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Permalink Reply by Colette Ann Frysz on October 21, 2009 at 4:42pm
Permalink Reply by Linda Burke on October 21, 2009 at 11:24pm Kelly,
I was always advised to give Jessica a killed virus vacination. I believe the inhaled type administered right now is live. I did ask Jessica's doctor about the safety of the swine flu shot and all she would tell me is that it is a personal preference and that Jessica does fall into the risk parameters. I am waiting for the killed virus shot and then I'll see if I can get any better info on it. Jessica did get the regular flu shot and has every year.
Permalink Reply by lisa ann peterson on November 5, 2009 at 11:18am 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 Dr. called and said Walgreens had the vaccine, I decided to call them, they said we don't but try...with each phone call, they referred me elsewhere. I called several pharmacies, the pediatrician, the local health department and finally the county health department, where finally the answer was yes, when would you like and apptmt. Of course this was after I explained his medical condition. They took fairly comprehensive information it took just minutes...
Permalink Reply by Linda Burke on November 5, 2009 at 12:19pm 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 would never make chloe do anything that i wouldnt do myself. has any of the other kiddos had their h1n1 shot iam just curious about how other kiddos did after the vaccine. i really looked into it and i look at it this way chloe will probably not survive a swine flu episode because she is also asthmatic along with ahus and the shot might have risks but i take risks in every decison i have to make as a mom when it comes to her.(ex. pills, dialysis,pheresis,ports,enfusions,solaris and did i mention every day life)
Cheryl Christine Pallme Biermann said: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 Dr. called and said Walgreens had the vaccine, I decided to call them, they said we don't but try...with each phone call, they referred me elsewhere. I called several pharmacies, the pediatrician, the local health department and finally the county health department, where finally the answer was yes, when would you like and apptmt. Of course this was after I explained his medical condition. They took fairly comprehensive information it took just minutes...
Permalink Reply by lisa ann peterson on November 5, 2009 at 1:06pm 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 classmates/neighbors had the mist and developed flu symptoms soon after. My guess is that they were probably already battling a bug and that the mist (live but weaked virus) was just enough to crash their immune system.... it can only battle on so many fronts at once, I guess.
There is absolutely no available H1N1 vax for Brad and I - but I'll keep looking. The Iowa docs stressed that we parents cannot have flu mists as that indrectly intoduces the flu virus right into our households -yikes! We all had our seasonal flu shots as soon as they were available, tho. Just a reminder that the H1N1 shot for kiddos under 10 years of age comes in 2 parts, Skyler needs the next booster in 4 weeks. I haven't told him yet...... ;0 Stay well!
lisa ann peterson said: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 would never make chloe do anything that i wouldnt do myself. has any of the other kiddos had their h1n1 shot iam just curious about how other kiddos did after the vaccine. i really looked into it and i look at it this way chloe will probably not survive a swine flu episode because she is also asthmatic along with ahus and the shot might have risks but i take risks in every decison i have to make as a mom when it comes to her.(ex. pills, dialysis,pheresis,ports,enfusions,solaris and did i mention every day life)
Cheryl Christine Pallme Biermann said: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 Dr. called and said Walgreens had the vaccine, I decided to call them, they said we don't but try...with each phone call, they referred me elsewhere. I called several pharmacies, the pediatrician, the local health department and finally the county health department, where finally the answer was yes, when would you like and apptmt. Of course this was after I explained his medical condition. They took fairly comprehensive information it took just minutes...
Permalink Reply by Kelly Crumbaker Hubbard on January 28, 2010 at 3:16pm 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.
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