hi i am new

[Guest guest]

Dale

Thanks

I have talked to someone at IDF. I have seen a doctor. His name is Dr.

Infante. He doubts they have PID.

These were his recommendations

Logan, my 6 yr old daughter, should be put on antibiotics daily.

Zach, my 9yr old son, could have a trial IVIG if his lung disease gets worse.

Hey, I am no doctor, but I do know something is not right. I guess the thing

that bothers me is if it is not immune then what is it? Why is everything they

have idiopathic? They don't know the cause of the adrenal gland problem. They

don't know why my son gets UTI or why he has bronchiectasis. They don't know

why she has so many sinus respiratory infections or why she has an adrenal

problem.

I do not want to take them to the wrong doctor and I know they are lucky. I

know it can be worse but as a mom I feel it is my job to do the best I can for

them. SO I search for answers OR someone who may find them as an interesting

case.

I just got back from seeing a kidney specialist. We had to see this Dr just to

make sure everything is okay. She has recommended the kids see infecious

disease and genetic doctors. The peds doctor agrees so it looks like I will be

seeing more doctors with them since the immune doctor didn't add much. I don't

mind taking them I just hope it helps.

We are in San , Texas. We just arrived here in San and I am

making the rounds. The kids and I have been meeting all the specialist here. We

have to break in the new doctors.

Thanks for your help

Theresa

Dale Weatherford <dale@...> wrote:

My son has bronchiectasis. My daughter gets

> recurrent pneumonia and sinus infections. She is on her 16

> antibiotic this year for infections.

>

> They have seen an immunologist but they don't seem to fit totally in

> the PID catagory. This has been our problem throughout. They don't

> seem to fit anywhere. They don't know why he has bronchiectasis.

> They don't know why they are adrenally insufficient. They don't

> seem to know why they have no HIB antibodies (my son also has no

> antibodies for tetanus and low for dip). All of their Ig levels

> seem normal.

>

> I actually do not know if I belong here looking for answers but I

> would like to know what you all think. What road do I need to

> travel to get some answers?

>

from Dale, Mom to Katy, CVID, age 22, married

Theresa, sorry I couldn't answer more fully last time. I had company

arriving. When I just read through your post, it makes me wonder if you

have found a doctor who is well versed with immune deficiencies. There

are a lot of doctors who know to check the IgG level, but don't know

what to do after that. Is your doctor recommending any other tests?

You see, IgG levels are the easy part to check -- any doctor can do

that. If the levels are low -- well, that's the problem. But in some

cases the immune system is not functioning well even when the numbers

are okay. The immune system is a very complex group of problems. If

your doctor is not well versed in immune deficiencies (and most are

not), I highly recommend that you and your family contact the Immune

Defiency Foundation and get a recommendation to a Clinical Immunologist

who can thoroughly check out your children. It certainly sounds to me

that they are missing some important immune function -- like building

antibodies and protecting the lungs. That tells me that something is

seriously wrong. I would highly recommend a trip to National Jewish

(since you mention that one) or finding another one near you. You may

even have to travel out of state. If you want to post your general

location to the group -- we may be able to recommend a doctor in your

area. Maybe your doctor is doing these tests, and you are just asking

questions in advance, but, if not, please seek a doctor who will do the

testing.

Now, it's expensive to see a doctor out of your area -- but you only

need to do it once in order to get the initial diagnosis and there are

ways to make it less expensive. After that they should be able to work

with your pediatrician to maintain their health. But, it is vitally

important to get a definite diagnosis. Your child has already

experienced lung damage and if we could prevent further damage, it would

be well worth a trip to a higher level doctor. Please, please, please,

talk to the Immune Deficiency Foundation about finding a doctor to

thoroughly check out their immune function and get them help.

It's not enough to say that their IgG levels are okay. We have a lot of

kids on this site whose numbers are fine -- but the function is not.

There are additional tests that need to be done to determine what's

missing. Please, please, look into finding a clinical immunologist who

can do thorough testing.

The Immune Deficiency Foundation's number is 1-800-296-4433 and they can

direct you to an immunologist that is closest to your area.

Let us know if you have further questions,

In His service,

dale

__________________________________________________

[Guest guest]

Hi, Theresa.

When there is a suspicion of any medical problem, sometimes you have to re-test

before you find answers. (particularly in view of your children's clinical

symptoms). With regard to immune studies, they can be tricky, sensitive, and

not run completely (as Dale said). Also, the child can change over time (with

age, infection, organ damage, etc. etc.). It is hard to imagine that a child

that is suspect, and given antibiotics, would be sent on their way without

further monitoring.

