Wednesday, February 17, 2010

A New Path: Gluten Intolerance or Celiac Disease?

I've started to blaze a new research trail. A trail I never looked at or thought about much until the last few days.

As I've mentioned before, Osiyyah has struggled with reflux problems since he was a baby. When we started him on Nutrivene, his reflux greatly reduced. Then we realized cow dairy caused a problem for him. Once we removed cow's milk, his reflux reduced even more. And his "silent" (in that he didn't vomit, but you could certainly feel & hear the reflux) refluxing episodes were few & far between.

Lately though, he has had them more frequently. And it has gotten worse. Worse in that he cannot have anything that is made from cow's milk. No cheese, no ice cream, no sherbet, not even a salad dressing that contains cheese products (like ceasar dressing with romano & parmesan in it). We read labels and if it contains any cow's milk product, we don't give it to him. That helped some, but he has still had a bit of reflux problems here and there with all the cow dairy cut out.

So, something else must be causing this and it's time for us to make some drastic changes to his diet. The next most common allergy is Celiac disease or gluten intolerance (they are different, but very similar). The more I read & talk to people, the more I'm convinced that this is what we are dealing with in Osiyyah. Gluten is found in wheat, barley & rye. Oats often times are cut out of the diet as well and at times added back in at a later date, since they are processed with gluten many times.

Milk intolerance is commonly associated with gluten intolerance. Celiac disease is very common in kids with DS. Those two things right there make me think all the more that gluten intolerance or celiac disease is what we are dealing with.

To quote Kirstin from (I'm sure she doesn't mind ;)),

Also, when you have celiac, the villi in the intestine are damaged. The lactase enzyme to break down milk is produced by the villi. When the villi are damaged you don't produce the lactase to break down the milk.
That quote right there makes me believe we may be dealing with Celiac rather than just a gluten intolerance. Especially since Osiyyah's milk intolerance has gotten worse over the last few months. If the villi in his intestine is being damaged more & more, it would make sense that he cannot tolerate an ounce of cow dairy.

I've read a lot the last day about this and am coming up with a plan of action somewhat slowly, but surely.

I'd really like to do the celiac disease screening done asap so that we can start him on a GF diet soon. If we can get the celiac disease screening & gluten intolerance tests done, hopefully it'll show which we are dealing with - celiac or gluten intolerance. Even if all tests come back inconclusive, we will still start Osiyyah on a GF diet in the hopes that it will take his reflux problems away.

Here are some helpful websites that I've come across so far. I will keep you all updated with information & research, as usual :). - LOTS of good information here!
s-can.html - while this site is specifically referring to Autism, there is a lot of helpful info about doing a Gluten free diet. - this website has tons of info on it and I haven't even scratched the surface!!.htm - this article is very fascinating, especially in light of Osiyyah's reflux problems. - GFCF food list! Very helpful!
- My mom found this book, a GFCF shopping guide.

That's all for the moment!

Sunday, February 14, 2010

Life On The Rach: The Last Week

I know, I've slacked in blogging the last week. Just haven't had much to blog about. I will do a short recap on the last week or so of what's been happening here.

We've had a lot of cold & wet weather this year. We had a small snow storm last week with just a few inches of snow. I went ahead and took a few moments to take Osiyyah outside as it was snowing, since it wasn't super cold.

And while we were at it, we went ahead and took Canuck, our bullmastiff puppy, outside so he could "go potty."

I had Osiyyah carry the leash in case I needed to put it on Canuck if he refused to go back inside. That did happen, since it only took maybe 10 minutes before Osiyyah wanted to go back inside since he was getting cold.

Since the twins turned 5 a couple weeks ago, they got some birthday money. So we took them shopping in Walmart to pick out a few items.

One of the items - a wooden block set. Osiyyah also got a bat & ball, which has been great practice on hand-eye coordination. He actually hit the ball several times today when it was thrown at the bat :)!

The weather warmed up a few times last week, which made everything very squishy, slushy & muddy. The kids had fun running & playing in the mud puddles & the few spots of ice that were still there.


How do you know?

When the topic of someone seeing changes in their child from a certain supplement comes up on the various lists or message boards, a question which is always asked is "How do you know these changes are related to the such & such?"

While this can be a good question at times, there are other times when this is just trying to avoid the obvious, it seems.

I have heard this question numerous times over the years. The first time I heard it was back in 2005 shortly after we started Nutrivene-D with Osiyyah. Osiyyah's life changed dramatically when he started taking Nutrivene. Within a month, he was a different baby.

