Interesting Story

This was posted on another email list and I found it interesting. Perspective is so much! If we would've listened to the "possibilities" of Down syndrome when we were given the diagnosis after Osiyyah was born, he wouldn't be who he is today. Praise God, he's given us the wisdom, skills, knowledge & ability to let Osiyyah thrive far beyond the dark, sad "possibilites" those so called "professionals" told us that day.

 

A Story about My Two Daughters
How to Live in the World of Possibility
By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Qadoshyah

Ordering Fast Food . . . Allergen Free . . .

We don't eat fast food very often, but when we are out and about doing errands we will swing by a fast food restaurant to grab a bite to eat. And trying to avoid allergens, like cow dairy & wheat or gluten, can be challenging. And quite entertaining!

Last week we had to run a few errands and happened to stop by two fast food restaurants. One for lunch and one to grab an ice cream on our way home.

First we stopped at Long John Silver's. Bad choice right there, but didn't think about it initially. All their fish & chicken is breaded. It's probably fried in the same oil as their french fries too. We asked the cashier, as we were trying to figure out what to order,

"Do you have any chicken that's not breaded?"

Cashier: "Um . . . I'm not sure"

Me: "Or, do you have anything without wheat in it?"

Mom chimes in: "Something that's gluten free"

Cashier: "I don't know, I've never been asked that before."

Me: "That's alright, no big deal"

That was weird. I thought they would surely have some kind of allergen free food somewhere. My Mom & I decide we'll just order french fries for Osiyyah. We've done it before at other restaurants, since he really likes fries and they are (or at least should be) gluten free.

About 5 minutes later as we're almost decided on what we want to order, the cashier says "Oh, we do have naked chicken, that we can cook without any breading on it." Um, yeah, that's what we were asking for. Haha! But, by that point, we decided to just order fries.

Mistake: Don't order fries from Long John Silver's . . . I don't think they are GF, since Osiyyah spit up later on and that's the only close-to-wheat item he had eaten.

Then onto McDonald's we went to grab some Sundaes. My sister came out with the Sundaes and told me she couldn't figure out what to get for Osiyyah. I told her to get one of those fruit parfait cups without any of the whipped topping or dairy in it . . . just frozen fruit. She heads back in and deals with another cashier unfamiliar with food allergies. After several minutes and the cashier acting like she's asking for something he's never heard of and asking the manager permission to sell her a dairy free fruit parfait cup, she was able to get a fruit cup with no dairy in it.

Ahh, the joys of ordering fast food allergen free!

Qadoshyah

Where to Order Nutrivene?

In light of the other blog I did recently regarding Nutrivene & MSB Plus, and since someone asked, I thought it would give the links to where you can order Nutrivene.

For those in the United States, International Nutrition Inc. sells Nutrivene-D and the complete recommended protocol. For the direct link to order, their website is www.nutrivene.com.

For international customers, particularly those in Europe or the UK, Nutrivene-D can be ordered from the Special Health Store online at www.specialhealthstore.co.uk.

For people who are in countries other than Europe or the United States, it can be bought from either INI or SHS. But, there are also some families who have family or friends in the US order the product and then mail it to them, as it is cheaper than paying for shipping to certain countries through the company itself.

Qadoshyah

Connecting the Rainbow & Our Book

As some of you know, my mother & I published a book about Down syndrome a little over a year ago.

The book, Down Syndrome: What You CAN Do is 589 pages long. My mom & I basically edited it and compiled all the info. Lots of doctors, therapists, parents and families wrote information, articles & stories for the book. Which makes it an excellent resource. Karen Gaffney wrote the foreword. Dr. Lawrence G. Leichtman wrote the introduction. Patricia Winders gave us a physical therapy article to include. Talk Tools & Sara Rosenfeld-Johnson gave us permission to use several articles from them. Just to name a few . . . but lots of other doctors and professionals gave us their time, information & articles.

It took us awhile to compile it together, but it has been well worth it. The book is only $22.73 for a hard copy & $5 for an e-Book. Yeah, I know that is really cheap in price. But, we didn't write this book to make a fortune. We wrote this book so that it will help other families and give families hope to realize there is so much that can be done to help children with Down syndrome.

You can see a 15 page preview of the book and it can be ordered from here.

I have a question for ya'll: Would you guys like to see a hardcover version of our book? Obviously it would be more expensive, but I'm sure there are some who prefer hard cover books over soft covers.

