On May 10, 2006, at only 6 months old, Sophie was diagnosed with Infantile Spasms...a RARE and CATASTROPHIC form of epilepsy. She continues to battle this disorder on a daily basis. Only after she had the majority of her left hemisphere of her brain removed (on May 29, 2009) has she had a relief in seizures (though she continues to show spiking in her EEG). She has shown much improvement in development since the surgery.
Tuesday, October 13, 2009
H1N1
Please share any thoughts on whether to get the H1N1 vaccine and whether it matters if it is the nasal mist or shot. Thanks.
14 comments:
Anonymous
said...
Okay so my child does not have any underlying conditions so this may not have any bearing on the conversation, however I don't think I will be giving him the vaccine. I have two friends that are nurses and they both advise against it. One has an 8 year old son with asthma. They both said the same thing "We are guinea pigs for this vaccine" and "we cannot know the side effects" - although our government seems to think there are none (and of course we know how trustworthy they are). At this point we've seen so many cases that I feel that by the time the vaccine comes around it probably won't be a huge issue. As of right now though my family will not be getting it.
I don't know much about the vaccine, and still have no clue whether or not Reagan should get it, but I did hear something that shocked me. You have to request a vaccine without thimerosal...otherwise the vaccine you get (or your child gets) will probably have it in it. This was a lady that works for the CDC that said this on Good Morning America. So for those of you that choose to get it, you may want to specifically ask for a thimerosal free version.
We are all getting it.At the advice of her pediatrician and oncologist.The mist is out now.that has a "live" component to it with means it does hold the possibility of contracting H1N1 or passing it on to someone for up to 14 days.Zoey will NOT be getting the mist,we will wait for the shot for her.Her oncologist figures she is far enough out for the boys to get the mist though.I would REALLY defer to your doctor that you trust.Ask all the questions and if you feel comfortable with the answers,then move forward.Lots of controversy out there.some valid.Some not.As always Elaine,trust that mommy instinct.Your a pro with that!!
I don't think I'd opt for the mist...since it's a weakened but live virus I wouldn't want to take the chance of passing it along to someome comprimised. Ask for the thiomerosal free if you decide on it. I think that's what is recommended for pregnant women and children under a certain age anyway. If the virus had shown up sooner I'm sure they would have just included it in this year's seasonal vaccine.
These are such tough decisions to make for your family. Whatever you decide is what's best for yours.
I honestly don't know what to do about the vaccine. Katie hasn't had a seizure since she had Meningitis, but we know that she is at a very high risk for them. With a fever from a cold/flu that risk increases exponentially. BUT the vaccines give her a fever for 2 days. Soooo, I have no idea what we're going to do. Get the vaccine and automatically risk 2 days of fever, don't get it and risk a bad flu with fever, or don't get it and she stays healthy...Sigh. I've heard different opinions from many of our trusted medical advisors. They're all over the map. I have no idea which one has the "right" answer.
I'm going to open up the questions on my blog as well. Thanks for bringing it up!!
Oh I forgot...there are a few different options for the H1N1 vaccine...
1. Regular large vial doses: Contains thimerosol. I would never give that to Katie.
2. Adjuvanted Individual Doses: Most of the individual doses have been Adjuvanted. Which means that an additive has been added to boost the bodies immune response.
3. Unadjuvanted Individual Doses: These have been put aside here in Canada for both Pregnant women and children under 3. I would suspect there is a very good reason for this. (Can't find much more specific info) Therefore you may want to ask your doctor to be sure your child is getting the unadjuvanted vaccine. In other words...the most pure.
Thought I'd pass that along....it took me ALL day to find out the information. The phone help lines are pathetic.
We are getting it on the advice of our neurologist. Risk of more seizures is huge I think but risk of death is unfathomable to me. The neuro told me to give her tylenol for a day before and seven days afterwards just in case but I have never seen her develop a fever from a vaccine. However she started having seizures after two months seizure free (after surgery) less than a week after getting a Hep A vaccine that I believe she did not even need.
Make your choice based on your individual situation and needs. If mist is not appropriate for one person in your family then it should not be appropriate for any of your family.
I commented earlier, about not getting it, but I wanted to add that this is not an easy decision. Nor it is one that is made either way without some concern. I think that each individual should look at their families' personal situation, talk to their pediatrician and pray to make the right choice for their own kids. What's right for one is not always right for another. Good luck.
We won't be getting the vaccine for Kylie. We are having a difficult enough time to decide what to do about her regular vaccines, let alone be ready and willing for her to get one that lacks the research.
