it has been a busy halfa month we have been dealing with 79/49 blood pressures one day then 128/70 the next arrgggghhh... we have now doubled her iron intake in a day because she isnt holding on to it.. we also had a good check up last time and things are mellow in her body.. i really am not sure what to do when its like this so we have been go go go... doing all kinds of fun things because i dont really know when the shoe is going to fall next.. we have also lost a dear friend of ours right… Continue
Added by lisa ann peterson on December 29, 2009 at 10:39pm —
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
Added by Jodi Kayler on December 28, 2009 at 4:33pm —
My name is Alyssa, and I was diagnosed with aHUS in January of this year. It has been a terrible year, I spent the first three months of it in and out of the hospital, and very very sick. Things are looking better right now (Knock on wood), I usually feel pretty good, other than always being so tired. I am waiting for a kidney transplant, but in the meantime I am going to Iowa for some further genetic testing. I have already done some genetic testing, and they came back with a… Continue
Added by Alyssa Deffenbaugh on December 27, 2009 at 12:50pm —
So, my beautiful child was watching Oprah one day and saw a show about "giving back" to your community and decided after what she has been thru, She would like to donate blood. She realizes she would not be alive today if people wouldnt have taken time out of their busy lives to do this simple yet life saving act. (Lydia is 10 yrs old)
Obviously this cant fly...but what could is the idea of doing something great with your life/time. We contacted the Red Cross and together decided a… Continue
Added by Lisa Goble on December 25, 2009 at 7:27pm —
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
Added by Kristina on December 24, 2009 at 1:09am —
As I look back, living with this disease has taught me many things, that life is no piece of cake. But, as Christmas approaches, I'm also faced with the great notion that it is because of my family and friends that I have been able to live to the tender age of 21 years old, and still fighting. Now, even though I'm not a child anymore, and am one of the oldest patients on this site, I have come to learn, that I have been able to help several kids cope not just with Atypical HUS, but with renal… Continue
Added by Jessica Olivia Frysz on December 23, 2009 at 12:02pm —
Me again - I have a question for those of you (think there's a few) that have had their kiddo's on PD for a while - Hyde started PD a little before he turned 2 and he's now 3 1/2 and I'm completely STRESSING about how/when to move him to 'big boy' bed? He does really well with his dialysis and hasn't tried to climb out of his crib yet but he's also looking a little cramped in there. I'm terrified of him being in the big bed and getting up and trying to walk out of the room (or even to the door)… Continue
Added by Phyllis Ann Talbot on December 20, 2009 at 1:52pm —
Did you know there is a condition which could possibly be brought on by high volumes of receiving blood products or steroids, Ivig, Pregnasone (sp?) that could lead to a condition called Chorea, (sounds like Korea) which is linked to Lupus...
This condition is called Chorea, it is the small jerking movements of the arms and legs which can get worse over time and become twisting movements, children often disguise their jerky movements by scratching or rubbing as if the whole thing was… Continue
Added by Cheryl Biermann on December 17, 2009 at 3:17pm —
So we had a little scare last week when Brody woke up pale one day. He had also been fussy and was a little puffy in the face. We got him in for labs right away and everything was still stable...whew. I was convinced the hus was acting up again. Especially since he has had a cold on and off for almost a month in a half now. I'm glad I was wrong. I guess I just figured if I expected the worst then I wouldn't be devastated when they told me the news. Still you can't be too overly cautious with… Continue
Added by Amy Swarbrick on December 17, 2009 at 3:47am —
Here's my latest carepage update - also has the info I sent out to eveyone about an amazing video that a friend of ours did for the hike we do in April that raises money for the foundation for Children with Atypical HUS (80%) and our local children's hospital (20%) - forward a link to this video out to whoever you can think of - trying to spread the word. We also tried to upload to You Tube but had some problems - so if anyones good at that - send me a note separately - we could use some help… Continue
Added by Phyllis Ann Talbot on December 16, 2009 at 9:09pm —
You'll note the addition of a new feature to our Home Page - the 'Doc to Doc' Registry, conceived of the necessity to integrate physicans' aHUS experiences with colleagial consultations that offer clarity and insight. Atypical HUS is such a quirky disorder, with a myriad of complexities that can baffle even the most determined doctors and researchers. Learning from each other's aHUS case histories, physicians draw from others' expertise and experiences via a telephone consult.
While they… Continue
Added by Linda Burke on December 14, 2009 at 11:24pm —
i had just got done blogging that her blood pressures have been hanging out in the 120/60 range and then i gave her, her evening pills and took her blood pressure and to my suprise her blood pressure was 86/57 and 89/49 i did what any good mom would do i got all stressed out and paged the doc.. i watched her closely through the night and took them again this morning and 100/50 without any meds our doc said hold the meds this morning.. i took again about an hour ago and they were 107/50 range no… Continue
Added by lisa ann peterson on December 14, 2009 at 5:59pm —
My friend has a child, 15, who began coming in her room at night with a terrible fear of dying-a so far very healthy child, select sports, good grades, these fears escalated within a few days to full-out panic attacks. She takes the child to the Dr., who agrees it probably is panic attacks, but is a young doc and wants to make sure this is all, so he sends her to a children's hospital who after an echo, diagnoses a heart condition, the one that goes undetected for years and suddenly the child… Continue
Added by Cheryl Biermann on December 14, 2009 at 2:02pm —
First off, I want to wish everyone a Blessed and Merry Christmas! This is by far my favorite time of year! I love to see the sparkle in Jonathan's eyes as we celebrate Christmas, the winter months, and the joy of family and health...With that said, we are in the final week of Home training for Hemodialysis!!! I have been accessing Jonathan now for almost 3 weeks, and he told me yesterday that I am doing such a wonderful job....It really makes my heart melt to hear him… Continue
Added by Donna Kolp on December 13, 2009 at 9:45pm —
I know that there aren't many patients on here that are in college. But, this stressful time of year is getting to everyone, everywhere I go, I have friends freaking out about finals-saying that they aren't going to pass. What happened to positive attitude? Several individuals that know me, have noticed that I have a lot of confidence this year than I ever did in the past. Well, I am doing better only for one thing, my study habits have changed immensely since my first year of college. I tend… Continue
Added by Jessica Olivia Frysz on December 13, 2009 at 1:37am —
Because the forums have been a little bit quiet lately, I thought I'd let everyone know there's new information on the dialysis forum about low H&H treatments. Thanks!
Added by Cheryl Biermann on December 2, 2009 at 7:28pm —
Tis the season for thoughfulness as well as holiday shopping, so why not combine the two and log on to iGive.com when searching or shopping online.
Every time you shop online, over 750 online retailers (like Sears, eBay, QVC, Expedia.com, BestBuy, FTD.com, Magazines.com, ToysRUs and Amazon) donate a percentage of the sale to your chosen cause, The Foundation for Children with Atypical HUS. Yes, you can still use coupons and search for the best deals - iGive.com costs nothing, yet it will… Continue
Added by Linda Burke on December 2, 2009 at 1:00am —