"I recently saw that you posted that Josh is not feeling well and has gone back for testing...is he doing ok? My son Kegley has had two exacerbations of AHUS but has been clear for 4 years. I also received genetic testing at a conference in Iowa and…"
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Kelly Crumbaker Hubbard
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Kelly Crumbaker Hubbard's Discussions
Flu vaccinations
21 Replies
Started this discussion. Last reply by Kelly Crumbaker Hubbard Jan 28, 2010.
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Kelly Crumbaker Hubbard replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?Kelly Crumbaker Hubbard left a comment for debbie thelwell"Hi Debbie! Our son Kegley has been sick 2x with aHUS, in 2005, 2007. Kegley was diagnosed with the MCP mutation in August 2007. --- he has not required hospitalization since then but we did feel that Motrin may have irritated his system and we…"
debbie thelwell left a comment for Kelly Crumbaker Hubbard"Hi Kelly oue son had his first onset of HUS in 2009 eversince we have lived in fear of another relasp he has mcp and wonderd how your child was doing and have they has many relasps thanks new mum to the site"
Kelly Crumbaker Hubbard replied to Steve Greene's discussion MCP mutations"I think that my email link is inactive.... I had to search the sight and then found your response. You are gracious as always for responding. We have not posted in a while... had a huge transition, and sometimes feel reluctant to post bc Kegley is…"
Kelly Crumbaker Hubbard replied to Steve Greene's discussion MCP mutations"I apologize for my absence. I carry the MCP mutation as an adult and was tested following dx of my son who also has the MCP mutation. We have as yet persued further familial testing. If anyone would like to contact me regarding their situation ad…"
Kelly Crumbaker Hubbard is attending Phyllis Ann Talbot's event2nd Annual Hike for Hyde at Sawnee Mountain Preserve Park
April 17, 2010 from 9am to 2pm
A fun-filled day - check out www.hike4hyde.com and go to the registration page. Event is in honor of Hyde Talbot, Bryan Hearn, Kegley Hubbard, as well as all the other kids struggling with AHUS!
Kelly Crumbaker Hubbard replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"My son also did well with the regular flu vaccination but actually contracted the swine flu before he was vaccinated and did not have an AHUS episode. Thank you so much for your post"
Christy replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"Aiden is getting his h1n1 shot tomorrow morning....his ped's office only got enough for 10 vaccines! Each dr. had to pick 2 patients who they felt "most needed" it....Aiden wins the grand prize, but I'm sure he will not be happy…"
"Kelly,
does your daughter happen to have aHUS? If she does, it's mostly recommended for us as aHUS patients to get the inactivated form of the flu vaccine, it would not be a live form, which means an injection instead of the nasal spray. Here,…"
lisa ann peterson replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"cool thanks yea our doc told us not to get mist either..our clinic just called us yesterday and scheduled our shots for friday.. we are ready i suppose to get them hopefully the vaccine is avalible in 4 weeks for second dose.. hope everyone is well…"
Linda Burke replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"Howdy Lisa!
Skyler got his H1N1 shot about 2 hours after after Tuesday's (11/3/09) Soliris infusion - it took a couple of weeks to find the the vax for him, though. Absolutely no side effects or problems for Skyler - sad to say a few of his…"
lisa ann peterson replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"chloe just got her h1n1 shot on tuesday and she seems to be doing well. i will not give chloe any kind of live flu shots the mist is bad news for a kid with a complement disorder.. we will all be vaccinated on friday with the injection because i…"
Cheryl Biermann replied to Kelly Crumbaker Hubbard's discussion Flu vaccinations"So silly of me, I replied to a comment about H1N1 in Jodi's Soliris update and should have come here. For those of you desperate for H1N1 vaccine, maybe you're all smarter than me, it takes me awhile, but when my mom called and said her…"
Profile Information
- Birthday
- August 15
- 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.
- not at this time
- My child ( or myself as a patient) is best described as:
- MCP (MCP/CD 46)
Kelly Crumbaker Hubbard's Photos
Comment Wall (19 comments)
- At 5:38pm on June 16, 2011, debbie thelwell said…
- Hi Kelly oue son had his first onset of HUS in 2009 eversince we have lived in fear of another relasp he has mcp and wonderd how your child was doing and have they has many relasps thanks new mum to the site
- At 7:23am on October 22, 2009, Kelly Crumbaker Hubbard said…
- Kegley is doing a little better (thanks to all of the positive thought I think!) He was immediately better when we gave him prednisone but I think all it did was break his fever. He feels really bad but his counts were ok and his urine is not black so we are happy...
- At 8:50am on October 21, 2009,
Heather Still said… - Praying for Kegley. We just found out about a confirmed swine flu case in Ryan's school, so I am trying to figure out a way to keep it away from him because there are still no vaccines available in our area. Keep us posted on Kegley.
- At 8:29am on October 21, 2009, Cheryl Biermann said…
- Come on Kegley-were all praying for you, hang in there champ!
- At 8:15am on October 21, 2009,
Lisa Goble said… - sorry to hear about the swine flu. in our area (Michigan) 35 schools are closed right now. Its like waiting for the shoe to drop. My kids were pulled out of school a week ago and thank God are symptom free at the moment, but it is showing no mercy and rearing its ugly head. Praying that your kiddo makes it thru like a champ.
- At 7:45am on October 21, 2009, Kelly Crumbaker Hubbard said…
- Thank you for all the supportive comments. Kegley seems to be better today. Yesterday was really rough and when I called Egleston, both of his hemotologists have changed specialties and AFLAC had purged his chart. Luckily I was able to find the nurse that was always so helpful. Anyway, we are keeping our fingers crossed because it is when his fever breaks that he starts to show signs of hemolysis ("typically"). -- will be back in touch soon!
- At 10:20pm on October 20, 2009, Linda Burke said…
- Oh man.... hope the swine flu symptoms are mild and go away quickly! Keep us posted...
- At 6:31pm on October 20, 2009,
Phyllis Ann Talbot said… - Are you kidding me!!! ARGHHH so sorry - let me know how it goes! So great to get to hang out with you this weekend! Sorry if I talked your ear off ;-).
- At 1:47pm on October 20, 2009, Cheryl Biermann said…
- Yikes, Kelly, hope it doesn't trigger anything, keep us up to date!
- At 1:34pm on October 20, 2009,
Svetlana Finley said… - Hi, Kelly,
Sorry about Kegley getting swine flu, we will pray for fast recovery ;-)
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 "aHUS Bootcamp" and "About aHUS" tabs 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.
************************
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.
more factoids...
• • • • • • • • • • • •
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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