RE: New member looking for input - long

[Guest guest]

Many of the concerns are the same as people that have immune disorders. I would

encourage you to contact the Immune Deficiency Foundation at

www.primaryimmnedeficiency.com and talk to them. There are many things that can

go along with the PID. Have the girls had antibody testing?? The best place to

be worked up is in a Major University Hospital. If there is any way to do that I

would get a referral from IDF and get their entire systems tested. Also make

sure you do not have a MOLD problem in their environments. We had mold and it

effected my daughter as severely as my son who does have an immune deficiencty.

There is a Federal Agency connected to the EPA that will come out and check your

home for free. It has a different name in each state. This is a great beginning

point. Also some schools have LOTS of mold with trailers. It can make the kids

VERY VERY sick as it did in our case. Good luck on your very difficult journey.

BARBIE

________________________________

From: beyeafamily <debeyea@...>

Sent: Saturday, November 29, 2008 3:20:18 PM

Subject: New member looking for input - long

Hi. I recently joined up and having been lurking and reading

messages. I could really use some experienced input for my daughters.

The two that are having the most troubles at this point are my 11 and

7 yr old.

My 11 yr old has had a history of chronic sinusitis. She also has

Eosinophilic Gastroenteropathy and a Mitochondrial Disease. Because

of her gut conditions, she doesn't tolerate oral abx well, so we try

to avoid them or be creative about administering them. Generally,

when she is sick with something that absolutely has to have abx, we

will admit her and do them IV. She has had a picc line placed before

because of the severity of her sinus issues, and did IV abx for a

month.

She has been sick for about 2 months with severe sinus issues again,

and all the rinses, etc. that we do were doing nothing for her. The

ENT cultured and she grew out a somewhat resistant stubborn, gram

negative bacteria, so she is back on a picc line with IV abx. Because

of multiple infections in the past, there has been talk of immune

deficiency. I mean, with the Eos problem, it's pretty obvious her

immune system is messed up - but what do we do about it? Mainly just

treat symptoms as they arise.

She has had IG levels tested and all come back normal. So no one

really knows what to do with us, except for managing symptoms and

crises as they arise.

My 7 yr old, on the other hand, is a mess with chronic infections.

Her main problems are also in her sinuses, although she also gets

frequent croups, and upper respiratory junk. She also will get fevers

of unknown origin. Her sinuses have been bad enough to have sinus

surgery twice. Both times, the cultures grew out at least 3 bugs, and

at least one of them was a resistant strain of something. Her last

sinus surgery ended up in the hospital for 4 days with pneumonia.

She is constantly on abx (can take them orally, thank God!) and as

soon as she gets off of them, within days she is sick again. She has

had yeast and fungal infections as well. She has had Immune testing

done in the past. Once we got an IgG2 level that was low, but since

the rest was fine, they said to not bother with it, that she was

probably just sick at the time. She has been tested for CF too, and

that was negative. (sweat test)

We spent last winter on maintenance abx for the duration of the

winter, because of her being so sick. It did help, but didn't

completely eradicate the problem, and she ended up with a roaring

sinusitis anyways, that required surgery to open it up and drain it.

Both girls get completely closed over in their sinuses, and both show

ppolyps and muscosal changes, etc.

So, we had a doc who mentioned IVIG for the 7 yr old, but since the

latest round of IG testing came back low normal, they don't want to

do anything but keep treating with more abx. We are against doing

abx all winter again, since we feel it caused the yeast problems and

didn't work before anyways. We do cycle through abx, and use

different types to treat. She does the best on Septra - a sulfur drug.

We finally made an appt with the only ped immunologist in the area,

which is in about a month. I would like to be prepared the best I can

for this appt and know what I need to ask. I have been told that this

guy probably won't be able to help us, as he is very fundamental and

by the book.

