Kerri Grey Female Victoria Australia: Share; Share on Twitter; Share on Facebook

Kerri Grey's Apps

Kerri Grey's Friends

View All

Kerri Grey's Page

Latest Activity

Linda Burke commented on Kerri Grey's blog post 'aHUS and joint issues'

Oh my, Kerri - I'm sorry that this new concern has popped up on your radar. The first thing I thought of when I read your post was, "Thank goodness she has Kerri for a mother!" I feel sure that you will leave no stone unturned in regard to your daug…

3 hours ago

Kerri Grey added a blog post

aHUS and joint issues

4 hours ago

Kerri Grey commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'

Thank you so much to Linda and the Biermanns for advocating on behalf of us all!!!

yesterday

Kerri Grey commented on Kamal D Shah's blog post 'DNA could not extracted from blood samples'

Hi Kamal, you must be feeling so disappointed right now, I know that i would love to have an answer as to what genetic mutation my son has. As far as i know i dont think knowing what mutation you have really makes too much of a difference in regards…

on Tuesday

Jessica Olivia Frysz commented on Kerri Grey's blog post 'Meds for high potassium'

Exactly what my mom said : Kaxalate has been the drug of choice in my treatment, while being on dialysis. This drug comes in both liquid and powder form. However, the liquid form is quite revolting in taste and smell, which is why I went for the pow…

August 19

Kerri Grey commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'

As the others have said if he gets the solaris and it helps to repair the tissue damage in Bens kidneys then hopefully the fluid problem wont be as much of an issue which may also take some of the pressure off the heart as well. I pray that your fam…

August 14

Cheryl Biermann commented on Kerri Grey's blog post 'Meds for high potassium'

Not yet, but I plan to. Bill had planned to take Joe to college for his freshman year, but his wound still isn't healing, so he had a follow up with the wound specialist that day, but rescheduled for Thursday so he could take Joe. Anyway, he woke up…

August 12

Colette Ann Frysz commented on Kerri Grey's blog post 'Meds for high potassium'

Yes, my daughter has used kaxalate for years. We use the powder form because it doesn't taste or smell bad. My daughter and I mix it with just enough water to get it down orally. The dose is based on weight.

August 11

Kerri Grey commented on Kerri Grey's blog post 'Meds for high potassium'

Cheryl, did you ask your docs about the resonium that we use??? Since Ash started on Solaris his "eating" has improved. He is showing alot more interest in food but still doesnt reaaly eat too much - he licks peanut butter off sandwhiches sucks on b…

August 11

Cheryl Biermann commented on Kerri Grey's blog post 'Meds for high potassium'

Wow, Kaexalate through the tube? I don't know why we didn't think of it! By the way, Kerri, Nathan's last potassium was 4.5, finally, so now we'll worry he leak it all out again! He gets a 2K bath during dialysis but he used to get a 3K...if we drop…

August 11

Kerri Grey commented on Kerri Grey's blog post 'Meds for high potassium'

Thanks Wendy...You are right it is so hard on them!!! Im scared to death that his potassium levels are going to lead us back to dialysis...

August 10

Wendy Flinn commented on Kerri Grey's blog post 'Meds for high potassium'

Hey! Tristan is peg fed too and uses similac pm 60/40 which is a renal formula. We pretreat it with kaexalate powder. So when you mix the formula you mix the kaexalate power with it and take out the extra potassium that you don't want him to eat. I…

August 10

Kerri Grey and Donna Kolp are now friends

August 9

Kerri Grey commented on Kerri Grey's blog post 'Meds for high potassium'

Ash is peg fed and uses a formula called kindergen which is low potassium, phosphate and protein he orally eats very little and i know that tomatos bananas potatos pumpkin etc are not good for high potassium levels. The only meds he is on at the mom…

August 9

Grace commented on Kerri Grey's blog post 'Meds for high potassium'

Certain medications can cause increased or decreased levels of potassium, including different classes of blood pressure medications. I don't know if Ash is on any medications that could be contributing, but it's worth asking your doctor (if you have…

August 9

Donna Kolp commented on Kerri Grey's blog post 'Meds for high potassium'

Hi Kerri, I am really not sure about a long term med for high potassium, but how is Ash's diet? With Jonathan we had the opposite issue as when he went on Hemo I couldn't give him enough potassium. They eventually changed his script to a 2 K bath. W…

August 9

Profile Information

Birthday

March 13

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?