Immunologists will sometimes give a child prophylactic antibiotics to see if

they can avoid the IgG replacement route. We did this for some time and then my

child crashed. My question is: why prophylactic antibiotics if nothing is

wrong??? This is odd and you are in a very difficult situation. I read about

your doc and, as you say, he seems qualified as far as his resume is concerned

(he is also listed at the Jeffery Modell Center). I am floored that you did not

get your needs met from him. But no doc is perfect. If he does not think there

is a PID then why the antibiotics and why not refer to another specialist that

can solve " it " ? I am as confused as you are. So sorry you are going through

this. You are going to have to make some tough choices with regard to whether

or not to seek another opinion. If you want any suggestions, don't hesitate to

post. If you go elsewhere, you definitely want to most bang for your buck. We

traveled across the country to find an

immuno (#2) we could trust.

mom to CVIDer

Re: Hi I am new

thanks for the info. I have seen those websites. I just have not completely

looked at them.

I am interested in why you have to retest. I don't doubt the reasons for

doing this. I just want to know how this helps.

Thanks

theresa

Schulman <dietdoc@...> wrote:

Welcome, Theresa!

I think you will find yourself at home here. Most of the parents have had to

advocate for their children and push for answers.

You might be interested in reviewing the following publications:

1. Jeffery Modell Foundation's Physician Algorthim:

http://www.info4pi.org/researchlibrary/index.cfm?section=researchlibrary & content\

=algorithm & CFID=13653963 & CFTOKEN=74808

2. The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for

Primary Immunodeficiency Diseases

http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm

It is not unusual for a physician to do incomplete testing, stop early at

antibody function, etc... When there is a suspicion of a PID, sometimes you have

to test and re-test before the true circumstances are known. Getting an opinion

from an experienced immunologist is necessary. You mentioned National Jewish

Medical & Research Center. They have top-noch faculty and resources to evaluate

immune and pulmonary issues. I am pasting the website for the lung-line nurses,

for those that are interested. The call is free:

http://www.njc.org/contact/lung/index.aspx

mom to CVIDer

[Guest guest]

I actually have a few thoughts on this

Of course my first thought is he just didn't look hard enough into our case.

I know they are not bad. It is very workable compared to some of the problems

everyone else seems to have.

We were sent to him for a second opinion. A very tricky thing for our

insurance as far as I am concerned. My husband is in the military. From prior

experience I know that when you go for the second opinion you must bring the

diagnosis back to the military doctors for treatment. They must agree with the

diagnosis and then proceed to do what he recommends. My son was seen by a

military doctor and he had told us he coughed out of habit and it was my bad

luck that he had pneumonia twice in the last six months. We went for another

opinion but it had to be civilian. THis doctor was wonderful! He nearly

flipped when he heard Zach's lungs. He thought he had cystic fibrosis-nope. He

did a scope and found the kid was 60% blocked and he then thought he had cilia

immotility-nope. When he went in and saw the infection he treated him with

antibiotics. This is when the military stopped paying for us to see him. I

know of no doctor that would have packed that kid up and and

said sorry you must now verify this with another doctor (oh by the way which

would have been the quack who said he was fine). This Dr Infante maybe telling

me because he can not show support for this he can not give them anything else.

BUT just like you said then what is it? What doctor can help me and why didn't

he send me there.

Maybe I am barking up the wrong tree. My kids also have adrenal

insufficiency. They do not make cortisol. They need to be supplemented by

hydrocortisone daily. When they get sick the body normally signals for more

cortisol. It is somewhat involved with regulation of sugar, blood pressure,

heart rate, GH ,and the immune system. Without this med they can have what they

call a crisis. They have an infection they can't fight and they become septic

and die. We found out that Logan (6 yr old girl) had this problem when she

almost died on us. I made them test Zach two weeks later and he had the same

problem. Zach has responded better than Logan yet Zach has less antibody

responses. She crashes almost every two months. The last one was quick. SHe

came home from school and 15 minutes later she was gray and not responding well.

She was admitted only until she had enough response to the IV hydrocortisone and

antibiotics. The endo believes that they are suppressed by

their asthma meds. I asked Dr. Infante if they can be suppressed by the asthma

meds adrenally can they be suppressed immune system wise. He said if that was

the case the endo would be seeing a lot of asthma patients. I guess he does

not believe that theory. He should know about the immune suppression. so I

guess that is not an option.

Last theory, maybe it is me. I get too involved and too emotional about this.

I think I might need to be more businesslike. I might just need to say, I need

this, this and this addressed by this time. No whishy washy stuff!

Anyway, Logan will go see an ENT in a couple of weeks. She still has sinus

drainage and she just blew the ear drum 10 days ago. They will also see

infectious disease and genetics. Zach just got done seeing a kidney doctor

cause he just had a UTI. I think Zach is developing something. He is very

tired and is starting to have a thicker cough. We shall see what develops.

Thanks for your time and answers

Theresa

Schulman <dietdoc@...> wrote:

Hi, Theresa.

When there is a suspicion of any medical problem, sometimes you have to re-test

before you find answers. (particularly in view of your children's clinical

symptoms). With regard to immune studies, they can be tricky, sensitive, and not

run completely (as Dale said). Also, the child can change over time (with age,

infection, organ damage, etc. etc.). It is hard to imagine that a child that is

suspect, and given antibiotics, would be sent on their way without further

monitoring.

Immunologists will sometimes give a child prophylactic antibiotics to see if

they can avoid the IgG replacement route. We did this for some time and then my

child crashed. My question is: why prophylactic antibiotics if nothing is

wrong??? This is odd and you are in a very difficult situation. I read about

your doc and, as you say, he seems qualified as far as his resume is concerned

(he is also listed at the Jeffery Modell Center). I am floored that you did not

get your needs met from him. But no doc is perfect. If he does not think there

is a PID then why the antibiotics and why not refer to another specialist that

can solve " it " ? I am as confused as you are. So sorry you are going through

this. You are going to have to make some tough choices with regard to whether or

not to seek another opinion. If you want any suggestions, don't hesitate to

post. If you go elsewhere, you definitely want to most bang for your buck. We

traveled across the country to find an

immuno (#2) we could trust.

mom to CVIDer

Re: Hi I am new

thanks for the info. I have seen those websites. I just have not completely

looked at them.

I am interested in why you have to retest. I don't doubt the reasons for doing

this. I just want to know how this helps.

Thanks

theresa

Schulman <dietdoc@...> wrote:

Welcome, Theresa!

I think you will find yourself at home here. Most of the parents have had to

advocate for their children and push for answers.

You might be interested in reviewing the following publications:

1. Jeffery Modell Foundation's Physician Algorthim:

http://www.info4pi.org/researchlibrary/index.cfm?section=researchlibrary & content\

=algorithm & CFID=13653963 & CFTOKEN=74808

2. The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for

Primary Immunodeficiency Diseases

http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm

It is not unusual for a physician to do incomplete testing, stop early at

antibody function, etc... When there is a suspicion of a PID, sometimes you have

to test and re-test before the true circumstances are known. Getting an opinion

from an experienced immunologist is necessary. You mentioned National Jewish

Medical & Research Center. They have top-noch faculty and resources to evaluate

immune and pulmonary issues. I am pasting the website for the lung-line nurses,

for those that are interested. The call is free:

http://www.njc.org/contact/lung/index.aspx

mom to CVIDer

[Guest guest]

I actually have a few thoughts on this

Of course my first thought is he just didn't look hard enough into our case.

I know they are not bad. It is very workable compared to some of the problems

everyone else seems to have.

We were sent to him for a second opinion. A very tricky thing for our

insurance as far as I am concerned. My husband is in the military. From prior

experience I know that when you go for the second opinion you must bring the

diagnosis back to the military doctors for treatment. They must agree with the

diagnosis and then proceed to do what he recommends. My son was seen by a

military doctor and he had told us he coughed out of habit and it was my bad

luck that he had pneumonia twice in the last six months. We went for another

opinion but it had to be civilian. THis doctor was wonderful! He nearly

flipped when he heard Zach's lungs. He thought he had cystic fibrosis-nope. He

did a scope and found the kid was 60% blocked and he then thought he had cilia

immotility-nope. When he went in and saw the infection he treated him with

antibiotics. This is when the military stopped paying for us to see him. I

know of no doctor that would have packed that kid up and and

said sorry you must now verify this with another doctor (oh by the way which

would have been the quack who said he was fine). This Dr Infante maybe telling

me because he can not show support for this he can not give them anything else.

BUT just like you said then what is it? What doctor can help me and why didn't

he send me there.

