Sunday, October 31, 2010

31 for 21: The Other Kids

Well, with the post I did yesterday in mind I decided to ask the rest of the kids in my family what's one thing they are thankful for or like about Osiyyah.

Here's their responses in age order:

E. (20 yrs old): "I like how excited he is to go on walks with the dogs, even though it's a common event."
N. (18 yrs old): "His stories."
S. (16 yrs old): "He talks to me all the time and really likes animals :)."
T. (14 yrs old): "I like listening to his 'stories.' And thankful that he's not 'normal' :)."
H. (13 yrs old): "He is a very good little cleaner and helper."
H. (11 yrs old): "He keeps everyone laughing and happy and is a great example to just not worry about anything and be a good servant."
R. (9 1/2 yrs old): "He makes me laugh a lot."
B. (8 yrs old): "He's happy all the time."
Y. (5 1/2 yrs old): "He's funny."

And if you want to see a list of some of the things Osiyyah likes to do, or is thankful for, you can hop on over to my sister's blog. She "interviewed" Osiyyah yesterday and asked him 21 things he liked or was thankful for :).

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Saturday, October 30, 2010

31 for 21: 21 Things

I've seen so many people do this over the years on their blogs and message boards, so I figured I'd try to do it as one of the last couple posts in the 31 for 21 Blog Challenge. I thought it may be a bit hard to do, to come up with 21 things about Osiyyah, but it was quite easy. And I think I could go on for awhile and do a lot more than 21 things!

21 things about Osiyyah that make him unique & that I'm thankful for!

1. His laugh. It's contagious.

2. His goofy grin where he makes his whole face scrunch up.

3. The way he says "dark"..."dwark." And, how almost every night recently he asks, "Why dwark?"

4. How he randomly waves and says "Hi!" to any person while we're shopping. I've heard stories from families with "older" kids who did this and now Osiyyah does the same thing!

5. How he crawls into my bed many mornings.


6. How he wants his big sister to wake him up in the morning when she gets up to milk the goats. But she never does, since it's early!

7. How he counts days down by how many more times we have to eat, sleep & milk the goats.

8. How he thoroughly enjoys the livestock auction. He counts down the days to it!

9. How he comes outside to the "mama bunny barn" (what he calls it) many times a day with me.

10. How he tells me every morning that he will carry the "kitty cat bowl" (of food) outside & I'll carry the "arlic" (garlic)...(the garlic powder is something we give the cats to prevent fleas).


11. How he laughs at himself, in a totally fake laugh, if he puts his sister's pink boots on.

12. How he says "Oops"..."Suh-ooo." Yes, it's backwards!

13. How he says, or rather sings "Molly"...."Molleeeeee!" It's the only way he will say that word with an "m" sound and not as "Bolly."

14. How he calls almost all animals as the sound that they make, not the word that they are called. Like goats are called "ahhhh" since they sound like that, haha.

15. How he acts out so many things in his talk.


16. How he likes to dance. And how he asks to dance by saying his variation of "dance" and tapping his little heel on the floor.

17. How he says his name, so perfect & clearly.

18. How he likes to take the bullmastiffs on a walk and then help his sister give them a bath.

19. How he asks if a food is allergy free..."No cow? No wheat?" If the answer is "Yes" to both of those, he excitedly says "Osiyyah!" and claps his hands.

20. How he says something is yucky or stinky. It's "ewwwie." Or, "ewwww" as he waves his hand.


21. How he likes to clean & help do chores. He does them so well!


I'm so thankful for the blessing God has given us in Osiyyah and the extra chromosome that comes with him. He adds such a fun dynamic to our family.

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Friday, October 29, 2010

31 for 21: Life On The Ranch....Piglets

I figured I'd do a "life on the ranch" post, since I haven't done too many this month.

A couple weeks ago we had my brother's sow had 7 piglets. The kids all got to watch the piglets be born and they all had a good time :). Osiyyah was thrilled to have little piglets. Shortly after the piglets were born, Osiyyah & I went on a short little walk through the pasture. Since I didn't get to put these pictures up right after that, I will do it now.

Standing on the dry bed of the pond....


The goats in the pasture...


Osiyyah running on a path the sheep have made...


Running up the hill...


And of course the goats heard us and had to follow us out there...


Then we ran down the hill, but held hands, so Osiyyah didn't fall and wipe out on the rocky ground...


The goats in the forest...


And finally to the piglets...they were just about a week old here.


We stayed down there for a long time...Osiyyah didn't want to leave!



Big mama pig with a baby...


And a recent picture of a few of the piglets with mama...


We are so blessed to live out here and be able to do all this!


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Thursday, October 28, 2010

31 for 21: Prenatal TNI

Since I'm on the topic of using targeted nutritional intervention these last few days, I figured I'd mention the use of TNI prenatally. Believe it or not, there are things you can do prenatally to help your baby with Down syndrome (if you know you will be having a baby with DS).

I wrote the article below for our book. There are also several other articles in our book regarding prenatal use of TNI.

What Can Be Done Prenatally?
By Qadoshyah Fish

It is asked often by individuals who are looking to use TNI, “How early should I start my child on Nutrivene-D?” Well, if you know your child has DS, the best time to start TNI is prenatally! Once the baby is born, the infant could begin the Nutrivene-D Daily Supplement, but the mother will give her child a huge benefit if she would start TNI prenatally.

