could use some wisdom, very confused right now

[skyblufig]

I'm not sure where to start, so please bear with me if this is a bit scattered.  Before our oldest ds was born, we'd already decided not to vax our kids.  I have an insanely strong family history of autoimmune diseases -- every sibling and both parents have at least one AI disease, one sister and my dad have multiples.  I myself was diagnosed with RA after my daughter was born but am thankfully able to keep it in check with a careful diet, herbs and acupuncture.  My dd was diagnosed with pauciarticular juvenile RA at 2, but again we've been able to treat it quite successfully with supplements, acupressure and physical therapy.  My older ds is somewhere on the autism spectrum -- PDD-nos right now -- and seems to be settling into just a comfortable quirkiness as he gets older; his speech patterns are evolving well, he's engaged and curious, outgoing and affectionate. 

But now our younger ds is/has been having problems and I'm faced with some very tough decisions regarding vaxing.  This past December, he had his first reactive lung incident.  At the time, they classified it as bronchiolitis, gave him albuterol treatments and oral steroids and sent us home.  A few days later the wheezing came back and he was admitted to the hospital for a couple of days.  He was fine for a few months, but then in March had another wheezing attack which sent us back to the ER and another hospital stay.  They didn't want to diagnose asthma at his age, so again it was bronchiolitis.  Even on controlling meds along with rescue meds, he had yet another attack this past week with another hospital stay.  They actually transferred us to the bigger children's hospital from the small one our doctor is on staff at because the small one doesn't have a ped-ICU.  I honestly didn't realize how bad the situation was until I got in the front of the ambulance and the medics in back told the driver not to wait for the lights.  (it was about 3am and I hadn't slept in 2 days) That's when I got scared.  He is ultimately alright and on the mend, but at the follow-up appt with his ped (who is very supportive of our decisions) it was suggested that we seriously consider a couple of vaxes to help get us through the next few seasons, i.e., reduce the complications of anything we do catch. 

Never in a million years did I think we'd even be considering it, but here we are.  Do we get all of us a few of the respiratory-related vax's and hope that if any of us catch anything it's less severe?  Or do we keep on as we are and add in additional supplements and hope for the best?  I used to have 100% confidence in our decision.  Now after seeing my littlest guy so sick and not being able to breathe and hooked up to the matrix at the hospital... not so much.  I'm very concerned the vaxes would have lasting negative effects on ds1, dd and myself.  But I'm scared for ds2 as each attack has been worse than the last and none of the natural remedies seem to have any effect on him.

Thanks for reading so much, just trying to work through our options.  Any and all opinions welcome!

Jen

not sure where my signature went 

[mamakah]

I think it's time to begin re-researching each vax, this time through the eyes of a parent whose child has a health condition. I remember during my research I often read that complications with (X) disease were mainly in asthmatics, etc.  I wouldn't make any vax decisions until you have re-explored your options. I'm assuming your doctor is probably thinking flu, pertussis, and depending on you ds's age, hib or pneumococcal. I'm sure many other of the wise mamas here will have more detailed advice.

[Marnica]

First of all Im so sorry your son is having such a hard time. How scary for you all

I was confused about this statement "I'm very concerned the vaxes would have lasting negative effects on ds1, dd and myself"

You are considering a few vaxes for your son who is having breathing issues correct? Why would that have any impact on vaccinating yourself and your other children?

Of course I can't comment specifically because Ive never been in your shoes - but my son has in the past had a few scary breathing episodes where he was using a neubulizer. I truly believe to the depths of my sole that vaccines are not safe for my son. I too have alot of folks in my family with autoimmune issues from RA to MS in addition to tons of allergies. But I cannot say what Id do in your shoes. It seems that you guys have tried some natural things - are you working with and ND or just doing stuff on your own? Also what specific vaccines is your ped recommending?

[skyblufig]

Thanks to you both for replying (and reading all that!).  Yes, our family practice doc is recommending flu, pneumo, hib, and pertussis.  I can't reply in depth here right now, but will expound later when I get a chance -- basically, I'm very concerned that 1.) my younger ds's immune system is already so stressed from being sick on and off since Dec; has it had time enough to heal?  2.) my daughter's RA will worsen, 3.) my older ds will regress afa language skills and general social skills, and finally 4.) my own RA will worsen. 

It's such a rock and a hard place.  But having just watched ds2's blood oxygen dip into the lower 70's, I feel enormous responsibility because he's the youngest.  Not that I want to throw the rest of us under the bus, but clearly we've all had at least a few years to build up our immune systems.  Will check back later.

[mamakah]

So, your doctor is suggesting you ALL get vaxed?

[skyblufig]

Yes, to try and minimize what ds2 gets exposed to, and to try and temper the severity.  Neither ds1 nor dd have had any vaxes and dh and I haven't had any in over 20 years.  Our md is absolutely willing to do one at a time and wait as long as we'd like between them (if we decide on any).  Like I said, I never dreamed we'd be in this position -- where a mild cold for the rest of us turns into a very serious situation for ds2 very quickly. 

