New and confused!

[Guest guest]

Hi Kim,

My son is 5 and was never small or sickly-but always sick. Does that

make sense?? We had the ear surg, tonsils, adenoids, asthma,

allergies, reflux ETC! I just kept insisting that it wasn't a

coincidence that he had all these diagnoses. And the doctors

insisted it was. It was finally the allergist that started running

the Ig tests a few years ago. His numbers never went up so he did

titers to the vaccinations to see if he created antibodies. He did

that test about 10 months apart. That was the defining moment for

us. The low IgG, constantly sick, and finally no response to

vaccinations.

I really recommend getting a team of docs that you really like and

seem to want to help. Our pediatrician is well liked by us and other

docs, and he communicates really well with the specialists. Our doc

is willing to say " i don't know, let's refer you to someone who is an

expert. " and then he stays in touch with them. What doctor

suspected it and started testing? Does he have an allergist yet? I

hate to say it, but are you working well with a ped. that thinks

you're nuts??? Trust your mommy instinct and don't be afraid to

pursue it. If the pediatrician is right, then she gets to say " I

told you so " and you get peace of mind. If she's wrong, then you are

going to be able to help your son. Either way it works out okay for

you. It sounds like your instinct is strong, if you're getting him

checked out.

Hang in there!

Janet

>

> Thanks so anyone who can help me make sense of this! My son is

> 19mo. old and is being tested/suspected of an immune disfunction.

> He has had recent blood work that indicates the following

> abnormalities:

> IGGSerum 531 Low (533-1078)

> Subclass 1= 330 (170-950)

> Subclass 2= 97 (21.5-440)

> Sublcass 3 =(13.4-69.4)

> Sublcass 4 = 2.2(.4- 120)

> Other abnormal/out of range things were:

> Carbon Dioxide= 18 Low

> Creatinine = .3 Low

> BUN/Creatinine Ratio= 33.3 High

> LD = 300 High

> Transferrin Saturation 13 Low

> TSh = .57 Low

> T3 Total = 260 High

>

> Other clinical things about my son:

> Born premature 36 weeks (not too premature) with Respiratory

> Distress Syndrome and in NICU for 8days

> Rehospitalized at 19days old for Osteomylitis caused by a staph

> infection given by NICU (hospitalized for 1mo)

> Has had pneumonia

> Has GERD

> he's had the flu but recovered quite well

> has recurrent yeast infections until we gave him diflucan

> Has asthma that seems to be controlled by advair, flonase, and

Qvar,

> although we were on the nebulizer machine all through the winter

> In the winter he always seemed to have bronchitis of some sort

> He is allergic to milk (had hives, rashes until we figured this out)

> He is a very hearty boy...90th%tile for height and weight. He was

> never a failure to thrive kid.

> He seems and looks very healthy to most people. I ahve to say

after

> reading a lot of these posts, he does not seem to have as serious

as

> problems as a lot of the chidlren on this listserv. Are we being

> too sensitive? OR is this just hte beginning? He just doesn't

look

> like a sickly kid and he hasn't been hospitalized since early

> infancy.

> Our regular ped thinks we are nuts. The only reason he is being

> suspected is b/c we are also seeing a holistic doc and a

> nutritionist. They both suggested this line of testing after his

> original blood work came back (and his clinicial signs). We are

> retesting the subclasses etc in June.

> I'd love to hear your thoughts on the way he presents. I have NO

> IDEA what makes a kid be a candidate for an immune deficiency. Do

> you get exact testing done that says " yes, he has it " or " no, he

> definitly does not. " Our ped won't even talk to us about it b/c

she

> thinks we are nuts. Thanks! Kim

>

[Guest guest]

---I think your best bet would be an immunologist or infectious

disease dr., if you are looking at immune deficiency. They would be

able to tell you what is going on, most likely.

My kids constantly flaring asthma is what led us to test immune function.

