Laryngomalacia & pertussis vacc

[springmum]

Hello

My son (now 4 months) has laryngomalacia (a floppy airway) and I am wondering if there is anyone else with a child with this and what your decision was on the pertussis vacc.

A little background

He had Pentacel at 2.5 months (my informed decision at the time due the floppy airway) which he reacted to (inconsolable crying for 2 hrs, mild eczema, personality changed until last week, food sensitivities)

He has stopped breathing (including lips turning blue) and often chokes very badly on his own drool



I'm not continuing my delayed vacc schedule until further notice, although I do have the whooping cough thoughts in the back of my mind, since I know how vulnerable my little guys' airway already is.


Has anyone else been in my position and what did you decide to do?

I read and read until my head hurts and still don't know (and will not vacc until I am sure, if at all)

Thank you

[Pyrodjm]

DD has laryngomalacia. We won't be doing any vaxes. I don't trust them.

I am so sorry your son had what sounds like a pretty serious reaction. In your shoes I would not feel comfortable giving him any more vaccinations.

[ZoeyZoo]

Originally Posted by springmum

He has stopped breathing (including lips turning blue) and often chokes very badly on his own drool

I don't have a child with that condition. I just wanted to point out there are a number of respitory reactions to DTaP. It is believed that the Pertussis vax is the cause.

[2boyzmama]

Hi!

My son has laryngo/tracheo/broncho malacia (yes, all three!) as well as a long list of other malformations all caused by 22q deletion syndrome and Pierre Robin Sequence. I know very well the debate you're going through right now, because I went through the same one many times! If you look back through my posts, you'll find that I've posted many times in this forum for information on vaccinating special needs babies, I've also posted over in the special needs forum (in fact, I just posted one there yesterday specific to vaxing a special needs baby)

Of course no one here can answer this question for you, but what helped me was to discuss with my son's pulmonologist exactly how he thought pertussis might effect Connor (i.e. because of his bronchomalacia, he is an inefficient cougher, so he can't clear his lungs well, and because of his laryngomalacia he has a lot of problems with secretions, and because of the narrowing of his airway, inflammation is very problematic). Then I asked what kind of treatment options were available to us (inhalers, nebulizers, oral/nasal steroids, CPAP, ventilator). Then I researched some of the less mainstream treatments for pertussis (vitamins).

Once I was armed with that information, I researched the rate of pertussis over the last several years in my immediate area and any area we might visit with him (i.e. grandma's house). Then I researched effectiveness rates for the vaccine after each dose. Then I researched the ingredients in the vaccine, knowing that he was already showing some food allergies (turns out that he has a dairy allergy and one of the brands of DTaP has some casein in it). Then I called every family member and asked about any reactions they had experienced (myself and my younger brother both had seizures following our 4th dose of the old DTP and were advised to never have another dose)

So as you can see, it was a long drawn out process!! I can tell you that in the end, for us, we decided not to do it, but it literally nearly came down to a coin toss. I was very afraid of pertussis. Really it was discovering the casein in the formulation and me unable to find a clinic in my first three phone calls that carried the other brand that made me decide not to do the vax.

In hindsight, I think it was the right decision. We did not know it at the time, but my son also has a primary immune deficiency (t-cell deficiency due to an underdeveloped thymus gland, known as DiGeorge Syndrome, which is another name for 22q deletion) Our experience with the infections and treatments he's had to this point suggest that his body is not capable of mounting an appropriate immune response to illness, and probably not to vaccines either (and that is coming from his pulmonologist who was the one initially encouraging me to do pertussis and flu vax if nothing else) Connor has a medical exemption against all live-virus vaccines due to his immune deficiency, and I have filed a philosophical exemption against all the rest. FOr now. I re-evaluate constantly as more research comes out on his syndrome.

Good luck with your decision!!! I suggest you post this over on the special needs board, too, many time we special needs mamas have a bit of a different perspective than most moms because we have to face the reality that our children really could be the 150 a year that die of chicken pox, you know?

[springmum]

Thank you for your input.. off to the special needs forum....