When You're told Your Child Doesn't or has Never had an Immune Deficiency

September 24, 2008

Ok...

I dont post often but I need to hear other stories suggestions etc as I am VERY

upset, ticked off you name it its me.

My Son is 10 and we have been on IVIG for 5 years, have a port for it too.

My son Max had poor response to pneumococcus titers and T cell dysfunction

according to testing in MN.

has had the diagnosis of Igg subclass deficiency, Hypogamma and possible

combined immune deficiency.

His las testing in '06 off IVIG for 3 months showed totall Igg of 525 (norm

>650) Igg subclasses low, poor pneumococcus response, NO polio vaccine response

and something with diptheria and tetanus response as well. ( I dont remember)

his wbc is chronically low, (almost cyclic) he has chronic sinus disease, asthma

and GERD. He's had 2 PICC lines for IV antibiotics, multiple sinus surgeries,

fungal sinus infection, (it ate away at his bone on the orbital floor)

We went to National Jewish in Denver today for a 2nd opinion. I wanted to rule

out any X linked disorder because the 2 boys have issues and my 6y.o. girl is

fine. That and when I went to the IDF conference one of the docs suggested it as

well. The boys were orignally tested and diagnosed in MN but we are now living

in NM. So this world renowned immunologist walks into the appt today and says

that the boys Do NOT have an immune deficiency, that we need to take off

IVIG and the re vaccinate him and test him in 3 months. Even thought we are goin

into cold and flu season he's confident they will be ok because his immune

system is fine. According to him ANY response to ANY vaccine means function of

his immune system is fine. The only blood test they did today was a CBC and a

complement test. They said its really his asthma that is bad. (HIS ASTHMA IS

CURRENTLY WELL CONTROLLED IN MY BOOK, we;ve only needed oral steroids 2x's this

year)

They did NO testing on Max except skin allergy testing. which was negative and

only responded to the mold that was the same one that was his fungal

infection. They also said that since the kids are allergic to meds, and that we

have an allergic family that the3y cant have an immune problem because you can't

be allergic if you have an immune problem

We go back tomorrow and will have a chest and sinus CT and then we will

meet the fellow and immunologist again.

Any help suggetions etc would be very helpful. I just dont know what to do. I

dont know why our kids have to become septic, have a poor quality of life etc,

just to be noticed. WE have worked very hard to keep the boys looking as healthy

as they do and now because they " look good " ( the immunologists exact words)

that they are fine.

Missy Boggio

September 25, 2008

....

Thank you Thank You..

Thatis EXACTLY what he said. The allergy thing blew us away as he only tested

positive to Alternaria which was his fungal infection. He also said that we only

tested him for certain allergies, not all so there were bound to be others. His

Chest CT showed thickening but of course that was all related to asthma.

Is your son on IVIG now? Did you ever go back to Dr Gelfand? Did you ever take

your son off IVIG?

~ Thanks a ton... you made me feel so much better!

Missy

From: TERESA EOS <tereeos6@...>

Subject: FW: When You're told Your Child Doesn't or has Never had an

Immune Deficiency

Date: Thursday, September 25, 2008, 11:15 AM

From: tereeos6msn (DOT) comgroups (DOT) comSubject: RE: When

You're told Your Child Doesn't or has Never had an Immune DeficiencyDate: Thu,

25 Sep 2008 10:05:48 -0600

Hi , I had to respond to your post. I live in a suburb of Denver and went

to National Jewish last April. I saw Dr. Gelfand, he came in without seeing any

of my sons records and declared he didn't have an immune deficiency. His words

" look at him, he's a healthy teenager " . His reasoning was if he had any seasonal

allergies he couldn't have an immune deficiency just poorly treated allergies. I

told him we had been down that road for years with no success. My son's

bloodwork sounds much like your son's . No response to vaccines, low igg,

chronically low wbc. A very long history of pneumonias, sinus infections,

cellulitis, multiple peptic ulcers, bouts of colitis, etc.....My son's a very

active teen plays competitive basketball so that stress on his body is probably

too much at times, but he loves it and is good at it so I would never take it

away. Even on IGG he still has more than his share of problems. My son's

immunologist trained under Dr.

Gelfand and I had only gone to see him because our insurance was changing and

thought I needed to have a doctor in-line if we had to switch. My son's doctor

was shocked at how he acted and what he said. I talked to my doctor who spoke

with Dr. Gelfand and his belief is that unless your igg numbers are non-existent

or below 300 you do not have an immune deficiency, no matter the clinical

picture or quality of life aspect. He believes in his words " igg is used as a

crutch " and should only be used for the most severe cases. Mom to Devin

15, CVID

groups (DOT) comFrom: m_boggio (DOT) comDate: Wed, 24 Sep 2008

21:55:32 -0700Subject: When You're told Your Child Doesn't or has Never

had an Immune Deficiency

Ok...I dont post often but I need to hear other stories suggestions etc as I am

VERY upset, ticked off you name it its me. My Son is 10 and we have been on

IVIG for 5 years, have a port for it too.My son Max had poor response to

pneumococcus titers and T cell dysfunction according to testing in MN. has

had the diagnosis of Igg subclass deficiency, Hypogamma and possible combined

immune deficiency. His las testing in '06 off IVIG for 3 months showed totall

Igg of 525 (norm >650) Igg subclasses low, poor pneumococcus response, NO polio

vaccine response and something with diptheria and tetanus response as well. ( I

dont remember) his wbc is chronically low, (almost cyclic) he has chronic sinus

disease, asthma and GERD. He's had 2 PICC lines for IV antibiotics, multiple

sinus surgeries, fungal sinus infection, (it ate away at his bone on the orbital

floor) We went to National Jewish in Denver today for a 2nd opinion. I wanted to

rule out any X

linked disorder because the 2 boys have issues and my 6y.o. girl is fine. That

and when I went to the IDF conference one of the docs suggested it as well. The

boys were orignally tested and diagnosed in MN but we are now living in NM. So

this world renowned immunologist walks into the appt today and says that the

boys Do NOT have an immune deficiency, that we need to take off IVIG and

the re vaccinate him and test him in 3 months. Even thought we are goin into

cold and flu season he's confident they will be ok because his immune system is

fine. According to him ANY response to ANY vaccine means function of his immune

system is fine. The only blood test they did today was a CBC and a complement

test. They said its really his asthma that is bad. (HIS ASTHMA IS CURRENTLY WELL

CONTROLLED IN MY BOOK, we;ve only needed oral steroids 2x's this year)They did

NO testing on Max except skin allergy testing. which was negative and only

responded to the

mold that was the same one that was his fungal infection. They also said that

since the kids are allergic to meds, and that we have an allergic family that

the3y cant have an immune problem because you can't be allergic if you have an

immune problem We go back tomorrow and will have a chest and sinus CT and

then we will meet the fellow and immunologist again.Any help suggetions etc

would be very helpful. I just dont know what to do. I dont know why our kids

have to become septic, have a poor quality of life etc, just to be noticed. WE

have worked very hard to keep the boys looking as healthy as they do and now

because they " look good " ( the immunologists exact words) that they are fine.

Missy Boggio

September 25, 2008

MY son is EXTREMELY Allergic. We are told by our Immunologist that trained from

National Jewish that it is an indication of immune dysregulation. Basically

there are extremes on both ends. I just remembered that both of mine are trained

from National. The one I have here in Tulsa was a student of the one in

Bellingham, WA.

BARBIE

When You're told Your Child Doesn't or has Never