Our pulmonologist told us that the reason it took us so long to get

accurate help, most likely, is bc my older son LOOKED so healthy--big

boy, rosy cheeks, blond curls. He did not, in any way, look sick. My

younger son, once he was born, was the image of his brother, just

smaller and sicker--and once I had TWO of them, things started to get

done a little sooner.

I have 3 kids with immune def, and on IVIG monthly. Their main

problems are sinus infections, bronchitis and asthma flares and

difficulty clearing infections with antibiotics. We have seen a great

turn around since starting IVIG. My kids are low in IgA, IgG, and IgM.

I dont really know about your other labs, but Im sure someone here

will chime in.

valarie

In , " ksteltz77 " <kmay77@...> wrote:

>

> Thanks so anyone who can help me make sense of this! My son is

> 19mo. old and is being tested/suspected of an immune disfunction.

> He has had recent blood work that indicates the following

> abnormalities:

> IGGSerum 531 Low (533-1078)

> Subclass 1= 330 (170-950)

> Subclass 2= 97 (21.5-440)

> Sublcass 3 =(13.4-69.4)

> Sublcass 4 = 2.2(.4- 120)

> Other abnormal/out of range things were:

> Carbon Dioxide= 18 Low

> Creatinine = .3 Low

> BUN/Creatinine Ratio= 33.3 High

> LD = 300 High

> Transferrin Saturation 13 Low

> TSh = .57 Low

> T3 Total = 260 High

>

> Other clinical things about my son:

> Born premature 36 weeks (not too premature) with Respiratory

> Distress Syndrome and in NICU for 8days

> Rehospitalized at 19days old for Osteomylitis caused by a staph

> infection given by NICU (hospitalized for 1mo)

> Has had pneumonia

> Has GERD

> he's had the flu but recovered quite well

> has recurrent yeast infections until we gave him diflucan

> Has asthma that seems to be controlled by advair, flonase, and Qvar,

> although we were on the nebulizer machine all through the winter

> In the winter he always seemed to have bronchitis of some sort

> He is allergic to milk (had hives, rashes until we figured this out)

> He is a very hearty boy...90th%tile for height and weight. He was

> never a failure to thrive kid.

> He seems and looks very healthy to most people. I ahve to say after

> reading a lot of these posts, he does not seem to have as serious as

> problems as a lot of the chidlren on this listserv. Are we being

> too sensitive? OR is this just hte beginning? He just doesn't look

> like a sickly kid and he hasn't been hospitalized since early

> infancy.

> Our regular ped thinks we are nuts. The only reason he is being

> suspected is b/c we are also seeing a holistic doc and a

> nutritionist. They both suggested this line of testing after his

> original blood work came back (and his clinicial signs). We are

> retesting the subclasses etc in June.

> I'd love to hear your thoughts on the way he presents. I have NO

> IDEA what makes a kid be a candidate for an immune deficiency. Do

> you get exact testing done that says " yes, he has it " or " no, he

> definitly does not. " Our ped won't even talk to us about it b/c she

> thinks we are nuts. Thanks! Kim

>

[Guest guest]

I don't have any answers for you.but wanted to welcome you to the list. My

boys have Shwachman-Diamond Syndrome along with low immunoglobulins and we

just found out last week that our also has a PRF1 mutation and we are

trying to determine what that means for him. Our family website:

www.shwachman.50megs.com <http://www.shwachman.50megs.com/>

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

[Guest guest]

My sons total IgG levels were in the 400's and the

normal for him was 600-something. I am not sure about

the subclasses. I also don't know what makes a kid a

candidate for immune problems other than they have a

lot of infections. My son was full term baby but he

also had recurrent infections and as a result we did a

trial of IvIg for the past year and it has helped him

a lot.

Cassie

www.marykay.com/cassieredinger

[Guest guest]

ksteltz77 wrote:

>

>

> Thanks so anyone who can help me make sense of this! My son is

> 19mo. old and is being tested/suspected of an immune disfunction.

