More vaccine questions

[2boyzmama]

Here I go again...doubting and getting scared

My mom recently got ahold of the newest book to be published by the world's most renowned expert in Connor's syndrome, Dr Shprintzen. I am currently waiting to purchase the book myself (Barnes and Noble is ordering it for me) She got it through her library's loan program. My mom is absolutely wonderful, supportive, does tons of research for and with me, etc. She fulls supports any decision I make and is very open with her approval of the way I've gone about making the decisions to this point.

Up to now Connor has had only Synagis (RSV), he is otherwise completely vax-free. My mom supported that decision, even agreed with it. But there's a section in the book apparently about vaccines. Dr Shprintzen apparently advocates a few vaccines that he considers to be "absolutely necessary", including Pneumococcal and Flu. The other vaccines he discusses that his recommendations vary based on the child's immune response, and he acknowledges that the chance of exposure for many of them is very rare and that it may be prudent to hold off on many.

Pneumococcal and Flu were two that I was sure about NOT giving Connor. I realize that they both protect against illnesses that will be much worse for Connor than the average child, but with Pneumococcal the serum replacement issue concerned me and with Flu the low effective rate plus the need for yearly boosters, plus the ingredients turned me away from that one. I did heavily consider vaxing the rest of the family against flu to protect Connor, but then realized that with the exception of me going to work, no one in the family goes anywhere that Connor doesn't also go (stores, restaurants, etc) so since no one is in daycare or school, it didn't make much sense to vax the rest of us.

I can't remember if my mom said that he mentioned Pertussis as well, actually, yes he did mention Pertussis, but I immediately stopped listening when she read that he recommends all family members get vaxed to prevent transmission, which I know to be an incorrect statement since the pertussis vax does not prevent transmission. Pertussis was the one vaccine I was going to give Connor last summer when his airway was so unstable, there were several reasons why I eventually chose not to, and all those reasons still pertain today, plus his airway is much more stable than it was. So I'm not going to reconsider that one right now.

But pneumococcal and flu...darn it, I really respect this guy and the decades of research he's done on Connor's syndrome, I can't just dismiss something that he so strongly supports...

HELP!!! How did you all come to your decisions??

[BookGoddess]

It's a hard decision, isn't it? I talked to other parents who were in my support group. I also read a lot of books (What Your Doctor May Not Tell You About Children's Vaccines by Stephanie Cave, MD; How To Raise A Child In Spite Of Your Doctor by Robert Mendelsohn, MD, Evidence of Harm, etc.) I also had to consider my own adverse reaction to the flu vaccine. I also looked at the CDC's website to see how often a vax preventable disease occured in my state. All these helped me to make up my mind. It took DH longer to get to that point but now we see eye to eye.

[snuggly mama]

Dd gets the flu vaccine every year because, after really, really weighing all the options, I felt very strongly that FOR HER, the risks of the vaccine were dramatically outweighed by the benefits. We used to also flu vax myself and the older kids (dh had a scary reaction, so no more for him!), but have decided that, for the older kids, the potential benefit is outweighed by the risk.

The clincher, for me, is that, if dd gets the flu, she is really, really likely to be one of those kids that dies from it. She's immunocompromised with significant respiratory issues and decreased cough reflex and a tremendous history of pneumonia. She hasn't had any negative vax reactions at this point, and we do carefully reconsider this issue each and every year. What helped me to make this decision was actually talking with dr's in the field of transplant, immunology and pulmonology who were generally not totally pro-vax but did feel that flu vax was an important thing to consider. Because they weren't "yeah, everyone should get every vax all the time", I respected their opinion.

This was right for us, and I don't suggest that it's right for everyone, though.

[JessSC]

It is a hard decision and its based on so many personal factors

We gave Jayce one does of the Prevnar vaccine and he had a mild reaction. We tried a second dose and his reaction was even worse (He was vaxed one at a time, so we know for sure it was this particular vaccine) so we said no to doses 3 and 4.

It is really hard to find a preservative free flu shot here in my town. That's why we choose not to do the flu vaccine.

