Upcoming appt with Infectious Disease specialist **UPDATE

[2boyzmama]

My son has a genetic syndrome involving a chromosomal deletion. One way he is effected is he has a Primary Immune Deficiency. We are not sure which specific PID he has, or how severe it is because I haven't allowed him to receive any vaccines which we can use as a control to test titers and immune response. We are guessing that it is moderate judging on his t-cell counts and his reactions to illnesses and antibiotics.

He has an appointment coming up Nov 10th with his Infectious Disease specialist. This appointment is *supposed* to be discussing ways to be proactive about preventing illness...every previous appointment we've worked on oulining treatment plans for when he contracts an illness. With Winter coming, I wanted to be more proactive.

I know this dr is very pro-vaccination, although he did write us a medical exemption against the live-virus vaccines due to Connor's t-cell count. Aside from general immune-boosting ideas, I also want to use this hour-long appointment to ask the questions that I can't seem to find good answers to regarding other vaccines. I need help! So far I know I want to ask:

1. DTaP/TDaP and Pertussis transmission. He has said in the past that it's important my dh and I get a pertussis booster to protect Connor. My research hasn't found anything proving this, but lots questioning it. Also nothing proving that it DOESN'T prevent transmission.

2. Flu shot and transmission...again, should dh and I consider flu vax? I'm *almost* positive that I won't give the flu shot directly to Connor, but *might* consider myself and my dh, if I can find enough research proving it prevents transmission. I haven't found that.

3. Hep...for some reason this dr has said numerous times that we need to get this one for Connor, but WHY on Earth?? I did consider it for 2 seconds longer than I did with my other son just because Connor has had several surgeries and has more on the horizon, and there's a potential for a blood transfusion. That was the ONLY reason I could think that he might need a Hep B shot.

4. Serum replacement...specifically HiB and Prevnar. Connor already had a severe non-typeable haemophilus influenzae infection that required a PICC line to treat...what would receiving the HiB or Prevnar vaccine mean for him and the other strains not covered?

What else? What other questions are out there that you'd love to ask an Infectious Disease dr if given the chance?

I have never been anti-vaccine, instead I take each disease/vaccine one at a time and consider the risks/benefits for MY child and OUR situation. The fact for us is we have to consider that the flu really could KILL Connor, not just make him miserable for a week or two. Pertussis scares the jeepers out of me, for good reason-his airway is malformed and very unstable, and if there were a safer more effective vaccine available for that I would definitely give it to him. Same with flu.

Anyway, here's your chance to give me specific questions and I'll do my best to get an answer.

[MissRubyandKen]

Interesting. Hope the appt goes well and you get some answers that actually mean something to you. I'll have to put my thinking cap on (if the baby will let me) to see if I can come up anything else. Those are good questions, especially 1. I know you aren't asking for answers here, but as for #1, I just don't think the proof is out there right now. If it is I haven't found it either. I believe the basis for recommending it to prevent transmission is actually to reduce the likelihood. If the shot successfully reduces symptoms and shortens duration of pertussis then the likelihood of transmitting it to another is also lessened. Perhaps you can ask the doc if there is proof that it prevents transmission and if no then what is the recommendation is based on.

[lirpasirhc]

best wishes. i hope that you get some answers.

one thing that i would think about is that hospitalizations expose kids (and adults) to staph. Prevnar seems to increase the chances of catching a serious staph infection b/c the pneumococcal bacteria seem to release extra hydrogen peroxide keeping staph from multiplying.

[Jazmommie]

I would also wonder what natural /alternative ways to keep him and you all healthy--Vit C ,zinc,cod liver oil,probiotics,echinacea???
Most Mds do not know about some of these-and maybe you could do some research before the appt and teach him .??

[bdavis337]

I don't think Connor is eligible for the flu shot anyway. All the info I've read on it says that kids with airway issues and immune compromise shouldn't get it. Plus, isn't he allergic to eggs? There is egg ingredient in the shot. Or perhaps that's JUST the flumist live version that he's not old enough for anyway. But I'd avoid the flu shot for him, perhaps not for the adults in your house though, if it would help potentially prevent transmission.

[alegna]

Originally Posted by 2boyzmama

1. DTaP/TDaP and Pertussis transmission. He has said in the past that it's important my dh and I get a pertussis booster to protect Connor. My research hasn't found anything proving this, but lots questioning it. Also nothing proving that it DOESN'T prevent transmission.

My understanding (could be wrong...) is that one of the reasons that the pertussis vax doesn't prevent carriage and transmission is that it's a vaccine against the *toxin* created by the bacteria. Not a vax against the bacteria itself.

*If* that's the case, then how could vaxing against the toxin protect against carriage and transmission of the bacteria?

good luck!

-Angela

[2boyzmama]

Originally Posted by lirpasirhc

best wishes. i hope that you get some answers.

one thing that i would think about is that hospitalizations expose kids (and adults) to staph. Prevnar seems to increase the chances of catching a serious staph infection b/c the pneumococcal bacteria seem to release extra hydrogen peroxide keeping staph from multiplying.

OH, good one, I forgot about that. Connor did have a doubel staph ear infection recently, which luckily just one dose of abx took care of (surprised me, because it's been really difficult to treat ear infections in the past)

Originally Posted by Jazmommie

I would also wonder what natural /alternative ways to keep him and you all healthy--Vit C ,zinc,cod liver oil,probiotics,echinacea???
Most Mds do not know about some of these-and maybe you could do some research before the appt and teach him .??

Yes, this is exactly the thing that I think will be most useful to us. I've been doing a lot of research, but it's so frustrating that everything is based off of "normal" children. I can't seem to find much about special needs children. I have to assume that what helps boost a normal child's immune system would also boost his, but I really don't know.

Originally Posted by bdavis337

I don't think Connor is eligible for the flu shot anyway. All the info I've read on it says that kids with airway issues and immune compromise shouldn't get it. Plus, isn't he allergic to eggs? There is egg ingredient in the shot. Or perhaps that's JUST the flumist live version that he's not old enough for anyway. But I'd avoid the flu shot for him, perhaps not for the adults in your house though, if it would help potentially prevent transmission.

Yeah, flumist is contraindicated for those with airway issues and immune issues, but the shot is heavily marketed towards them. Yet there's no studies on those children. That frustrates me! There were studies available for special needs children and the RSV vaccine, which is how I was able to make an educated decision on whether to allow that during last RSV season. But although everything you read about flu shot says it's ultra important for those with airway and immune issues to get the shot because they're at highest risk for flu complications. But yet there's no study to back up that it's SAFE for them. I don't get it... Oh, and no, he's not allergic to eggs. Dairy and soy, not egg.

Originally Posted by alegna

My understanding (could be wrong...) is that one of the reasons that the pertussis vax doesn't prevent carriage and transmission is that it's a vaccine against the *toxin* created by the bacteria. Not a vax against the bacteria itself.

*If* that's the case, then how could vaxing against the toxin protect against carriage and transmission of the bacteria?

good luck!

-Angela

That's my understanding as well, that it works against the toxin, not the bacteria. But (perhaps not surprisingly) that information is hidden in code or something whenever I read studies!!! I'm hoping either he'll be able to explain it better to me, or he'll admit that no one really knows. We'll see I guess.

[alegna]

Originally Posted by 2boyzmama

That's my understanding as well, that it works against the toxin, not the bacteria. But (perhaps not surprisingly) that information is hidden in code or something whenever I read studies!!! I'm hoping either he'll be able to explain it better to me, or he'll admit that no one really knows. We'll see I guess.

I don't have time to go look right now, but if you find the ingredients of the vaccine you might get a clue. I know that in the tetanus portion for example, it's listed as tetanus toxoid (thereby obviously the toxin, not the bacteria...)

-Angela

[MissRubyandKen]

CDC's Pink Book, pertussis chapter, page 8-

Acellular pertussis vaccines are subunit vaccines that contain
purified, inactivated components of B. pertussis cells.

Infanrix (GlaxoSmithKline) contains
three antigens, mostly pertussis toxin (PT) and FHA.
Tripedia (sanofi pasteur) contains two components, FHA
and PT, in equal amounts. Daptacel (sanofi pasteur) contains
five components, PT, FHA, pertactin, and fimbriae types 2
and 3.

In my understanding the pertussis vaccines are multi-component, not just PT. But from what I've read it is admitted that they know very little about how the different parts of the inactivated bacteria might affect the efficacy of the vaccines.

[MissRubyandKen]

Any update yet?

[2boyzmama]

the appt is monday.

just for clarification...i am not vaccinating him monday, i'm just going in to ask specific questions a pediatrician can't answer.

[MissRubyandKen]

Hope your appt goes well. If you see this before you go in one other thing you could ask, is a pertussis vaccine available singly? I have read it is, but haven't found the actual info anywhere. And if not, why? Just to increase uptake of the D and T components or because of efficacy?

[2boyzmama]

Originally Posted by MissRubyandKen

Hope your appt goes well. If you see this before you go in one other thing you could ask, is a pertussis vaccine available singly? I have read it is, but haven't found the actual info anywhere. And if not, why? Just to increase uptake of the D and T components or because of efficacy?

good question, and i'll def ask, but if i remember, it has to do with the diptheria toxoid...gosh, i'm brushing off some cob webs, but isn't dip toxoid actually used in several vaxs??

[alegna]

Originally Posted by MissRubyandKen

Hope your appt goes well. If you see this before you go in one other thing you could ask, is a pertussis vaccine available singly? I have read it is, but haven't found the actual info anywhere. And if not, why? Just to increase uptake of the D and T components or because of efficacy?

There is no pertussis solo vax available. I'm pretty sure of that.

-Angela

[2boyzmama]

Appt was a bit frustrating...first we saw three residents who all wanted to know his entire history and all three of them wanted to examine him themselves. He's at an age now where he's not always so thrilled with people messing with him!