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

Tested but Awaiting Results

Kerri Grey's Photos

Loading…

Kerri Grey's Blog

aHUS and joint issues

Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms can face upwards. They did xrays and it showed that she has no joint in her elbow and her 2 forearm bones are fused together. We have now been refered to a different specialist and a genetisist because they said that the type of thing she has is commonl… Continue

Posted on September 2, 2010 at 10:18pm — 1 Comment

Meds for high potassium

I was wondering if anyone of you have used any other treatment other than dialysis to treat high potassium levels as a long term treatment???

Ash has been constantly having high potassium levels and his docs have been using resonium to bring his levels down and that is effective however the docs say this is not a good long term option. I asked Ash's doc if there is anything to treat it with long term other than dialysis and he didnt really give me a straight answer which makes

… Continue

Posted on August 7, 2010 at 7:22am — 10 Comments

Ash turned 2 today

Hi all,

My little man turned 2 today. It funny how his birthday takes on such a huge meaning for me. I think this is because we were not sure if he would make it to his 1st bday let alone 2nd. I find myself feeling so protective of this day and dont want to share it with anyone else - to me this day is all about Ash. These feelings have come up because my sister in law is due to have her baby and i have been petrified that she would have her baby on the same day as Ash's bday. I know i

… Continue

Posted on June 10, 2010 at 7:43am — 6 Comments

PNH

Hi all,

I know this is a little off the aHUS track but PNH is one of the things Ashley was tested for in the beginning. I was reading our local newspaper this morning and there is a local lady that has PNH and over here in Australia Solaris is approved for use with PNH patients but as yet is not funded by the phamaceutical benefits scheme. PNH sufferers are trying to push that it be put on the pharmaceutical benefits scheme as without the use of this drug they dont have much chance of

… Continue

Posted on May 28, 2010 at 1:49am — 4 Comments

Comment Wall (6 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 9:06pm on May 26, 2010, Wendy Flinn said…: Your kids are so cute. I think it's wonderful that you did a funderaiser for kids with aHUS. I hope it went well. Your right about noone knowing about this disease. When people ask me what my son had I always sigh and think how do I explain it. I hope your son is doing well. His eyes are so blue.

At 10:45pm on February 24, 2010, Linda Burke said…: Sending along a hug as you ride a rollercoaster of emotions....sending prayers that Ash's treatment plan with Soliris will soon yield improved lab numbers. Hang in there!

At 8:25pm on February 24, 2010, Grace said…: It is so great to see the joy in the faces of all your beautiful children! I hope Ashley's aHUS remits soon!

At 11:16am on February 15, 2010, Svetlana Finley said…: You have awesome family!!! Love your kids pictures ;-)

At 8:06am on February 12, 2010, Phyllis Ann Talbot said…: Hi there Kerri - i'm a little late but wanted to welcome you and tell you good luck with the Soliris! By the way - the new pics are adorable!!! what a cutie!

At 10:31pm on February 9, 2010, Jodi Kayler said…: Hi Kerri, In response to your question on the blog. Our doc thinks he can go a few years at least--maybe into his teens. His creatinine hangs at 1.5 but all his electrolytes have continued to stabilize. Coen only had plasma exchanges the first year of his diagnosis. Daily exchanges would only keep his platelets stable but not allow his kidneys to function. We finally figured out that constand weekly doses IVIG did help, and that is what he was on for 4 years. Last year, his relapse was so severe that they tried plasma exchanges and IVIG, with no luck. You are very lucky that you don't have to worry about insurance coverage! So far we haven't had any hassles with it but I'm always worried we may in the future. Keep us posted on the Soliris. I typically post Coen's updates in the Soliris forum.

No comments yet!

Welcome to
The Foundation for Children with Atypical HUS

Sign Up
or Sign In

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 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...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.

Badge

Loading…

Get Badge

Badges | Report an Issue | Terms of Service