Maybe I am barking up the wrong tree. My kids also have adrenal

insufficiency. They do not make cortisol. They need to be supplemented by

hydrocortisone daily. When they get sick the body normally signals for more

cortisol. It is somewhat involved with regulation of sugar, blood pressure,

heart rate, GH ,and the immune system. Without this med they can have what they

call a crisis. They have an infection they can't fight and they become septic

and die. We found out that Logan (6 yr old girl) had this problem when she

almost died on us. I made them test Zach two weeks later and he had the same

problem. Zach has responded better than Logan yet Zach has less antibody

responses. She crashes almost every two months. The last one was quick. SHe

came home from school and 15 minutes later she was gray and not responding well.

She was admitted only until she had enough response to the IV hydrocortisone and

antibiotics. The endo believes that they are suppressed by

their asthma meds. I asked Dr. Infante if they can be suppressed by the asthma

meds adrenally can they be suppressed immune system wise. He said if that was

the case the endo would be seeing a lot of asthma patients. I guess he does

not believe that theory. He should know about the immune suppression. so I

guess that is not an option.

Last theory, maybe it is me. I get too involved and too emotional about this.

I think I might need to be more businesslike. I might just need to say, I need

this, this and this addressed by this time. No whishy washy stuff!

Anyway, Logan will go see an ENT in a couple of weeks. She still has sinus

drainage and she just blew the ear drum 10 days ago. They will also see

infectious disease and genetics. Zach just got done seeing a kidney doctor

cause he just had a UTI. I think Zach is developing something. He is very

tired and is starting to have a thicker cough. We shall see what develops.

Thanks for your time and answers

Theresa

Schulman <dietdoc@...> wrote:

Hi, Theresa.

When there is a suspicion of any medical problem, sometimes you have to re-test

before you find answers. (particularly in view of your children's clinical

symptoms). With regard to immune studies, they can be tricky, sensitive, and not

run completely (as Dale said). Also, the child can change over time (with age,

infection, organ damage, etc. etc.). It is hard to imagine that a child that is

suspect, and given antibiotics, would be sent on their way without further

monitoring.

Immunologists will sometimes give a child prophylactic antibiotics to see if

they can avoid the IgG replacement route. We did this for some time and then my

child crashed. My question is: why prophylactic antibiotics if nothing is

wrong??? This is odd and you are in a very difficult situation. I read about

your doc and, as you say, he seems qualified as far as his resume is concerned

(he is also listed at the Jeffery Modell Center). I am floored that you did not

get your needs met from him. But no doc is perfect. If he does not think there

is a PID then why the antibiotics and why not refer to another specialist that

can solve " it " ? I am as confused as you are. So sorry you are going through

this. You are going to have to make some tough choices with regard to whether or

not to seek another opinion. If you want any suggestions, don't hesitate to

post. If you go elsewhere, you definitely want to most bang for your buck. We

traveled across the country to find an

immuno (#2) we could trust.

mom to CVIDer

Re: Hi I am new

thanks for the info. I have seen those websites. I just have not completely

looked at them.

I am interested in why you have to retest. I don't doubt the reasons for doing

this. I just want to know how this helps.

Thanks

theresa

Schulman <dietdoc@...> wrote:

Welcome, Theresa!

I think you will find yourself at home here. Most of the parents have had to

advocate for their children and push for answers.

You might be interested in reviewing the following publications:

1. Jeffery Modell Foundation's Physician Algorthim:

http://www.info4pi.org/researchlibrary/index.cfm?section=researchlibrary & content\

=algorithm & CFID=13653963 & CFTOKEN=74808

2. The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for

Primary Immunodeficiency Diseases

http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm

It is not unusual for a physician to do incomplete testing, stop early at

antibody function, etc... When there is a suspicion of a PID, sometimes you have

to test and re-test before the true circumstances are known. Getting an opinion

from an experienced immunologist is necessary. You mentioned National Jewish

Medical & Research Center. They have top-noch faculty and resources to evaluate

immune and pulmonary issues. I am pasting the website for the lung-line nurses,

for those that are interested. The call is free:

http://www.njc.org/contact/lung/index.aspx

mom to CVIDer

[Guest guest]

" " They [military] must agree with the diagnosis and then proceed to do what he

recommends...I know of no doctor that would have packed that kid up and and said

sorry you must now verify this with another doctor (oh by the way which would

have been the quack who said he was fine). This Dr Infante maybe telling me

because he can not show support for this he can not give them [the military]

anything else. "

Wow! Theresa. Your situation is complicated.

Did the military stop paying for you to see the " good " doc that diagnosed the

60% lung function issue because it was costing them? And then sent you to Dr.

