Kristina Female Junction City, KS United States: Share on Facebook Share Twitter

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Melissa Hearn commented on Kristina's blog post 'Question on being sick with the flu & a virus'

The rotavirus vaccine appears to have been the trigger for Bryan. I'm SO glad to hear that you're going in for labs. Always trust your instincts. Good luck!

Nov 11, 2010

Heather Still commented on Kristina's blog post 'Question on being sick with the flu & a virus'

Sounds like you've gotten your fair share of advice - I strongly agree with them all!!!!! We do labs proactively whenever I think something may be out of sorts with Ryan. Good luck.

Nov 11, 2010

Kerri Grey commented on Kristina's blog post 'Question on being sick with the flu & a virus'

Hi Kristina Im so glad to hear you have contacted your nephrology team!!! Our little kiddies need to be treated with so much caution when it comes to getting sick as the slightest little thing can trigger things off. Always remember that you know…

Nov 11, 2010

Cheryl Biermann commented on Kristina's blog post 'Question on being sick with the flu & a virus'

From here on out, Kristina, you need to develop a close relationship with the kidney doctor at your hospital. If it is an adult hospital, please have them call the docs on the doc to doc registry so they can learn the difference between regular HUS…

Nov 11, 2010

Kristina commented on Kristina's blog post 'Question on being sick with the flu & a virus'

I called the Childrens Hospital and just learned that the kidney Dr he saw earlier this year has left. The nurse called me back and the new Dr is going to order labs to be done here at our local hospital and made an appointment there (a couple of…

Nov 11, 2010

Cheryl Biermann commented on Kristina's blog post 'Question on being sick with the flu & a virus'

Get his labs! If it is rotovirus, well this caused nathan to have LONG stays in the hospital. Do not go to the regular pediatrician when Matt is sick-call your nephrology team and head there for labs. Our pediatricians told us, okay, we'll see…

Nov 11, 2010

Cheryl Biermann commented on Kristina's blog post 'Question on being sick with the flu & a virus'

Second thought, but with a rash, even if it is not where it is supposed to be, have them do a strep test. Nathan had strep and his rash would move around from his belly to his chest to his bottom, but it was my sign to have a strep done. He had…

Nov 11, 2010

Jodi Kayler commented on Kristina's blog post 'Question on being sick with the flu & a virus'

Hi Kristina, I read your post and immediately became concerned. Rotavirus is a HUGE trigger for and aHUS relapse. One of my son's worst relapses was triggered by this bug. Also, the extreme diarrea caused by rotavirus is a big stress on normal…

Nov 11, 2010

Question on being sick with the flu & a virus

Matt has been getting sick on & off since his 1 year old shot in Aug. He had a high fever shortly thereafter & once that broke a rash appeared. The rash has now got worse & 1 of the Dr at his Dr office said they were hives from food allergies. Another Dr in the same office just saw Matt because he keeps getting sick throwing up, fever and dirreaha on & off and I know that there is something wrong with him. She said its not food allergies and its the rotavirus and he should be…See More

Blog post by Kristina Nov 10, 2010

8 Comments

Cheryl Biermann commented on Kristina's photo

Cute outfit!

Halloween 2010

Oct 29, 2010

Kristina updated their profile Oct 29, 2010

Kristina updated their profile photo Oct 29, 2010

Photos posted by Kristina Oct 29, 2010

Kristina commented on Kristina's blog post 'update on Matt'

Cheryl the rash ended up being Hives and the Dr believes it to be food allergies. Now trying to figure out what he maybe allergic to is the question. That is nothing compared to the little guy always seems to be getting sick. Just usually the flu…

Oct 29, 2010

Linda Burke commented on Kristina's blog post 'update on Matt'

Hi Kristina, A big Happy Birthday to Matt...what a huge milestone to turn one, glad it was a wonderful celebration. A positive attitude will take you far on the twisting journey of aHUS, it's great to read that you're looking on the birght…

Oct 9, 2010

Cheryl Biermann commented on Kristina's blog post 'update on Matt'

Have they done a swab of his rash, the possibilities of rash with fever are many. It could be strep-Nathan had a rash with fever, I knew it was strep, but because the rash wasn't in the "typical" place for strep the doctors only did…

Oct 8, 2010

Profile Information

Birthday: July 20

Do you have a friend or family member diagnosed with aHUS?: Yes

Are you medical personnel or an aHUS researcher with an interest in aHUS issues?: No