Pregnant women take a prenatal multi-vitamin to help their body and the developing baby. There is not much difference with that and taking a prenatal multi-vitamin that is specifically targeted for the additional nutritional needs that the developing baby with Down syndrome has.

There have been marked differences in the babies who have mothers that have taken TNI prenatally.  Many of the babies are born with no hypotonia, the low muscle tone that is typically seen in babies with DS. There are very few early slow-downs and these children generally do better in all areas¹. 

The exact mechanisms and reasons for prenatal TNI working so well are not known. There are many possible reasons for this, but until research is done, it cannot be known for sure how it works.

Below are some possible mechanisms that prenatal TNI can help with:

There are certain amino acids, which are critical for proper development of the brain and neurons in utero. Several of these amino acids, such as Serotonin, Aminobutyric acid, and Taurine, have been found to be reduced in the brains of fetuses with Down syndrome².

Oxidative stress is part of the pathogenesis of Down syndrome. It has been studied and seen that oxidative stress is increased very early in the pregnancy³. Prenatal antioxidant therapy may help slow some of the oxidative stress diseases that are often seen in individuals with Down syndrome³.

Someone may ask, “Where can I get a prenatal TNI supplement?” International Nutrition Inc, the producers of NuTriVene-D® offer a NuTriVene-PN Prenatal Formula. Nutrivene-PN is specifically designed for mothers who are pregnant with a Down syndrome baby.


1.    Lawrence Leichtman, M.D. January 2008. www.lleichtman.org
2.    Whittle N, Sartori SB, Dierssen M, Lubec G, Singewald N. Fetal Down syndrome brains exhibit aberrant levels of neurotransmitters critical for normal brain development. Pediatrics. 2007 Dec; 120(6):e1465-71.
3.    Perrone S, Longini M, Bellieni CV, Centini G, Kenanidis A, De Marco L, Petraglia F, Buonocore G. Early oxidative stress in amniotic fluid of pregnancies with Down syndrome. Clin Biochem. 2007 Feb; 40(3-4):177-80.

And, if you're looking for a good prenatal TNI supplement, International Nutrition sells Nutrivene-PN Prenatal Formula.

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Wednesday, October 27, 2010

31 for 21: A Rebuttal

When I graduated from highschool several years ago, I had to write a junior thesis and the easiest topic for me was Down syndrome nutrition. I had wanted to write an article to refute some of the claims often made by some people who are "against" the use of TNI. So, this was the perfect opportunity!

I chose to write a rebuttal against a somewhat popular "anti-TNI" article. Some folks had wanted to write a rebuttal to this article before, but never taken the time. So, when I had written this article, I had quite a few people thank me for doing so!

Since this article was posted on a handful of DS message boards & email groups, I got quite a bit of feedback from it. Like I mentioned above, I had a lot of people who really appreciated it, some who were pretty neutral on it and also a fair amount of people who hated it with a passion.

The article is called, Rebuttal to Dr. Leshin's & Quackwatch's Article, "Nutritional Supplements for Down Syndrome: A Highly Questionable Approach." It is on our website, so some of you may have already seen it, but I thought it would may be an interesting read for those who haven't seen it. The goal of the article is to just give the facts & research behind the use of TNI. This article is also in our book.

I will paste the first few opening paragraphs to the 29 page article here,

There is an ongoing debate between doctors, professionals, researchers and parents regarding the use of Targeted Nutritional Intervention (TNI) for Down Syndrome (DS). Nutritional supplementation is used by thousands of parents and is accepted and promoted by some doctors, professionals and researchers.

TNI is used to improve symptoms and alter the course of the syndrome. There have been studies done to show the beneficial effects of TNI, such as, enhancing the immune system, improving muscle tone, decreasing rate of infections, reducing oxidative stress, increasing antioxidant levels, and helping normalize homocysteine levels.

A handful of studies have been done which show little or no effect, but increasingly more studies have been done which show a beneficial effect. Len Leshin, M.D. wrote an article in the mid-1990's to try to refute the use of TNI and this article is still being used (as of this writing) as evidence that nutritional supplementation is very dubious in helping to change any outcomes in DS. The purpose of this paper is, by review of the literature, to rebut Dr. Leshin's article, through showing the usefulness and large asset that TNI does have. Although this author uses TNI in her own family, no personal or financial relationship exists with any company providing supplementation or alternative therapy.