When we posted about the changes we saw with Osiyyah, there were some who said "well, my baby started growing at that age too" or "you can't really know it's from Nutrivene."

Or, with Longvida Curcumin. We have seen massive changes in Osiyyah's speech since starting him on Longvida.

There are some who have questioned whether or not the changes are due to Longvida, like "my child started saying a lot around that same age."

I can understand their questioning. But, I don't agree.

When you live day in & day out with your child (or sibling, for that matter), you know full well their natural development, how they are progressing, what their needs are, etc.

When Osiyyah started gaining weight, being aware of his surroundings, and had improved tone, it wasn't just his natural development. The only thing that changed in his world, was the addition of Nutrivene-D. It was an obvious life saver. I don't care what the skeptics want to say, comparing Osiyyah to himself, Nutrivene-D made all the difference at that time (when he was 8-9 months old).

Osiyyah's speech exploded in May '09 (at age 4 yrs, 3 months old) and he has continued to make amazing improvements and jumps since then. The only thing that changed in his world, was the addition of Longvida Curcumin. Again, I don't care what the skeptics want to say, I know Osiyyah and his development, this wasn't just part of his natural development. This was aided by Longvida Curcumin.

When you have a child who is a failure-to-thrive baby, or has said the same words & sounds for the past two years, suddenly change . . . Suddenly start gaining weight. Suddenly start saying new words and *sentences*. . . it is obvious this is not just "natural development." These supplements have aided their brain, their body & their health.

Knowing your child and comparing him to himself, can make things very obvious whether they are a direct result of a certain supplement or just natural development.


Sunday, February 7, 2010

News story: Why take in an aging man with Down syndrome? Unconditional love.

This link was posted up on a list I'm on and I thought it was a neat story and worth posting here:

Why take in an aging man with Down syndrome? Unconditional love.

It isn't Edgar Call's age that makes him unique, though it's certainly unusual.

No, family members say, there's a lot more to Edgar than being one of the country's oldest living men with Down syndrome.

"When you're looking at Edgar, you're looking at an angel," his "sister" Annika Rau said. "And the same could be said for my parents for what they've done for him."

Her parents, Van and Veanne Elg, took Edgar in on the advice of Van Elg's mother, then working at a group home where Edgar was living.

"She thought he'd be good for us," Veanne Elg said. "We weren't sure at the time. He was a complete stranger. But we met him and fell in love with him."

Edgar has been living with the Elgs for 17 years now. In August, he'll be 71.

"The Guinness Book of Records people have told us that to their knowledge, he's the oldest living male with Down syndrome," Van Elg said. "There's a woman who's older."

Down syndrome is a genetic condition caused by an extra chromosome. People with Down syndrome have delayed mental and social development - Edgar's mental age is two to three - and suffer from physical problems. Heart defects, leukemia and other factors can lead to early death.

At 70 Edgar has beaten the odds, living a long life that began in the eastern Idaho farming community of Bancroft. He lived with his parents and siblings there until he was 11, then was moved to the Idaho State School and Hospital in Nampa.

"His parents were quite elderly," Veanne Elg said. "They did the best they could for him, but it just became too difficult for them to care for him."

"Home" was a succession of group homes until the Elgs stepped in. A neighbor, Tiffany Larson, says she's "continually touched that they care for Edgar, who was a complete stranger to them, with such genuine love. Without them, he would have aged quietly in the group home where he lived and would have died alone. Perhaps he'd have gone years ago had he not been loved by this family."

Theirs was the first family home he'd known in more than 40 years. Their decision to share it with them changed the lives of everyone who lived there.

"When people ask us who he is, we say he's our brother," Rau, 25, said. "He is our brother."

Rau is the oldest of the Elgs' three daughters, all of whom grew up with Edgar. They can't imagine life without him.

His sense of humor brightens their lives. Though his speech is limited, he likes to sing, dance and play practical jokes.

"When it's time for him to go to bed, he'll go around and turn off all the lights," Veanne Elg said. "Even if we have company."

He loves dogs, children and cowboys.

"If someone's down," Rau said, "he can sense it. He'll ask you if you're sad and dance to make you laugh."

Edgar attends a developmental school in Meridian. Veanne is there to meet him when the bus stops at their West Boise home.

"He'll hand me a drawing and say, 'Here, Mommy.' And he always thanks us for every little thing. He has such a sweet spirit.

" É He's changed us. He didn't need to change."