It is hard enough to find research for the standard vaccines and links to IS, so I'm guessing when there are studies done, they won't be real specific to kids with IS.
An added reason for a no from us, is that the nasal is a live virus, and well, with a baby who's immune system was compromised this year because of the ACTH...I don't think that is a good thing to give her.
I am new to your blog. I, too, have a sweet Sophie with a seizure disorder. I look forward to catching up with your blog! I posted recently on this subject --
I spoke to my husband about this last night. Kym, my 6 month old daughter, is due for a check up next week and I said to him that I know they will be asking if we want her to have the flu shot and the H1N1 and wanted his opinion. Neither my husband or I nor our older two children ever get the flu shot and none of us ever get the flu. We decided that we weren't going to get Kym either shot either. I don't trust this vaccine. It's not proven to work yet and as the first commenter said, we are just guinea pigs...NO THANKS! And as I've told my husband, I can't help but think that this "swine" flu is just any old strain of flu and they just decided to name this one and make it seem so much worse than the regular flu just so they can get more money out of us.....
However, in your situation with Sophie...I can't help wonder if getting them would be smart?? After all she's been through and your family as well, do you really want to risk her getting anything that could be extremely harmful?
The mist does NOT contain thimerosol, but you have to make sure that a shot is thimerosol-free. It is so important for our girls' brains to avoid thimerosol (aka mercury)! I decided not to vaccinate Maddie because of her autism, but I will likely get the flu mist myself. If you decide to vaccinate, pump up everyone's immune system first - probiotics (yogurt or Culturelle supplement avail. at Target), Vitamin C, Omega 3s....
Elaine...We have already had our seasonal flu shots, and I plan to get the injection for both myself and Colby....My other son, who doesn't live with us, will get it also because he works in a private school w/all ages of students....
On the advice of Colby's cardiologist, I also got him the pneumonia vaccine to hopefully protect from complications if he were to get H1N1...
Colby has not had any adverse reactions (knock on wood!) to his past flu shots...From what I am understanding, this vaccine is made exactly like flu vaccines in the past, only the virus portion is different (which is the case every year)....Also, with the CDC saying a few weeks ago that 2/3 of children who have died from H1N1had either CP or a seizure disorder, I feel like it is the thing to do for us.....
I am going to check once again w/his regular doctor, but both his neurologist AND cardiologist are still highly recommending it....
This is a tough decision, and I am sure you will make the right decision for your family...
(And you can bet that when we DO get our H1N1s, I will be praying hard!!!)
14 comments:
Okay so my child does not have any underlying conditions so this may not have any bearing on the conversation, however I don't think I will be giving him the vaccine. I have two friends that are nurses and they both advise against it. One has an 8 year old son with asthma. They both said the same thing "We are guinea pigs for this vaccine" and "we cannot know the side effects" - although our government seems to think there are none (and of course we know how trustworthy they are). At this point we've seen so many cases that I feel that by the time the vaccine comes around it probably won't be a huge issue. As of right now though my family will not be getting it.
I don't know much about the vaccine, and still have no clue whether or not Reagan should get it, but I did hear something that shocked me. You have to request a vaccine without thimerosal...otherwise the vaccine you get (or your child gets) will probably have it in it. This was a lady that works for the CDC that said this on Good Morning America. So for those of you that choose to get it, you may want to specifically ask for a thimerosal free version.
We are all getting it.At the advice of her pediatrician and oncologist.The mist is out now.that has a "live" component to it with means it does hold the possibility of contracting H1N1 or passing it on to someone for up to 14 days.Zoey will NOT be getting the mist,we will wait for the shot for her.Her oncologist figures she is far enough out for the boys to get the mist though.I would REALLY defer to your doctor that you trust.Ask all the questions and if you feel comfortable with the answers,then move forward.Lots of controversy out there.some valid.Some not.As always Elaine,trust that mommy instinct.Your a pro with that!!
I don't think I'd opt for the mist...since it's a weakened but live virus I wouldn't want to take the chance of passing it along to someome comprimised. Ask for the thiomerosal free if you decide on it. I think that's what is recommended for pregnant women and children under a certain age anyway. If the virus had shown up sooner I'm sure they would have just included it in this year's seasonal vaccine.
These are such tough decisions to make for your family. Whatever you decide is what's best for yours.