Down Syndrome (DS) is a genetic disorder caused by a triplication of the 21st chromosome. Down syndrome was first discovered by Dr. John Langdon Down in 1866 [431]. In 1958 Professor Jerome Lejeune discovered Down syndrome was caused by a third copy of the 21st chromosome - Trisomy 21 [430]. It is the most common genetic cause of mental retardation in society [36], occurring 1 in every 750 live births [412]. Down syndrome has a higher rate of developing congenital heart defects, leukemia, Alzheimer├ó€™s Disease, immune dysfunction, cognitive defects, thyroid disorders, gastrointestinal anomalies [432], and nutrient deficiencies than the general population. It is believed to be due to this aneuploidy [433] of the syndrome causing gene over-expressions [255, 257-259, 400, 412-421]. It has been confirmed by a few studies that the "gene dosage effect" hypothesis is true [420-427]. That is, the phenotype of DS is caused by the over-expression of certain genes on the human chromosome 21 [420-427]. There are 225 more genes in an individual with DS [413], due to the trisomy of chromosome 21, than in an individual without DS, some of which are over-expressed. Surprisingly, chromosome 21 is a gene-poor chromosome, having only 225 genes [413], as in comparison to chromosome 22 which has 545 genes [413]. Due to the low amount of genes on chromosome 21, it makes it one of the only living autosomal trisomies (see endnote 413).

It can be seen from the study, The "gene dosage effect" hypothesis versus the "amplified developmental instability" hypothesis in Down syndrome [420], that evidence for the "gene dosage effect" does exist.

    * Herein, we review recent data and present evidence to support the theory that the phenotypic traits of aneuploid syndromes, and DS in particular, result from the increased dosage of genes encoded on the triplicated chromosome.

In other words, the above abstract is giving evidence which supports that the phenotype of DS is a result from an over-expression (increased dosage) of genes on the extra 21st chromosome.

Due to the over-expression of genes in Trisomy 21, it creates deficiencies in certain nutrients, excess and imbalances of other nutrients and processes, and altered metabolic and biochemical courses (see evidence for this below). Because of this, those involved with research regarding DS, doctors who have patients with DS, and parents of children with DS, have looked into nutritional supplements being able to ameliorate [434] some of the problems present in DS. There is much evidence of oxidative stress [256-257, 259, 317-341, 401], low antioxidant levels [70-75, 79-82, 84-85, 89-103], nutrient deficiencies [69-103, 253-254, 450] and excesses [104-113], and other processes which do not function properly [123-136]. Targeted Nutritional Intervention (TNI) has been shown to be beneficial and help amend the problems present in DS. Please see endnotes 1-38, 100-101, 254, 256, 259, 449, 451.

Now, Targeted Nutritional Intervention is various vitamin, mineral, amino acid and antioxidant supplements specifically formulated for individuals with Down syndrome. The idea of TNI has been around since the 1940's, with the work of Dr. Henry Turkel. Since that time, there have been several different formulas made. There is much difference though from the first formulas made and the present TNI formulas. The present formulas do not use mega-doses of ingredients, as the first formulas, such as Dr. Turkel's, did. At the time of Dr. Turkel's work, he did not have the knowledge that is present now that DS is caused by a triplication of the 21st chromosome. Due to the large amount of scientific evidence and research that is now present, the TNI formulas have been improved greatly. The most common ones are Hap Caps by Dr. Jack Warner (www.warnerhouse.com), Nutrichem's MSB Plus V7 (www.Nutrichem.com) and International Nutrition's Nutrivene-D and Nutrivene-AD (www.nutrivene.com). TNI targets Down syndrome's specific and different metabolic needs.

The subject of nutritional supplements for Down Syndrome (DS) tends to come up often in the world of Down syndrome. Due to the controversy regarding this subject, some who oppose Targeted Nutritional Intervention (TNI) often cite the article, "Nutritional Supplements for Down Syndrome: A Highly Questionable Approach" by Len Leshin, M.D., F.A.A.P. and published on Quackwatch's website. Through this rebuttal, a different perspective regarding TNI will be given. It will be shown, through research, that TNI is beneficial for the majority of those with Down syndrome. Majority, that is, because there are few who are not able to handle TNI, because not every person, including people with DS, are the same. TNI can be customized for some of the children who cannot handle the regular formula.

Dr. Len Leshin is a pediatrician in Corpus Christi, Texas and is the father of a boy with Down syndrome. He has a website with some information regarding Down syndrome health issues and is very opposed to Targeted Nutritional Intervention, as can be seen from his website (www.ds-health.com). Quackwatch is a website (www.quackwatch.org) that is against many things related to alternative, holistic or natural medicine.

Although Dr. Leshin's article is referenced often and viewed as a good article by those not in favor of TNI, one thing that should be noted in the very beginning of this rebuttal is that Quackwatch's article was last revised in October 1998. There has been much advance in the research regarding Down syndrome since that time [see endnote 444].

From what will be shown, it should be evident that most individuals with Down syndrome can benefit from taking a multi-vitamin that is targeted to their needs, because, their DNA (Deoxyribonucleic Acid) is completely different than someone without DS and therefore they have specific needs.


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Tuesday, October 26, 2010

31 for 21: It's A Marathon...

Two very common questions that come up when families just start TNI are "What results will we see?" and "We haven't seen any dramatic results yet, so what do we do?"

Several years ago, Dr. Leichtman said we need to look at TNI as a marathon, not a sprint. In other words, it's what it does in the long run that we're really going for, not just what it does on the short term.

And that is so true!

Through research we know that there are very commonly many nutrient deficiencies, high levels of certain nutrients, gene over-expressions, protein over-expressions, oxidative stress, and the list goes on. Most (if not all) of these problems are present at a very young age. Oxidative stress has been found in-utero. The earlier these problems can be addressed with nutritional help, the less damage they can do to the child's body, brain & development. The later these problems are addressed, the more damage that has been done. And the harder it is to reverse that damage.