We recently sent International Nutrition several hundred flyers about the book and they also ordered a decent amount to start to provide it on their website. Hopefully they'll have good success with it.

A little side note . . . If anyone would like flyers for their local Down syndrome associations, new parent packets or just to have to give out to whomever, let me know and I'd be glad to mail you some. Our local DS association put a flyer in each of their new parent packets.

Now, all that to bring me to this, the main reason for the post . . . Connecting The Rainbow. I've mentioned CTR before, but thought it would be good to mention it again. We sent a hard copy of our book with Shelley on her first trip to Bulgaria to give to the families there who have chosen to keep their children.

Since that trip, Shelley & CTR has been gathering resources & tools to take to the families in Bulgaria when Shelley returns to bring her son home from Eastern Europe. They have received a great response and gotten a lot of good therapy tools, other tools & resources to take to the families in Bulgaria.

Because of that, I have a stack of 21 CD's sitting here by my computer that have a PDF of our book burned onto them. I'll be mailing them out this week, Lord willing, to Shelley and she'll take them with her on her trip to Bulgaria in April.

Qadoshyah

MSB Plus & Nutrivene: Which One?

Jasmine left a comment on the post, Nutrivene-D & What We Saw. She asked some questions looking for more information and since it is a topic that comes up fairly often, I decided to answer her in a blog post.

Question:

Hi, I'm new to your blog. I was googling NTV-D and found you. My doctor just recommended this supplement for my little girl. Your report is wonderful.

I'm going back and forth between this supplement and MSB Plus V7 by NutriChem. Any other information you may have would be greatly appreciated.

The thing I like about NutriChem is that they will formulate the supplement to suit her needs according to metabolic testing.

What are your thoughts?

Thank you,

Answer:

Nutrivene does do custom formulas as well. You just have to call or write them and ask. I know they have several premade custom formulas (e.g. methyl free formula, vitamin a free formula etc) and are willing to work with families if their child has some extra nutritional needs or cannot have certain nutrients.

From everything I have researched, which is quite a lot, Nutrivene-D is far superior to MSB Plus. Yes, MSB Plus is fine and it is a good start if that is all you can get for your child. But, Nutrivene-D covers a lot more bases and excludes a few questionable ingredients that MSB Plus has in it.

I wrote an article for our book, Down Syndrome: What You CAN Do, about Nutrivene & MSB Plus. So, I'll just paste that article here, since it answers the question quite well.

Nutrivene and MSB Plus: An Overview
By Qadoshyah Fish

The two main TNI formulas available are Nutrivene-D and MSB Plus. Another different but similar formula was the Hap Caps by Dr. Jack Warner. Since Dr. Warner’s death in 2004, his formula has fallen by the way side.

Both Nutrivene-D and MSB Plus have been around for about the same amount of time. Although the idea of supplementation in Down syndrome was not new, it became well known in 1994. Nutrivene-D and MSB Plus are similar and very different, in that they are both targeted to meet the specific nutrients needs of the population with Down syndrome.

A significant difference between Nutrivene and MSB Plus is in the way they dose. Nutrivene-D doses based on weight and age, which is very reliable, but MSB Plus doses based on age alone. Dosing by age alone is not very reliable, because children’s weights can vary greatly. Dosing by weight will give a more accurate dosage and therefore prevent any possible overdosing. Of course, this is why it is important to get annual blood testing done.

Here are some examples of the difference between the dosages:

The dosage amount of TMG in Nutrivene-D for a 2 year old who weighs 30 lbs would be 150mgs. In MSB Plus, a child who is 2 years old would be 25mgs. Some children who take Nutrivene-D have to take 500mgs extra of TMG in addition to the 150mgs already in Nutrivene-D, because of the overexpression of the CBS gene.

The amount of zinc in Nutrivene-D for a 2 year old who weighs 30 lbs would be 9mgs. In MSB Plus, a child who is 2 years old the amount would be 3.75mgs. Many children who take Nutrivene-D have to take 10-25mgs extra of zinc in addition to the zinc already in Nutrivene-D, because zinc is commonly low in DS.

There are several differences in the ingredients between these two brands:

Among the differences, MSB Plus contains Iron and L-Cysteine.

The amount of Iron in MSB Plus is not very high, yet it should still not be supplemented unless the child needs it (i.e. iron levels are low or anemic). Iron can add in oxidative damage and there is already so much oxidative stress & free radicals present in Down syndrome. But, iron & ferritin levels should be monitored closely to ensure that the child is not low or anemic.

