Primary Immune Deficiency

[2boyzmama]

Because I know that there are some scary smart people on here, I thought I'd post this and see if anyone knows anything.

My son Connor has a genetic syndrome (a chromosomal deletion). Up to this point, he's only had RSV Immunoglobulin once a month through RSV season (he has an airway deformity which put him at very very high risk of very serious complications from RSV) He did end up contracting RSV earlier this month despite the vaccines, but had a minor case of it thankfully.

Part of his syndrom is a Primary Immune Deficiency. His T-cell lymphocytes are chronically low due to an underdeveloped thymus gland. This kind of immune deficiency puts him at high risk of viral infections (a simple cold hits him HARD and takes him a long time to recover from). We've managed to keep him pretty darn healthy so far (through LOTS of proactive work from us!)

So, to the meat of my issue. He's being seen by an infectious disease specialist. A very nice dr, I feel comfortable he gives me a more complete picture than most drs. But he outright told me he's a believer in the vaccination program. Connor can not have any of the live virus vaccines because he would actually contract the illness the vaccine was designed to prevent. So that's a no brainer. But he stressed to me that he feels Connor really should get the bacterial vaccines.

Connor's immune tests show that he's perfectly capable of fighting off bacterial infections, and prior experience has proven that he can tolerate antibiotics in the Penicillin family. I pointed this out to the dr and told him that I felt pretty comfortable with our treatment options if Connor were to contract a bacterial infection. He agreed, but said that he's more worried about Connor contracting a secondary VIRAL infection and with his immune system in a weakened state from the bacterial infection, he'd have a much harder time fighting off the virus.

This is something I hadn't considered. I have scoured the literature available on his syndrome and find nothing about rates of vaccine reactions, so I can't compare rates of reactions per vaccine among kids of his syndrome. There is a high rate (much higher than the general population) of autism-like behaviors, learning disabilities, and psychiatric conditions in children and adults with his syndrome, but nothing breaks it out in the vaccinated and non-vaccinated group. Everything just states it as a common issue caused by the deletion. So I can't use that as a basis for any decision.

He had a pretty significant dairy sensitivity as a younger infant, so any vaccine containing casein was out of the question, but he's been able to tolerate me eating a good bit of dairy recently, so I think that within months he'll show little to no signs of it (although I haven't tried giving dairy directly to him yet). I really wanted to give him DTaP when he was younger because of his airway malformation, pertussis could have killed him, but I tried three different locations and couldn't find the one version of DTaP which didn't have casein. I figured it was a sign that I shouldn't give him the vaccine, so I stopped seeking it out.

So I'm stuck here. While I don't agree with mass-vaccination, I believe that vaccines have a place in the medical community, and my kid might just be one of those that truly could benefit from a few. But which ones? And when? And under what conditions? Because of his immune deficiency, find a few week time period where he's not sick is very difficult...normally I wouldn't think of vaccinating if he had, say, a runny nose...but with him finding him without some kind of illness is almost impossible. If I waited, he'd never get a vaccine, you know?

Thoughts? [polite thoughts and comments please, this journey with him from birth to diagnosis has been *painful* with so many decisions to be made...nothing is straight forward and easy as it is with "normal" children]

[katec67]

Unfortunately, I'm not one of the scary smart ones, but I am sure you will get some good advice here. I am still in the early stages of research. I started about 3 years ago reading a couple of books. Now that I have decided not to vax at all, I am delving into all the publications I can find.

I know how hard it is to make decisions for my kids, who don't have any unusual issues. I can't even imagine how difficult this decision must be for you.

The one thought that I keep coming back to is: do you have any concerns that his immune deficiency could make him more susceptible to vaccine injury?

Kudos to you for giving this so much thought.

[attachedmamaof3]

Not being able to get the live vaxxes will eliminate quite a few anyway.

MMR, Varicella, Rotavirus, Flu

You've already eliminated the DTaP.

Basically, I'm assuming your dr is concerned about Hib/pneumococcal/meningococcal??

You're going to be hard-pressed to find any vaccine data regarding children like yours. Unfortunately, most trials/studies include only healthy children, so you're kinda screwed there. What you have to weigh is the increased sensitivity that he may or may not have to the vaccines based on data for full-term, healthy infants/toddlers.

Your doctor knows your son. Do you trust him? Do you believe he has your best interest at heart?

If so, you may want to specifically look at the incidence of secondary viral infections with Hib (Hemophilius Influenzae type b), pneumococcal (s. pneumonaie) and meningococcal (neisseira meningitis) infections.

Your doctor may have this information if you ask.

I'll see what I can find as well.

[2boyzmama]

Thanks guys, it's helpful to have other view points!

[alegna]

I've seen some information that the strains in Hib especially, and prevnar to a lesser extent are really almost gone. They're not finding them anywhere.

So if those are the main vaxes being considered, and there is an incredibly low chance of him even coming into CONTACT with them... seems like it wouldn't be worth it.

You might try PMing Mamakay- I know she had some studies on Hib being all but gone.

-Angela

[13Sandals]

Hib/pneumococcal/meningococcal??

these are all bacterial vaccines. A bacterial vaccine against meningitis is not going to have ANY effect on a viral case of meningitis - it won't 'lessen' the duration, etc..there are no vaccines for viral meningitis or viral pneumonia. The only inactivated vaccines for viruses that I can come up with are Hep A, Hep B and the flu (not flumist). I'm a little suspicious of your doc's reasoning here. I would really press him for exactly what he thinks is the danger.

