Posts
All Comments
Since being gluten-free, we eat a lot of mexican style food now . . . tostadas, tacos, etc. Which is fine by me, since it's quite good food anyways.
But, the other night, as I was cooking up a few pounds of ground meat, I decided to try something different . . . other than a quick tostada fixin' or tacos. Since we use corn tortillas all the time, I thought I'd fry up some homemade chips and make the dinner into nachos.
Remember this little girl I posted a picture of a few weeks back?
I was asked a few weeks ago about specifically formulating Nutrivene and if we did that for Osiyyah. As in specifically formulating it via metabolic testing, blood work, etc. I thought this would might be helpful for others, so I figured I'd post my reply up here as well (with a few changes ;)).
We have not done a custom formula. We give Osiyyah the regular formula and it works incredibly well for him. And then depending on lab work we’ll add more of a certain supplement if he needs it. Like Zinc and Vitamin D. We supplement extra in both of those. He tests low in zinc if we don’t supplement extra and Vitamin D it is recommended to give a higher amount (they can’t get that high of an amount in Nutrivene-D).Or, if needed we would reduce the amount of certain supplements, but that has never been a need or problem at all.
The thing with Nutrivene-D is that it has been "calibrated", things added to it, nutrient amounts increased or decreased, things taken away from it, etc over the last 15+ years. All of this in accordance with the latest research showing the nutritional benefits of TNI or certain supplements in children with DS. Or, based on families and what more they may need to supplement, or what they are supplementing extra with, and all that.
So, overall, Nutrivene-D is quite complete and I have never felt that we needed something specifically designed to Osiyyah’s body. That's what Nutrivene does for us already - it's targeted to meet the needs of a 47th chromosome.
Just in the fact that Nutrivene is designed for kids with an extra chromosome, says a lot. Yes, there’s a difference in kids with DS, but there are LOTS of similarities, especially when it comes to the imbalances, overexpressions, etc of all the 250+ additional genes on the third 21st chromosome.
If we were just to do testing on my brother and formulate something for him specifically, I’d be afraid that we would miss something. Because some of the nutrients in Nutrivene-D can’t just be easily tested for to see if they are needed. Some may be there to prevent something which research has shown is off balance or overexpressed because of the triplicated chromosome. And you may not necessarily be able to know via simple lab work.
There are some families who have had to give their child a bunch of supplements, because they either aren't able to get Nutrivene or their child won't take Nutrivene. These families certainly have their work cut out for them even more, but they still do have a guide. That guide? Nutrivene & the research behind it.
I know one family in Switzerland and the list of supplements their child takes is HUGE. But, it's all components that are in Nutrivene already or components that research has shown to be very beneficial.
Hope this helps someone!
We have had a few Zucchini from the garden, so it's getting to be time to make homemade Zucchini bread and all the yummy stuff you can make with garden produce :).
Some may cringe at the idea of "Zucchini bread", but it's absolutely delicious. It's basically just like Pumpkin bread. The recipe we use is a recipe that we have used for 10-15+ years. Originally it was a Pumpkin bread recipe, but we've used Zucchini with it a lot and it's always delicious.
Yesterday was the first time we had tried it Gluten-Free and it was fabulous. I think it was almost better than the "Gluten-filled" version of it! Partly because of the Sorghum flour we used in it. That flour (even the smallest amount) makes everything taste so good.
This is probably a record - 4 blog posts in a day :). Hopefully it helps keeps things interesting for ya'll!
We've done quite a decent amount of gluten-free baking lately. My 11 year old sister is the queen of the kitchen and making all the "goodies" for the house. She's come up with some amazingly delicious GF recipes. She blogs all her favorite recipes on her blog, along with her photography. She has some great kitchen & photography skills at such a young age :). Check out her blog and leave her some comments . . . I'm sure she'd enjoy it!
Our newest quest has been to do flourless baking. We've actually been quite successful so far. I made a Flourless Chocolate Cake for my brother's birthday party on Saturday. It was a hit. So rich, moist and delicious! I found the recipe by just browsing through AllRecipes.com, followed it exactly and the cake turned out great. I used 3 bags (11.5 oz each) of Ghiradelli Bittersweet Chocolate Chips.
This is a flourless Peanut Butter Cookie my little sister made. It was a big hit at my brother's party . . . even among our friends who aren't totally "gluten-free." It's a recipe that you'd never know was "Gluten-Free" or even Flourless for that matter!