Cysteine should not be supplemented because it is in overabundance in individuals with DS already¹, due to the improper functioning of the SAM cycle.

In addition, MSB Plus has far less ingredients than Nutrivene-D. Nutrivene-D has several more ingredients than MSB Plus. The ingredients that are in Nutrivene-D, but not in MSB Plus are:

Curcumin - an anti-oxidant & anti-inflammatory
Blueberry Powder - anti-oxidant and anti-cancer
Lutein - good for eye health
Bromelain - an anti-inflammatory

These ingredients are all very beneficial and should be given to better address and help the problems commonly seen in those with DS. If given the choice, Nutrivene-D is the better formula.


1. Pogribna M, Melnyk S, Pogribny I, Chango A, Yi P, James SJ. Homocysteine metabolism in children with Down syndrome: in vitro modulation. Am J Hum Genet. 2001 Jul;69(1):88-95


Qadoshyah

Thanks!

Thanks to those of you who left comments & gave ideas and suggestions on Osiyyah's allergy testing & possible celiac disease. I read them all and will go back and look at them as we continue on the research trail of what we should do next.

We've all been laid out for the last week with a nasty head & chest cold. Since our family is so big, it takes awhile for the sickies to move through the house, unfortunately. And the Oklahoma weather has been wild, as usual . . . 70 degree temperatures on Friday and then 30 degrees with a blizzard & ice storm by Saturday. Today the 8 inches of snow is melting a lot, so hopefully that'll be the last wintery storm we have this spring.

Qadoshyah

"Down syndrome patients could unlock mysteries of aging"

My aunt sent me this news article and I thought it was an interesting read. I knew pretty much about all this stuff already, but it was interesting to see it all in one spot.

Down syndrome patients could unlock mysteries of aging
By Liz Szabo, USA TODAY

In 1950, when Marybeth Solinski was born, a diagnosis of Down syndrome was practically a death sentence.

Children with the condition often died before their 10th birthday.

PHOTOS: Marybeth Solinski turns 59 with Down syndrome
CAREGIVERS: Face new challenges as people with Down syndrome age

Yet Solinski, at 59, has outlived her parents. She has even joined AARP.

Her longevity illustrates the dramatic progress for people with Down syndrome. Thanks to better medical care, the average life expectancy for a child with Down syndrome is now 60 years, according to the National Down Syndrome Society, which estimates that about 400,000 people are living with the condition in the USA.

As they live longer, adults with Down syndrome — who have an extra copy of chromosome 21 — are teaching scientists about the genetic roots of aging, says Ira Lott, head of pediatric neurology at the University of California-Irvine School of Medicine.

Scientists today are searching this chromosome, which contains only about 200 of the body's roughly 20,000 genes, to learn why people with Down syndrome suffer disproportionately from some health problems, such as Alzheimer's disease, but are spared many others, such as heart attacks, strokes and certain types of cancer.

By studying adults with Down syndrome, researchers hope to find new ways to combat diseases of aging in the larger population as well, Lott says.

"It's an interesting detective story," says Lott, head of the science advisory board of the National Down Syndrome Society. "People with Down syndrome are unique when it comes to many aspects of aging."

Aging troubles start early

People with Down syndrome tend to age prematurely as they develop conditions such as menopause, brittle bones, arthritis, hearing loss, wrinkles and sagging skin about two decades earlier than usual, says Brian Chicoine, medical director of the adult Down syndrome center at Advocate Lutheran General Hospital in Park Ridge, Ill., the leading center of its kind.

"People say they seem to age overnight," says Dennis McGuire, director of psychosocial services at the same center. "They suddenly develop wrinkles and gray hair."

Solinski, for example, wears a brace on one leg and hearing aids in both ears, and she has had two corneal transplants. "She's more like a 79-year-old than a 59-year-old," says her sister, Lee Cornell of Illinois.

Yet researchers suspect that this unique genetic profile also protects people with Down syndrome from many common ailments. A growing number of researchers are asking:

•What protects their hearts?

Half of babies with Down syndrome are born with correctable heart defects, and most adults with Down syndrome are overweight with high cholesterol. Despite these risks, however, people with Down syndrome virtually never develop high blood pressure, heart attacks or hardening of the arteries, Lott says. Doctors are still trying to learn why.