Barb
I honestly don't know what to do about the vaccine. Katie hasn't had a seizure since she had Meningitis, but we know that she is at a very high risk for them. With a fever from a cold/flu that risk increases exponentially. BUT the vaccines give her a fever for 2 days. Soooo, I have no idea what we're going to do. Get the vaccine and automatically risk 2 days of fever, don't get it and risk a bad flu with fever, or don't get it and she stays healthy...Sigh. I've heard different opinions from many of our trusted medical advisors. They're all over the map. I have no idea which one has the "right" answer.
I'm going to open up the questions on my blog as well. Thanks for bringing it up!!
Oh I forgot...there are a few different options for the H1N1 vaccine...
1. Regular large vial doses: Contains thimerosol. I would never give that to Katie.
2. Adjuvanted Individual Doses: Most of the individual doses have been Adjuvanted. Which means that an additive has been added to boost the bodies immune response.
3. Unadjuvanted Individual Doses: These have been put aside here in Canada for both Pregnant women and children under 3. I would suspect there is a very good reason for this. (Can't find much more specific info) Therefore you may want to ask your doctor to be sure your child is getting the unadjuvanted vaccine. In other words...the most pure.
Thought I'd pass that along....it took me ALL day to find out the information. The phone help lines are pathetic.
Cheers! :)
We are getting it on the advice of our neurologist. Risk of more seizures is huge I think but risk of death is unfathomable to me. The neuro told me to give her tylenol for a day before and seven days afterwards just in case but I have never seen her develop a fever from a vaccine. However she started having seizures after two months seizure free (after surgery) less than a week after getting a Hep A vaccine that I believe she did not even need.
Make your choice based on your individual situation and needs. If mist is not appropriate for one person in your family then it should not be appropriate for any of your family.
I commented earlier, about not getting it, but I wanted to add that this is not an easy decision. Nor it is one that is made either way without some concern. I think that each individual should look at their families' personal situation, talk to their pediatrician and pray to make the right choice for their own kids. What's right for one is not always right for another. Good luck.
We won't be getting the vaccine for Kylie. We are having a difficult enough time to decide what to do about her regular vaccines, let alone be ready and willing for her to get one that lacks the research.
It is hard enough to find research for the standard vaccines and links to IS, so I'm guessing when there are studies done, they won't be real specific to kids with IS.
An added reason for a no from us, is that the nasal is a live virus, and well, with a baby who's immune system was compromised this year because of the ACTH...I don't think that is a good thing to give her.
So yeah, a big no from our house.
Thanks for all the feedback. I feel so much more informed now.
I am new to your blog. I, too, have a sweet Sophie with a seizure disorder. I look forward to catching up with your blog! I posted recently on this subject --
I spoke to my husband about this last night. Kym, my 6 month old daughter, is due for a check up next week and I said to him that I know they will be asking if we want her to have the flu shot and the H1N1 and wanted his opinion. Neither my husband or I nor our older two children ever get the flu shot and none of us ever get the flu. We decided that we weren't going to get Kym either shot either. I don't trust this vaccine. It's not proven to work yet and as the first commenter said, we are just guinea pigs...NO THANKS! And as I've told my husband, I can't help but think that this "swine" flu is just any old strain of flu and they just decided to name this one and make it seem so much worse than the regular flu just so they can get more money out of us.....
However, in your situation with Sophie...I can't help wonder if getting them would be smart?? After all she's been through and your family as well, do you really want to risk her getting anything that could be extremely harmful?
The mist does NOT contain thimerosol, but you have to make sure that a shot is thimerosol-free. It is so important for our girls' brains to avoid thimerosol (aka mercury)! I decided not to vaccinate Maddie because of her autism, but I will likely get the flu mist myself. If you decide to vaccinate, pump up everyone's immune system first - probiotics (yogurt or Culturelle supplement avail. at Target), Vitamin C, Omega 3s....
Elaine...We have already had our seasonal flu shots, and I plan to get the injection for both myself and Colby....My other son, who doesn't live with us, will get it also because he works in a private school w/all ages of students....
On the advice of Colby's cardiologist, I also got him the pneumonia vaccine to hopefully protect from complications if he were to get H1N1...
Colby has not had any adverse reactions (knock on wood!) to his past flu shots...From what I am understanding, this vaccine is made exactly like flu vaccines in the past, only the virus portion is different (which is the case every year)....Also, with the CDC saying a few weeks ago that 2/3 of children who have died from H1N1had either CP or a seizure disorder, I feel like it is the thing to do for us.....
I am going to check once again w/his regular doctor, but both his neurologist AND cardiologist are still highly recommending it....
This is a tough decision, and I am sure you will make the right decision for your family...
(And you can bet that when we DO get our H1N1s, I will be praying hard!!!)
Cyndi
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