Sara Rosenfeld-Johnson (TalkTools) has a blog. She recently gave a presentation at ASHA on the benefits of and the "why" behind Oral Placement Therapy (previously known as Oral Motor Therapy). It's taken her a bit of time to get the video of the presentation she did up online and this is why:
Sara said,
I didn't feel it was appropriate to film while at ASHA so I had to give the presentation to a camera instead of an audience, never my favorite. So, now you know why the long delay, but you also now have access to the video!
This past weekend was a very busy weekend for us. One of my brothers turned 18 last week, so we threw a surprise party for him on Saturday at my cousin's house (who lives across the street ;)). My brother is a cowboy and trains horses with my cousin, so the party was a "Hoe-Down" kind of party with apple bobbing, gunney sack races, cowboy dress-up, cow dummy roping, etc.
Since I said I would post this article up, I thought I'd put it up right now, since I don't have enough time to finish some of the other posts I have started ;).
In any given week or day, I more than likely got an email or emails from moms, dads, grandparents or just someone wanting to find out more information about Nutrivene or TNI in general. Last week I was corresponding with one mom and she asked about something that almost always comes up, along the lines of . . . "what information do I give to my doctor(s)?" or "how do I tell my pediatrician about TNI?"
This can be a tricky point for some families when it comes to giving TNI. There are some who trust their doctors so much, that if the doctor doesn't agree with TNI, then they won't give it to their child. Which is fine, if that's the way someone wants to live. Then there are some who will give their doctor the information, but still give it to their child no matter what the doctor says. Or some who don't even ask their doctor about it.
So, I thought I'd share what we did and what I often tell parents.
When we found out about Nutrivene when Osiyyah was 8 months old (he's not 5 years old), from everything I had researched (which was a lot!), we decided we had nothing to lose and possibly all to gain. We started Osiyyah on Nutrivene without asking any of his "doctors" who we had been seeing at the time. Because, in our mind, there was nothing these doctors would say that would make us not give it to Osiyyah. After all, they knew very little about Down syndrome, so how much help would they really be . . . not much!
But, we did get the Physicians Packet that International Nutrition has. This packet contains a bunch of information, research and studies on the benefits of TNI. I'd highly suggest this for anyone who wants to give their doctor some basic, yet good information, on TNI.
Anyways, we got the packet, made several copies and gave a packet to each doctor he had seen since he was born. We gave it to them just as an FYI and a hope that they would remember it and use it or recommend it for other kids with DS who may come into their practice.
From our experiences with doctors and professionals in Osiyyah's life, the vast majority of the doctors have known hardly anything about DS or haven't been supportive of TNI. And this is something that I hear about all too often on the DS listservs I'm on . . . parents who's doctors are in complete disagreement with Nutrivene/TNI. So, when we met Dr. Leichtman when Osiyyah was a little over a year old, it was such a relief. A relief to have a doctor who actually knew what he was talking about and could tell us something and we didn't have to teach him! And a doctor who was in support of Nutrivene!
But, most families only have their regular doctor/pediatrician and often times it is not someone who is in support of TNI. These families have to share their knowledge with their doctor, which is great, but it can also be a challenge.
This mom I was recently corresponding with, took information to her daughter's pediatrician about Nutrivene and guess what . . . he was fully supportive! In fact he highly recommends it. When she told me that, I was amazed. What a breath of fresh air for sure! He sounds like a great doctor ;).
Overall, I think it is a good thing to share about Nutrivene/TNI with your child's pediatrician, doctors and therapists and hope that they will be supportive, like this one mother's doctor. And even if they aren't supportive, I'd question as to why. Why are they against something that is so beneficial and should not cause any harm? Is it just because of their unfamiliarity with it? Just because it's "against the grain"? Or . . .? Well, then take their concerns, pair up with the research that has been done on TNI in children with DS and see if their concerns are even valid or if it's complete hogwash.
I'd highly recommend you give your doctor the Physician's Packet which International Nutrition offers or at least print some articles/resources from the internet to take to your doctor.