•Why don't they get cancer?

Doctors once believed that people with Down syndrome didn't live long enough to develop cancer, says Sandra Ryeom, a researcher at University of Pennsylvania School of Medicine in Philadelphia

Yet, with the exception of a rare pediatric leukemia, even elderly adults with Down syndrome rarely develop solid tumors, such as those of the breast or lung.

Last May, Ryeom and her colleagues found genes on the 21st chromosome that inhibit the growth of blood vessels necessary for tumor growth. Getting an extra copy of these genes, and possibly others, may help the body keep cancers in check by depriving them of blood, she says.

Researchers already are trying to develop anti-cancer treatments based on genes found on chromosome 21, says Roger Reeves of Johns Hopkins University School of Medicine.

•What protects their eyes?

Although people with Down syndrome are at higher risk for cataracts, they rarely develop a form of blindness called macular degeneration, caused by an overgrowth of blood vessels in the retina, Ryeom says. Doctors suspect that the same genes that restrict blood vessel growth in tumors may also prevent abnormal blood vessel growth in the eye.

A link to Alzheimer's?

•Why do Down syndrome patients develop early Alzheimer's disease?

Adults with Down syndrome appear to develop the brain plaques and tangles characteristic of Alzheimer's disease very early in life — even as young as 3 or 4 years old. For decades, however, their brains also appear to repair and compensate for the damage, says scientist Elizabeth Head of the University of Kentucky's Sanders-Brown Center on Aging.

"Their brains may be clearing the plaques," says Head, who is now recruiting Down syndrome patients for a study on biomarkers of Alzheimer's. "As they get older, this protective process slows down."

By age 40 to 45, virtually everyone with Down syndrome has these plaques and tangles, although only 12% have dementia, Lott says. By age 65, up to 75% of people with Down syndrome have dementia.

Significantly, doctors have found a gene that increases the risk of Alzheimer's, called APP, on the 21st chromosome, Lott says. The gene, called amyloid precursor protein, is involved in the creation of the brain plaques seen in Alzheimer's patients. People who inherit mutated copies of these genes may develop Alzheimer's disease decades earlier than usual, says William Mobley, a neuroscience professor at the University of California-San Diego.

Yet not all people with Down syndrome succumb. One of Chicoine's patients lived to 83 without dementia.

Solinski, of Chicago, loves learning so much that she takes flash cards on vacation. She pores over children's encyclopedias and Nancy Drew novels. She is learning to cook, she says, to follow in the footsteps of her mother, who died in August at 92. And, she says, "I want to be a great reader like my father."

And Brooklyn resident Edward Barsky is still healthy and independent at 73, living in a group home and navigating public transportation on his own, says his sister, Vicki Ploscowe.

"He's still going strong," says Ploscowe, of Manhattan.

If researchers could learn what protects certain people, they might be able to develop a therapy to prevent Alzheimer's — both in those with and those without Down syndrome, Head says.

'No other population' like this

People with Down syndrome present doctors with a rare opportunity to watch the disease progress, Lott says.

"There's no other population where you can really study this," Lott says. Although some people without Down syndrome carry a gene that increases their risk of early dementia, "you don't know who in the general population is going to come down with sporadic Alzheimer's. With Down syndrome, you know that virtually 100% of them will have plaques."

For example, doctors don't yet know exactly how an extra copy of chromosome 21 causes or prevents disease, Lott says. It's possible that getting a 50% larger "dose" of a gene affects the body's susceptibility to a disease, he says. Or, it's possible that the extra genetic material simply makes the entire genome more unstable.

Reeves says he's grateful to the Down syndrome community for teaching scientists so much.

"If it weren't for people with Down syndrome having fewer tumors," Reeves says, "we never would have thought to look for anything like this."

Unsure

We got the copy of the lab results yesterday afternoon. I've got a few people to talk to and some questions to go over before I'm totally sure where his labs are at.

The food allergy panel came back showing NO allergies at all. Nothing to wheat, gluten, barley or even cow milk. Which is really odd, because we know he has a reaction to any kind of cow dairy he has. And he seems to have a reaction to any wheat/gluten, since he's been reflux free for a couple weeks now.

The celiac panel looks alright too, but there are a couple antibody tests that are elevated, but not out of range. I'm going to do some research and see if those elevated levels (IGA & IGG) have anything to do with celiac.

