Time for Pneumovax, VERY nervous

March 15, 2012

So yesterday went great at UCLA and its time to give the vax and see if she

makes and holds the titers. Problem is, we have had VERY VERY bad reactions with

vaccines that lasted MONTHS. I not pro vax anyway but I understand the need to

do this, we couldn't start treatment and went though years of hell because I

wouldn't allow another vaccine to be given for this test and I'm worried if she

does crash we will end up in the same position. From talking to other parents

with pyroluric kids vax's are bad news for them, I can't remember the why but

when I heard in detail how they mess with them it made sense, wish I had saved

that email! I am drawing a total blank on how to proceed here if I don't want to

vax.

11 CVID

March 15, 2012

,

I'm sorry you are faced with such a hard decision. We would be in the

same boat if we had to trial off and retest. I will not allow another

pneumovax. Our last reaction to that vax lasted months (at least) as

well. I guess you have to weigh the risk vs benefit. Is she still

getting sick? What is the risk of just waiting and seeing how she does

clinically versus giving the vax? If we are faced with this decision we

will wait it out and see how our son does clinically before we would

give another vax and risk the side effects from that. If he failed to do

well clinically then I'd have to consider our options, but I wouldn't do

it just for the sake of testing. This may not be a popular opinion, but

it is one that was formed out of our hard earned experience.

Caelan 12 CVID, Subq Hizentra

On 3/15/2012 12:45 PM, bluetaelon@... wrote:

>

> So yesterday went great at UCLA and its time to give the vax and see

> if she makes and holds the titers. Problem is, we have had VERY VERY

> bad reactions with vaccines that lasted MONTHS. I not pro vax anyway

> but I understand the need to do this, we couldn't start treatment and

> went though years of hell because I wouldn't allow another vaccine to

> be given for this test and I'm worried if she does crash we will end

> up in the same position. From talking to other parents with pyroluric

> kids vax's are bad news for them, I can't remember the why but when I

> heard in detail how they mess with them it made sense, wish I had

> saved that email! I am drawing a total blank on how to proceed here if

> I don't want to vax.

>

> 11 CVID

>

March 15, 2012

No she's not still getting sick, knock on wood she's been off SCIG for 7 months

and only had 3 infections, only one required abx for a sinus infection if I

remember right which was triggered from a long term severe allergic reaction

that filled her sinuses up with mucus which got infected. The other 2 were minor

colds, the last one she finally kicked the day after I gave her a large dose of

Vit D (she has a history of low D which effects the immune system). I just wish

I had more answers and I get the feeling there really isn't one.

---- Herzbergs <skgcifamily@...> wrote:

> ,

>

> I'm sorry you are faced with such a hard decision. We would be in the

> same boat if we had to trial off and retest. I will not allow another

> pneumovax. Our last reaction to that vax lasted months (at least) as

> well. I guess you have to weigh the risk vs benefit. Is she still

> getting sick? What is the risk of just waiting and seeing how she does

> clinically versus giving the vax? If we are faced with this decision we

> will wait it out and see how our son does clinically before we would

> give another vax and risk the side effects from that. If he failed to do

> well clinically then I'd have to consider our options, but I wouldn't do

> it just for the sake of testing. This may not be a popular opinion, but

> it is one that was formed out of our hard earned experience.

>

> Caelan 12 CVID, Subq Hizentra

>

> On 3/15/2012 12:45 PM, bluetaelon@... wrote:

> >

> > So yesterday went great at UCLA and its time to give the vax and see

> > if she makes and holds the titers. Problem is, we have had VERY VERY

> > bad reactions with vaccines that lasted MONTHS. I not pro vax anyway

> > but I understand the need to do this, we couldn't start treatment and

> > went though years of hell because I wouldn't allow another vaccine to

> > be given for this test and I'm worried if she does crash we will end

> > up in the same position. From talking to other parents with pyroluric

> > kids vax's are bad news for them, I can't remember the why but when I

> > heard in detail how they mess with them it made sense, wish I had

> > saved that email! I am drawing a total blank on how to proceed here if

> > I don't want to vax.

> >

> > 11 CVID

> >

>

March 16, 2012

I never thought to ask if they will require failure of more then just pneumo, no

way in hell I would be willing to try any other vax's. She's been doing

fantastic off IG, I'm just worried of the " what if " you know? I think I have

PTSD from her first 6 years and the constant life threatening infections that

went away with IG. There is that terror that it might come back even though

there is a very good chance it was just caused by the severe vitamin

deficiencies. Were hoping to move out of CA this summer so we would be leaving

UCLA anyway, not sure how to handle that either. We were tied to CA due to CCS

covering infusions but if she's doing fine without we don't need to stay here.

What happens when you move when the kid is doing well off therapy and you have

to start from scratch with a new Dr?

---- " cerdaclan@... " <cerdaclan@...> wrote:

>

> , I understand your position. One of my kiddos has a flu like reaction

to pneumovax. Perhaps if your daughter is doing fine off immunoglobin, you

could wait? Having been an x-ucla ian, I was always worried about the constant

recommendations for more vaccinations to check titer response. In the end, my

daughters were taken on and off immunoglobin 3 times and re-vaccinated with

pneumo. They demonstrated an inability 5 times to not respond to pneumo and

prevnar. When they did not respond to pneumo or prevnar, they wanted to

vaccinate with meningitis. I finally said no.....no more. They are now 9 and

11 and were re-vaccinated with pneumo for the FINAL time 16 months ago and did

not respond. They have a new immuno who has realized that all the vaccinations

in the world are not going to change things. They have also proven they cannot

repond to HIB, pertussis and diptheria. At some point, I had to wonder if they

were causing further damage to their immune system by vaccinating them

repeatedly with things they could not respond to and at some point, it seems

abusive. However, we were also put in a position that, if we did not vaccinate

them, they would not get the immunoglobin they needed. Once off, we had to

re-vaccinate them to prove they needed it, yet again.

>

> If she gets sick again and needs immunoglobin, you may likely be faced with

the decision to vaccinate her in order to get both the support of the physician

and the approval of your insurance company for coverage.

>

> Good luck with your decision.

>

> Terri

> Mom and both daughters with Combined Immune Deficieny

>

> > > >

> > > > So yesterday went great at UCLA and its time to give the vax and see

> > > > if she makes and holds the titers. Problem is, we have had VERY VERY

> > > > bad reactions with vaccines that lasted MONTHS. I not pro vax anyway

> > > > but I understand the need to do this, we couldn't start treatment and

> > > > went though years of hell because I wouldn't allow another vaccine to

> > > > be given for this test and I'm worried if she does crash we will end

> > > > up in the same position. From talking to other parents with pyroluric

> > > > kids vax's are bad news for them, I can't remember the why but when I

> > > > heard in detail how they mess with them it made sense, wish I had

> > > > saved that email! I am drawing a total blank on how to proceed here if

> > > > I don't want to vax.

> > > >

> > > > 11 CVID

> > > >

> > >

March 16, 2012