> He has had recent blood work that indicates the following

> abnormalities:

> IGGSerum 531 Low (533-1078)

> Subclass 1= 330 (170-950)

> Subclass 2= 97 (21.5-440)

> Sublcass 3 =(13.4-69.4)

> Sublcass 4 = 2.2(.4- 120)

In the winter he always seemed to have bronchitis of some sort

I have NO

> IDEA what makes a kid be a candidate for an immune deficiency. Do

> you get exact testing done that says " yes, he has it " or " no, he

> definitly does not. " Our ped won't even talk to us about it b/c she

> thinks we are nuts. Thanks! Kim

>

Kim, the definition of immune deficiency would fall somewhere around --

failure of the immune system to provide adequate protection against

germs. It includes many, many different aspects. Unless your

subclass 3 is low (you didn't post that) then every thing else is very

close to being normal. That being said, your son is in that early

stage of developing his immune system and very few doctors will make any

kind of decision regarding a definite diagnosis until after the age of

2. And since he had a rough start to life, I'm hoping that his immune

system is just weak and will take over beautifully in a few more months.

It's very possible that the chronic bronchitis and asthma is more

associated with his respiratory distress at birth and less with an

immune deficiency. Once you have pneumonia or bronchitis, it weakens

the system and makes it easier to get it the next time. So, I'm hoping

that this is something that your son will outgrow shortly and get

stronger and overcome.

The IgG level is slightly low, but possibly not significantly so, since

the IgG subclasses are in the normal ranges. But if his clinical

picture is yucky -- then maybe there's something to that low number.

What would be more significant is whether or not he produces titers to

his vaccinations.

The other thing I want to encourage you to do is to communicate with

your doctor. Either change doctors or communicate! I'm in a dispute

with my doctor right now about an issue -- but I've made an appointment

to talk it out and find out why she made the statement she made. I

either will resolve the dispute -- or change doctors because I've got to

have a doctor that I can discuss things with and trust. That's vitally

important if you've got a sick child.

Now, even if it turns out that your child has an immune deficiency,

nothing is going to happen fast. There's usually another 6 months of

testing and seeing specialists and the whole " let's wait and see how he

does on antibiotics " routine before anything is done. So, don't tell

yourself that if it's an immune deficiency, then you'll get started on

treatment and it will be fixed tomorrow. It doesn't work that way

unless your child is in a life-threatened situation. You are wise to

check these things out. But, there's no need to rush. Another reason

to not rush is that your son is still too young for a definite

diagnosis. So, I'm hoping that you'll take a deep breath, figure out

what your relationship is with your pediatrician, and see if he/she will

order the tests to check his response to his pneumonia vaccine. That

would be the next step as far as I know.

I'm glad your other doctors are considering immune deficiencies -- that

tells me that the educational parts of the Immune Deficiency Foundation

and the Modell Foundation are beginning to pay off. Maybe our kids will

get diagnosed faster the more doctors think to check these things out!

So Hurrah for your doctors!

God bless you as you parent. You've been through some really rough

times. Hopefully your son will just continue to improve and you can

enjoy the journey with him!

In His service,

dale

[Guest guest]

Our ped won't even talk to us about it b/c she

thinks we are nuts. Thanks! Kim

Kim,

Without going any further with explanations about the criteria for an immune

deficiency (which you will get amazing information about here from some

very, very knowledgable people) I need to tell you. . . you need a NEW PED!!

We also had a " hearty " son, who had a difficult (in my books) time with

infections, fatigue, etc.. My ped blew me off on the immune issue, over and

over

and told me to stop looking for a problem that doesn't exist. Yet, he had

no problem pumping abx after abx into my son for one ear infection after

another. I finally had to take him into his oncologist to see if he could get

us

in through the " back door " with the ID doc who shared the same clinic space.