[2boyzmama]

No no, he doesn't think that Connor will pick up viral meningitis or pneumonia, but some other virus (any other virus) and that since he'd already be sick with the bacterial illness (whatever it may be) that he'll have a much harder time with the virus (and he already has a very hard time with viruses due to his immune deficiency). For example, he recently had a severe double ear infection, and while he was recuperating from that, he contracted RSV which really threw him for a loop. Another time that he had a bad ear infection, he picked up a stomach virus that had him vomiting severely for 8 days (my other son vomited for less than a day with the same virus).

So the worry is with a secondary viral infection not related to the bacterial infection, but made worse because of his immune deficiency.

Does that make sense?! LOL!

I am not interested in giving him any hep vaccines, I just don't see him having any risk factors for contracting those. I did consider it more for him than I did for my first son just because of how much time he spends in hospitals.

Flu I'm on the fence, and will be on the fence every flu season I think. The vaccine worries me, the ingredients, the side effects...but he's not a normal baby that will get the flu and get over it. The flu vaccine was created for babies like him (and older people)...those with immune deficiencies that are highly likely to have severe complications from influenza. I will revisit that issue as next fall comes closer.

So I guess that leaves me with Hib, Prevnar, and Menactra (is that the name of the meningitis vax?) And DTaP, if his dairy sensitivity continues to decrease. (I need to check Hib, Prev, and Mena for casein, too)

[tanyalynn]

I remember the same link alegna mentioned from mamakay, about hib being pretty much gone. But, one thing to look into for the pneumococcal strains--prevnar is only for 7 strains, I think. But, I think there's an adult version that's 23 strains. And it may be worth looking into the incidence of those strains and whether there's any data on kids with that version (maybe it didn't work well with kids, so they don't use it, I just don't remember). I don't want to make things more difficult, but you've got a very complicated situation already, and this may be something to think about.

[2boyzmama]

Thank you, Tanya, I will look into the pediatric vs adult version.

[By the way, happy unpacking! We've been there many times...many moves!]

I'ts just *so* hard being a special needs mom sometimes, I know this is the vax board, not the SN board, but questions like this don't quite fit either board! It's a vaccination decision, but it's heavily special needs based.

I guess let me try phrasing the question differently...under what circumstances do you all think you would consider particular vaxes? I've always believed that vaxes do have a place, they can be particularly helpful for the elderly, the chronically ill, or those with immune issues. Well, my son fits two of those three categories.

I understand all about promoting a healthy immune system, I know how minor many of the illnesses really are, and I've read all the potential adverse reactions. But, my son will never have an intact immune system, minor illnesses for him can be major, and some of the adverse reactions may be worth living with in our case. Many of you have an intense fear of Autism (just to use an example), but for me I have a much greater fear of him dying from the flu, and yes, the flu could kill him. I know all about the increase in childhood autoimmune disorders, but again, I'd take him with rheumatoid arthritis over him dying from pertussis.

So do you see my dilemma? These illnesses truly are potentially dangerous for him. I can't keep him in a bubble, he will eventually get exposed to a variety of bugs. All I can do is help support what little immune system he has through breastmilk, healthy diet, and proactive medical care. But just like I have to consider supplementing his diet due to his medical issues (sometimes breastmilk truly is not complete), I have to consider supplementing his immune system.

I don't know what my decision will end up being...thank you for any input!

[runes]

Originally Posted by 2boyzmama

I guess let me try phrasing the question differently...under what circumstances do you all think you would consider particular vaxes? I've always believed that vaxes do have a place, they can be particularly helpful for the elderly, the chronically ill, or those with immune issues. Well, my son fits two of those three categories.

the thing about vaccines given to people with special needs is that they are not tested on people with special needs. they only take the healthiest of the healthy babies with no family history of any immune issues for their clinical trials and automatically apply them across the population, and then even go so far to say that people with immune issues *need* the vaccine more than anyone else, and that is not a scientific or logical conclusion.

then this data is turned around to be used with children with major immune issues like your son's, and there is really no telling what kind of effect the vaccines might have. you also don't know how he might react to the diseases themselves.

this just makes the risk-benefit equation all that much harder to work through.

[2boyzmama]

kidspiration, thank you. That gives me more information to take into account in this decision.

Part of what made the decision easier for giving him Synagis (RSV immunoglobulin) was because there *was* information available on the effects of the vaccine in children with cardiac or pulmonary issues. So I could compare the studies to him with a certain degree of trust. Unforunately I can't do that with Hib, Prevnar, Menactra, or DTaP.

There are some studies out there for flu vaccine and special needs children (specifically pulmonary, but not immune disorder), but there are also so many other factors to take into account. I'm not even going to consider flu again until late this summer.

Sigh...

[alegna]

Since it's not safe for him to receive live vaccines, I think the only one I would consider is DTaP- just for the pertussis. I wouldn't do it for MY children just because we have a family history of reactions to the tetanus portion and you can't get pertussis without it, but in your situation, I would consider it.

The bacterial vaxes I really don't feel do enough good to be worth it. And I wouldn't want to chance letting a more virulent strain take hold with the void left.

If I felt that his immune system was strong enough to handle live vaxes, I would consider MMR and CP.



-Angela