Two things which many people (not just doctors) bring up in regards to TNI is:
1) It's not scientifically proven in a "double-blind clinical trial"
~ Yes, it hasn't been in a double-blind clinical trial yet, because it is too expensive to do and the pharmaceutical company is not interested in doing something about a supplement like this. There isn't a massive market for it. Besides, there are t-o-n-s of studies showing the massive benefits of all the ingredients in Nutrivene. And there are even studies on children taking TNI and various antioxidant supplements and seeing great benefits. Have any of you heard or read about the craziness and the ringer the FDA put Dr. Turkel through when he tried to get the "U Series" FDA approved? Probably not . . . but that's definitely a post for another day, since it's way too much to post here!
2) It's "mega-doses" of vitamins.
This is just plain non-sense. And one of my biggest pet-peeves that I hear from those who are against TNI. The doses in Nutrivene are not mega-doses in *any* sense of the word! I wrote a whole article on this for our book and I will post that up soon, so that it goes into more depth.
Here are a few resources I'd recommend if you are looking for information just to print from online:
~ Dr. Leichtman's TNI in Children & Adults with Down Syndrome
~ Very detailed, in-depth article on TNI in a rebuttal to a very commonly used article against TNI
~ TNI FAQ
~ TNI Articles from Riverbend
~ Supplement Abstracts
~ TNI for Children with Down Syndrome by Dr. Gelb
~ Can Cognitive Deterioration associted with Down syndrome be reduced by Dr. Thiel
~ Nutrition and Down Syndrome by Dr. Thiel
~ The Effects of Supplementation in Children with Down syndrome by Dr. Peeters-Ney
I hope this helps some and as always, feel free to email me or leave a comment here and I'd be glad to help as much as I can!
Well, we had to take Osiyyah to the dentist yesterday. The night before when he was brushing his teeth, he quit and started crying because something in his mouth was hurting him. So, we had to make an appointment at the dentist on Thursday to see what was up. We thought maybe he had a cavity going, because he has had a few issues with some cavities over the years.
Anyways, Osiyyah did okay at the dentist and only cried a couple times in his visit. But, he came out of the room with two less teeth. I'm so thankful for the dentist God provided for us in Tahlequah. He's so great! Easy going, doesn't care if a kid cries while he's working on them, will work on kids with special needs (because some won't touch a kid with DS at all for whatever reason!), etc.
Osiyyah came to the waiting room where I was sitting, when he was done, and the nurse and my mom said "smile at her" . . . well he did and his two front teeth were gone(!). The look on my face must've been a look of shock! I was really hoping he wouldn't have to have any teeth pulled and that it would just be a small little cavity. But, thankfully no cavity and his teeth were pulled because his "adult teeth" were/are starting to come in behind his baby teeth. So, he would've needed the teeth out sooner-than-later anyways. Wow, it's hard to believe he is already at the age where he can start losing his baby teeth.
I was a bit torn at first . . . his speech is already delayed and I wasn't sure how having two less teeth in his mouth would affect his speech and sounds. Thankfully, it doesn't seem to be affecting him too much yet.
But, I think there may be a benefit to it (gotta look at the bright side of things, right?!) . . . he has to use his molars and the side of his mouth to chew things more, which creates that up-and-down motion that he so desperately lacks when it comes to correctly chewing (oh wait . . . he doesn't have any correct chewing to begin with). Hopefully this will help facilitate that up-and-down motion! We shall see . . . it'll be interesting to watch. I can already see that he is *having* to use his jaw and molars more, so that right there is excellent.
Poor Osiyyah, he was so bummed out at first. He thought he couldn't eat anything hard anymore. So, we explained to him a few times over that he just has to do it differently. He can still eat. He can still bite things, just has to be done on the side. After all, his older brother had the same thing done (two front teeth out) when he was little and was just fine.
So, Osiyyah has realized that he can eat just fine . . . even hard or harder pieces of food like carrots, potatoes and even a snickers bar (although that's not part of our regular diet!), etc ;).
Well, I have more to post about sometime . . . hopefully throughout next week. I've got several speech related posts lined up and a couple others too! Stay tuned.
Have a good night!
This came across one of the Down syndrome email groups I'm on and I thought it was interesting. There are some families who already supplement Choline or Phosphatidylcholine (slightly different than "just" Choline) to their kids with DS. And they have noticed improvements. One big proponent of PC supplementation is the Changing Minds Foundation.
We do not supplement addition Choline or PC by itself. There is PC in Longvida though, so Osiyyah does get some in that way.