Not every person is going to see dramatic changes and results from Nutrivene or some kind of TNI when they start their child on it. Some will see dramatic changes, like we did. But even if someone doesn't see dramatic changes, TNI is still helping that child. We cannot necessarily see all the biochemical pathways that don't work right in the body of someone with Trisomy 21. Or, the metabolic problems that are going on inside of their bodies. So, by giving TNI, we can help stop, slow and change the imbalances and problems. Even if we don't outwardly see the changes.

For an easy example, over time oxidative stress can lead to Alzheimer's disease, cancer, apoptosis (cell death), mental retardation, and more. So, by giving antioxidants to people with Down syndrome from an early age, we can help prevent, or at least greatly stall or reduce the amount of problems caused by oxidative stress.

And, that is why TNI is so important in people with DS, whether dramatic results are seen right away or not.

I heard of one family who had their child on TNI when he was little. They saw no visible results from it, so they stopped giving it. When he was older, they decided to try a TNI supplement again and they saw visible changes from it. It just really makes me wonder, what he would be like today had they not stopped TNI.

So, with all that, look at giving Nutrivene-D (or any TNI) as a marathon, not a sprint.

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Monday, October 25, 2010

31 for 21: Not What I'd Planned, But.....

Well, I've had a long day out and about and it definitely wasn't as planned. I was going to put a nice, informative post about some topic up today, but God had different plans for me today and I spent my day going to our little town first thing in the morning and then all way up to Tulsa with most of the family for the rest of the day. So, I'm quite tired out with a headache. This post is going to be a short post on something I found on another blog. I'll just quote the blog here to make it easier :).

Michelle over at Big Blueberry Eyes posted information about a study that a Virgina University is doing on people who have a sibling with Down syndrome. Here's the information, pass on to those who may be able to help with the study!

Virginia Commonwealth University is conducting a study on the effects of having a sibling with Down syndrome.

They are looking for siblings age 7 and older who have a brother or sister with Down syndrome and how it positively and negatively influences the following:

- The sibling's personality
- The sibling's relationship with his or her sibling with Down syndrome
- The sibling's relationships with his or her parents
Parents are also invited to take the survey to compare with the siblings' responses in order to examine how closely related parents' and siblings' perceptions are regarding the positive and negative impacts on the sibling from living with a brother or sister with Down syndrome.

By choosing to participate in this survey you will help researchers to better understand both the rewards and challenges that families experience as a result of having a child with Down syndrome. This research will also assist parents towards gaining insight into their well-child's experiences and feelings. Participants can register to be eligible for one of two $50 gift cards to Amazon.

For siblings 18 and older
For siblings 17 and younger
For parents
Good night & hopefully a "deeper" blog post will come tomorrow (by God's grace) :)!

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Sunday, October 24, 2010

31 for 21: Recipe 9....Sweet Potatoe Fries

This recipe is a family favorite and we make it fairly often......especially now that we have home grown sweet potatoes.

Ingredients:
*Note: I've added a printer-friendly option to the blog, so all you have to do is click that and you can print anything off!

Sweet Potatoes, cut into fries (we use 4-6 large sweet potatoes)
Garlic, crushed (we use 1-2 heads of garlic)
Parsley
Oil

Directions:

1. Fill a pot with a couple inches of oil. You want enough oil in the pot so that the fries can boil-up and fry very easily, and not be stuck on the bottom of the pot. Set aside. Turn the oil on high when you are ready. It should only take a couple minutes for it to get hot enough.

2. Peel & crush the garlic cloves, or use already minced garlic.


3. Wash the sweet potatoes and then cut into medium fry sizes.


4. Once the oil is hot enough put a medium-large handful of sweet potatoes in the oil. When they are first put in, it'll look like the picture below, if the oil is hot enough. If it does not bubble up like this, then it is not hot enough. You can test the oil by putting the end of one potatoe piece in to see if it bubbles up much. Toss in a small amount (teaspoon or so) of the minced garlic & a pinch of parsley flakes with the sweet potatoes.


4. Once the sweet potatoes start to look light brown and the oil has calmed down a little, they will be done. Typically about 3-4 minutes. Take the crispy garlic out with the fries and sprinkle it on top of the fries. Add new garlic to each batch.


5. Once the fries are out, add some garlic salt (or regular salt) and sprinkle dried parsley over top.  They're ready to eat now!



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Saturday, October 23, 2010

31 for 21: What Celiac Can Do Untreated

While this isn't necessarily directly tied to DS, because Celiac Disease & Gluten sensitivities are very common in the DS world, I thought this was a very interesting post. We have had our fair share of researching Celiac Disease & Gluten issues because of Osiyyah's allergies/sensitivities to it. It can definitely cause a lot of problems and this is one example.

The Rieben family adopted a couple girls from Bulgaria a few months ago. One of the girls had what the orphanage doctors called “malabsorption syndrome.” Well, after coming home, running tests & seeing doctors, they found out that their daughter had Celiac Disease (which they suspected) and several nutrient deficiencies, which is all caused by a gut that doesn’t absorb nutrients well, which Celiac Disease causes when it's left untreated. And as this mom writes below, her daughter is so small and has these nutrient deficiencies because of 7 1/2 years of eating gluten.