Does this sound like immune problems that anyone else has experience

with and can help us? It's like living a nightmare... constantly

having the girls sick all the time. We spend so much time at the

peds, and they seem to pick up every germ that floats by. It also

seems like they hold onto them and won't get rid of them, like other

people do. A simple cold will always turn into respiratory issues for

them.

I sure would appreciate any help that you can give!

Thanks for reading all of that!!

a

www.caringbridge. org/visit/ beyea

[Guest guest]

>

> Many of the concerns are the same as people that have immune

>disorders. I would encourage you to contact the Immune Deficiency

>Foundation at www.primaryimmnedeficiency.com and talk to them. There

>are many things that can go along with the PID. Have the girls had

>antibody testing??

Do you mean checking titers to vaccines? Because both of them have

had this done, and didn't have titers built up and had to have the

Pneumococcal vaccine readministered. In fact, the 11yr old has had to

have it done twice. She initially responded to the vaccine, but lost

the immunity over several years, and again had no antibodies built up

towards it.

> Also make sure you do not have a MOLD problem in their

environments.

We are very on top of mold. We have taken a lot of measures to be

sure that there is none in our house. We use air purifiers in the

house, and try to do a lot of environemental things, because both

girls have tons of environmental allergies. They are homeschooled so

school is not an issue either.

Thanks!

a

[Guest guest]

Did they check sub-classes?  Mine are mito kids too and it was IGG 1 and 3 that

were deficient, don't hold titers, and other weird stuff.  I know of at least

one family with  mito/normal subclasses and there defect is in neutrophil

chemotaxis (she is on list so maybe will respond).  Her child has done

beautifully with sub-q IGG even though his subclasses were normal and it

theoretically should not help.  Immune disorders and mito are pretty common and

they are using IGG on mito kids that are not deficient and having good results

(CCF is doing this).

Best wishes,

Kris

________________________________

From: beyeafamily <debeyea@...>

Sent: Saturday, November 29, 2008 3:20:18 PM

Subject: New member looking for input - long

Hi. I recently joined up and having been lurking and reading

messages. I could really use some experienced input for my daughters.

The two that are having the most troubles at this point are my 11 and

7 yr old.

My 11 yr old has had a history of chronic sinusitis. She also has

Eosinophilic Gastroenteropathy and a Mitochondrial Disease. Because

of her gut conditions, she doesn't tolerate oral abx well, so we try

to avoid them or be creative about administering them. Generally,

when she is sick with something that absolutely has to have abx, we

will admit her and do them IV. She has had a picc line placed before

because of the severity of her sinus issues, and did IV abx for a

month.

She has been sick for about 2 months with severe sinus issues again,

and all the rinses, etc. that we do were doing nothing for her. The

ENT cultured and she grew out a somewhat resistant stubborn, gram

negative bacteria, so she is back on a picc line with IV abx. Because

of multiple infections in the past, there has been talk of immune

deficiency. I mean, with the Eos problem, it's pretty obvious her

immune system is messed up - but what do we do about it? Mainly just

treat symptoms as they arise.

She has had IG levels tested and all come back normal. So no one

really knows what to do with us, except for managing symptoms and

crises as they arise.

My 7 yr old, on the other hand, is a mess with chronic infections.

Her main problems are also in her sinuses, although she also gets

frequent croups, and upper respiratory junk. She also will get fevers

of unknown origin. Her sinuses have been bad enough to have sinus

surgery twice. Both times, the cultures grew out at least 3 bugs, and

at least one of them was a resistant strain of something. Her last

sinus surgery ended up in the hospital for 4 days with pneumonia.

She is constantly on abx (can take them orally, thank God!) and as

soon as she gets off of them, within days she is sick again. She has

had yeast and fungal infections as well. She has had Immune testing

done in the past. Once we got an IgG2 level that was low, but since

the rest was fine, they said to not bother with it, that she was

probably just sick at the time. She has been tested for CF too, and

that was negative. (sweat test)

We spent last winter on maintenance abx for the duration of the

winter, because of her being so sick. It did help, but didn't

completely eradicate the problem, and she ended up with a roaring

sinusitis anyways, that required surgery to open it up and drain it.

Both girls get completely closed over in their sinuses, and both show

ppolyps and muscosal changes, etc.

So, we had a doc who mentioned IVIG for the 7 yr old, but since the

latest round of IG testing came back low normal, they don't want to

do anything but keep treating with more abx. We are against doing

abx all winter again, since we feel it caused the yeast problems and

didn't work before anyways. We do cycle through abx, and use

different types to treat. She does the best on Septra - a sulfur drug.

We finally made an appt with the only ped immunologist in the area,

which is in about a month. I would like to be prepared the best I can

for this appt and know what I need to ask. I have been told that this

guy probably won't be able to help us, as he is very fundamental and

by the book.

Does this sound like immune problems that anyone else has experience

with and can help us? It's like living a nightmare... constantly

having the girls sick all the time. We spend so much time at the

peds, and they seem to pick up every germ that floats by. It also

seems like they hold onto them and won't get rid of them, like other

people do. A simple cold will always turn into respiratory issues for

them.

I sure would appreciate any help that you can give!

Thanks for reading all of that!!

a

www.caringbridge. org/visit/ beyea

[Guest guest]

>

>

>

>

> Did they check sub-classes?  Mine are mito kids too and it was IGG

1 and 3 that were deficient, don't hold titers, and other weird

stuff.  I know of at least one family with  mito/normal subclasses

and there defect is in neutrophil chemotaxis (she is on list so maybe

will respond).  Her child has done beautifully with sub-q IGG even

though his subclasses were normal and it theoretically should not

help.  Immune disorders and mito are pretty common and they are using

IGG on mito kids that are not deficient and having good results (CCF

is doing this).

>

> Best wishes,

>

> Kris

>

Subclasses on the 11yr old were normal before, but we are waiting on

some bloodwork again that they just drew to recheck them. The 7 yr

old has had low IgG2, but they said it was not 'low enough' to do

anything with it, and also that low IgG2 by itself was not a big

deal, that it probably just meant that she was sick at the time of

the blood draw.

We are in the Buffalo, NY area (far Western side of the state) and

there is a total dearth of good medical care here. We travel to

Cincinnati Childrens for GI care, which probably saved my 11 yr old's

life. It is also where their mito was dx'd. We do have appts to

follow with Cleveland Clinic for mito. I just worry that with the

mito aspect, the routine infections will be too much for their bodies

to handle. It seems like all their docs (and we see a pack of

specialists for multiple issues) are willing to just treat them like

normal kids and I am just worried, that's all.

Hopefully CCF will be able to give more guidance on the issue, then.

It's good to know that there are others out there facing the same

things, and what is working for them. I am just so tired, worn out

and frustrated dealing with the constant sickness on top of

everything else.

Thanks so much for all the responses.

a

www.caringbridge.org/visit/beyea

[Guest guest]

a - welcome to the group. I would go with the antibody titer dysfunction.

Although they initially make titers they eventually lose them which means they

have no memory cells. Specific antibody deficiency is something you might want

to google. The Immune Deficiency Foundation can provide you with a list of

immunologists and/or specialists in your area that have lectured for them in the

past or are listed with the AAAAI. They will promote or recommend any physician

but can provide an 800 number for your physician to call and consult with an

expert in this area directly.

The PICC line/abx route is one well known to us. How many weeks of antibiotics

are they doing at a time? Are they reculturing between infections? This would

be good for either daughter. Helps to establish a history for treating better.

Unfortunately prophylactic maintenance antibiotics are a known therapy for PID

patients. The side effects of thrush or bacterial overgrowth are sometimes kept

at bay by probiotics such as acidophilus or bactillus. Macey does Activia every

morning which has helped. She still gets mouth sores alot but we're not sure if

it's from the antibiotics or her PID.

Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman

[Guest guest]

I meant to say they WILL NOT promote or recommend any physician........

a - welcome to the group. I would go with the antibody titer dysfunction.

Although they initially make titers they eventually lose them which means they

have no memory cells. Specific antibody deficiency is something you might want

to google. The Immune Deficiency Foundation can provide you with a list of

immunologists and/or specialists in your area that have lectured for them in the

past or are listed with the AAAAI. They will promote or recommend any physician

but can provide an 800 number for your physician to call and consult with an

expert in this area directly.The PICC line/abx route is one well known to us.

How many weeks of antibiotics are they doing at a time? Are they reculturing

between infections? This would be good for either daughter. Helps to establish a

history for treating better. Unfortunately prophylactic maintenance antibiotics

are a known therapy for PID patients. The side effects of thrush or bacterial

overgrowth are sometimes kept at bay by probiotics such as acidophilus or

bactillus. Macey does Activia every morning which has helped. She still gets

mouth sores alot but we're not sure if it's from the antibiotics or her

PID.Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman[Non-text portions of this

message have been removed]

[Guest guest]

a, we can all empathize with the exhaustion. You have been waiting a LONG

time for a proper diagnosis. It has been known that it can take about 10 years

for people to be diagnosed with PID. I know that Rainbow Childrens has had a

GOOD immune deficiency program in the past. I am surprised you are not finding

more in your area with the kids other programs. I would say it is NOT OK for

them to have such ongoing infections.

BARBIE

________________________________

From: beyeafamily <debeyea@...>

Sent: Saturday, November 29, 2008 5:25:54 PM

Subject: Re: New member looking for input - long

>

>

>

>

> Did they check sub-classes? Mine are mito kids too and it was IGG

1 and 3 that were deficient, don' t hold titers, and other weird

stuff. I know of at least one family with mito/normal subclasses

and there defect is in neutrophil chemotaxis (she is on list so maybe

will respond). Her child has done beautifully with sub-q IGG even

though his subclasses were normal and it theoretically should not

help. Immune disorders and mito are pretty common and they are using

IGG on mito kids that are not deficient and having good results (CCF

is doing this).

>

> Best wishes,

>

> Kris

>

Subclasses on the 11yr old were normal before, but we are waiting on

some bloodwork again that they just drew to recheck them. The 7 yr

old has had low IgG2, but they said it was not 'low enough' to do

anything with it, and also that low IgG2 by itself was not a big

deal, that it probably just meant that she was sick at the time of

the blood draw.

We are in the Buffalo, NY area (far Western side of the state) and

there is a total dearth of good medical care here. We travel to

Cincinnati Childrens for GI care, which probably saved my 11 yr old's

life. It is also where their mito was dx'd. We do have appts to

follow with Cleveland Clinic for mito. I just worry that with the

mito aspect, the routine infections will be too much for their bodies

to handle. It seems like all their docs (and we see a pack of

specialists for multiple issues) are willing to just treat them like

normal kids and I am just worried, that's all.

Hopefully CCF will be able to give more guidance on the issue, then.

It's good to know that there are others out there facing the same

things, and what is working for them. I am just so tired, worn out

and frustrated dealing with the constant sickness on top of

everything else.

Thanks so much for all the responses.

a

www.caringbridge. org/visit/ beyea

[Guest guest]

" So, we had a doc who mentioned IVIG for the 7 yr old, but since the

latest round of IG testing came back low normal, they don't want to

do anything but keep treating with more abx...We finally made an appt with the

only ped immunologist in the area,

which is in about a month. I would like to be prepared... "

Hi, a.

The group has made some good suggestions. I just wanted to add that...

An experienced peds immuno should be able to assess immune function (beyond Ig

levels). The problem is that he/she may or may not have experience with mito.