Infante? Did the military doc talk with Dr. Infante? Did Dr. Infante talk with

the " good " doctor? Sorry, but this is all really fishy to me.

Will you be seeing Dr. Infante again? Or was it a one shot deal? It might help

if you could have some follow-up with an immunologist and a period of monitored

observation. It's hard to imagine that Dr. Infante would neglect your children

if he had a chance to see what the heck was going on.

It is not you! Any NORMAL mother would be emotional when her children are sick.

Yes, it does help to be businesslike with the docs, though. An infectious

disease doc or ENT may be willing to communicate with Dr. Infante (at your

request) if they feel that your kiddos need monitoring by an immuno. Sometimes,

an ID may even suggest an alternative treatment.

If you have another chance to see Dr. Infante, I would do whatever it takes to

make sure your kids get a fair and complete work-up. Tell the IDF your

situation (the politics and all) and see if they can advise.

800-296-4433

mom to CVIDer

[Guest guest]

Might have confused you. The first situation was when the doctors were trying

to figure out what was going on with his lungs. THis was a military

pulmonologist that told me there was nothing wrong with his lungs. I got a

second opinion for pulmonology. That civilian pulmonologist did the scope of

his lungs to find an infection. Once the civilian started to treat the lung

situation they refused to pay. I did everything to make them pay and won on a

technicality. Had to go to go to the top Peds doctor. Zach was diagnosed with

bronchiectasis in 2004 as idiopathic.

WE moved from San to Virginia and continued to have problems for two

years. WE moved back to SAn this past summer but we came with more

information. This is where we started to see a few military immunologists. The

first one is overworked and basically said this was out of his league and he

would have to present the case to other military doctors. That guy never really

got back to me. So the peds doctor wanted me to go to the airforce

immunologist. I meant some of these guys when Logan was admitted to the air

force hospital this October. These guys again did not get back to me even when

her bloodwork came back. The peds doctor asked me if I had been told the

bloodwork came back. I said no one called. She saw it and thought that it

looked like she did not make any antibodies for HIB. She emailed them. I

emailed them no response. The lack of response made the peds doctor say they

need someone else. That is where the IDF and Dr INfante come in.

Now the peds doctor told me she had to word the referral a certain way in

order to push it through quickly. I think it was put in as a second opinion. I

was authorized two visits. My guess is that maybe he could not justify the need

for extreme measures like IVIG. He said that you need to be in the 200 for IgG

to go on IVIG. I thought well maybe they just are not bad enough. The lowest

number Zach had was 600 which is borderline low/normal (as per the lab). The

highest he had was 640.

Now to answer if the peds military doctor has spoken to Infante- NO. She has

not been able to contact him. We have seen her and she does want to talk to him

personally. She wants to see what he has to say. I think she was expecting

more guidance from him.

Maybe I am making a mountain out of a molehill. I think I am going to take a

break from Infante. I will let the peds doctor follow up with him. I will

follow the other paths (infectious disease and genetics) to see where that leads

me. It is late and I need to go to bed.

Thanks for your time

Theresa

Schulman <dietdoc@...> wrote:

" " They [military] must agree with the diagnosis and then proceed to do

what he recommends...I know of no doctor that would have packed that kid up and

and said sorry you must now verify this with another doctor (oh by the way which

would have been the quack who said he was fine). This Dr Infante maybe telling

me because he can not show support for this he can not give them [the military]

anything else. "

Wow! Theresa. Your situation is complicated.

Did the military stop paying for you to see the " good " doc that diagnosed the

60% lung function issue because it was costing them? And then sent you to Dr.

Infante? Did the military doc talk with Dr. Infante? Did Dr. Infante talk with

the " good " doctor? Sorry, but this is all really fishy to me.

Will you be seeing Dr. Infante again? Or was it a one shot deal? It might help

if you could have some follow-up with an immunologist and a period of monitored

observation. It's hard to imagine that Dr. Infante would neglect your children

if he had a chance to see what the heck was going on.

It is not you! Any NORMAL mother would be emotional when her children are sick.

Yes, it does help to be businesslike with the docs, though. An infectious

disease doc or ENT may be willing to communicate with Dr. Infante (at your

request) if they feel that your kiddos need monitoring by an immuno. Sometimes,

an ID may even suggest an alternative treatment.

If you have another chance to see Dr. Infante, I would do whatever it takes to

make sure your kids get a fair and complete work-up. Tell the IDF your situation

(the politics and all) and see if they can advise.

800-296-4433

mom to CVIDer

[Guest guest]

Theresa,

I am going to jump in here. I can really empathize with what you are

going through. Having 2 kids myself with multiple medical issues

involving multiple organs. The adrenal problem you mention is a big

one, and someone needs to get to the bottom of it. It could be that

your kids are very sensitive to the inhaled steroids in their asthma

meds and this has pushed them into adrenal insuffeciency. It is very

rare, but it does happen. I have a friend that her son had this

happen. They may need to stop the asthma drugs to test them, which

is hard with their lung issues. ALso the bronchiectasis is a big

deal and the drs should not be blowing you off. Your kids have so

many issues as mine did, what you desparately need is a group

evaluation of your children, with all specialists working up your

kids and then having a meeting about your kids, with you present, to

pull all the info together. Often times this kind of in depth multi

specialty evaluation will not happen with the local drs. You have to

go to the big teaching hospitals where it is common, to have this

done. We have had to do this, actaully we have gone to 5 major

hospitals having this done because our kids keep having issues. It

is expensive, and insurance is a problem, but if you have just 1 dr

in your corner you can usually get it approved. I have found our

local drs are more than willing to make the recommendation for

really anything or any dr I want to see, because they are so

frustrated themselves trying to treat our kids. I bet your drs feel

the same. They would welcome guidance from a well known expert on

your kids issues. If you get insurance approval, you can go on Angel

Flight, or Mercy medical for free flights, and stay at the

Mcdonald House. If you can not get insurance approval you can get

your kids into the NIH(National Institute of Health), through one of

their thousands of trials. WHich can be as simple as an asthma

trial. Once you are there they will explore all avenues of your

child problems, and set you up with multiple drs. They do not charge

any fees for anything they do. They are the leading authority on

most diseases, as most research comes fron the NIH or through trials

associated with the NIH. You have to pay for transportation for your

first visit, then they even pay for transportation after that. Even

for your first visit they give you the free medical flights info. If

you do get insurance approval National Jweish that was mentioned

earlier would be great. Their main thing is lung disease. They are

the world's leading lung disease research hospital. They also

include all aspects that go into lung disease, allergy, immunology,

rheumatology, etc. They will fully evaluate your kids and if other

issues are going on beyond their specialities, they will bring in

drs from Denver Children's Hospital, or send you there. We went

there very early in my daughter's disease, which at the time seemed

mostly lung, and sinus. They started figuring out all the other

things like GI problems, leg numbness, etc all went together. They

consulted other drs from the Children's Hospital, and then they all

got together with the results in a care confernce, then they brought

us in the next day with all the drs there at National Jewish and

told us everything, all their thoughts. That is what you need. We

actually live in Dallas, and see a great immunologist, he is amoung

the best in Texas. I would gladly recommend him, Dr.

Wasserman, but he is no longer taking new patients. His partners are

all good, and I think could give you a good evaluation, but they are

not set up like some of these hospitals we have been to get a group

evaluation. If you are interested I will give you their number and

you could just call and leave a message for the drs to see if they

would see you and help set up all the other consults, to get you a

group opinion. At this point whatever you do, you have to ask before

you go anywhere else if they will do a group evaluation, because if

they won't work as a team for your kids they will never figure it

out. ALso, you are not far from Houston, where Texas Children's is,

and it is amoung the top rated kids hospital in the nation. We went

there mainly seeing pulmonary and ENT, which I was not crazy about

the drs we saw(they kind of blew us off), but I have heard good

things about other depts there.

Also, your kids have so much going on, you may want to see if you

could apply for disability with SSI, which automatically gives you

Medicaid and then you could go anywhere. RIght now my kids

disability and Medicaid pays for us to go all over the country to

the top experts in genetics, autoimmune disease, GI disease,etc. We

go out of state every 2-3 months, to help the drs here in Dallas

have guidance on what to do. My kids got on disability when we did

not know what was going on beyond severe uncontrolled asthma in my

daughter, and autism in my son. They still approved them as disbled

then when we did not know anything of what was really going on. The

income limits are tough but having 2 kids with a disability almost

doubles the limit. If I can help let me know.

> " " They [military] must agree with the diagnosis and then

proceed to do what he recommends...I know of no doctor that would

have packed that kid up and and said sorry you must now verify this

with another doctor (oh by the way which would have been the quack

who said he was fine). This Dr Infante maybe telling me because he

can not show support for this he can not give them [the military]

anything else. "

>

> Wow! Theresa. Your situation is complicated.