This is a quote from their blog (linked above) about what they've found with their daughter's "malabsorption syndrome."

Lily was born with cleft lip/palate. Although both had been repaired, we discovered that she still has a hole towards the front of her palate caused by what our pediatrician believes was incomplete/improper healing. She had also been diagnosed with "Malabsorption Syndrome," (at 7.5 years old she came home weighing 28 lbs. and wearing a size 3T), though the orphanage doctors assured us that she had "grown out of it" (don't worry, we didn't believe them!)……….

Highest on our priority list was getting to the bottom of Lily's "malabsorption syndrome," which she had, quite obviously, not "outgrown." In addition to the height and weight discrepancies, Lily had constant loose stool/diarrhea, her abdomen was severely distended and she ate dirt like it was a dessert (this is a condition known as Pica and it is usually a sign of anemia which the orphanage doctors had told us she had struggled with in the past). I requested a referral to a Gastroenterologist (suspecting that she might be suffering from Celiac Disease) and, while we waited for the appointment we ran blood work to test for anemia…………..

Not surprisingly, the labs came back positive. A few days later Lily had her first appointment with the GI who confirmed her diagnosis of severe iron-deficiency anemia and immediately started her on an iron supplement (to give you an idea of how severe her anemia had become, normal hemoglobin levels in children are between 11.5 and 16. Lily's hemoglobin was at 7.4 and steadily falling. Cardiac arrest generally occurs when hemoglobin levels reach 5 or below. Scary, no?). The GI (who also suspected Celiac or Inflammatory Bowel Disease) then ordered the intial tests to check for Celiac or IBD (this included more blood work and a barium swallow with small bowel follow through). Both tests came back elevated and the GI suspected that Lily might have a dual diagnosis of Celiac and Crohn's disease. The only way to know for sure was to perform a colonoscopy and endoscopy (which we now affectionately refer to as the "dual"oscopy) and biopsy both the small and large intestines. We quickly scheduled the procedures knowing that if she was suffering from Celiac disease, it was likely that her hemoglobin levels would continue to fall despite the iron supplements (since her body would be unable to absorb the iron). Again, not surprisingly, but much to our relief, the "dual"oscopies revealed that she did, in fact, have Celiac but, thankfully, not Crohns Disease (or any other IBD).

We immediately started her on a gluten-free diet. We also scheduled an appointment with the hematologist (to monitor and treat her iron-deficiency anemia) and ran more tests to pinpoint any other deficiencies that may have been caused by 7.5 years of gluten consumption. The tests for vitamin deficiencies came back showing a severe vitamin D deficiency (which confirmed our suspicions of early osteoporosis, though we are still waiting for several more tests to determine bone density and how advanced the osteoporosis is). Now, in addition to the iron supplements and gluten-free diet, she is also taking a heavy duty vitamin D supplement.

I am VERY happy to report that, after just a few weeks of following a strict gluten-free diet, my sweet little Lily has finally emerged! At a follow-up with the hematologist last week we learned that Lily's hemoglobin levels are finally at the low end of normal (11) and rising! She is no longer eating dirt. Her belly is no longer distended. She has gained 8 lbs.!! And my tired, withdrawn, sad little girl has transformed into an energetic, giggly, happy and finally healthy little girl! Her transformation is truly, truly AMAZING!!



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Friday, October 22, 2010

31 for 21: Downs Designs

Downs Designs is a new company that is working on designing clothes specifically for people with Down syndrome. Their website is pretty new, but they have the basic information on it.


You can see their site here and their blog here.


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Thursday, October 21, 2010

31 for 21: Dual Diagnoses

There are many dual diagnoses around, even in kids with Down syndrome. Just in the few years since being involved in online forums & email groups, I've come across a fair amount of them.

Down syndrome with.....
-Autism
-Spina Bifida
-Cerebral Palsy
-Cystic Fibrosis
-Pulmonary Hypertension
-Crohn's Disease
-and so much more.

With some families, "Down syndrome" gets forgotten about, because the child's medical problems far outweigh the concerns that can come with Down syndrome.

One of the more common dual diagnoses seems to be Autism. I know several families who have that dual diagnosis.

One of those families has a little boy named Jack. He's just a bit older (by about a year or so, I think) than Osiyyah. When he was under a year old he was a normal little boy with DS, doing great. His family slowly started to see regression in him. By using certain oils, they were able to stop that regression. But, when he had his 12 month vaccines, he lost everything he had learned. And everything he was capable of. He regressed 100%. In Jack's case, the vaccines threw him into full blown Autism. His family has been able to help him some by using biomedical intervention and he is slowly recovering. But, he is not where he could've been had he not been thrown into Autism by the vaccines. I know the vaccine-Autism mention is a touchy one, but in Jack's case, it is what threw him into it.

Now, there are other families I know who have the Autism-DS diagnosis that may not have necessarily been caused by vaccines. One family I know has a 20 yr old daughter, Jamie, with Aut-DS. She's had a plethora of medical problems since she was little and so could that have contributed to her Autism? Who knows exactly what caused it.