Then they left and the dr came back with all the residents still in tow. We talk a bout how his health has been over the last several months, what illnesses he's had, how we treated them, how he responded, etc. Then I started asking some specific questions.

1. Supplements/vitamins. He says "not enough research has been done on their effectiveness, but as long as they're not fat soluble, there probably won't be any harm. But again, no research has been done." Hmm, interesting that he's pointing out lack of research, isn't it?

2. DTaP and transmission of pertussis. I need to go look this up, because he said that the diptheria and tetanus components do indeed protect against the toxoid, but that's not true of the pertussis component. It DOES protect against the bacteria, thereby preventing transmission. It's not a perfect vaccine, he did admit that its efficacy rate is rather low in some populations, but he said that we absolutely should be vaccinating everyone in the household. I told him about my reaction to the old DTP as a child, and that the dr told my mom to never again give me that vaccine, and he said that if I'm contraindicated to the old vaccine, I'm still contraindicated. So the only person who might be eligible in our family to receive a booster is my husband. Hmm... Oh, and when I pointed out that even the CDCs webpage says that it's not clear if it prevents transmission, he said that that's only because there hasn't been a large study, but that there are studies available from Canada that prove it. I asked him to provide me links, I'll share those when he gets them to me.

3. I did ask about serum replacement, he said that it's basic biology, but that vaccines like HiB and Prevnar protect against the worst strains, so it's still a good idea to give those vaccines.

4. I told him what the pulmonologist said about his doubts that Connor could mount an appropriate immune response to the flu vaccine, so gave us a prescription for Tamiflu to keep on hand all winter, and he said that while it might be true, there's a chance that the vaccine could help him some, and it definitely won't hurt him any. Uh huh.

He did describe Connor's immune deficiency to me a bit more, he said that it's not his body's ability to produce antibodies, lab work shows that that function is normal. But his cellular immune function is compromised, so basically what it means is that when he's exposed to a bug, he should be able to produce antibodies, but his body might not build lasting immunity. Unfortunately previous illnesses have also shown that his antibody function may not be quite normal, hence him having chicken pox for 9 weeks or haemophilous influenzae for 8 weeks and 6 rounds of abx.

So I really don't know what to think about his immune function. The dr said to the residents "this baby is a bit of an enigma, his lab work suggests that he should be a rather sick little guy, yet he's stayed relatively healthy requiring only few hospitalizations. GIven his medical history I would not have even consented to immune testing if not for his underlying diagnosis of DiGeorge Syndrome (22q deletion)." He told me there's no need to limit his public exposure, just to stay away from known sick people (duh).

So, now I'm off to research more about pertussis. Grr. Oh, and flu, I need to remind myself why I decided not to give hubby and myelf flu vaxes...

[MissRubyandKen]

Everything I have read about the acellular pertussis vaccine says that it always contains PT (pertussis toxoid), but the different brands have different components otherwise, and that the PT is necessary to the vaccine efficacy as it lessens duration and symptoms, whereas the other components are somewhat controversial as to there effects. If I'm remembering correctly even the CDC's pertussis chapter admits they do not fully understand pertussis immunity anyway, as do the product inserts for the different brands of the acellular pertussis vaccines.

[MissRubyandKen]

Oh yeah, sorry your appt was frustrating! Was there any value in it at all for you? Are you any closer to making any decisions? I personally would get the Tdap IF I thought it would help at all with even reducing transmission, but you are contraindicated for it anyway.

[2boyzmama]

Originally Posted by MissRubyandKen

Everything I have read about the acellular pertussis vaccine says that it always contains PT (pertussis toxoid), but the different brands have different components otherwise, and that the PT is necessary to the vaccine efficacy as it lessens duration and symptoms, whereas the other components are somewhat controversial as to their effects. If I'm remembering correctly even the CDC's pertussis chapter admits they do not fully understand pertussis immunity anyway, as do the product inserts for the different brands of the acellular pertussis vaccines.

THat's what I'm going to be researching...because I understood the same thing!! Does anyone know how to research Canadian articles? Is that a stupid question?

Originally Posted by MissRubyandKen

Oh yeah, sorry your appt was frustrating! Was there any value in it at all for you? Are you any closer to making any decisions? I personally would get the Tdap IF I thought it would help at all with even reducing transmission, but you are contraindicated for it anyway.

Well, the appt wasn't a total waste, I got a new weight/height, which is important given his failure to thrive history; I got a better understanding of his immune function; and it was good to hear from a dr that he's doing WELL for once!

[MissRubyandKen]

Originally Posted by 2boyzmama

THat's what I'm going to be researching...because I understood the same thing!! Does anyone know how to research Canadian articles? Is that a stupid question?


Well, the appt wasn't a total waste, I got a new weight/height, which is important given his failure to thrive history; I got a better understanding of his immune function; and it was good to hear from a dr that he's doing WELL for once!

Glad to hear that. As for the Canadian articles question, do you mean how to specifically find Canadian articles?