>

> Did the military stop paying for you to see the " good " doc that

diagnosed the 60% lung function issue because it was costing them?

And then sent you to Dr. Infante? Did the military doc talk with Dr.

Infante? Did Dr. Infante talk with the " good " doctor? Sorry, but

this is all really fishy to me.

>

> Will you be seeing Dr. Infante again? Or was it a one shot deal?

It might help if you could have some follow-up with an immunologist

and a period of monitored observation. It's hard to imagine that Dr.

Infante would neglect your children if he had a chance to see what

the heck was going on.

>

> It is not you! Any NORMAL mother would be emotional when her

children are sick. Yes, it does help to be businesslike with the

docs, though. An infectious disease doc or ENT may be willing to

communicate with Dr. Infante (at your request) if they feel that

your kiddos need monitoring by an immuno. Sometimes, an ID may even

suggest an alternative treatment.

>

> If you have another chance to see Dr. Infante, I would do whatever

it takes to make sure your kids get a fair and complete work-up.

Tell the IDF your situation (the politics and all) and see if they

can advise.

>

> 800-296-4433

>

>

> mom to CVIDer

>

>

[Guest guest]

excuse the typing errors but I damaged two of my fingers playing football. It

is harder to type than I thought it was going to be. This is going to be short.

Thanks for adding to the emails. i agree that the asthma meds could be

suppressing the adrenal gland. I talked to one of the top peds endos and that

is what he thinks. He spent 6 hours with us going over their records. He was

great. He was the one who told us to re evaluate ther immune system. Which is

what I am trying to do now.

I have begged for all the Drs to get together and talk. I tried to get to NIH

for the adrenal issue (before I knew there was a possible immune issue). We

used to live in that area but we could not get in before we moved.

I think right now I have to find the one Dr here who can help me get to other

places. the problem with the military is that if you don't leave the doctors

will. One of the peds doctor we see left for 4 weeks and we had to go in three

times when he was gone and talk to another Doctor. These are the reasons my

husband is looking to get out. They need stability!!!! Of course the risk of

deployment for my husband is high and that does not help the situation.

I need to go pick up one of my kids at basketball practice.

Thanks for the info and your time

theresa

smoot732000 <smoot732000@...> wrote:

Theresa,

I am going to jump in here. I can really empathize with what you are

going through. Having 2 kids myself with multiple medical issues

involving multiple organs. The adrenal problem you mention is a big

one, and someone needs to get to the bottom of it. It could be that

your kids are very sensitive to the inhaled steroids in their asthma

meds and this has pushed them into adrenal insuffeciency. It is very

rare, but it does happen. I have a friend that her son had this

happen. They may need to stop the asthma drugs to test them, which

is hard with their lung issues. ALso the bronchiectasis is a big

deal and the drs should not be blowing you off. Your kids have so

many issues as mine did, what you desparately need is a group

evaluation of your children, with all specialists working up your

kids and then having a meeting about your kids, with you present, to

pull all the info together. Often times this kind of in depth multi

specialty evaluation will not happen with the local drs. You have to

go to the big teaching hospitals where it is common, to have this

done. We have had to do this, actaully we have gone to 5 major

hospitals having this done because our kids keep having issues. It

is expensive, and insurance is a problem, but if you have just 1 dr

in your corner you can usually get it approved. I have found our

local drs are more than willing to make the recommendation for

really anything or any dr I want to see, because they are so

frustrated themselves trying to treat our kids. I bet your drs feel

the same. They would welcome guidance from a well known expert on

your kids issues. If you get insurance approval, you can go on Angel

Flight, or Mercy medical for free flights, and stay at the

Mcdonald House. If you can not get insurance approval you can get

your kids into the NIH(National Institute of Health), through one of

their thousands of trials. WHich can be as simple as an asthma

trial. Once you are there they will explore all avenues of your

child problems, and set you up with multiple drs. They do not charge

any fees for anything they do. They are the leading authority on

most diseases, as most research comes fron the NIH or through trials

associated with the NIH. You have to pay for transportation for your

first visit, then they even pay for transportation after that. Even

for your first visit they give you the free medical flights info. If

you do get insurance approval National Jweish that was mentioned

earlier would be great. Their main thing is lung disease. They are

the world's leading lung disease research hospital. They also

include all aspects that go into lung disease, allergy, immunology,

rheumatology, etc. They will fully evaluate your kids and if other

issues are going on beyond their specialities, they will bring in

drs from Denver Children's Hospital, or send you there. We went

there very early in my daughter's disease, which at the time seemed

mostly lung, and sinus. They started figuring out all the other

things like GI problems, leg numbness, etc all went together. They

consulted other drs from the Children's Hospital, and then they all

got together with the results in a care confernce, then they brought

us in the next day with all the drs there at National Jewish and

told us everything, all their thoughts. That is what you need. We

actually live in Dallas, and see a great immunologist, he is amoung

the best in Texas. I would gladly recommend him, Dr.

