Coen has a bug--so spending the night in the hospital for hydration. Darn kidneys just can't quite keep up when he is sick.
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Jodi Kayler
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- Otis Orchards, WA
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Jodi Kayler's Discussions
aHUS Business Cards and Flyer
4 Replies
Started this discussion. Last reply by Sharon Madrid Oct 9, 2010.
Jodi Kayler's Page
Latest Activity
Jodi Kayler commented on Frank Reyniers's blog post 'Remission and Soliris?'
Hi, my son is Coen. More of his story is available, but here's the short version: Coen had ongoing AHUS from when he was 11mos to 6 years old. There is no known defect. Although, he had some severe relapses during that time, there were periods…
Jodi Kayler commented on Cheryl Biermann's blog post 'No Title'
There was a time after Coen started Soliris that he peed bright red blood. It never turned into meaning anything. Hopefully, that is the case here. We'll miss you this weekend!
Jodi Kayler commented on Bill Biermann's event '2011 Parent Conference'
Below is a complete conference agenda:
October 7
7:30 Evening Welcome Dinner for Parents and Researchers from University of Iowa and Alexion (Dinner at restaurant named “One Twenty Six”)
October…
2011 Parent Conference at University of Iowa
October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th Early Arrival 7:00pm Meet and Greet Dinner sponsored by the FoundationSaturday, Oct 8th The Confererence at the University of Iowa: (All Meals Provided)Sunday, Oct 9th …See More
Event updated by Jodi Kayler
I'm a huge slacker but finally got my airfare booked for the conference. See everyone there!
Status posted by Jodi Kayler
2011 Parent Conference at University of Iowa
October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th Early Arrival 7:00pm Meet and Greet Dinner sponsored by the FoundationSaturday, Oct 8th The Confererence at the University of Iowa: (All Meals Provided)Sunday, Oct 9th …See More
Jodi Kayler is attending Bill Biermann's event
Jodi Kayler commented on Bill Biermann's blog post 'Cheryl and Nathan's big day'
All I can say is "WOW!".
Jodi Kayler left a comment for Danna Vaughn
Welcome Danna!
Jodi Kayler replied to Janet Punty's discussion 'Getting help from US experts to out of country (Japan) hospitals'
Hi Janet, I hope she is doing better. I just wanted to make a note that It is common for the hemoglobin to not respond as quickly as the platelets. Even after the disease is stopped by the Soliris, the hemoglobin can still continue to decrease…
Linda Burke commented on Jodi Kayler's photo
Talk about grins that shout, 'WhooooHooooooooo"...... Glad to see Coen having the time of his life, getting right down into it! (lieterally) What- no Jodi joining in? Bet you're holding out for a spa day for…
Cheryl Biermann commented on Jodi Kayler's photo
Wow, playing in the muck and mud, what a concept! Jodi, your kid tickles my funny bone-he's always so enthusiastic in all his pics.
Profile Information
- Birthday
- August 22
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Jodi Kayler's Photos
Jodi Kayler's Blog
No news is good news.
So, I haven’t updated for a long time—basically because everything has been rock solid. Coen has been on Soliris for nearly 2.5 years. I can’t believe it has been that long already. The disease continues to be in remission and he is thriving. Kidney function has not improved or declined during that time. Creatinine still sits at 1.6 consistently. We just changed insurance company’s for the 4th time since the start of Soliris and luckily, once again it got approved without a…
ContinuePosted on July 13, 2011 at 12:25pm — 4 Comments
Christmas is coming.
Coen, almost 8, is very excited for Christmas. He is counting down! We are busy planning for our annual Christmas Eve party--which entails lots of food, tons of people, free-flowing wine, rockband on wii--and always a very special visit from Santa. As I think about it, it is funny how traditions come about.
It was December 15, 7 years ago, when Coen was rushed to the hospital and diagnosed with aHUS. I always remember the date because I remember being totally ignorant and…
ContinuePosted on December 12, 2010 at 12:12am — 3 Comments
Update
Hi everyone! November and December have turned out to be quite crazy work months so I've been bad about logging on as of late. Finally, I have a week off and am excited having a chance to reconnect and see how everyone on the site has been. I just wanted to give a little update on Coen since I've been so quiet.
Since starting Soliris 10mos ago, Coen has remained in complete remission despite several colds, a flu bug, and mild pneumonia. His Haptoglobin and LDH has been perfectly… Continue
Since starting Soliris 10mos ago, Coen has remained in complete remission despite several colds, a flu bug, and mild pneumonia. His Haptoglobin and LDH has been perfectly… Continue
Posted on December 28, 2009 at 4:33pm — 7 Comments
Coen Update
Sorry guys. I leave you a vague update and then never give any details. It has turned out that for some reason, at the hospital, I can't access this website--so I had to wait until I could run home for a few. Here's the whole story:
Thursday Coen said his throat hurt which unfortunately is code for "I don't want to go to school tomorrow". We didn't think much of it since Friday he woke up and didn't say a word. That same day, we finally found a place that has a H1N1 vaccine so we… Continue
Thursday Coen said his throat hurt which unfortunately is code for "I don't want to go to school tomorrow". We didn't think much of it since Friday he woke up and didn't say a word. That same day, we finally found a place that has a H1N1 vaccine so we… Continue
Posted on November 16, 2009 at 10:56pm — 13 Comments
Calling for Notecard Inspiration!
