Wednesday, November 30, 2011
Tuesday, November 29, 2011
The expense of the many supplements and drugs which people have their child with Down syndrome on, comes up often. Yes, it's not cheap to take Longvida or Nutrivene, or the many other supplements someone may have their child take.
But, it's very worth it!
It's not common for insurances to not be willing to cover Nutrivene or any other supplement. Nutrivene seems to come up the most often with the question "can this be covered by insurance?"
There have been some families who have been able to get their insurance to cover it. I'm not sure how they were able to, but there are a few options that you could try:
-Have your doctor write a prescription for Nutrivene. A prescription is not necessary for your child to take Nutrivene, but this may be one way your doctor could get it covered.
-You could try submitting it to an insurance as a "therapy." Because, it is technically "nutritional therapy."
-In some cases, you may be able to submit it to medicare or your child's insurance as another sort of therapy, depending on how it has helped your child.
We have not tried to get it covered by insurance, since it seems like it would be a battle to try to have that done. We've been buying Nutrivene-D for almost 7 years now and God continues to provide!
If anyone has anymore information on how to get insurance or medicare to cover your child's nutritional supplementation, I'd be interested to hear it!
Monday, November 28, 2011
When someone hears that you have a child with Down syndrome, sometimes they respond with an "I'm Sorry."
There's nothing to be sorry about when you find out someone has a child with DS. Nothing. Sorry that they have a child with an extra chromosome? It's not that big of a deal. Sure, there are challenges that come along with it, but it's not a problem to be sorry about.
Our typical response to this is, "We're sorry everyone doesn't have a kid with Down syndrome."
And that is the truth. We often say this, even around our home, because O is a big blessing to our family. He makes us laugh. He's so happy. It would be good if more people had someone like that in their life.
I thought of this when I was getting O ready for the bed the other night. He was getting his Pajamas on (which are his favorite thing to wear lately :)) and he put them on all by himself. I layed them out for him so that it's very obvious where he needed to put his legs, his arms, etc. After he got them on, he threw his arms up in the air in excitement and jumped up and down with laughter. He was thrilled because he did it all by himself.
Then he put his thumb up and said "O cool" and ran and gave me a big hug.
He was excited over such a little thing. But, it really makes your day when you have someone who is excited about life. Especially the small things.
When he did this, I thought, how could someone say they're sorry we have a child like this?
Don't be sorry for us. We're glad that we have someone with Down syndrome in our life.
The publishing company which our book, Down Syndrome: What You CAN Do, is published through is having a Cyber Monday Sale.
Use this coupon code at checkout: CYBERMONDAY305 and receive 30% off.
You can go to LuLu to order the book at this link: http://www.lulu.com/spotlight/gotdownsyndrome
If you order the printed book at $22.73, take 30% off, you can get the book for $15! That's quite a deal on a 589 page book :).
Sunday, November 27, 2011
My sister over at Hanunyah's Sweet Creations, received the Tripe Cute Blog Award and passed it on. The only rule is to pass it onto 7 other bloggers.
It's a hard decision of who to pass it on to! But, here goes:
Praying for Parker
Life With My Special K's
Down Syndrome: A Day to Day Guide
I couldn't quite get 7 bloggers to pass it onto, so 5 will have to do!
Saturday, November 26, 2011
We had quite the Thanksgiving get together on Thursday. Lots of food. Lots of family & friends. Lots of fun.
One requirement we had for those who contributed to the meal was that everything had to be gluten-free and (cow milk) dairy-free. It was quite easy to do and very delicious! So, here are a lot of pictures from the day.
We also had an extra challenge in the food department - we had to make a lot of dishes GAPS diet approved, since my brother, dad, sister, aunt, cousin, and a couple friends are on this diet. This wasn't too hard, since all the meat was homegrown meat, and we make everything from scratch. It was just some of the desserts, sweet potatoes, mashed potatoes, etc, that the GAPS diet folks can't eat.
One picture of the big "Happy Thanksgiving" sign we had hanging!