[ShadowLark]

We vax fully, so maybe I don't count.
But for a kid with respiratory/immune compromising issues, yes, the flu shot and pnuemococcal one would DEFINITELY be necessary in my book. Same with Pertussis. My mom had Whooping Cough at ten years old, and she was healthy and strong - it still knocked her on her butt for a MONTH. A healthy, strong ten year old, and she had THAT bad a reaction? I wouldn't even want to THINK about a kid with breathing issues getting it.
And the flu shot is around 80 to 90 percent effective in preve3nting the flu. Yes, you need to get one every year, but that's because the strain of the flu that's going around CHANGES every year. If you've been being vaxed for 10 or so years, your immunity doesn't just disappear. That's not how the human immune system works. You'll still have the immunities to the older strains, so if they guess wrong, you're still somewhat protected.
Plus, the shot ALSO gives some level of protection even in the cases where you DON'T get full immunity. That could be the difference between the FLU and what felt like a bad cold, but it was actually the flu that you were already partially immune to. So if Connor is usually at home on Albuterol, say, with just a cold, but with the flu he'd be fighting for his life in the Hospital, even a partially effective vaccine might be the difference between albuterol at home and a VERY scary Hospital stay.
Totally worth it to me.

[momtoalexsarah]

With all my kids we chose to do the Dpt for the tetnus part (because we live on a farm and here in Canada you cant get it seperate) that is normally ALL we do as far as vax. NOW with Megan she had her first Ear infection at 3 weeks old and had fluid till her tubes at 18m.
We chose at 9 months after 3 cases of RSV and EI's to give her the HIb and Pnumocausue - both of which are huge on the Ear infection front.
I don't normally do the flu shot but we may this fall since she has 3 surguries schedualed from Oct-Jan including the cleft repair. I have to talk to the doctors to see if we can get either the RSV shots or immuoglubulins for the winter because we need her in tip top shape.
We have not and will not do the MMR or CP.
Good luck it is a hard choice to make, especailly when 22q kids carry increased rates of behavoiral issues, cognative delays and autsim

[2boyzmama]

Originally Posted by momtoalexsarah

With all my kids we chose to do the Dpt for the tetnus part (because we live on a farm and here in Canada you cant get it seperate) that is normally ALL we do as far as vax. NOW with Megan she had her first Ear infection at 3 weeks old and had fluid till her tubes at 18m.
We chose at 9 months after 3 cases of RSV and EI's to give her the HIb and Pnumocausue - both of which are huge on the Ear infection front.
I don't normally do the flu shot but we may this fall since she has 3 surguries schedualed from Oct-Jan including the cleft repair. I have to talk to the doctors to see if we can get either the RSV shots or immuoglubulins for the winter because we need her in tip top shape.
We have not and will not do the MMR or CP.
Good luck it is a hard choice to make, especailly when 22q kids carry increased rates of behavoiral issues, cognative delays and autsim

I understand the tetanus worry, that makes sense for you. For Connor it was Pertussis that worried me most initially, but I think I'm comfortable with that decision now.

HiB and Prevnar I was heavily considering, but the serum replacement issue worries me, and in our area HiB is almost unheard of (one vaccine that appears to be working very well against the one strain it protects against!)

CP and MMR are out of the question for him since they're live virus and his t-cell count isn't high enough.

You're right, I have to take into account the behavioral issues that are so common, cognitive delays, and high rate of autoimmune disorders (juvenile rheumatoid arthritis is one we've been told to be on the lookout for over the next couple years) He already has some food sensitivies (dairy and soy) and appears to either have some environmental sensitivities or a very reactive airway.

I think if he had surgeries planned like Megan has, I would consider a few. Has anyone talked to you about hepatitis? I normally would never consider it, but I do have to consider that he stands a higher chance of needing a blood transfusion, and donor blood screening is not perfect. My husband has the same blood type, so if it's a planned surgery we may try to do a family member donation, but if not...

[preemiemamarach]

we also may not count because we vax as fully as we can, but no MMR or CP because of the immune deficiency.

We can't do flu because DS has a serious egg allergy, but all of us who come in contact with him will get the flu shot. We can't do the nasal vaccine because of potential shedding. Flu is something I am terrified of- DS doesn't have any major respiratory issues yet, although he did have pneumonia and RSV last year, once each. We also live at a very high altitude (9,600 feet), and I found out when having a miscarriage that it is MUCH harder to deal with illness here, so his healthy lungs could be damaged pretty easily if he got the flu.

Pneumococcal vaccines- we did all of the boosters, but DS's titer after 3 shots was 0. We did a booster and we're awaiting the titers from that one (this is part of his diagnostic testing to find out which PID he has). If he still shows no response, I will not do anymore of them, since it will be pointless. He is completely isolated (no stores, restaurants, daycare, etc.) and still has had 3 ear infections since he got tubes in June. We still need one more Hib, but his titers on that are super low, so it's another one where I question the usefulness. I am starting work again next week, and he will be home with a nanny.

[2boyzmama]

Originally Posted by preemiemamarach

we also may not count because we vax as fully as we can, but no MMR or CP because of the immune deficiency.