Having Edgar has "taught our kids to be more patient and tolerant of other people," Van Elg added. "They've never been nervous or uncomfortable around disabled people."

The family has seen a difference in Edgar's health in the last year. He's become hard of hearing, lost the sight in one eye and has problems with his back and feet.

"It's sad because he's always been so strong and fast," Van said. "He loved to play kickball and was a good bowler. Now he's slowing down. He doesn't even talk as much as he used to."

That led to a family discussion of whether it would be necessary to move Edgar to a care center as his health deteriorated.

A brief discussion.

"When he became incontinent and harder to take places, we wondered if we'd reached the point where we could still take care of him," Van said. "Savannah (their 15-year-old daughter) said, 'No. Don't you even think about moving him somewhere. He belongs with us.'"

"It was never really an option to let him go," he added. "We've gained so much more than we've given."

"He's taught us unconditional love," Annika said.

"Yes, he has," her mother agreed. "That and that things don't always have to be perfect to be wonderful."

Tim Woodward: 377-6409



Wednesday, February 3, 2010

Five Blessed Years

Five years ago today, our life changed forever. Osiyyah & his twin sister, Yophiyyah were born.

My then 14 year old sister & I stayed with our mom in the hospital from the time she was admitted late Wednesday night, Feb. 2nd. As my sister & I stood in the hallway outside of the OR, little did we know how different our life would be from that day forward.

The twins were born naturally with no complications. Osiyyah was "Twin A" and Yophiyyah "Twin B." The babies were born at 2:05 & 2:10pm Thursday afternoon, February 3rd 2005. My sister & I briefly got a peek at the babies as the nurses wheeled them into the NICU. I remember how tiny they were. Just under 6 lbs each.

Shortly thereafter, my dad came out of the OR and went to follow the babies into the NICU. A few moments later he came back with "there is some bad news." Our hearts stopped, not knowing what he was going to say. He proceeded with "it looks like the little boy has Down syndrome." My sister & I were both relieved and I thought "oh, that's not bad."

After the babies were born and we knew this information, we went into the waiting room where the rest of the kids were and some of our friends. Being exhausted from practically no sleep in over 24 hours, my sister & I both started bawling as soon as we told everybody the news that the babies were born. We probably looked like a bunch of geeks in the waiting room that was full of other people! At that point, we were so excited to have two new babies! Praise the Lord!

From that day, our lives have changed for the better. The first few months after the twins were born, there were some challenges. With the two week NICU stay, then having to go to the pediatrician's office every 2 weeks to a month for Osiyyah. Looking back, those office visits could've been avoided had we known more. But, we live & learn.

Praise God he has given us Osiyyah. Life would be so dull & sad without him. He makes us laugh all the time.

The last 5 years have been a learning experience and I'm sure we have lots more to learn. Osiyyah is incredibly blessed to be born into our family & in this country. Into a family who loves him, even though God made him with a little something extra.

Osiyyah is thriving beyond what we ever thought and what we were ever told. I am so thankful God has given us the knowledge & understanding to help Osiyyah be where he is at today. Had we not found out about Nutrivene and the so many other things that we do with Osiyyah, I'm convinced he would not be thriving like he is today. Praise the Lord for his kindness towards Osiyyah.

To put things in perspective, if Osiyyah were born into a family in another country, especially Eastern Europe, it would be very likely that he would be in an orphanage right now. Because he is 5 years old, he would now be on his way to a mental institution. He would not be thriving. His life would consist of laying in a crib, getting hardly any attention. I can't imagine someone doing that to a child, simply because they have Down syndrome. I can hardly think about this without crying. But, this is the reality of so many children with Down syndrome in other countries. It's incredibly sad.

So, today we will sing "Ha day" (Happy birthday), as Osiyyah says, to him & his sister. And, today, as every other day, we are very thankful God has put Osiyyah in our lives.

I love you O & Yo!


Monday, February 1, 2010

Life On The Ranch: "Wow!"

"Wow!" was what Osiyyah yelled when he looked out the window Friday afternoon at the blanket of snow covering everything. And because all the kids were so excited about the snow, even though it was still snowing hard, we bundled everyone up and went out for an adventure in the snow on our property.

The winter storm warning that we had in effect all week long seemed to be true come Thursday afternoon. It started with freezing rain and by that night we had a good 1/2"-3/4" of ice covering everything. The snow started mid morning on Friday and by that afternoon & evening we had 10" to a foot of snow covering everything.