My child ( or myself as a patient) is best described as:: Factor I (CFI)

I came across this site when I was doing some research of my own about the A Typical HUS. My son Matthew will be 3months Nov. 27. He was a healthy vibrant little guy with some acid reflux problems, up until the morning of Nov. 4. I went to wake him up and found him very pale, limp and struggling to just breath barely. That day became a blur it all happened so fast. Once stable here at our Hospital he was flown to a Childrens Hospital and stayed in PICU for 4 days. Upon our two week stay in the hospital, tons of test later, 2 blood tranfussions and some platelets along with a team of Doctors I was told he has HUS on the discharge papers. They kept telling me he had A Typical HUS when they would do their rounds and speak to me about his kidney counts. I was told for him to get some blood work done 2 days after the release and a follow up appointment 2 weeks later. Ive been strong through this whole thing, though it just started. I finially broke down tonight and had my moment. He has an appointment to see his regular Dr. tomorrow for a full check up since being released from the hospital. I have tons of questions and lots of worries. I have an 8 year old daughter who has been so good to her little brother. She wants to always touch him and kiss him. My husband Rob was able to see our little Matt being born, his career in the Army took him overseas a couple weeks after that. I want to say Thank you for creating this site. It has helped me to learn alot about this disease. The more I feel prepared the better I can stay strong for the kids. I will be sure to update what I find out tomorrow as Im really curious to know more about his condition and where we go from here.

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Question on being sick with the flu & a virus

Posted on November 10, 2010 at 7:21am — 8 Comments

update on Matt

Sitting here thinking I should write an update for Matthew. He turned the wonderful age of 1 on Aug. 27 and was home with a fever and rash. Way to party, and he did with his big Smile and alittle frosting on the side:) He has been doing pretty good since earlier this year. We always seem to find the bug or virus at least once a month, but nothing the little guy hasnt been able to get rid of. Recently within the last month, we still cant seem to rid that icky rash as it seems to come and go…

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Posted on October 7, 2010 at 9:32pm — 3 Comments

update on Matt the good and the bad

Well its been awhile and I feel bad everytime I write on here its always something bad or with questions I have. I wanted to start off by saying Matt will be 6 months on the 27th of this month. He is growing taller and getting chunck rolls on his arms and legs. Though I believe this is more to holding fluids than baby fat. He is talking and making laughing noises and rolls all over the place. He is always smiling and never (except when he doesnt feel good) fussy. Such a good sleeper thru out…

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Posted on February 13, 2010 at 3:53pm — 4 Comments

still not alot of answers :(

Sorry its taken so long to let everyone know whats been going on. I still dont have clear answers from the childrens hospital, but Matt's Dr here seems to be on top of things with him or at least he is doing something to watch him closely. Matt is doing somewhat better and improving on things that were still not yet back to normal when discharged from the hospital. Last week his hemoglobins were very low, and Matt has caught a cold/virus this past weekend. He seems to be doing alittle better… Continue

Posted on December 24, 2009 at 1:09am — 5 Comments

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At 1:20pm on December 10, 2009, Linda Burke said…: Hi Kristina,
Just checking in to say hello and to find out how Matt is doing....it would be great to hear an update when you have a chance. Best wishes, Linda Burke

At 10:00am on November 24, 2009, Svetlana Finley said…: HI, Kristina.
I will be praying for your appointment today and will be waiting for your update. Just post any questions you have.

At 5:22pm on November 20, 2009, Cheryl Biermann said…: Welcome to our site Kristina, We hope this site offers you some comfort as you deal with ths disease. Feel free to join the discussions, we have a great group here and everyone is very willing to help with whatever we can!

At 1:59pm on November 20, 2009, Linda Burke said…: Hi Kristina,
Welcome to the interactive website of The Foundation for Children with Atypical HUS, where we join together to share information, inspiration, and insight about aHUS. It you need some basics about the disorder, you can check out the "About aHUS" tabs at the top of this page, but much more detailed info is at www.atypicalhus.50megs.com (link is on the Home Page). This site is fully searchable, and the search bar is right above the cute colored "bubble faces" at the top of this page. We welcome your participation and look forward to learning more about your story.

At 1:53pm on November 20, 2009, Svetlana Finley said…: Hi, Kristina, Welcome here!!!
U can post any questions u have, we are here for each other.

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Welcome to
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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.

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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.

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