I worked and he was admitted and after several tests showing abnormal t and

b cell issues he was started on a trial of IVIG. We changed Peds immediately

because his lack of awareness of the issue and the lack of support on his

part in finding an answer to my son's problems was unacceptable. I wasn't

empowered until my suspicions were confirmed and then I felt like saying " I

told

you so. . . " LOL. Now, I change in a flash if I don't feel like my

children's needs are first and foremost rather than some preconcived idea of

what and

what not to expect with any given child.

I wish you the very best of luck in finding your answers.

Curkendall

Mommy to Annette, specific antibody deficiency and Subclass IGG 2 adn 4

deficient. IVIG x 4 years, Sub Q IG x 18 months and LOVES it.

pervious T and B cell abnormalities and antibody deficiency. IVIG x

18 months. He had a complete recovery of function at the 6 months post IVIG

trial and remains IVIG free. In the process of retesting all of his

immunizations for the 3rd time to see if he held them this time.

Mommy to 3 other beautiful and complicated children as well. LOL

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi all!

I've been recently diagnosed with candida and multiple food sensitivities. It

seems like every recipe I come across that looks palatable to me has something

that I have a sensitivity to, such as eggs.

I guess a question would be, can I use Ener-G egg replacer in place of eggs for

breads even though it contains potato starch? Also, in regards to onions, I

can't stand the texture unless they are cooked down considerably, is that ok?

Aren't they sugary that way or am I way off?

I've purchased the Candida Cure book amongst a few others and there is so much

conflicting info, I have no idea where to start or what to follow!

Thanks alot!

Autumn

[Guest guest]

>

> Hi all!

>

> I've been recently diagnosed with candida and multiple food sensitivities. It

seems like every recipe I come across that looks palatable to me has something

that I have a sensitivity to, such as eggs.

>

> I guess a question would be, can I use Ener-G egg replacer in place of eggs

for breads even though it contains potato starch? Also, in regards to onions, I

can't stand the texture unless they are cooked down considerably, is that ok?

Aren't they sugary that way or am I way off?

>

> I've purchased the Candida Cure book amongst a few others and there is so much

conflicting info, I have no idea where to start or what to follow!

>

+++Hi Autumn,

Welcome to our group. The reason you have sensitivity to good foods like eggs

is because they are high in sulphur which is an important mineral your body

needs in order to detoxify itself. Detoxifying reactions do create many

symptoms that are unpleasant but necessary. See Healing Foods, Herbs and Spices

Create Healing Reactions to understand it:

http://www.healingnaturallybybee.com/articles/heal14.php

It is impossible for Humans to be allergic to good foods like eggs since our

bodies are designed by Nature to consume them in order to be healthy.

That's why many members of this group, including babies and children, have been

able to eat eggs, but they must start with small amounts, i.e. 1 teaspoon of egg

yolk with meals 3 times a day, and gradually increase them so their healing

reactions are tolerable.

You do not want to have any kind of alternative Eggs, like Ener-G, since they

are processed and not the real thing, so they won't provide the nutrients your

body needs.

Carbs are all plant foods, including vegetables, and cooking them makes their

nutrients more available - See this article to understand why:

http://www.healingnaturallybybee.com/articles/veg3.php

There are no breads, cereals, pasta, etc. on my program since they change into

sugar in your body which feeds candida and are just like eating sugar.

The Candida Cook Book you bought probably won't help you since most candida

programs allow foods and toxins that feed candida. Instead, see the recipes on

my website:

http://www.healingnaturallybybee.com/recipes/index.php

Also you can join my Candida Recipes Group:

Recipes_For_Candida_Healing/

But first it is important that you understand what you need to do and why by

reading two important articles:

How to Successfully Overcome Candida, includes food and supplement lists:

http://www.healingnaturallybybee.com/articles/intro2.php

Curing Candida, How to Get Started:

http://www.healingnaturallybybee.com/articles/intro1.php

For encouragement and inspiration see these 200 wonderful Success Stories by

members of this group:

http://www.healingnaturallybybee.com/success/index.php

All the best, Bee