Veggie platters, deviled eggs (made with GAPS friendly mayonnaise), applesauce (also GAPS friendly)
Salad & toppings
Homemade Thousand Island dressing
Fruit salad with 9 different kinds of fruit
Mashed potatoes and gravy
Green beans with bacon & almonds (the bacon was homegrown & "homesmoked" - very yummy!). Also GAPS friendly.
Meatballs (GAPS friendly)
Strawberry Sauce to put on GAPS Peanut Butter/Squash pancakes
A squash dish for GAPS.
Spaghetti Squash stir fry (also GAPS friendly)
Sweet potatoes with Marshmallows
Pumpkin Chocolate Chip Muffins, Kefir Biscuits & Apple Muffins
Pickled Beets, Pickled Asparagus, Olives & Pickled Corn
And then the drink counter. We didn't want any soda, since we aren't too fond of all the high fructose corn syrup in the soda, so we made homemade sparkling juice drinks. Sparkling Limeade (some that was both GAPS friendly and then a non-GAPS limeade, since it was made with sugar), Sparkling Apple, Sparkling Cranberry-Peach, Ginger Tea and Peppermint Tea.
We also had Jello dishes (with homemade marshmallows).
And of course, the standard Cranberry Sauce.
The meat was all roasted in a deep pit. We had to finish it off in the ovens. But, there was Ham, Deer Roast, Duck & Chicken.
And finally the desserts:
Pumpkin Pies (some GAPS friendly), Apple Pie, Frozen Peanut Butter Pie (GAPS friendly), Cranberry Oatmeal Cookies, Oatmeal Cookie Sandwiches, Whoopie Pies, Peanut Butter Truffles, Chocolate Chip Cookies, Fudge, and Double Chocolate Chip Cookies.
There was so much food that was all so good! We're very blessed! Hope your Thanksgiving was good!
Friday, November 25, 2011
You can view the first two posts covering Dr. Turkel's book here and here.
In this third post, I am going to quote a lot out of Dr. Turkel's book to show how his practice operated.
On page 12-13 of his book he writes,
Before a patient's first examination, records are sent to my office. These records include the birth and medical histories, chromosome reports and a karyogram, hospital and medical records, school and I.Q. reports, T3, T4 TSH (thyroid) studies, and 5 X 7 photographs. In this way, I obtain background information on the child's condition before the examination and can prepare the medication. Following a thorough examination of all organ systems, and including photographs of the characteristics of the syndrome such as the elevated palate, palm prints, and assessment of the patients social or mental age, specific ways to help that particular child reach his potential are discussed. Next, X-rays are taken at an independent clinic. Any necessary dosage adjustments or supplements are prepared at this time.
A patient's first appointment includes an overview of Down syndrome. The chromosomal basis of the disorder is reviewed, together with implications of the excessive gene products and how their presence interferes with their child's development. Parents observe how the accumulations manifest themselves in their own child: puffiness around the eyes, chin line, neck, abdomen; the enlarged tongue, wide gum line; skeletal abnormalities seen on X-rays. I also demonstrate improvements seen in other patients. If treatment is ended too soon, new accumulations block further development.This describes how Dr. Turkel's practice functioned. In this diagram, Dr. Turkel explains what he believed the "Treatment with the 'U' Series" did. There is a diagram on page 19 of the book that shows what Dr. Turkel believed the U Series did. I didn't get it scanned in time for this post.
On Page 28, Dr. Turkel writes about the improvements he typically saw with the "U Series":
The features of Down syndrome that usually improve are those associated with metabolic accumulations, especially fluid retention.
Improvements that occur most of the time:
Pulmonary congestion and increased lung capacity
Bone age - general growth
Reduced hypermotility of joints
Reduction of enlarged tongue and fissures
Widening of palateImprovement of facial expression and apperance
Reduced abdominal protrusion
Development of nasal bridge with reduction of epicanthal folds.
Reduction of fine-lens opacities and improvement of vision
Increased attention span
Improvements that occur some of the time
SIGNIFICANT IMPROVEMENT IN I.Q.
Reduction of scoliosis (with foot support)
Improvements that occur rarely
Single-palm line divides
Incurved fifth fingers straightenWhile some may laugh at some of the improvements Dr. Turkel reports, this is what he believed he saw at the time. His U Series helped many families back in the days when there was little to no hope given for people with Down Syndrome.
