RE: Awful labwork. but clinically ok?

[Guest guest]

Im not that much of an expert but I will offer this: my son has been on

IVIG for a year based mostly on clinical. His response to titers are low

but IGGs pretty normal. He just was constantly really sick with sinus

infections and they didn't clear up.

So my personal advice is go with your gut and your child if he isn't sick

maybe he can't wait a bit longer and build up some immunities, if that even

makes sense??

e (mom to Jake 6 SAD)

[Guest guest]

Thank you so much for your reply. I really appreciate it.

Melody

From: [mailto: ] On Behalf Of

e Salamone

Sent: Thursday, February 16, 2012 7:51 AM

Subject: Re: Awful labwork. but clinically ok?

Im not that much of an expert but I will offer this: my son has been on

IVIG for a year based mostly on clinical. His response to titers are low

but IGGs pretty normal. He just was constantly really sick with sinus

infections and they didn't clear up.

So my personal advice is go with your gut and your child if he isn't sick

maybe he can't wait a bit longer and build up some immunities, if that even

makes sense??

e (mom to Jake 6 SAD)

[Guest guest]

Thank you so much for your reply. I really appreciate it.

Melody

From: [mailto: ] On Behalf Of

e Salamone

Sent: Thursday, February 16, 2012 7:51 AM

Subject: Re: Awful labwork. but clinically ok?

Im not that much of an expert but I will offer this: my son has been on

IVIG for a year based mostly on clinical. His response to titers are low

but IGGs pretty normal. He just was constantly really sick with sinus

infections and they didn't clear up.

So my personal advice is go with your gut and your child if he isn't sick

maybe he can't wait a bit longer and build up some immunities, if that even

makes sense??

e (mom to Jake 6 SAD)

[Guest guest]

Anyone else have any advice?

Melody

From: [mailto: ] On Behalf Of Doug &

Melody Pohla

Sent: Wednesday, February 15, 2012 10:09 PM

Subject: Awful labwork. but clinically ok?

Hi everyone! I mostly lurk for the good info I get here so most of you may not

know who we are. I have 3 boys who have immunodeficiency secondary to their

Mitochondrial disease. My middle son was on IVIG for almost a year and we had to

trial him off as my dh lost his job and we could only afford to pay for the

COBRA, but didn’t have any money left to actually use it. He has done

surprisingly well since trialing off and continues to hold his own illness-wise.

My oldest son has recently had issues with his titers as well and has become a

non-responder to his pneumo vaxes like his younger brother. My youngest has had

low Ig levels, but has managed to hold on to enough of his titers to where we

were not overly concerned. The immuno has been pushing us to start sub-q for the

older 2 boys due to their pneumo titers, but we have held off because they have

clinically been doing well enough…no life-threatening illnesses and they

bounce back in a normal time frame and they have not had illness upon illness

upon illness either. They have had a handful of whatever is going around each

sick season...not the healthiest kids in their class, but certainly not the

sickest either. The other factor that has been holding us back is the cost. We

don’t have Medicaid and since the older boys already have feeding tubes and O2

at night and everything else, the 20% OOP after their deductibles are killing us

financially.

That brings me to today. We finally got our immunology labs back from their appt

in Dec. They had the normal labs drawn…the Ig levels were pretty run of the

mill for them. Their pneumo titers were surprising. My middle son (who was on

IVIG before) had only 1 over 2.0 and considered protective…that is normal for

him. But, SEVEN were measured at <0.3, which leads me to believe those were

undetectable. My oldest was only protective to one of 14 (down from 4 of 14 at

the previous draw) and my youngest, who has responded to vaxes fairly well up

until now only has protective levels to 4 of 14 (down from 8 of 14 at the

previous draw). The older 2 used to respond well enough, but they eventually

lost the ability to mount a response to the Pneumovax and are considered

non-responders now. In seeing these results, I am feeling as though my youngest

is following his brothers with their immunological decline.

My question is, with the labs they have now, would you continue to see how they

do since they are doing ok clinically? Or would you start them on infusions

given the labwork? Quite frankly, I was totally ok with letting them be until I

saw how low my middle son’s are. Half are not even able to be accurately

measured because they are so low and that scares me. Just looking for some

feedback as to what to do now…before we talk to the immuno and see what she

thinks. I know she is all for them going on treatments, but I am not sure we

have a leg left to stand on to put her off any longer…and I am not sure at

this point that we should. Thanks for any insight you can share with me.

Melody, mom to 3 little boys with immune deficiency secondary to Mito

[Guest guest]

Anyone else have any advice?

Melody

From: [mailto: ] On Behalf Of Doug &

Melody Pohla

Sent: Wednesday, February 15, 2012 10:09 PM

Subject: Awful labwork. but clinically ok?

Hi everyone! I mostly lurk for the good info I get here so most of you may not

know who we are. I have 3 boys who have immunodeficiency secondary to their

Mitochondrial disease. My middle son was on IVIG for almost a year and we had to

trial him off as my dh lost his job and we could only afford to pay for the

COBRA, but didn’t have any money left to actually use it. He has done

surprisingly well since trialing off and continues to hold his own illness-wise.

My oldest son has recently had issues with his titers as well and has become a

non-responder to his pneumo vaxes like his younger brother. My youngest has had

low Ig levels, but has managed to hold on to enough of his titers to where we

were not overly concerned. The immuno has been pushing us to start sub-q for the

older 2 boys due to their pneumo titers, but we have held off because they have

clinically been doing well enough…no life-threatening illnesses and they

bounce back in a normal time frame and they have not had illness upon illness

upon illness either. They have had a handful of whatever is going around each

sick season...not the healthiest kids in their class, but certainly not the

sickest either. The other factor that has been holding us back is the cost. We

don’t have Medicaid and since the older boys already have feeding tubes and O2

at night and everything else, the 20% OOP after their deductibles are killing us

financially.

That brings me to today. We finally got our immunology labs back from their appt

in Dec. They had the normal labs drawn…the Ig levels were pretty run of the

mill for them. Their pneumo titers were surprising. My middle son (who was on

IVIG before) had only 1 over 2.0 and considered protective…that is normal for

him. But, SEVEN were measured at <0.3, which leads me to believe those were

undetectable. My oldest was only protective to one of 14 (down from 4 of 14 at

the previous draw) and my youngest, who has responded to vaxes fairly well up

until now only has protective levels to 4 of 14 (down from 8 of 14 at the

previous draw). The older 2 used to respond well enough, but they eventually

lost the ability to mount a response to the Pneumovax and are considered

non-responders now. In seeing these results, I am feeling as though my youngest

is following his brothers with their immunological decline.

My question is, with the labs they have now, would you continue to see how they

do since they are doing ok clinically? Or would you start them on infusions

given the labwork? Quite frankly, I was totally ok with letting them be until I

saw how low my middle son’s are. Half are not even able to be accurately

measured because they are so low and that scares me. Just looking for some

feedback as to what to do now…before we talk to the immuno and see what she

thinks. I know she is all for them going on treatments, but I am not sure we

have a leg left to stand on to put her off any longer…and I am not sure at

this point that we should. Thanks for any insight you can share with me.

Melody, mom to 3 little boys with immune deficiency secondary to Mito

[Guest guest]

Each situation is individual, and you are right to look at the whole

picture. If you are loathe to start the IVIG right now, you could try

repeating the pneumovax, and see if it just takes them a second vaccine to

hold the titers. Honestly, it it were me, I probably would start the IVIG

if I could afford it at all. It would only take one big infection to make

you regret not starting.

We applied for the EDCD waiver and got Medicaid 8 months ago for our son,

which has really helped with this year's out-of-pocket expenses.

Mindy, mom to , 9, autism, hypogammaglobulinemia, plus

neuro/muscle/autoimmune disease

> Anyone else have any advice?

>

>

>

> Melody

>

>

>

> From: [mailto: ] On Behalf Of

> Doug & Melody Pohla

> Sent: Wednesday, February 15, 2012 10:09 PM

>

> Subject: Awful labwork. but clinically ok?

>

>

>

>

>

> Hi everyone! I mostly lurk for the good info I get here so most of you may

> not know who we are. I have 3 boys who have immunodeficiency secondary to

> their Mitochondrial disease. My middle son was on IVIG for almost a year

> and we had to trial him off as my dh lost his job and we could only afford

> to pay for the COBRA, but didn’t have any money left to actually use it.

> He has done surprisingly well since trialing off and continues to hold his

> own illness-wise. My oldest son has recently had issues with his titers as

> well and has become a non-responder to his pneumo vaxes like his younger

> brother. My youngest has had low Ig levels, but has managed to hold on to

> enough of his titers to where we were not overly concerned. The immuno has

> been pushing us to start sub-q for the older 2 boys due to their pneumo

> titers, but we have held off because they have clinically been doing well

> enough…no life-threatening illnesses and they bounce back in a normal

> time frame and they have not had illness upon illness upon illness either.

> They have had a handful of whatever is going around each sick season...not

> the healthiest kids in their class, but certainly not the sickest either.

> The other factor that has been holding us back is the cost. We don’t

> have Medicaid and since the older boys already have feeding tubes and O2

> at night and everything else, the 20% OOP after their deductibles are

> killing us financially.

>

> That brings me to today. We finally got our immunology labs back from

> their appt in Dec. They had the normal labs drawn…the Ig levels were

> pretty run of the mill for them. Their pneumo titers were surprising. My

> middle son (who was on IVIG before) had only 1 over 2.0 and considered

> protective…that is normal for him. But, SEVEN were measured at <0.3,

> which leads me to believe those were undetectable. My oldest was only

> protective to one of 14 (down from 4 of 14 at the previous draw) and my

> youngest, who has responded to vaxes fairly well up until now only has

> protective levels to 4 of 14 (down from 8 of 14 at the previous draw). The

> older 2 used to respond well enough, but they eventually lost the ability

> to mount a response to the Pneumovax and are considered non-responders

> now. In seeing these results, I am feeling as though my youngest is

> following his brothers with their immunological decline.

>

> My question is, with the labs they have now, would you continue to see how

> they do since they are doing ok clinically? Or would you start them on

> infusions given the labwork? Quite frankly, I was totally ok with letting

> them be until I saw how low my middle son’s are. Half are not even able

> to be accurately measured because they are so low and that scares me. Just

> looking for some feedback as to what to do now…before we talk to the

> immuno and see what she thinks. I know she is all for them going on

> treatments, but I am not sure we have a leg left to stand on to put her

> off any longer…and I am not sure at this point that we should. Thanks

> for any insight you can share with me.

>

> Melody, mom to 3 little boys with immune deficiency secondary to Mito

>

>

[Guest guest]

We have been revaxing every year since they were all 2. Myolder 2 are non

responders now as they had the pneumovax the last time and did not mount any

measurable response to it. My youngest has been a responder thus far (as they

other 2 were when they were younger) but his titers have started falling off as

well and he seems to be following the same pattern as the older two now, which

is honestly what we were expecting him to do. The immune has asked that the

older 2 be started on infusions already, but I have held her off since they are

clinically doing ok. She was ok with it as long as they stayed healthy, but

their labwork has shown further decline and I am not sure we have a leg left to

stand on as far as asking for her to wait and see…

Melody, mom to 3 little boys with Mito and immune deficiency secondary to the

Mito

From: [mailto: ] On Behalf Of

mindy@...

Sent: Saturday, February 18, 2012 10:48 AM

Subject: RE: Awful labwork. but clinically ok?

Each situation is individual, and you are right to look at the whole

picture. If you are loathe to start the IVIG right now, you could try

repeating the pneumovax, and see if it just takes them a second vaccine to

hold the titers. Honestly, it it were me, I probably would start the IVIG

if I could afford it at all. It would only take one big infection to make

you regret not starting.

We applied for the EDCD waiver and got Medicaid 8 months ago for our son,

which has really helped with this year's out-of-pocket expenses.

Mindy, mom to , 9, autism, hypogammaglobulinemia, plus

neuro/muscle/autoimmune disease

> Anyone else have any advice?

>

>

>

> Melody

>

>

>

> From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

> Doug & Melody Pohla

> Sent: Wednesday, February 15, 2012 10:09 PM

> <mailto:%40>

> Subject: Awful labwork. but clinically ok?

>

>

>

>

>

> Hi everyone! I mostly lurk for the good info I get here so most of you may

> not know who we are. I have 3 boys who have immunodeficiency secondary to

> their Mitochondrial disease. My middle son was on IVIG for almost a year

> and we had to trial him off as my dh lost his job and we could only afford

> to pay for the COBRA, but didn’t have any money left to actually use

it.

> He has done surprisingly well since trialing off and continues to hold his

> own illness-wise. My oldest son has recently had issues with his titers as

> well and has become a non-responder to his pneumo vaxes like his younger

> brother. My youngest has had low Ig levels, but has managed to hold on to

> enough of his titers to where we were not overly concerned. The immuno has

> been pushing us to start sub-q for the older 2 boys due to their pneumo

> titers, but we have held off because they have clinically been doing well

> enough…no life-threatening illnesses and they bounce back in a normal

> time frame and they have not had illness upon illness upon illness either.

> They have had a handful of whatever is going around each sick season...not

> the healthiest kids in their class, but certainly not the sickest either.

> The other factor that has been holding us back is the cost. We don’t

> have Medicaid and since the older boys already have feeding tubes and O2

> at night and everything else, the 20% OOP after their deductibles are

> killing us financially.

>

> That brings me to today. We finally got our immunology labs back from

> their appt in Dec. They had the normal labs drawn…the Ig levels were

> pretty run of the mill for them. Their pneumo titers were surprising. My

> middle son (who was on IVIG before) had only 1 over 2.0 and considered

> protective…that is normal for him. But, SEVEN were measured at <0.3,

> which leads me to believe those were undetectable. My oldest was only

> protective to one of 14 (down from 4 of 14 at the previous draw) and my

> youngest, who has responded to vaxes fairly well up until now only has

> protective levels to 4 of 14 (down from 8 of 14 at the previous draw). The

> older 2 used to respond well enough, but they eventually lost the ability

> to mount a response to the Pneumovax and are considered non-responders

> now. In seeing these results, I am feeling as though my youngest is

> following his brothers with their immunological decline.

