The Foundation for Children with Atypical HUS

I was wondering what doctors have told the rest of you regarding flu vaccinations. I am in Macon, Georgia and we have had a major early outbreak of flu (80 kids a day were seen and tested last week at our pediatric after hours). College students are being sent home from Ga Southern with Swine flu, and 8 of our public schools have positive cases. The recommendation is that children be vaccinated for both strains of the flu to prevent a "super flu" that would be a combination of the two. I just don't think that I can give Kegley a live vaccination! any thoughts.....

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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.
Hi Colette!
As you mentioned, the mist (weakened form of the virus) is OUT - and not just for the aHUS patients! Dr Brophy mentioned that we should safeguard our entire household with both the H1N1 and seasonal flu vaccines (but do check with your own doc for special circumstances for your child). If parents receive the mist version, they can bring the weakened flu virus home and directly expose the rest of the family - yikes!!
So, shots (killed virus) only - no mists (weakened live virus) allowed for anyone in the household. A pity, since the mist seems more available.... Stay well, everyone!

Colette Ann Frysz said:
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.
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...
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...
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 in your home as well

Linda Burke said:
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...
We didn't got H1N1 yet and still looking for it. They told us it won't be available for another few weeks. We did got regular flu shots.
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, in Buffalo there is a low supply of the swine flu vaccine, I was lucky enough to have gotten it when I did. My college even offered to give it to the students, but I got it ahead of time. Doctors have always told me to get the flu vaccine, because it could prevent the major effects of flu. I don't usually get sick, however, it just prevents me from getting severely ill. I have been getting the flu shots since I was younger, and just received the "swine" flu vaccine and have been doing fine, no side effects at all, just a little soreness at the injection site, which is normal. Nephrologists usually recommend getting the flu shots, because of the underlying condition that is present, but I would suggest checking with your daughter's nephrologist to double check.
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 about it! No luck finding any for David or myself, but we will keep looking. Prayers for all of you as we make these decisions and for our little ones to not have any adverse effects.

Lisa--My husband, David and I had almost the same thoughts as you. Everything is a risk, but we think the benefits of this particular vax far outweigh the risks! Aiden's nephrologist had a "healthy" patient recently with H1N1---it temporarily knocked out her kidneys and her lungs---thankfully she was strong and healthy enought to eventually recover...but we are not willing to take that chance! :)
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

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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.
  
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