Without your kids having the context of mito and/or GI problems, IV antibiotics

might be just fine for a time. Some CVIDers manage without IVIG but require

aggressive treatment with antibiotics. In our case, our daughter did horribly

on antibiotics and she was fortunate to get IVIG when she did.

Anyway, I think part of your challenge will be to get an immuno that can see a

" whole picture " with the mito/eos as complicating issues. If, for example,

antibiotics can't be used without high risk and uncontrolled infections can

cause a mito crisis...I can understand why your current doc was keeping IVIG in

mind. It's too bad they stopped testing with Ig levels. And, keep in mind

that levels can change over time. One data point is not enough to assess immune

status. It is common for our kids to be checked 2 or 3 times before IVIG is

initiated. If she is borderline low during an infection (when levels are

suppose to go UP) then her levels need to be rechecked. They do fluxuate.

As a separate issue...tetracycline (that may be used to treat gram neg bacteria)

causes mito damage. Unfortunately, mito toxicity testing is not required by the

US FDA for drug approval. (Mol. Nutr. Food Res. 2008, 52, 780 – 788,

Neustadt and Steve R. Pieczenik) so I don't have a list of what antibiotics are

problemmatic and which ones are ok.

I think it is a good idea to contact the Immune Deficiency Foundation.

Keep asking questions.

mom to Dani, 7, CVID+

[Guest guest]

--- not keeping titers to vaccinations means the IGG that is there

isnt working. That means your child has an immune deficiency. It

doesnt matter if the child has a really high IGG count, if it doesnt

make antibodies, the IGG isnt working.

I have four children. Three have CVID. My boys were sick, repeatedly,

since infancy. First it was just asthma, we were told. Maybe CF,

tested neg. During this time, we waited to get in to see the head

pulmo at our states university hospital. She felt very frustrated at

their lack of care. For a couple of yrs we did winter abx, like you

say, it didnt help all that much and my kids had constant thrush, plus

constant meds, prednisone bursts, and resp and sinus infections. They

would get better for a week or so after abx ended, then be sick again

for another few weeks. It never stopped. Eventually my daughter also

started the same cycles. After testing, they were found to have low

IGG, IGM, and IGA, also little or no titers to some vaccinations. Two

and a half yrs ago, we started IVIG for the two most severely

affected. I couldnt believe how much life changed...we were able to

get off winter abx. Pred bursts were almost nil. Their asthma improved

greatly, and sinus infections were usually controlled with one round

of abx. Last July, we trialed off to get some labs, and see how the

kids would do. One is still doing ok, my youngest(6), has been sick

nonstop since Sept. He and my daughter will restart IVIG this Dec, and

I cant wait. I almost forgot what a miserable thing life was before IVIG.

If you can post what state you are in, maybe another mom here can give

you the name of a good dr. I know its hard to wait.....but I would bet

that IVIG would change your girls lives. Keep pushing for help!!

valarie

In , " beyeafamily " <debeyea@...> wrote:

>

>

> >

> > Many of the concerns are the same as people that have immune

> >disorders. I would encourage you to contact the Immune Deficiency

> >Foundation at www.primaryimmnedeficiency.com and talk to them. There

> >are many things that can go along with the PID. Have the girls had

> >antibody testing??

>

>

> Do you mean checking titers to vaccines? Because both of them have

> had this done, and didn't have titers built up and had to have the

> Pneumococcal vaccine readministered. In fact, the 11yr old has had to

> have it done twice. She initially responded to the vaccine, but lost

> the immunity over several years, and again had no antibodies built up

> towards it.

>

>

> > Also make sure you do not have a MOLD problem in their

> environments.

>

> We are very on top of mold. We have taken a lot of measures to be

> sure that there is none in our house. We use air purifiers in the

> house, and try to do a lot of environemental things, because both

> girls have tons of environmental allergies. They are homeschooled so

> school is not an issue either.

>

> Thanks!

> a

>