Hi all,
We are getting ready to start designing super cool notecard/generic gift packs that will be sold as a fundraiser for the foundation. The cards will be trendy and cool so that anyone might want to buy them but also have elements that reflect the spirit of the kids that fight this disease. That's where I need your help. I need inspiration!
A couple people have sent me drawings that their kids have drawn, which is great and I'll happily take more! Other things that could… Continue
We are getting ready to start designing super cool notecard/generic gift packs that will be sold as a fundraiser for the foundation. The cards will be trendy and cool so that anyone might want to buy them but also have elements that reflect the spirit of the kids that fight this disease. That's where I need your help. I need inspiration!
A couple people have sent me drawings that their kids have drawn, which is great and I'll happily take more! Other things that could… Continue
Posted on October 28, 2009 at 10:11am — 17 Comments
Comment Wall (37 comments)
- At 10:50pm on December 10, 2010,
Linda Burke said…
Love that you and Kyle Kayler are listed as 'Friends' 5 hours ago....tee hee!
- At 8:01am on August 10, 2010,
MARCIA AGUALLO BAKER said… - The doctors have kept Soliris an option from the beginning and started the process of getting it approved. They did mention the possibility of starting it now but I haven't heard anything else about the outcome of that. I feel if he would have been on it to begin with, we would not have the heart problem now. Will keep posted. Thanks again for everything.
- At 10:31pm on August 1, 2010,
Linda Burke said…
- Thanks so much for adding the aHUS flyer to the Forum containing the aHUS Business Cards - you did a great job creating eye-catching graphics for a fact-filled sheet of aHUS basic info!
- At 4:13pm on July 13, 2010,
lisa ann peterson said… - hey miss.. how r u.. so coen starts his monitor today.. chloe did really good so iam sure coen will do the same.. hope all is well with you guys
- At 2:02pm on May 16, 2010,
maria vicenta carratala rios said… - Hi Jodie
Thanks to answer me and send me the e mail. My son has had with high blood preassure during three years and four different drugs to low it. I think that the cause of ahus is the damage in vascular endotelio, because my son is without kidneys since 2006 and this years has controled his blood preasure, I Think that is some consequence of this, I am study this, because I take it his blood prerasure at home with the machine and write the levels since he was ahus with kidneys and without kidneys during all this years. He is fine and his heart too, I think that when he will receive a new kidney we bill be so happy and feel a lot. When doctors taken off the kidneys tell me. Do not worry because this summer he wil be one, after take him the complement system study and told me we sorry but your child has mutations in factor H and he will not can a kidney because he will loose it. In September it wii be four years in hemodyalisis without kidneys and three times per week during four hours he is fine , ha has a different life but he is with me and my family.
- At 10:07pm on April 18, 2010,
Linda Burke said…
- While you're in Florida try to hit the Sarasota Jungle Adventure, where Skyler held the alligator and fed the flamigos - it was a interesting and relaxing venue. If only they played some vintage hard rock, it would have been perfect! LOL
- At 10:37pm on March 22, 2010,
Cheryl Biermann said…
- Oh, Jodi I am so sorry about your dog, I know we will be facing something similiar again as our bunnies are close to nine years old now. It was so hard when our dog died, I think Nathan will take it really hard when the bunnies go. Hope Coen copes well, you never know with these guys as some of Nathan's friends he's made in the hospital have also died. They are so mature in some ways. God bless you.
- At 7:28pm on March 20, 2010,
Phyllis Ann Talbot said… - Oh Jodi I'm SOOO sorry!!! We went through this with our Buster last spring and I'm telling you - it was AWFUL with Ruth - she was so pitiful - ughhhh - Hyde didn't really get it but Ruth was almost 5 and whew. Took us a year but we just got another one last weekend that Ruth has 'adopted'.
- At 8:17am on March 17, 2010,
maria vicenta carratala rios said…
- Hello Jodi
I am a member fro this page and I trying contact with soliris´s parents use , because I have a child who can in few this medicine for ahus, I do not know the secondary effects and any consequence, .I do not expert persons in a forum and It is new for me but Linda is help me since last months
- At 8:37pm on March 11, 2010,
Grace said…
- I'm so glad to hear that Coen continues to do so well and that his BUN/creatinine have fallen a little. As you say, every little bit counts!
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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