New and Questions

[Guest guest]

Hi! My name is and this is my first post. I've been reading for

a few days now.

I have lots of questions but basically I'll share our story and then you

can tell me if my story is similar to yours or are you all dealing with

different things and I'm on the wrong list. And I won't be offended if

I've not found the right group yet.

I have a 7 year old son. Conner has been sick his entire life. When he

was 16 months old, he had tubes put in the first time. Before those

tubes came out, he started running extremely high fevers and his neck

would get swollen....looked like he had the mumps. They did blood work

and told me it was viral. Until one day, he looked so pitiful the

pediatrician sent us to the ENT for them to look at him. Not long after

he was taken back to surgery, took old tubes out, put new tubes in and

removed his adenoids and tonsils. About a year to year and half later,

he went back to surgery and his sinus cavities cleared out due to

constant sinus infections. CAT scans showed the fluid was never

leaving. Even though he'd go from one round of anitibiotic to another.

Basically for a long time, Conner would be really sick for about a week,

I'd take him to dr. they'd put him on antibiotic. About 48 hours later,

he was better. But sometimes before he even finished anitibotics he was

sick again. Other times it would be within a week after completing that

he was sick again. When he had his sinus surgery, the ENT suggested

testing his immune system. So while he was asleep they did a lot of

tests. When the tests came back, his pneumoccal titers were totally

missing and his IgG was low. We gave him a pneumo vaccine and then

couple of months later, retested him and his pneumoccal titers were

still low. They did transfer him to a asthma and immunology doctor.

The immunologist eventually put him on a maintenance dose of

antibiotic. He's been on that for about 6 months or so now. And that

seems to have helped him! Since the first of the year he's been sick

about 5 - 6 times. Which is so much better than what we'd been dealing

with. He does have asthma that we struggle with on occasion. He's had

pneumonia a couple of times as well. He has never seen a gastro doctor

but he has a lot of problems with his tummy. He has an upset stomach a

lot! And he is extremely susceptible to a stomach bug. Last August, he

saw an orthopedic doctor due to a problem with his neck. He was

eventually transferred to a neurosurgeon because in the MRI/cat scans it

was discovered that he also has a chiari malformation. A chiari made us

wonder if some of his days of general not feeling well is related to his

chiari. We've since learned to tell the difference between chiari and

sickness. In general, if he is sick he runs a fever. If he's just

feeling bad and having a headache with no fever, we've decided it was

chiari.

I made the decision to homeschool because I realized he would never

survive in public school setting. And that has fit our family very

well. I also have a daughter who is five. She is not sickly like

Conner but she has muscular dystrophy. So she has her own set of

special needs. I'm continually thankful that she does not have MD and a

immune problem. However, she has had 2 sets of tubes, adenoids and

tonsils removed. We did check her immune system as well and discovered

her pneumoccal titers were low and gave her the pneumo vac as well.

Rechecked her and her pneumoccal titers did increase after vaccination.

But she is not nearly as sickly as Conner is.

I've done no research on this stuff so I know very little about what's

going on and probably not even enough to ask informed questions. I

guess I've just hoped that as he grew it would get better. I know our

immunologist has mentioned IVIG therapy but said that we would try

maintenance antibiotic first. And the constant antibiotics seems to

have helped him. He's still sick but not like what he was. We see the

immunologist in August so I thought I'd research a little so I could ask

better questions.

So here goes all the questions...

Given my information....does my child have a Primary Immune Deficiency?

Is my story similar to any of yours? Are his stomach problems related

and do I need to bring that up to the immunologist? Do your children

struggle with asthma as well? What does CVID stand for and mean? Any

information you would like to pass on to me would be helpful. And I'm

sure I'll have more questions as I learn about this.

Thank you so much.