Autism is a touchy issue and one that doesn't always have definitive answers. That's why it's called the Autism-Spectrum-Disorder. Some children it's obvious what has caused it (like Jack's case), but other's it is not so clear. In some children with DS, certain genes on the 21st chromosome can make them have Autism. But, that is not necessarily always the cause for it in DS.

I asked Jamie's mom some of the best resources she's found and these are a couple books she suggested:

Book: Mental Wellness in Adults with Down Syndrome by Dennis McGuire, Ph.D. & Brian Chicoine, M.D. *specifically chapter on Autism.

Book: Down Syndrome & Vitamin Therapy by Kent Macleod *the chapter on Autism

Some more good links regarding DS-Autism would be,

Riverbend's articles on Autism & DS (in the side bar, click "Medical Series" and it'll be under there)

Disability Solutions issue on Dual Dx.


Einstein-Syndrome post regarding DS-Aut.

Here are a few email listservs for DS-Aut:

Ds-autism - Yahoo! Group for dual dx.

DSAofLouisville - Yahoo! Group for dual dx, but the focus of this group is biomedical intervention and specific diets.

Regarding some of the other dual diagnoses, here are some resources on that.

Evan, God's Best Gift, written by a mother of a boy who has spina bifida & Down syndrome. Priscilla Kendrick is still on some of the online email groups and her son is doing pretty well. Last I heard he was having to use a wheel chair at least some of the time.

Praying for Parker, this is the blog of a mom who has a little boy with DS, Pulmonary Hypertension & many other medical issues that are not related to DS.

(P.S. I just added a printer friendly option to our blog and it'll appear on every post!)


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Wednesday, October 20, 2010

31 for 21: Therapy At Home

Thanks to all the advances in research with Down syndrome and the mindset change from the early 1900's, children with Down syndrome have so much potential and so many opportunities nowadays.

At times I think we can take it for granted all the opportunities children with DS are given when it comes to physical therapy, occupational therapy, speech therapy, oral motor therapy, feeding therapy, nutritional therapy and so much more. A decade ago, families who had children with DS didn't have all this information and knowledge.

So, the norm now when a family has a child with Down syndrome is to get the child enrolled in some kind of therapy program, be it a neurodevelopmental program, an early intervention program or just private physical therapy, occupational therapy, speech therapy, etc. This is all so wonderful, because most people who have a child with DS need this kind of help. It can be a daunting task to try to figure out how you can best help your child reach milestones.

And so every family learns the abbreviations PT, ST, OT.....and sometimes OMT or OPT ;). And the other abbreviations ND or NACD.

Every family will do the therapy work differently, since there are so many options, like I mentioned above.

For our family, that meant buying books on PT, ST, OT & OMT. Osiyyah never saw a professional physical therapist, or occupational therapist and I don't regret that one bit ;). He never even saw a professional speech therapist until he was 4 years old! And even now, we only see his ST once a month just to get certain ideas from her that I can't learn myself (specifically the PROMPT commands).

With Physical Therapy we bought Patricia Winders book, Gross Motor Skills in Children with Down Syndrome

My mom and I both read the book and followed it pretty closely. We'd read it and re-read it to see what therapy items we'd need or what we should be doing with Osiyyah at a certain age or stage. We built balance bars & bought therapy balls (to help build ab support). We sat him on edges of things and held his trunk to strengthen his core & help him learn to sit. We bought the Bumbo seat & the Boppy pillow, both to help with sitting (and both were SO helpful!). We bought a Jumperoo & a walker to help his leg strength. I feel like I'm forgetting some things, so if I remember them, I'll add them.

And Osiyyah did wonderful. He never needed a "professional PT." He learned to sit at 9 months old. He pulled to stand at 13 months old. He crawled for several months before walking and he walked at 17 months old. I will say his crawl was never the "four-point crawl", but he did it his own way and it didn't hinder anything. He can crawl on all four points now :). It would've certainly inhibited him had we forced him to learn to crawl on all four points.

For Occupational Therapy we bought Maryanne Bruni's book, Fine Motor Skills for Children with Down Syndrome.

We did the same with this book and bought Osiyyah all kinds of "toys" for therapy. Puzzles. Knob Puzzles. Stacking rings. Blocks. And so much more! He did wonderful on all of it! And he never saw a "professional OT" either ;).

For speech, I think I've said quite a few times what we use. In case you haven't seen it, this post & this post are two good summary posts.

We haven't really done an ND program, but I think they can be very beneficial.

Now, all this to say, that if the parent or family is well educated, therapy can all be done at home and the child won't suffer or lack anything. There's nothing I regret as far as us not seeing any "professional" therapists. Osiyyah has thrived with us (as in his family) being his therapists. We have such a large family and he gets so much stimulation, therapy and interaction with all of us.

We talked to someone at a regional center shortly after Osiyyah was born and they told us that it sounds like he'll be fine with our family, if we need any help, just give them a call. And we haven't really needed much help. At times, the research and what we read can be overwhelming and it can make one feel unsure as to where to start, but the more research that is done and understanding that comes, it all falls into place. I'm so thankful God has given us the opportunity to be Osiyyah's therapists. It has helped him tremendously.