We can't do flu because DS has a serious egg allergy, but all of us who come in contact with him will get the flu shot. We can't do the nasal vaccine because of potential shedding. Flu is something I am terrified of- DS doesn't have any major respiratory issues yet, although he did have pneumonia and RSV last year, once each. We also live at a very high altitude (9,600 feet), and I found out when having a miscarriage that it is MUCH harder to deal with illness here, so his healthy lungs could be damaged pretty easily if he got the flu.

Pneumococcal vaccines- we did all of the boosters, but DS's titer after 3 shots was 0. We did a booster and we're awaiting the titers from that one (this is part of his diagnostic testing to find out which PID he has). If he still shows no response, I will not do anymore of them, since it will be pointless. He is completely isolated (no stores, restaurants, daycare, etc.) and still has had 3 ear infections since he got tubes in June. We still need one more Hib, but his titers on that are super low, so it's another one where I question the usefulness. I am starting work again next week, and he will be home with a nanny.

This is exactly my worry with Connor. His pulmonologist was pushing for a flu vax pretty hard last fall, but now this fall, he's giving us a prescription for the antiviral because he doesnt think that Connor's immune system will hold any immunity from the vax anyway. We haven't done any titer testing (since he hasn't had any vaccines to check titers for) but we're judging this off of the illnesses he's had, the duration, the recurrence rate, etc. I am thinking that we might need to pick at least one and get titers checked like you're doing.

So far, with all of Connor's illnesses, none of them have been from a vaccine available disease (except Rubella, which he had last summer when he was too young to have gotten the vax anyway, we still have no idea where he got that from because everyone else in the family should be immune. Oh yeah, and Chicken Pox, which was very none-noteworthy, and he can't have that vaccine anyway) He had 6 ear infections in a row caused by haemophilus influenzae, but it was a non-typeable strain. His current ear infection is being caused by two different staphs and a rare bacillus. No HiB, no pneumoccocal, no flu (that we know of).

I'm not at all worried about hepatitis or polio so I guess my list of "candidate" vaccines are DTaP, HiB, Prevnar, and Flu.

[mamakay]

He had 6 ear infections in a row caused by haemophilus influenzae, but it was a non-typeable strain. His current ear infection is being caused by two different staphs and a rare bacillus.

Prevnar vaxed kids are more likely to get staph ear infections, so if he's already having issues with staph, I really wouldn't want to eradicate his pneumococcal flora.

http://www.ncbi.nlm.nih.gov/sites/en...indexed=google

Flumist has a higher effectiveness than the shot, so giving everyone else in the family the mist might be worth considering.

[suschi]

I would want to see the studies done in children with the same syndrome who were given the recommended vaccines.

For the record, my now 9 year old had open heart surgery to repair two holes in his heart and his underdeveloped right lung was removed. The RSV injection was suggested for him, I declined that but did start the routine vaccines about 1.5 months late (delayed due to surgery he had at 6 weeks of age). The 3rd round of shots almost killed him when he was 7.5 months old so I stopped all vaccines at that point. That was in Sept 99. I later found out that vaccines are only tested in HEALTHY infants, NOT infants with my son's syndrome (scimitar).

He's never gotten another vaccine and overall, has been healthier than most his peers, go figure.

Just wanted to share my personal experience.

[2boyzmama]

Originally Posted by mamakay

Prevnar vaxed kids are more likely to get staph ear infections, so if he's already having issues with staph, I really wouldn't want to eradicate his pneumococcal flora.

http://www.ncbi.nlm.nih.gov/sites/en...indexed=google

Flumist has a higher effectiveness than the shot, so giving everyone else in the family the mist might be worth considering.

See, I was thinking that Flumist was a no-go for our entire family because of the risk of shedding. No one in the family can get live viral vaccines because of Connor's immune deficiency.

Thanks for the link about Prevnar and staph...I need to research that further.

Unfortunately there are no good studies on vax sfety with 22q kids. There are some very small sample size studies, but only regarding the live viral vaxes, to determine the "safe" t-cell level for live viral vaxes. (which Connor's t-cell count is not "safe", so he has a medical exemption) Unfortunately there's nothing yet about immune response for the bacterial vaxes.

[applejuice]

See, I was thinking that Flumist was a no-go for our entire family because of the risk of shedding. No one in the family can get live viral vaccines because of Connor's immune deficiency.

This was exactly what I was told when my DH was in D stage of cancer.

Whatever happened to the "herd theory"? Why does that not apply here?

The biggest problem here is that it is hard to tell when doctors are being honest with us.

[CCChanel]

Originally Posted by applejuice

Whatever happened to the "herd theory"? Why does that not apply here?

I was just wondering this too... flumist doesn't seem like a 'for the good of the heard' vaccine.