>

> My question is, with the labs they have now, would you continue to see how

> they do since they are doing ok clinically? Or would you start them on

> infusions given the labwork? Quite frankly, I was totally ok with letting

> them be until I saw how low my middle son’s are. Half are not even able

> to be accurately measured because they are so low and that scares me. Just

> looking for some feedback as to what to do now…before we talk to the

> immuno and see what she thinks. I know she is all for them going on

> treatments, but I am not sure we have a leg left to stand on to put her

> off any longer…and I am not sure at this point that we should. Thanks

> for any insight you can share with me.

>

> Melody, mom to 3 little boys with immune deficiency secondary to Mito

>

>

[Guest guest]

I dont know. the one time we trialed off, everything was going well until very

suddenly IT WASNT. And then....they got so ridiculously sick (all three of them)

it took us forever to get them back to their " normal " . I cant imagine, for us,

ever wanting to trial off again.

But, thats my family. And we are lucky enough to have been able to get Medicaid

after we lost our cobra (my dh lost his job too). So, I dont have the worry,

right now, of coming up with the money.

If they are low in their labs, and they are doing ok now, I guess I would worry

about what would happen if one of them DID catch something or become ill with

something they couldnt fight off...then what? How would they get over it? And,

with them having other medical issues...I know with my kids, their asthma is

always affected, every single time they catch anything. Without IG, it was so

much worse. I would worry. But, I tend to worry:) Bc its easy to do with these

kids.

Every one of our kids are different, so I dont think anyone else can tell you

what to do in your situation.

Would it be possible to have all their specialists meet and discuss the

situation? what does their dr for the metabolic issues think?

valarie

mom to 3 w/cvid

>

> Anyone else have any advice?

>

>

>

> Melody

>

>

>

> From: [mailto: ] On Behalf Of Doug

& Melody Pohla

> Sent: Wednesday, February 15, 2012 10:09 PM

>

> Subject: Awful labwork. but clinically ok?

>

>

>

>

>

> Hi everyone! I mostly lurk for the good info I get here so most of you may not

know who we are. I have 3 boys who have immunodeficiency secondary to their

Mitochondrial disease. My middle son was on IVIG for almost a year and we had to

trial him off as my dh lost his job and we could only afford to pay for the

COBRA, but didn’t have any money left to actually use it. He has done

surprisingly well since trialing off and continues to hold his own illness-wise.

My oldest son has recently had issues with his titers as well and has become a

non-responder to his pneumo vaxes like his younger brother. My youngest has had

low Ig levels, but has managed to hold on to enough of his titers to where we

were not overly concerned. The immuno has been pushing us to start sub-q for the

older 2 boys due to their pneumo titers, but we have held off because they have

clinically been doing well enough…no life-threatening illnesses and they

bounce back in a normal time frame and they have not had illness upon illness

upon illness either. They have had a handful of whatever is going around each

sick season...not the healthiest kids in their class, but certainly not the

sickest either. The other factor that has been holding us back is the cost. We

don’t have Medicaid and since the older boys already have feeding tubes and O2

at night and everything else, the 20% OOP after their deductibles are killing us

financially.

>

> That brings me to today. We finally got our immunology labs back from their

appt in Dec. They had the normal labs drawn…the Ig levels were pretty run of

the mill for them. Their pneumo titers were surprising. My middle son (who was

on IVIG before) had only 1 over 2.0 and considered protective…that is normal

for him. But, SEVEN were measured at <0.3, which leads me to believe those were

undetectable. My oldest was only protective to one of 14 (down from 4 of 14 at

the previous draw) and my youngest, who has responded to vaxes fairly well up

until now only has protective levels to 4 of 14 (down from 8 of 14 at the

previous draw). The older 2 used to respond well enough, but they eventually

lost the ability to mount a response to the Pneumovax and are considered

non-responders now. In seeing these results, I am feeling as though my youngest

is following his brothers with their immunological decline.

>

> My question is, with the labs they have now, would you continue to see how

they do since they are doing ok clinically? Or would you start them on infusions

given the labwork? Quite frankly, I was totally ok with letting them be until I

saw how low my middle son’s are. Half are not even able to be accurately

measured because they are so low and that scares me. Just looking for some

feedback as to what to do now…before we talk to the immuno and see what she

thinks. I know she is all for them going on treatments, but I am not sure we

have a leg left to stand on to put her off any longer…and I am not sure at

this point that we should. Thanks for any insight you can share with me.

>

> Melody, mom to 3 little boys with immune deficiency secondary to Mito

>

>