I know we may not be the norm, but I wanted to do this post to show that therapy can successfully be done at home without much of any help from professionals. I know not every family has a kid (myself!) 16 years older than their kiddo with DS to do all the therapy with, but our family happens to have that ;).


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Tuesday, October 19, 2010

31 for 21: The Ike Special





SNOHOMISH - Three years ago, Kay and Steve Ditzenberger were concerned that their son Ike was losing his brightness.

He was in a slump. His smile was fading. His energy was low. He seemed content to sit in the back of the auditorium for assemblies, ride in the back of the bus to school.

He was becoming disengaged, more accepting of the mistaken idea that, because he was born with Down syndrome, he was limited.

So holding hands as they walked into coach Mark Perry's classroom, Kay and Steve and Ike came to the Snohomish High School football coach and asked if he would allow Ike to play for the Panthers.

Ike's brother Josh had played high-school football at Woodinville and collegiately at Dixie State and Central Washington. Ike wanted to be like Josh.

Perry poked roly-poly Ike in the stomach, told him he had to lose a little weight, then said, "You're going to be a part of this football team for the next four years."

"From that point on, we've kind of been buddies," Perry said.

Perry's classroom at Snohomish is across the hall from the classroom for the special-needs students. He sees them every day. He talks with them, teases them, hugs them, high-fives them, loves them.

Almost intuitively he understood how football could help Ike Ditzenberger and, just as important, how Ike's presence could help his team.

"Ike has a way of making people's days around here with just a smile," Perry said. "Everybody in the school knows him. He's a challenge sometimes. He's a handful sometimes, but he's contagious in his actions. Ike is always full of energy.

"Sometimes maybe I can be too serious and he can bring me right back, reminding me that we're supposed to be having fun. He can bring things down to the important things in life."

It has been a difficult season for Snohomish, which won its first game after five consecutive defeats, 21-17 Friday night over Marysville-Pilchuck. Ike has helped lend perspective to the season.

"As coaches we're defined by ours wins and losses," Perry said. "It's a big part of the picture. We'd love to be undefeated, but I think my kids are learning more than just Xs and Os and football. And if they learn to treat another human being with humanity and compassion, we're all going to be better off."

Perry, who also coaches Ike on the wrestling team, designed a couple of plays for Ditzenberger.

The Ike Special is a running play that sends Ditzenberger up the middle. And the Ike Special Special is a kind of a swing pass.

With 10 seconds left in a recent home game, Snohomish was losing to rival Lake Stevens 35-0. The thought of shutting out Snohomish was sweet for the Vikings.

Perry called a timeout and came on the field to tell the Lake Stevens players he was going to run the Ike Special. He told the Vikings' defensive coordinator, Joe Cronin, about the play.

"I don't want you guys to lose your shutout," Perry told the players. "Preserve your shutout. You've earned it. But I'd like you to let Ike run around for 10 or 20 yards before you tackle him."

A year earlier, when Ike was on the Snohomish junior varsity team, the Panthers ran the same play against Lake Stevens and Ditzenberger scored. Many of those same Lake Stevens players were on the field for the final minutes of this game.

"We get it, coach," a Vikings player said, giving Perry a thumbs-up before the snap.

The subsequent play turned into something much more than a touchdown run. It was an all-encompassing act of human tenderness that, because of a YouTube video, was witnessed around the world.

"I've told my players I've learned more from them than they learned from me on that play," Lake Stevens coach Tom Tri said. "They were levelheaded enough to use their common sense. They weren't directed to do anything other than let Ike run for a while. But they took that literally and allowed Ike to score a touchdown.

"In hindsight, that was clearly the right thing to do. We didn't want to give up a shutout. This was one of our biggest rivals and we had a chance to shut them out on their home turf. But our players didn't even want to think about that. Their only thought was, 'Let's do the right thing.' "

Although the play is designed to go up the middle, Ike swung to the left. He actually ran out of bounds, but Perry urged him back into the field.

Ike cut right and toward the end zone as his teammates threw faux blocks and the Lake Stevens players dived and jumped and swung-and-missed at tackle attempts. Ike rode the wave of cheers from his teammates and the student body for a 51-yard touchdown.

"The Lake Stevens players, they made this happen for a special kid named Ike," Perry said. "They gave us a moment that none of us will ever forget."

Junior running back Jordan Holland, a regular who wasn't in the game, ran stride-for-stride with Ike, down the sideline, making sure Ike stayed focused and in bounds.

"I heard screaming in my ears," said Ike, a 17-year-old, 5-foot-6, 160-pound junior.

This should have been a difficult night for Snohomish, a bitter defeat in a disappointing season.

But the understanding of the Lake Stevens players and the unquenchable brightness of Ike made this moment and this game as unforgettable as a Super Bowl.

They celebrated the score as if it were the game-winner.

Holland was the first player to greet Ike after the touchdown. He lifted Ditzenberger in the air. Players mobbed Ike and encouraged him to do a touchdown dance.

He accommodated them. It was a moment of unambiguous joy.

"I was sprinting down the sideline and when I got to Ike I picked him up and he's pretty heavy and I almost hurt my back," Holland said. "We'll always remember that play. Every time we look at the picture we'll think of Ike. We'll remember all the things we've done with him. All the funny moments."

