The Atypical HUS Foundation

Kimberly Lancaster
  • Female
  • Wilmington, NC
  • United States
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Kimberly Lancaster's Friends

  • Dustin G. Wiggins
  • Judy Warner
  • Cheryl Biermann
  • Linda Burke

Kimberly Lancaster's Discussions

Immunizations and infants with aHUS
2 Replies

Samuel's first flare up was right when he turned 4 months old and he has been in and out of the hospital ever since.  He has yet to get his immunizations and his pediatricians are hesitant because…Continue

Started this discussion. Last reply by Cheryl Biermann Dec 21, 2012.

 

Kimberly Lancaster's Page

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Kimberly Lancaster posted a status
"Getting a port in just a few week. We know down deep that the port is best in the long run, but the idea of another surgery! UGH!"
May 29, 2014
Kimberly Lancaster posted a photo

Sam

Samuel can not be stopped! He is growing like crazy and to look at him you would never know that he was ever so sick we were concerned he might not make it. All thanks to Soliris!
May 29, 2014
Kimberly Lancaster and Judy Warner are now friends
Jul 2, 2013
Cheryl Biermann replied to Kimberly Lancaster's discussion Immunizations and infants with aHUS
"This is what happened with us too."
Dec 21, 2012
Linda Burke replied to Kimberly Lancaster's discussion Immunizations and infants with aHUS
"Hi Kimberly, Yes, we were also truly concerned with our son Hunter, who presented at age 10 months and still had many immunizations ahead.  We chose to listen to our medical team and take their advice, which is important for all aHUS patients…"
Dec 21, 2012
Kimberly Lancaster commented on Kimberly Lancaster's blog post Samuel is Amazing
"Hopefully they won't have a problem with the IV, the central line was so much nicer for blood draws etc when we were in the hospital.  I will ask about a port tomorrow.  Thanks for the advice."
Dec 20, 2012
Cheryl Biermann commented on Kimberly Lancaster's blog post Samuel is Amazing
"if they can get IVs, I'd say he's got good viens, which is really necessary.  He is going to be okay:)"
Dec 20, 2012
Cheryl Biermann commented on Kimberly Lancaster's blog post Samuel is Amazing
"That is totally awesome!  kiddos used to have to wait till they were a certains size.  Nathan's veins always stunk, never could get IVs, barely ever got any blood venous either.  Maybe the technology has made the tubing smaller…"
Dec 20, 2012
Dustin G. Wiggins commented on Kimberly Lancaster's blog post Samuel is Amazing
"Our daughter had a port put in at 7 months.  It is right under the skin and it is great.  No more IV sticks.  They also use it to draw her blood for labs.  We have some numbing cream that we put on before infusions and…"
Dec 20, 2012
Kimberly Lancaster posted a discussion

Immunizations and infants with aHUS

Samuel's first flare up was right when he turned 4 months old and he has been in and out of the hospital ever since.  He has yet to get his immunizations and his pediatricians are hesitant because they don't know enough about the disease.  I am hoping that his doctors in Chapel Hill will be more confident with answering this question tomorrow when we go for his 3rd Soliris treatment.  I am concerned because his immune system is already weak.  Anybody been in a similiar situation?See More
Dec 20, 2012
Kimberly Lancaster is now friends with Cheryl Biermann and Dustin G. Wiggins
Dec 20, 2012
Kimberly Lancaster commented on Kimberly Lancaster's blog post Samuel is Amazing
"Thanks Cheryl for the information.  He currently has a PD catheter and while we have it secured, he still is constantly grabbing at it during diaper changes, etc.  Plus he really use to love his Johnny Jump Up and now can't play in it…"
Dec 20, 2012
Cheryl Biermann commented on Kimberly Lancaster's blog post Samuel is Amazing
"ah, yes, the wonderful groin cath.  Samuel's second bout sounds exactly like one of Nathan's...are they doing manual exchanges?  Or are you talking abouth the urin catheter?  if you are talking about the acess to give meds…"
Dec 20, 2012
Kimberly Lancaster shared a profile on Facebook
Dec 20, 2012
Kimberly Lancaster left a comment for Dustin G. Wiggins
"It does sound like the soliris may have helped your daughter's flare up; so glad she didn't have to be hospitalized.  We have spent more time in the hospital than not since Samuel's first flare up in early November.  I hope…"
Dec 20, 2012
Kimberly Lancaster commented on Kimberly Lancaster's blog post Samuel is Amazing
"We have not discussed his care plan yet, but will on Friday.  I never actually thought about him recieving the Soliris through the catheter, but as much as I hate the IV stick, the catheter port is just so scary to us because he is always…"
Dec 20, 2012

