Re: Vision therapy?

January 4, 2007

Since my family has CVID, asthma and celiac -- and has done vision

therapy, I'll try and answer this question. I'm very new to CVID, so

somebody else may do a better job of pulling this all together than I

can. But I'll try.

Celiac and CVID are both autoimmune diseases. As an aside ... my

understanding is that CVID can be misdiagnosed as celiac ... we had

incomplete testing for the celiac; just assumed the tests were correct

as I am a biopsy-proven celiac (which is the gold standard for proving

celiac, although we now figure I have CVID as well ... but that's

another story ....).

The human body interfaces with the outside world through the skin, lungs

and g.i. tract. Thus people with weakened immuned systems tend to have

problems with the lungs (i.e. asthma) and g.i. tract (potentially

celiac, crohns, intolerances, absorption, infections). So I'm thinking

that's how they link together.

As for vision therapy ... I'm not sure if there's a relationship to PID.

We were introduced to it through the Gifted Development Center in

Denver, where my kids were both evaluated for gifted issues. I don't

actually think they had " real " vision problems. I think that they were

reading stuff that was meant for older kids (therefore had smaller print

than usual for their age group) and their eyes hadn't adjusted to it.

Now that they're older, those problems seem to have gone away.

I hope that helps. I'm still trying to fit these pieces together myself,

so I'm open to being corrected by somebody whose been around longer than

I have.

Sue in Phoenix

Mom to (12, CVID, celiac, asthma) and Angie (9, celiac)

" Education is not the filling of a pail, but the lighting of a fire. " --

Yeats

tcm_marks wrote:

>

> I am new here, but I was interested in what is vision therapy? I see

> people posting about it. Is it related to PID? How is it related?

> I hope you don't think I am being nosey. I am just trying to

> understand how these things link together (if they do at all).

> Correct me if I am wrong but it seems like if you have PID then you

> have other troubles that go with it?

> I see people with celiac, vision therapy, asthma and other things.

> Are these related to PID? Do you have to watch out for these things

> to develop?

> Just curious.

> thanks for your time

> theresa

>

January 4, 2007

tcm_marks wrote:

>

> I am new here, but I was interested in what is vision therapy? Is it related

to PID? How is it related?

> Correct me if I am wrong but it seems like if you have PID then you

> have other troubles that go with it?

> I see people with celiac, vision therapy, asthma and other things.

> Are these related to PID? Do you have to watch out for these things

> to develop?

from Dale, Mom to Katy, 22, married

Theresa, when Katy was first diagnosed we didn't have this site -- but I

read everything that I could get my hands on and was horrified to

realize that if I put together everything I read -- Katy would have a

terrible future. Fortunately, I got involved with IDF soon after that

and began to put two and two together. Every kid will respond

differently and there is no pattern to CVID -- which is why it is called

" variable! "

CVID is a primary immune deficiency -- that means that it is caused by

genetics -- even though it often appears later in life. It affects many

things -- like the sinuses, the lungs, the gut, muscles, skin, organs,

etc. So, we discuss a LOT of different things here. But that doesn't

mean that every child will encounter all the problems. And there's no

set progression -- first it hits the lungs then the gut, etc. -- that's

just not true. Some kids have only gut issues, some only sinus, and

some only lungs. And some of our kids get all 3 and more.

The other thing that you will come to understand is that because CVID is

genetic, there are some other conditions that are also genetic that seem

to run in higher percentages than normal among our kids. Autism is one.

Sensory integration disorder is another. So, you'll see a lot of the

kids on this list that have multiple problems just because when

something goes wrong genetically -- it often goes wrong in multiples.

So they are really not related to CVID -- but are certainly something

to be aware of.

Then there are the complications of PID -- or secondary problems. These

include all the autoimmune related disease like diabetes, lupus, chronic

fatigue, celiac, hypothyroid, rheumatoid arthritis, you name it -- these

can be caused by the body's immune system being out of whack -- and

there are some nasty ones out there. Someday, hopefully, the research

will lead us to understand all the immune dysregulation diseases -- but

our kids are prone to them. Doesn't mean they will get them -- just

means that they have a higher likelihood of getting them than the

general population and you need to be aware of it.

How do we talk about all these possibilities without your feeling that

your child is going to get all these things? We haven't figured that

out yet -- except to say that with time, you'll see that most people on

this list deal with none or maybe one of the complications and never

encounter the rest. You also need to keep in mind that 1000's of

families have been aided by this website. The majority of them have

come on the site, been active for several months until they get their

diagnosis, figure out treatment options, get their family back on track

emotionally, and get on with life at a new " normal " level. My greatest

joy is getting a note from a family that has been very active saying --

sorry I don't participate more often -- my PID kid is really busy with

soccer or gymnastics or wrestling or skating, etc. and we just don't

need the group anymore. Treatments are going well and it just seems

normal now.

So, ask your questions. There are no bad questions and we'll all try to

pitch in and answer. This group has saved my sanity many, many times!

When Katy started showing all the signs of thyroid dysfunction, so many

of the group had been there, done that -- they helped me to know just

exactly what to expect. Turned out it was her new anti-depressant that

was causing the problems. Once she stopped it, her thyroid level went

back to normal and there wasn't a problem. But we need to be aware of

possibilities.

In His service,

dale

January 4, 2007

Vision therapy is sort of like OT in that it is training the eyes to work

properly. My son went through it and came out reading and enjoying it. He had to

train his eyes to work together by focusing on something at a distance and then

at something close-up. He also wore bifocals through this time as well in order

to make it easier for the eyes to focus when reading. He now don't even wear

them anymore and don't seem to have a problem. We found out about his problem

when the primary doc said that his vision was 20/30 which is worse than before

so I took him to get an exam and then was referred to the eye doc that did the

therapy. It is quite expensive but they usually take a payment plan so that

works.

Cassie

Sue Clayton <sueclayton@...> wrote: