The Foundation for Children with Atypical HUS

Phyllis Ann Talbot
  • Female
  • Cumming, GA
  • United States
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Dialysis
10 Replies

Started this discussion. Last reply by Cheryl Christine Pallme Biermann Feb 3.

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Linda Burke left a comment for Phyllis Ann Talbot
11 hours ago
Grace commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
I'm glad Hyde is feeling well enough not to give you a minute's peace (though I hope you get some of that, too.) I hope his blood pressure problems resolve soon!
yesterday
Bill Biermann commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
Sorry I can't help with the BPs looks like Hyde is on the same things Nathan has always been on! Good luck with Mr. Active, capital A!
on Monday
Amy Swarbrick commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
Wow, glad to see he has bounced back so quickly...literally:) This age is so fun! Hope they can figure out his meds soon, that's pretty frustrating.
on Saturday
Jodi Kayler commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
Go Hyde! Raise the roof little buddy! LOL =) I will always remember when Coen was 3 and it terrified as he would continuously launch off the sofas like superman and slide down the stairs full speed on his tummy with a external hickman line. Seriousl…
on Saturday
Phyllis Ann Talbot commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
Thanks Heather - that's actually at least new names - I had thought we were stuck with the Cozaar and Captopril plus what we are on and that was about it before Minoxidil and/or Clonidine - so hairy or zombie - thanks! My sister REALLY wanted to go…
on Saturday
Heather Still commented on Phyllis Ann Talbot's blog post 'What a week - and BP meds help'
Not sure of a real answer for this because Ryan hasn't had a nephrectomy. But his bp has always been an issue. He is currently on Coreg and Dynacirc and compounded Lisinopril. And wears a Catapres patch for bp too. Not sure if any of those help you,…
on Saturday
Phyllis Ann Talbot added 2 blog posts
on Friday
Phyllis Ann Talbot commented on Amy Swarbrick's blog post 'Holding Strong'
That's such great news Amy!! (and I'm glad you broke my 'streak' was feeling like a page hog ;-).
on Friday
Amy Swarbrick commented on Phyllis Ann Talbot's blog post 'WE'RE HOME'
Yay, I am so happy you guys got to go home. Isn't it magical to sleep in your own bed! Hope things with Hyde get better now that he is on his own turf.
on Friday
Linda Burke commented on Phyllis Ann Talbot's blog post 'WE'RE HOME'
Whoo Hooooo- so happy that you're all back home! It truly seems that everyone heals so much faster in their own little nest. Skyler's BPs flutuated for about 4 weeks or so after beginning Soliris, which meant frequent BP med adjustments - almost as…
on Friday
Svetlana Finley commented on Phyllis Ann Talbot's blog post 'WE'RE HOME'
Awesome!!! Welcome home!! Just want to let u know for Anna Benadryl doesn't work very well, she uses Hidroxizin (i am not sure of spelling, but it is prescription)other name for it Atarax.
on Thursday
Heather Still commented on Phyllis Ann Talbot's blog post 'WE'RE HOME'
Welcome home!!!!!
on Thursday
Amy Swarbrick commented on Phyllis Ann Talbot's blog post 'Not today :-('
I hope, hope, hope you guys get to come home soon. Hyde is such a trooper and Ruth too. Like Linda said it's hard on the siblings too but it sounds like Ruth is being well loved. Give Hyde a big hug for us:)
March 4
Linda Burke commented on Phyllis Ann Talbot's blog post 'Not today :-('
Give Ruth a big hug for us, such exciting news about her loose tooth! It's 'hard' for the other siblings to have so much attention directed to the aHUS child- Grandma's TLC with Ruth is a true blessing, especially with such a changed home situation…
March 3
Melissa Hearn commented on Phyllis Ann Talbot's blog post 'Not today :-('
Sorry to hear you're not going home today Phyllis. That darned BP always gets in the way of happy homecomings!!! Also sorry to hear about the allergic reaction! Do you guys need anything?!? I can be there in 20 minutes just say the word! Sorry I di…
March 3

Profile Information

Birthday
September 6
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or a researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Factor H (CFH) Protein(Gene)
My name is Phyllis Talbot and I am the mother of an adorable 2 1/2 year old little boy named Hyde who is struggling with a very rare disease called Atypical HUS. This journey began for us in January of 2008 and Hyde is currently on peritoneal dialysis every night at home for 10 hours. He is considered at end stage renal disease and his kidneys are permanently damaged. We have suffered with severe anemia, high blood pressure, low platelets, as well as bouts of respiratory failure and a seizure over the last 18 months. Hyde is currently stable and actually feeling good and acting like a normal 2 1/2 year-old.

Here's a link to an article the local paper did on Hyde:
http://www.forsythnews.com/news/archive/2450/

Also - here's a link to the webpage we set up:
www.hike4hyde.com

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Phyllis Ann Talbot

What a week - and BP meds help

OK - here's the latest carepage update - and hopefully the last one until our next clinic - I do have a question for all of you out there that have had nephrectomy's - one thing I had not been told prior to Hyde's nephrectomy was that a couple of his meds would no longer work since his kidney's were removed (would have been nice to know before - but oh well). They have taken him off his Cozaar and Captopril. Right now he's on Norvasc (amlodipine) and Atenolol (this as
… Continue

Posted on March 5, 2010 at 2:48pm — 6 Comments

Phyllis Ann Talbot

WE'RE HOME


Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today -


… Continue

Posted on March 4, 2010 at 4:09pm — 4 Comments

Phyllis Ann Talbot

Not today :-(

OK - sorry to fill up all the blog space here - just now that Heather and a few others were having problems seeing the carepages - hopefully will be home in a day or two and I'll stop filling this space up!!


Here's the post below:


Oh well - guess we got a little overexcited - we really had thought Hyde might be going home today - but no


… Continue

Posted on March 3, 2010 at 12:12pm — 3 Comments

Phyllis Ann Talbot

Still doing good

Still doing good

Hey everyone - just to let you know - Hyde's still doing really well - he stayed with Bill last night and did well - only my tough little kid would rather deal with the pain of having two organs taken out than to take any medicine he's not used to :-(. He did take some of the 'good' tylenol yesterday midday - and took a long nap and then was able to get up and move around a little


… Continue

Posted on March 3, 2010 at 9:23am —

Phyllis Ann Talbot

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned s…

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - but basically so far so good! ;-)



Our night and PD!!


Posted 2 minutes ago

Hey there everybody - I'm sure you are all SICK of hearing from us by


… Continue

Posted on March 2, 2010 at 9:24am — 4 Comments

Comment Wall (19 comments)

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At 9:18pm on March 9, 2010, Linda Burke said…
The two big questions....how're Hyde's BP doing and what's the big news on the Tooth Fairy front for Ruthie? 8-D
At 1:23pm on March 1, 2010, Jodi Kayler said…
Wishing and praying for an uneventful surgery today. Hang tough little Hyde. XOXO, The Kaylers
At 7:53pm on February 18, 2010, Jodi Kayler said…
Haha. No tigers this last trip. But I have some shameless photos with Elvis--and I saw Carrot Top. =)
At 8:17am on February 16, 2010, Joy Lewis said…
Hi Phyllis! PA's are similar to NP's in their scope of practice but NP's can have their own patient load as a primary care provider, and can write prescriptions on their own. The education requirements are different too--when I graduate in 2011, I'll be a practicing NP. My clinicals are built into the program, whereas PA's have more of a medical model with a residency. (There's some variation by state, too.) It's exciting stuff!
At 8:11am on February 12, 2010, Kerri Grey said…
Thanks Phyllis, will keep you all updated.... we think hes pretty cute but we are biased. lol
At 12:12am on January 9, 2010, lisa ann peterson said…
i love the new photos....
At 10:08am on December 16, 2009, Christy White said…
Hi Phyllis,

Can you tell me what the video file extension is? The site supports the following file size and type: Files must be 100MB or smaller. We support .mov, .mp4, .mpg, .avi, .3gp, .3g2 and .wmv file formats.

If that's not it, let me know.
At 3:05pm on October 4, 2009, Vicki Ravely said…
Yes, Mary is our cousin's good friend (Geo and Wanda Baker in Texas or Oregon, or where ever they are posted). I have seen your son's photo on this site. Wanda sent your aunt's email to me for the care site. I was able to type in HUS and found your son immediately. We usually go to the Atypical HUS site. Our Paul is 6 (Hamilton) and on Soliris now. How is Tyler? Vicki
At 1:08pm on September 25, 2009, Sara Palmer said…
Hi thank you for getting in touch, it was lovely of you. Yes I would describe Jack as a pure inspiration, he lived every second and throughout he smiled and never complained - wish I had an ounce of that strength! Very old English names, Jack has been a very popular name over the years here and Maisie my Mum heard it being shouted out in a supermarket when I was pregnant and I love it too.
At 1:34pm on September 7, 2009, Paula Blanchard Lamigo said…
We live on base in Quantico, VA so we're up in Northern VA. I'm not that familiar with MD, I've been to a few places there~but I don't know where all of the cities are located yet.

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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 2010 genetic testing and treatment.

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...

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