Ike ran back to the sideline and raised his helmet, acknowledging the cheers of the crowd.

"The smile on his face was priceless," said Perry, who has been in coaching for 28 years. "He knew he had done something special. He knew he'd scored a touchdown. He knew he'd succeeded in what he was trying to do."

While Ike was running, Tony Soper from Lake Stevens was recording every remarkable yard. The video he posted on YouTube went viral, getting more than a million views. The Ike Special took on a life of its own.

Both Perry and Tri got e-mails and letters from around the world, thanking them for their profound acts of sportsmanship.

"This thing's blossomed into something huge through no purpose or intent of ours," Perry said. "We gave one opportunity to one kid for one rep and in no way do you ever think that it would balloon into what it has. Ike's special to us no matter what happened."

But Ike's story is about much more than this one football play.

It is a reminder of the infinite capacity of the human heart. It is about Mark Perry's compassion. It is about the ability of the young players from Lake Stevens to understand the importance of the moment and act selflessly when it would have been so easy to be selfish.

It is about the Snohomish team's unconditional love of their teammate and about Ike's parents' love for their child.

"We've seen Ike brighten," Kay Ditzenberger said. "He no longer sits in the back at the assembly. He's right there in the front row. Football has elevated his self-opinion. He doesn't feel different. He doesn't perceive his handicap. They've given him the gift of normalcy.

"They (Snohomish players) set aside the handicap and saw the person first. They recognize the handicap secondly and they accommodate and adapt to that."

Last week, the Ditzenbergers went to Lake Stevens' practice.

"You could see in their faces that they were really proud of what they'd done," Kay said.

She spoke to the players.

"Thank you for your sacrifice, because in sacrifice is great power," she told them. "You unleashed something very powerful on the field two weeks ago that the world needed to see and hear. Your sacrifice touched the hearts of millions of people. We salute you Vikings."

She read a quote from the late UCLA basketball coach, John Wooden: "You can't live a perfect day without doing something for someone who will never be able to repay you."

At the end of the practice, Lake Stevens invited Ike to run their final play.

"I've learned from this that people can be true," Snohomish assistant coach Vince Ivelia said. "In a society that has a lot of the me attitude, this is an example of what we can do for others."

Ike's was a touchdown run like no other. It was a touchdown run that all of us should remember, a reminder of everything that is good about sports and about life.


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Monday, October 18, 2010

31 for 21: Buddy Walk 2010

Yesterday was the 8th Annual Down Syndrome Association of Tulsa Buddy Walk. It's always a great event! And it was no exception yesterday :). We arrived around noon, since we had a lot to set up - the petting zoo & Reece's Rainbow table. The event started about 1:30 and the actual walk was around 3pm.

The animals were a big hit...we had 5 goats, 1 sheep, 5 rabbits and of course my sister's Bullmastiff, Canuck. It worked out really well and went very smooth for this being the first time we had done any kind of petting zoo.

Some of the sponsors of our walk are McDonald's, Borden's, Panera Bread & Merritt's. They all provide food for free for the event, which helps make it a great turn out. DSAT always does a great job with getting a lot of fun, free events & food!


Two of the bunnies :)


The petting zoo area lookin' pretty "professional" for a first time!


Canuck getting some attention.


Old friends meeting again...this police dog was there last year, so it was fun to see him & his owner again.


One of the little goats on a leash getting some attention.


Osiyyah walking "Cutie."


The Reece's Rainbow table also went really well. We passed out tons of brochures and magnets. All the bags were given away too and we only came home with one mug and one pen (oh and a few brochures & magnets)!

One note though....If you're running an RR table at an event, the best way to get the magnets & brochures given out is to walk the crowds and hand them out. We walked the crowds several times and handed out tons that way. We also stood on the side of the track and handed out the brochures as the walk was going on. And if you have any Buddy Walk Volunteers around, give some to them to hand out. We did that and they gave out quite a few for us!

And, we also got to see several RR kiddos at the walk! Justine Foster & her kids, including Timothy (adopted from Hong Kong earlier this year) were there. The Urban family was also there. They adopted Ava from the Ukraine 2 years ago and just brought home 2 more kiddos from the Ukraine this summer....Joseph & Zoya (she doesn't have DS, she has a cleft palate). It was nice to see them all in person (again for Ava, as we met in person earlier this year ;)) and they are all so cute!

Me at the RR table :). My sisters did help, they just weren't in this picture.





And we can't leave out the 3 RR kiddos....from L to R, Ava Urban, Tim Foster & Joseph Urban. Aren't they all so cute! This picture is from Charissa, as somehow I managed not to have my camera on me when the kids were lined up. Lil Zoya isn't in the picture, but she was busy collecting all the suckers she could find from the hay stack :)!

 
We had to have a carnival game at our table to help draw people to it (one of the "rules" of our buddy walk). We had a "Hay Stack Find" and it was definitely a huge hit! Just about all 250+ candies hidden in it were found :).


And I guess I should also include a few pictures of the actual walk :).



O's Ranch Hands towering over the walk, LOL!

And we even got a bit of dancing in (a few times)....this picture is from Charissa also :).




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