So, Osiyyah has us puzzled at the moment ;). Does anybody have any experience with actually having celiac, but not all the test coming back elevated or positive? Any thoughts on an elevated IGA or IGG?

Qadoshyah

Waiting . . .

Still waiting on the results of Osiyyah's celiac screening & food allergy testing. The Dr's office has been a bit slow since the lab gal was out sick for a couple days I guess. (Yes, I've been calling every day to find out what's up with them ;)!)

But, since the labs were in, my dad is picking up a copy of the results today. So, at least we'll get to see what the results were. I've read quite a few lab work results over the years now, so I'm sure we'll be able to see at least some of what's going on. The celiac antibody screening isn't that hard to read anyways . . . it's just antibody levels.

We have at least anecdotal evidence that Osiyyah can't tolerate wheat/gluten. He hasn't had a single reflux episode since we cut out all wheat & gluten. Yay!

Stay tuned to see if there's anything exciting with the results . . .

Qadoshyah

New Design . . .

Been playin' around with a new blog theme for awhile . . . ever so slowly. I decided to put a bit of it up right now. Hopefully I can spice it up more later and add more to it, but I think this looks good for the time being :)!

Qadoshyah

New Study Involving Longvida Curcumin . . . Namely SLCP

A new study was published using the SLCP formula that Longvida Curcumin is made with. Very good results were achieved in the study (note bolded parts).

Safety and pharmacokinetics of a solid lipid curcumin particle formulation in osteosarcoma patients and healthy volunteers.

Gota VS, Maru GB, Soni TG, Gandhi TR, Kochar N, Agarwal MG.

ACTREC, Tata Memorial Centre, Sector-22, Kharghar, Navi Mumbai 410210, India. vgota@actrec.gov.in

Curcumin is the lipid-soluble antioxidant compound obtained from the rhizome of Curcuma longa Linn, also known as turmeric. Curcumin targets multiple chemotherapeutic and inflammatory pathways and has demonstrated safety and tolerability in humans, supporting its potential as a therapeutic agent; however, the clinical literature lacks conclusive evidence supporting its use as a therapeutic agent due to its low bioavailability in humans. The purpose of this study was to quantify plasma levels of free curcumin after dosing of a solid lipid curcumin particle (SLCP) formulation versus unformulated curcumin in healthy volunteers and to determine its tolerability and dose-plasma concentration relationship in late-stage osteosarcoma patients. Doses of 2, 3, and 4 g of SLCP were evaluated in 11 patients with osteosarcoma. Plasma curcumin levels were measured using a validated high-performance liquid chromatography method. The limit of detection of the assay was 1 ng/mL of curcumin. In healthy subjects, the mean peak concentration of curcumin achieved from dosing 650 mg of SLCP was 22.43 ng/mL, whereas plasma curcumin from dosing an equal quantity of unformulated 95% curcuminoids extract was not detected. In both healthy individuals and osteosarcoma patients, high interindividual variability in pharmacokinetics and nonlinear dose dependency was observed, suggesting potentially complex absorption kinetics. Overall, good tolerability was noted in both healthy and osteosarcoma groups.

PMID: 20092313 [PubMed - in process]

I've requested a copy of the full text of this study too, so we'll see if that may show anything else interesting.

Qadoshyah

Life On The Ranch: Spring Walk

Well, I haven't done a Life On The Ranch blog for awhile, so thought I'd put one up. Spring seems to slowly & finally be coming to Northeastern Oklahoma. It feels like we've been in winter forever!

Sunday was a gorgeous, warm & sunny spring day so, my sister & I took a walk with a few of the kids around our property.

We . .

...rode around on the bike...

...ran down the hill...

...threw sticks to the dogs...

...let the dogs roll around in the dirt...

...ran through the pasture...

...collected pine cones for the bunnies...

...threw rocks into the pond...

And to conclude our day outside . . .

...we gave the pinecones we collected to the bunnies...

...and bottled the baby goats...

Qadoshyah

Blood Draws . . . :sigh: . . .

Thursday we had to get a blood draw for Osiyyah's celiac screening & food allergy test. Since Osiyyah has had his blood drawn so many times since he was born, we always ask the lab tech if they know how to draw on someone who is a "hard stick" and doesn't really have good veins. Osiyyah has small veins and just isn't an easy one to draw from, unless you really know what you're doing.