Even people in other countries raved about what the U-Series did for them. And, in some reports, you can see that the U Series, was something extremely unconventional at the time. And when it did help patients, people were amazed.
On pages 130-131 Dr. Turkel writes about the Japanese use of the U-Series,
In 1964, I renewed my acquaintance with Dr. Iida at a convention of Military Surgeons in Washington, D.C. Dr. Iida told me that complications of Down syndrome were claiming the lives of 90% of these patients prior to adolescence, and that he wanted to learn how to compound the "U" series correctly.
We discussed the formulation and manufacture of the "U" Series. For the following ten years, although I did not know it, the Japanese used and studied the "U" Series, in somewhat modified form (MD Series) because of the unavailability of several of the components.
In 1974, I received the following letter:
"I am very pleased to tell you that thanks to your kind approval we have been able to prescribe the medicine to Japanese children in several thousand at national or university hospitals amounting to about 60 in total throughout Japan, thus resulting in improvement of their health greatly."
On September 12, 1974, Dr. Iida and Dr. Takatsune Koishi, a biochemist and president of Kobato-Kai, the Parents' Association, visited Detroit to thank and inform me of the results.
The mortality rate prior to adolescence had been reduced from 90% to 1%. Since then at least 1000 additional children have been treated at 80 hospitals. While here, Drs. Iida and Koishi examined my results. Observing that the physical improvements were greater with the "U" Series than the MD Series, they decided to import it, preferably from the United States, as soon as possible.The Japanese had great results, as is stated above with an altered version of the U-Series as well. They ended up trying to import the U-Series into Japan, but the FDA refused. I will go into the details about the FDA and the U-Series in the next post, Lord willing.
Thursday, November 24, 2011
First off, Happy Thanksgiving (at least to those readers who are in the US :))!
Since it's Thanksgiving today, I thought I would share 21 things I'm thankful for about O.
...That he's my brother
...For all the progress he has made through the years
...That he has Down Syndrome
...For his laugh
...For his smile
...For his hugs & kisses
...That he likes to be cozy & cuddly still
...That he is able to read (even if it's just a few words right now)
...That he speaks in sentences (even if it's not clear to everyone)
...That he can swallow pills
...For how he says "Pajamas"...."Fafafas"
...For the small things in life (like all of the family holding hands while walking that he gets so thrilled about)
...That he likes to clean
...For how he jumps up & down and claps his hands when he's excited
...That God has used the vitamins O takes to help him excel
...That he understands so much
...For how he says "I love you" (I uv woo)
...That he was born into such a large family (it helps him so much!)
...For his health
...That he is potty trained
...That he says Mom, Mommy, Me, My and Molly (they've been such a challenge for him to learn!)
Most of all, I'm thankful that....
Wednesday, November 23, 2011
Tuesday, November 22, 2011
We have had a lot of pumpkin lately, so we've had to make a lot of pumpkin dishes (to use up the pumpkin that hasn't been put in the freezer!).
A couple weeks ago I made these Pumpkin Chocolate Chip Muffins and they were a hit!
Gluten-Free Pumpkin Chocolate Chip Muffins
(remember there is a printer-friendly option at the bottom of every blog post)
Yield: 42 regular muffins, 12 miniature muffins
3 cups rice flour (or any gluten-free flour)
2 cups brown sugar
1 1/2 teaspoons baking powder
1 1/2 teaspoons ground cinnamon
1 teaspoon salt
1/2 teaspoon baking soda
1/2 teaspoon ground nutmeg
2 cups pumpkin
1/2 cup oil
1 cup chocolate chips
splash of vanilla
1. In a mixing bowl combine the dry ingredients.
2. After mixing the dry ingredients together, add all the wet ingredients.
3. Add the chocolate chips and make sure it is all mixed together.
4. Coat the muffin pans with liners or oil/cooking spray. Fill 2/3 full with batter.
5. Bake at 400 degrees for 15-20 minutes or until a toothpick inserted comes out clean.
6. Remove from oven and let cool.