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Christy
- Female
- Kilgore, TX
- United States
- Blog Posts (2)
- Discussions (26)
- Events
- Photos (13)
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Christy's Discussions
Recipes
17 Replies
Started this discussion. Last reply by Cheryl Biermann Mar 26, 2011.
Prayers
62 Replies
Started this discussion. Last reply by Linda Burke Nov 3, 2010.
Nephrectomy
11 Replies
Started this discussion. Last reply by Donna Kolp Sep 10, 2009.
Christy's Page
Latest Activity
Sharon Walker replied to Christy's discussion 'Vaccines'
Hi Christy, I have had 2 children with aHUS. Jaimee was never immunised but got it at 5 months old after a tummy bug which they found was caused by a type of ecoli. My oldest Kasey only ever received 1 immunisation at 6 weeks. She did not get aHUS…
Cheryl Biermann replied to Christy's discussion 'Recipes'
Jaime,
We like doing the popcorn thing too, Nathan likes his with a little pepper! Also, when doing potatoes if you have mpotassium issues you can soak the potatoes for a couple of hours and the potassium leaks out into the water.
Linda Burke replied to Christy's discussion 'Recipes'
Thanks, Jaime...never too late for good ideas and encouragement! ;D
Jaime Lauck replied to Christy's discussion 'Recipes'
Hello! I have sodium issues as well. As far as fries go - it's very easy to make your own. What I do is peel the potatoes, cut them, coat them with olive oil and a mrs dash seasoning he would like - I've always like…
Linda Burke replied to Christy's discussion 'Recipes'
Hey Christy,
I finally found a neat little place for kidney diet info, and a renal cookbook is listed as well:
http://www.kidneykids.org/resources_usefulsites_living.htm
Linda Burke replied to Christy's discussion 'Recipes'
I thought I'd post this 'weight gain' product that I really liked, it was pretty tasty and could porbably be incorporated into a dessert...tasted like melted vanilla ice cream to me!
SCANDISHAKE calorie-rich shake mix is designed to…
Linda Burke left a comment for Christy
Hi Christy,
I thought I'd send along this snippet about a calorie rich product that we used....the vanilla flavor tasted like melted ice cream to me!
SCANDISHAKE calorie-rich shake mix is designed to assist patients who need to gain or…
Linda Burke replied to Christy's discussion 'Prayers'
Cheryl Biermann just added this, so I thought I'd repost it here:
"Maria has just added the information to her profile that Jose has to have another surgery for a leak somewhere, she doesn't know where. Jose's numbers continue to…
Linda Burke replied to Christy's discussion 'Prayers'
Prayers for Alyssa's Transplant Surgery:
Loving Father, we entrust Alyssa to your care this day; guide with wisdom and skill the minds and hands of the medical people who minister in your Name, and grant that all effects of illness be…
Linda Burke replied to Christy's discussion 'Prayers'
We pray for children
who sneak popsicles before supper,
who erase holes in math workbooks,
who can never find their shoes.
And we pray, for those
who stare at photographers from behind barbed wire,
who can't bound down the street in a new pair…
Cheryl Biermann replied to Christy's discussion 'Prayers'
Thanks Linda, I'll show this to Joe, before we leave tomorrow; he's my cook on dialysis days, so I'm gonna miss him right off the bat!
Linda Burke replied to Christy's discussion 'Prayers'
Offering joyful prayers as Joe Biermann heads off to college on Wednesday - may he have a fun-filled year of learning and new experiences as he ventures out into the exciting and challenging world of young adulthood. May the Lord watch over him and…
Cheryl Biermann replied to Christy's discussion 'Prayers'
Rejoice! Joey that is great news! We are so excited for you and will thank God for answered prayers and the compassion of everyone who worked so hard to get the Solaris for Kelley!
Linda Burke replied to Christy's discussion 'Prayers'
Glad to hear that Soliris got approved - now THAT'S an answered prayer !!!!! Sending your family every best wish...looking forward to some news about Kelley's improved health status soon.
Profile Information
- Birthday
- November 25
- Do you have a friend or family member diagnosed with aHUS?
- Yes
Christy's Photos
Christy's Blog
MIA
Hey all--
Sorry we've been MIA from the board for a while. We were so busy with the holidays and I still feel like I'm behind! We spent our first full holiday season at home and are so blessed!!! Even though, Aiden did get the chicken pox the day before Thanksgiving (on my bday!). He was a trooper and we had a wonderful holiday season!
Linda had asked me to share a recent blog post with you guys and I wanted to put the link here for your reading pleasure ;) . I just restarted my… Continue
Sorry we've been MIA from the board for a while. We were so busy with the holidays and I still feel like I'm behind! We spent our first full holiday season at home and are so blessed!!! Even though, Aiden did get the chicken pox the day before Thanksgiving (on my bday!). He was a trooper and we had a wonderful holiday season!