Wasserman, but he is no longer taking new patients. His partners are

all good, and I think could give you a good evaluation, but they are

not set up like some of these hospitals we have been to get a group

evaluation. If you are interested I will give you their number and

you could just call and leave a message for the drs to see if they

would see you and help set up all the other consults, to get you a

group opinion. At this point whatever you do, you have to ask before

you go anywhere else if they will do a group evaluation, because if

they won't work as a team for your kids they will never figure it

out. ALso, you are not far from Houston, where Texas Children's is,

and it is amoung the top rated kids hospital in the nation. We went

there mainly seeing pulmonary and ENT, which I was not crazy about

the drs we saw(they kind of blew us off), but I have heard good

things about other depts there.

Also, your kids have so much going on, you may want to see if you

could apply for disability with SSI, which automatically gives you

Medicaid and then you could go anywhere. RIght now my kids

disability and Medicaid pays for us to go all over the country to

the top experts in genetics, autoimmune disease, GI disease,etc. We

go out of state every 2-3 months, to help the drs here in Dallas

have guidance on what to do. My kids got on disability when we did

not know what was going on beyond severe uncontrolled asthma in my

daughter, and autism in my son. They still approved them as disbled

then when we did not know anything of what was really going on. The

income limits are tough but having 2 kids with a disability almost

doubles the limit. If I can help let me know.

> " " They [military] must agree with the diagnosis and then

proceed to do what he recommends...I know of no doctor that would

have packed that kid up and and said sorry you must now verify this

with another doctor (oh by the way which would have been the quack

who said he was fine). This Dr Infante maybe telling me because he

can not show support for this he can not give them [the military]

anything else. "

>

> Wow! Theresa. Your situation is complicated.

>

> Did the military stop paying for you to see the " good " doc that

diagnosed the 60% lung function issue because it was costing them?

And then sent you to Dr. Infante? Did the military doc talk with Dr.

Infante? Did Dr. Infante talk with the " good " doctor? Sorry, but

this is all really fishy to me.

>

> Will you be seeing Dr. Infante again? Or was it a one shot deal?

It might help if you could have some follow-up with an immunologist

and a period of monitored observation. It's hard to imagine that Dr.

Infante would neglect your children if he had a chance to see what

the heck was going on.

>

> It is not you! Any NORMAL mother would be emotional when her

children are sick. Yes, it does help to be businesslike with the

docs, though. An infectious disease doc or ENT may be willing to

communicate with Dr. Infante (at your request) if they feel that

your kiddos need monitoring by an immuno. Sometimes, an ID may even

suggest an alternative treatment.

>

> If you have another chance to see Dr. Infante, I would do whatever

it takes to make sure your kids get a fair and complete work-up.

Tell the IDF your situation (the politics and all) and see if they

can advise.

>

> 800-296-4433

>

>

> mom to CVIDer

>

>

[Guest guest]

While my experience is limited to the past month, I would say that 1)

YES water kefir is similar but 2 ) NO It is not the same. It's hard to

describe the difference, but I find my GBP easier (so far) to work with

- and the mouth feel of the resulting drink is different. That said,

if you want to choose only one - water kefir is a fine choice.

If you decide to try GBP - make sure you are getting the real thing.

Much of what is sold online is either a hybrid culture of some sort, or

just a yeast mass grown with ginger.

Ev

On 9/17/2010 5:56 AM, srcaudill wrote:

> Hi everybody, although I am new here I have had a little experience with milk

kefir but I would like to get some water kefir. I have not heard of it till

lately. I used to make ginger beer but just using baking yeast. I figure using

kefir has to be much healthier. Has anyone tried using water kefir. I have heard

that it is very similar to the original ginger beer plant.

>

> s. caudill

>

>

[Guest guest]

i have just completed the scs trial and worked fine reduced meds and pain great.

i have been put on the waiting list for perm scs just feeling nervous because i

have no family support or backup and it is just a big decision just looking for

people who have had the perm scs be that good or bad to help me make that

decision.

sandy