Would love to hear from as many folks as possible -- please share your opinions/experiences.  Thanks!

[emmy526]

Have you gone to see a pediatric pulmonlogist? I would recommend it. And i would def research the asthma/vax link too. 

pentacel insert:

http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm109810.pdf

i would also have your dr sign a statement saying your son/family will not be harmed or harmed in the future by the vaxes given, and in the event something adverse happens the dr takes full responsibility for your sons demise. 

DPT:

http://www.albionmonitor.com/free2/dpt.html

more info:

http://www.whale.to/vaccines/sspe1.html

[skyblufig]

Thanks for replying!  No, so far we've only dealt with our doctor.  It's been my experience with the older two that specialists tend to throw even more drugs at the problem, whereas our family practice doc is very much into nutritional, herbal and homeopathic support first, coupled with the least amount of drugs necessary to control the problem.  So when he actually suggested the vaxes, which he usually doesn't, I was sort of surprised.  This is not a typical md; we'd never ask him to sign a responsibility clause.  If he was a combative, close-minded individual who constantly harassed us to vax, sure, I could see doing that.  But that's definitely not who our md is.The responsibility lies 100% on our shoulders if we end up vaxing.  He, and we, have no way of guaranteeing that no harm will come to any of us either now or in the future.  But so far our experience with ds2 has been that very mild respiratory illnesses for the rest of us can turn very bad very fast for him.  Catching, say, pneumococcal disease would have serious implications for him.  And therein lies my dilemma. 

[emmy526]

i would still get a 2nd opinion from a pulmonologist. I have had asthma my entire life 45+yrs, and a pulmonary dr will help find what works to prevent  the symptoms from happening which will prevent him from developing bronchitis and such. Since i have taken an informative stance on my disease, i know what works for me and what doesn't..i know my triggers and stay away when possible..i have meds if needed when my symptoms warrent, but i manage to only really NEED them about twice a year now. .and i have had pneumoccocal disease....its terrible,  but my asthma wasn't the worst of it, the body aches and dizziness was....since then, my bouts of bronchitis havent been nearly as bad as they used to be... everyone's asthma is different.  My unvaxed 15yr old son developed asthma when he was 4mos old and had pneumonia.  He also had quite a few yrs of severe asthma attacks, and we had to do conventional meds with him at the time which  worked in moderation..he outgrew his asthma at age 9 and hasn't had a problem since...I attribute that to his body maturing naturally, minimal medical invasion, our lifestyle,  and and immune system that i cannot believe how strong he is.  

what kind of asthma controlling meds is your son on? Does he use a nebulizer at home everyday? Does he go to daycare? Is your home old and possibly have mold/mildew in places you dont see? do you have pets? Carpeting? 

[skyblufig]

Thanks again for replying, it's always good to hear from someone who's btdt!  Another question popped in my head:  if ds is on budesonide 2x/day and the package insert warns against being exposed to chicken pox and/or measles, that would contraindicate him getting the MMR since it's a live-virus vax, correct?   He's going to be on it for at least a month or two as a controlling med. 

[emmy526]

Is it a nasal spray or inhaler? And from what i'm reading about it, its more for allergies and to keep allergy symptoms from flaring up. Imo, it doens't sound like your son is getting enough of the right asthma medicine for his lungs. while the budesonide is prolly helping his allergies from setting off his asthma, the underlying cause is still asthma.  And there are so many triggers for that disease, i dont see how anyone can pinpoint where/how one gets it.  It is an inherited disorder as well as triggered by external influences.   And yes, any kind of steroid  is a contraindication for exposure to a live virus via vaccine or infected person. Do you use a nebulizer at home for breathing treatments? 

[skyblufig]

The budesonide inhalation suspension he's on is a corticosteroid used as a controlling med for reactive airway-type asthma in a nebulizer.  [http://www.drugs.com/pro/budesonide-inhalation-suspension.html]   He also has albuterol for the nebulizer in case of an acute attack, and we carry an albuterol inhaler for when we're out & about.  He doesn't have any allergies (yet).   That's excellent to hear that your son outgrew his asthma.  Most of the medical people he's seen seem confident that ds2 will outgrow his as well.  It's just getting him to that point as healthy as possible, kwim?  Thanks again for your input.

[emmy526]

A better alternative to albuterol is something called "Xopenex",imo...it doesn't have the side effects of albuterol and it lasts longer too..which means, less meds needed. I found my son not to be as jittery or hyper after using it instead. he liked it better too.  I heard of it thru my sis who is a respiratory therapist that works with kids with all kinds of asthmatic tendencies in a special care hospital.

[skyblufig]

Thanks for the tip emmy526 -- I'll keep that in mind if/when the albuterol needs replacing.  Right now, thank goodness, it's working quite well for him and we luckily haven't had any of the side effects kick in, other than an increased heart rate.  But that was only in the hospital when they had him on continuous alb.

And thanks too to the folks who pm'd me re: my original questions.  Your input is greatly appreciated!   I think we've just about settled on a course of action.  Happy Solstice everyone!