syndrome in a productive way, according to Dr. Kinder. Nor do they learn of needed resources for parents and baby. Medical education focuses on the possible health and learning issues, which not every child will encounter. Physicians do not understand what a child with Down syndrome is like outside of the medical aspects. What is crucial to every baby with Down syndrome is that they begin receiving early intervention and therapy immediately. Medical education does not cover this topic, therefore, physicians are missing a crucial piece of information to pass along to new parents.

Dr. Kinder has been a practicing physician for the past decade. However, eight years ago when her daughter was born with Down syndrome, she discovered her medical training did nothing to prepare her for raising a child with Down syndrome.

“Ella is completely healthy and smart, which contradicts everything I learned about Down syndrome,” said Dr. Kinder. “Medical school taught me about a laundry list of health problems and mental retardation, none of which applied to my child. I had no practical information on how to take care of her. I didn’t know she needed to start therapy immediately. When she was born, the doctors and hospital gave me no information or resources. I left the hospital without so much as a pamphlet.”

According to Dr. Kinder, the information on Down syndrome that doctors give to new parents tends to focus on the potential medical and learning problems. Doctors have not been trained to explain to these new parents that a child with Down syndrome is more like other children than they are different, and that many of the medical issues never materialize. Parents leave the hospital with the impression that their child’s prospects for a happy, healthy, and fulfilled life are grim. Unfortunately, many parents admit they struggled to connect emotionally with their baby during those first few months, as if unconsciously attempting to prepare for some awful manifestation of the diagnosis.

“I have decided to tackle this issue head-on,” states Dr. Kinder. “It is unacceptable for the medical community to contribute to a new parent’s fear of their own baby. This negative emotional state can prevent parents from providing the appropriate care their newborn needs. Babies with Down syndrome must start early intervention and therapy immediately - it should not be delayed because doctors fail to give parents complete and accurate information, along with resources for support.”

Dr. Kinder has spent eight years speaking to the medical community, future teachers and therapists, and to the general public regarding Down syndrome, as well as counseled hundreds of new parents. In 2009 Dr. Kinder began blogging on the topic, giving new parents hope and direction. She has devised fun ways to dispel the myths and darkness by promoting positive phrases such as “My kid has more Chromosomes than yours” as well as the “UPside of Down” concept. She encourages others to proudly display the UPside of Down with car decals, shirts, bracelets, and other awareness products that she has developed. Dr. Kinder has created a tribe of families who support each other and spread awareness. Their motto is, “Go beyond just surviving [with Down syndrome] to Thriving - become a Thrivalist!”

“I want to show the world the UPside of Down syndrome and I want to improve the education medical students receive on helping new parents,” said Dr. Kinder. “My ultimate goal is for the birth of every baby with Down syndrome to be celebrated, and for every baby to receive the care required to maximize their developmental potential.”

To get involved and sign Dr. Kinder’s petition please go to www.JuliaKinder.com/petition/. To learn more about her website’s Down Syndrome Awareness Month activities and to participate in the celebration, please visit http://www.JuliaKinder.com/DownSyndromeCelebration/.

About Dr. Julia Kinder

Dr. Julia A. Pewitt Kinder is an accomplished national speaker, early childhood education advocate, author and practicing physician. She and husband Mitch reside in Cape Girardeau, Mo., with their three children, Ella and twin boys Paxton and Dexter.  Dr. Kinder is licensed to practice in both Missouri and Texas and is in private practice with her brother in Jackson, Missouri. She also serves as a hospice physician for Tri-County Hospice. In addition, Dr. Kinder is a certified fitness instructor and promotes easy ways to incorporate exercise into daily routines. More information about Dr. Kinder can be found on her website at www.JuliaKinder.com.

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