We realized that years ago when one lab tech had to poke him 3 or 4 times before getting a good draw. We said "never again!" If the lab tech can't get him in one poke and there's no reason the lab tech shouldn't have been able to get the draw, that's it. Someone else is going to try.

Well . . . Thursday was a bit of a long appointment for a simple blood draw.

Two nurses came into the room with us. One was a Phlebotomist (someone trained to draw blood) and the other was just some nurse in the office. One of the first things they said was "You guys may have to leave the room." It was my mom & I with Osiyyah and his twin sister. We are always there when he has his blood drawn - no exception. We help hold him still, etc. His twin sister has always been there too. We immediately said "No, sorry, we aren't going anywhere. He won't do better with us out of the room." That was uncomfortableness (if that's even a word!) #1.

We asked our routine question to the Phlebotomist and she said "Oh, I've drawn on everybody. Even 2 year olds. This is what I went to school for." I was a bit unsure, but we let her try.

We held Osiyyah still, she poked him and didn't get blood right away (uncomfortableness #2). Then she was moving the needle around a bit and got a tiny amount of blood in the tube, but lost it. She had to pull it out and gave O a little bruise from that. Poor guy.

We asked her again if she really could draw on someone who doesn't have the greatest veins. Someone with Down syndrome. Someone who is a hard stick. "Yes, this is what I went to school for" is what she kept replying with. She just didn't settle well with me at all.

We kept telling them "He does not have good veins." Both nurses kept looking at his arms and saying "He has great veins." I told them we'd been dealing with getting blood draws since he was born . . . for 5 years. His veins aren't good. Period. This isn't anything new to us, folks!

The nurses left to talk to the doctor, since we had told them the hospital has someone who can get him in one stick. They didn't have a contract with the hospital anymore, so they had to see what could be done. I told my mom "I don't want her trying again, she doesn't know how to draw on someone like him." We were trying to be very polite and not upset them . . . but still firm in what we wanted. We flat out told them "We aren't going to let him be a pin cushion."

My mom was going to be a bit nicer than I was and possibly let the nurse try again. But, thankfully, a different nurse from the office next door came over. She was a young gal who was super cool & laid back. We asked her our routine question and she said "I've drawn on everybody . . . I used to work at the hospital." Osiyyah was much more relaxed when she went to draw and she got the blood right away. First poke, the tube filled up. Praise the Lord.

We'll remember her name next time he needs blood drawn at that office. The first two nurses never came back to the room :).

So, now we wait for the results to come back. I'm super curious what they may show.

Qadoshyah

Where We're At Now

My last post I mentioned our suspicion of Celiac or at least Gluten Intolerance. We had an appointment with Osiyyah's local doctor last week and she's all on board with us trying to figure out what's causing these reflux problems.

We have an appointment tomorrow to get his blood drawn and tested for the Celiac antibody screening and also another food allergy test. I think it's called the ALCAT and tests for like 23 different food allergies. She figured since we are doing a blood test for Celiac, might as well test other food allergies incase there is more. Which is great, since I wanted to get an ALCAT done at some point for Osiyyah anyways.

But, in the last week we have cut out pretty much all Gluten from Osiyyah's diet . . . and guess what, he hasn't had another reflux episode. Novel concept, huh? We've added in a *little* bit of wheat (like bread) here and there the last few days just to be sure the blood test will come back accurately.

But, it's hard to give Osiyyah any wheat, since we talked to him last week and told him why he can't have it. So he is very adamanat about no wheat. We explained to him that it's like cow's milk and he knows how that makes him feel. So, if we try to give him something and he's suspicious of it being something with wheat he shakes his head no, waves his hand around and says "weet." It's pretty funny. At least it makes going gluten-free easy, since he doesn't want to touch anything with wheat in it.

My sister was trying to give him a Jelly Bean that we were eating last night and he would not touch it because he was convinced it had "weet" in it, LOL! He doesn't care for jelly-bean type of candies anyways, so I guess that's good too ;).

We're also wondering if Osiyyah's thyroid has gone up at all, since that will make his reflux episodes increase. But, it wouldn't be directly related to what he eats. So, we're waiting for his thyroid tests to come back which we had done last week to see if that is affecting his reflux in the slightest. But, I am convinced it is largely due to something dietary. . . especially since he hasn't had any reflux since going gluten-free. Well, he had one very smal reflux a few days ago after he ate a bar that had powdered milk in it. But, other than that, he's been good.

We shall see what the test results show . . .

Qadoshyah