Profile Information

Birthday
January 7
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 membership request involves business interests as I seek additional aHUS information for business applications.
No
My child ( or myself as a patient) is best described as:
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Kimberly Lancaster's Blog

Samuel is Amazing

I will never look at Thanksgiving the same ever again.  Samuel had his 2nd flare up on Tuesday, 11/20 and ended up in emergency surgery on Thanksgiving day for a PD catheter.  This 2nd flare up was way worse than the 1st.  By the Monday after Thanksgiving, he was still not able to keep any food down and looked near death.  By the following Wednesday, we were finally able to get him to keep a couple ounces of breastmilk down.  He was not even getting fluids because his blood pressure was at…

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Posted on December 19, 2012 at 10:44am — 8 Comments

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At 5:11pm on December 19, 2012, Dustin G. Wiggins said…

I am glad to hear that the soliris is working good for your little one.  Our daughter's second flare up started two weeks ago.  She had a fever and a small cold that seemed to start it off.  We had her normal soliris treatment two days after the fever but the ahus continued.  The one thing I can say is that the progression was much slower than the first time, hopefully because of the soliris in her blood, and we didn't end up being admitted to the hospital.  Her platelets also rebounded very rapidly.  We did have to have blood work done every day for ten days to keep a close check on blood chemistry and kidney function.  The doctor has decided to move up her next treatment by a few days to increase the concentration of soliris in her blood.  Good luck with Samuel and keep us updated.  I wish you all a Merry Christmas.

At 11:09am on December 4, 2012, Linda Burke said…

Hi Kimberly,

I'm sorry to hear that your 5 month old son has just been diagnosed with aHUS, but the hospital at UNC Chapel Hill has an excellent reputation.  We have informational materials about atypical HUS online at http://atypicalhus.ning.com/page/ahus-brochure-3 with a 1 page flyer helpful for extended family, nursing staff, and friends. This summary of educational materials includes a detailed overview of this rare disease, our 'aHUS Bootcamp' which should prove helpful in understanding the medical terms (also online at http://atypicalhus.ning.com/page/a-parents-perspective-ahus).
For pedi nephrologist Dr. Farris, our Home Page has a 'Doc to Doc Directory' where physicians can connect with other doctors experienced in treating aHUS patients - so printing out that directory for professional medical consults (free, aHUS docs worldwide volunteer their help to colleagues) might be helpful to for you to hand that list to Dr. Farris or other medical professionals in your son's care team. If Dr. Farris has recommended the IV drug Soliris aka eculizumab (the only FDA approved treatment for aHUS), we have information available at http://atypicalhus.ning.com/forum/topics/soliris-1 and you can call 1-888-SOLIRIS for further information.
Atypical HUS is a complex disease with a variety of manifestations, so perhaps you might also benefit from reviewing how aHUS can affect multiple organs in the body and not just the kidneys. (See http://atypicalhus.ning.com/forum/topics/ahus-complications-potential-impact-for-multiple-organs). I hope these resources provide valuable information to you, and that our website is a source of support for you and your family. Feel free to post and to ask questions as you wish/need.- our aHUS community seeks to inform and suopport.

 
 
 

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