Osiyyah & all the kids have had a blast playing outside in the snow for the past several days. A lot melted today, but there's still a lot left on the ground.

Here are some pictures from the weekend:

The ice covering first:

My cousin's horses being frisky in the snow (my cousin lives across the street)

Our adventure out in the snow Friday afternoon :)

Today, the people & goat kids playing in the snow

A few random pictures taken around our property the last few days

And if you're wondering, Friday when Osiyyah proclaimed the word "Wow!" at the snow, in perfect clarity . . . on every. single. sound. in that word . . . was the first time he had said that word like that. It was such a blessing to hear him say that! He has continued to say the word clearly quite often now :).


Osiyyah & What We Do for Speech & Oral Motor

As I've blogged about before, Osiyyah's weakest area is speech. Thankfully due to Longvida Curcumin, our diligent efforts of oral motor therapy (OMT) and God's kindness, Osiyyah's speech is blossoming. And has been blossoming for a few months.

As with many of the other therapy areas with Osiyyah, we do most of the work at home with him. A few days ago someone asked what we did with Osiyyah on an email group, so I figured it would be good to post up on here as well.

What resources do we use?

I’ve found the resources from Sara Rosenfeld Johnson & TalkTools extremely helpful ( Yeah, I know they are kind of pricey, but it's been well worth it to spend a bit extra $$. I’ve watched hours of video from them and read hours of their books.

The books I've read:

-Oral Placement Therapy for Speech Clarity and Feeding
-Assessment and Treatment of the Jaw

The jaw book by far was *the* most important book I ever read on speech therapy. Everything started making so much more sense after that. Jaw strength & stability is such a critical part to speech therapy. And so many seem to overlook it.

Not all kids have a weak jaw, but many of them do (especially kids with DS). My brother, Osiyyah, definitely has lack of jaw strength. That’s his underlying problem. When I was reading the jaw book, I felt like I was reading about Osiyyah.

If the jaw is weak, everything else in the mouth & jaw are going to be weak. Once the jaw starts getting stronger, the exercises you do with everything else (tongue, lips) will all start working better. The hierarchy goes "jaw, tongue, lips." Many people tend to focus on the tongue & lips and forget about the jaw. When it really is the other way around . . . jaw first and then tongue & lips. Don't get me wrong, the tongue & lips can be worked on at the same time as the jaw, but the jaw is so essential.

The videos I’ve watched:

-Down Syndrome Population (6hr)

All of those videos were very helpful. The DS population one was especially helpful.

But, I still can’t stress enough how important the jaw book is!

TalkTools also has a cheaper DVD (the above are all kind of pricey) for parents:

-As A Parent: What Can I Do?

I have not watched the Parent DVD, but I’ve heard it is good. And, it would certainly be worth a try, since it is TONS cheaper than the other ones.

What I do with Osiyyah in regards to oral motor work:

-Bite blocks (10x per side for 20 seconds per time)
-Horn #2 (for lip closure)
-Horn #9 (for prolonged breath)
-Button pull (to encourage lip strength, rounding & closure - hold for about 10 seconds, 3-4x)
-Bubble blowing (lip rounding, adequate breath)
-Chewy tube (15 seconds per side to encourage jaw strength)
-Popsicle stick held between the lips and gently pulled on to encourage lip closure
-Popsicle stick with a penny taped onto each end held between the lips. As strength gets better, add more pennies onto it. We don't do this exercise every time we do speech.
-Z-vibe & alligator Jiggler massage to encourage oral muscle tone. We work in a massage pattern, in small circles, from the TMJ (top of the jaw) to the mouth, around the lips, on the lips and inside the mouth under his lips
-Straw #3 to promote lip closure & tongue retraction
(There are a few tongue exercises we do here and there too.)

We also do some PROMPT and visual cues to encourage certain sounds and help tongue retraction. PROMPT cues to encourage tongue retraction are particularly the "Guh" sound. It is a sound made at the very back of the throat, with the back of the tongue and requires a lot of tongue retraction to get the correct sound.

There are certain sounds we don’t work on at the moment, because I know Osiyyah’s jaw/mouth/tongue are not able to do or make that sound because of lack of strength & tone. As we work on those muscles, we continue to try the sound here and there to see if he is ready yet to work on learning the sound better. One of those sounds is the "K" sound. It's a hard one for him, for sure!

Hope this gives some ideas and feel free to leave any questions in the comments and I'll try to answer them as best as I can.


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