Linda had asked me to share a recent blog post with you guys and I wanted to put the link here for your reading pleasure ;) . I just restarted my… Continue
Posted on January 21, 2010 at 2:30pm — 5 Comments
Aiden's Story
Hi all! Just wanted to share Aiden's story:
Aiden was born in June of 2007 healthy as could be--we were (and ARE) so blessed to have this beautiful baby boy in our lives...we prayed for this child...and now our little miracle was here. The day after receiving his 4 month vaccinations (November 2007)Aiden was clearly ill---I called and took him into his peds office just to be told it was a bad reaction to the VAX--no labs were drawn even though I was very concerned that he'd had… Continue
Aiden was born in June of 2007 healthy as could be--we were (and ARE) so blessed to have this beautiful baby boy in our lives...we prayed for this child...and now our little miracle was here. The day after receiving his 4 month vaccinations (November 2007)Aiden was clearly ill---I called and took him into his peds office just to be told it was a bad reaction to the VAX--no labs were drawn even though I was very concerned that he'd had… Continue
Posted on June 16, 2009 at 3:30pm — 4 Comments
Comment Wall (10 comments)
- At 8:57pm on November 28, 2010,
Linda Burke said…
- Hi Christy,
I thought I'd send along this snippet about a calorie rich product that we used....the vanilla flavor tasted like melted ice cream to me!
SCANDISHAKE calorie-rich shake mix is designed to assist patients who need to gain or maintain weight. Mixed with 8 ounces of whole milk, a single serving of SCANDISHAKE® contains approximately 600 calories!
http://www.allegromedical.com//dietary-supplements-c522/scandishake-chocolate-3-oz-p550049.html?engine=shopping&utm_source=shopping&utm_medium=feed&CS_003=9164468&CS_010=ff80808111238d9d011124e2a88b7cca&gdftrk=gdfV21244_a_7c477_a_7c2723_a_7c550049
- At 10:18pm on October 12, 2009,
Linda Burke said…
- Hi Christy,
I visited www.aidens cross.com just now - what a marvelous job you do with the site! Hope your fundraiser went well and that you had record sales. We're with you in prayer regarding your blog's info...hoping that Aiden is soon back to the business of just being his ole little Toot self.
- At 8:25pm on October 7, 2009,
Grace said…
- I hope Aiden feels better and the MRI goes well!
- At 4:00pm on August 8, 2009,
Linda Burke said…
- Hi Christy,
Happy to help! We got the idea to use the microlipids from the nutrionist at our children's hospital when Hunter was about 18 months old. It's a specialty product and one that had to be specially ordered up to our floor whenever Hunter was inpatient. Your best bet would be to call the hospital's pedi nutritionist, or ask for a visit when Aiden is in next. It's basically supersmall fat particles in a liquid suspension - at our hospital it's pretty much only used for infants trying to gain weight, so that's why our docs hadn't heard of it until I asked for a consult with a nutrionist. SAlso lots of calories in Scandishake which was delicious in vanilla flavor (tasted like melted ice cream) and is a powder that can be mixed into stuff - super sweet, tho. Flax seed oil is another additive, putting a small amount into other foods worked well. Let me know if you need more info- Skyler goes into the hospital next week for another Soliris infusion and I can ask then. Best, Linda
- At 8:06pm on July 5, 2009,
Linda Burke said…
- Hi Christy,
Just checking in to make sure that you and Aiden's been busy having a great 4th of July! Best, Linda
- At 11:40pm on June 25, 2009,
Linda Burke said…
- Hi Christy- Sending some positive thoughts your way... Linda
- At 4:44pm on June 25, 2009,
Phyllis Ann Talbot said… - Hey there Christy - just checking in to see how you guys are doing after the surgery? Hope all is well!
- At 11:30pm on June 16, 2009,
Linda Burke said…
- Hi Christy- Thanks for beginning a Forum on growth hormone issues. Since many aHUS kids have kidney functioning drop to that 30% threshold where growth issues begin, this is an important topic for many. I left a comment for Donna, whose son Jonathan has dealt with renal osteodystrophy and growth issues - perhaps her experience can shed some light on this topic. Best, Linda
- At 9:26pm on June 8, 2009,
Linda Burke said…
- Welcome to the new interactive website for the Foundation for Children with aHUS, Christy! My husband alerted me to your beautiful website some time ago- very nice. Interestingly, your website had an article mentioning Soliris... Our son Skyler was diagnosed with aHUS on March 26, 2009 and after 11 days of plasmapheresis to stabilize him, we began treatment with Soliris. At first it was 300mg every week for 4 weeks, then we switched to 600mg every other week. Labs were at or near normal soon after we started Soliris, so Skyler is back to his active little boy craziness - a blessing as his 5th birthday approaches in a couple of weeks.
Aiden is adorable! While surveying the photos of the beautiful children on this website, it struck me how positive they seem- there's such a beaming radiance that seems to glow from their sweet faces.
- At 8:51pm on June 8, 2009,
Christy said… - This is awesome! Great job and thanks for the heads up Heather and Phyllis! :) Looking forward to sharing Aiden's story...for more pics on Aiden and what we're up too check out www.aidenscross.com
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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