Re: Twins with CVID (hello)

[Guest guest]

Hi ,

I just wanted to say hang in there. Today, I also found out that

won't be going to school next year (again). Seems like there's quite a bit

of that going around. Since he is low on IgA, there really isn't anything

for us to do but wait. The good news is, his Ped thinks he will outgrow

this--probably at puberty. So, it's hurry up and wait around here.

Do you home school or have a tutor through the school district? I think

the only way I can keep my sanity (I'm a single Mom) is because of the tutor.

Since I do everything else, I am so happy that someone comes to teach him!!

It's just a thought, maybe give yourself a break. The tutor is only here

three times a week, a total of five hours, but that is " my time " .

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

,

Have you read the Patient and Family Handbook that's on the IDF website? It

might give you some more information about what you're dealing with. You

can find it at www.primaryimmune.org.

I'm sorry the girls feel so bad lately. I talked with my daughter about

having a pen pal & she loves the idea. Let me know if the girls want to do

it.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (14 months)

[Guest guest]

Yes I have a copy of the stuff from IDF and we watched the movie with the girls

and they asked me if they were going to die. They have just come up with some

real hard questions for me to answer. I just answer them the best I know how

and then when I am alone I cry. Sometimes I cry and can't figure out where the

tears are coming from. I thought I cried them all out doctors ago. It just

seems everytime we go which is often the doctors don't ever have anything good

to tell me. It seems all they ever have is bad news and they always say it in

front of the girls. Which I have never lied to the girls and never hid anything

from them about this. I have always tried to be honest. Talk again later. Pen

Pals would be great.

Ray <sandraray@...> wrote: ,

Have you read the Patient and Family Handbook that's on the IDF website? It

might give you some more information about what you're dealing with. You

can find it at www.primaryimmune.org.

I'm sorry the girls feel so bad lately. I talked with my daughter about

having a pen pal & she loves the idea. Let me know if the girls want to do

it.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (14 months)

[Guest guest]

Sassy,

Do you ever get over that fear? When my husband tries to get me to

leave for awhile I do, but I worry the whole time that I am gone. I get so sick

of getting up every morning and giving the girls four or five pills a day. I

hate the fact that I can't help them. I don't sleep good at noght because I am

afraid of what might happen while I am asleep. I have had the ambulance at my

house to many times to not worry. Kelsey went into a comma when she was 18

months old for 18 in half hours and the doctors did not know why and they told

me that they did not know if she would wake up or not. I have had to many close

calls with other infections too. I jsut wish that this trip to duke would hurry

up and get here. Waiting is driving me crazy. I want my girls to be able to do

things that other boys and girls do and not be so sad all the time and be able

to play without it wearing them out. Talk again later.

SassyKay418@... wrote: Hi ,

I just wanted to say hang in there. Today, I also found out that

won't be going to school next year (again). Seems like there's quite a bit

of that going around. Since he is low on IgA, there really isn't anything

for us to do but wait. The good news is, his Ped thinks he will outgrow

this--probably at puberty. So, it's hurry up and wait around here.

Do you home school or have a tutor through the school district? I think

the only way I can keep my sanity (I'm a single Mom) is because of the tutor.

Since I do everything else, I am so happy that someone comes to teach him!!

It's just a thought, maybe give yourself a break. The tutor is only here

three times a week, a total of five hours, but that is " my time " .

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

,

I always say that waiting is one of the hardest parts for parents of PID

kids. We are always waiting for something, for them to get sick enough for

treatment, or for test results, or whatever. After a while, you will get

better at this part. I won't say that practice makes perfect, but you will

find yourself getting stronger as time goes on. I think it must be so

difficult to have two PID kids. But I also see a silver lining: they can

play with each other. I'm not sure if you ever said or not, but do you

homeschool? Or does the school district send a tutor?

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

All I can say, , is that I don't know HOW you deal with two PID

kids! One is bad enough more days in our house. If it helps at all,

Rebekah aches every day somewhere! She is tired and cranky most days. She

is living on antibiotics and actually asked to go see Dr. Kobrinsky for the

" pokey medicine " so she could feel better. Hey, she's two! It's not like

she has a lot of language! But, I thought it was cute.

We go through months where it seems all we do it go to doctors and wait for

test results. Then, we had a wonderful 3 month period where she was

reasonably normal (post IVIG, healthy siblings, etc.) I treasured each day

because I KNEW they would end. And they have. Things will be better after

they restart the treatments. Are you homeschooling them or are you having a

teachers come to them?

Big hugs from Minnesota coming your way!!

Pam

Twins with CVID (hello)

Hello Everyone,

Sorry I have not been answering everybody or even just getting on

here and talking. and Kelsey have not been feeling all that great

lately and has had to start some new meds. They have been really

tired lately and lots of aches and pains. We have a headaches and tu

[Guest guest]

Sandi,

Hello, Yes they are at home all thetime. Their Daddy is a public school

teacher. He teaches highschool. So the girls are on homebound. Their Daddy

being a teacher cand teach them. They are enrolled in the public school system

but because of health reason they can't attend so the the doctor fills out these

papers and the county puts them on homebound until they can attend. Then after

theri Daddy gets out of school he comes home and teaches them. He does get paid

for this.

I guess the reason waiting is killing me is because I have done this so long

that I have no more patience left. The girls go to see their immunologist today

at 1:30 I am dreading it. He does not take blood or nothing I am just tired of

doctors. The girls at this present moment have a specialist on every floor of

Childrens, And see at least one of them a week. Well talk again later.

SassyKay418@... wrote: ,

I always say that waiting is one of the hardest parts for parents of PID

kids. We are always waiting for something, for them to get sick enough for

treatment, or for test results, or whatever. After a while, you will get

better at this part. I won't say that practice makes perfect, but you will

find yourself getting stronger as time goes on. I think it must be so

difficult to have two PID kids. But I also see a silver lining: they can

play with each other. I'm not sure if you ever said or not, but do you

homeschool? Or does the school district send a tutor?

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

I am waiting for the day that I don't have to go to the doctor with the girls.

In the last seven years iI might have had a week with no doctors appointmant to

go to. It seems that is all I do. Everynight before the girls go to sleep

there last question to me is what doctor do we go see tommarrow. And are they

gonna poke me. My baby girl does not have this CVID. But the doctors

have all told us that she could develope it due to thefact that her sisters have

it. I hope not. I would really lose my mind then. She does not like doctors.

and Kelsey never had the chance to build up a fear or dislike for doctors.

Because every time they turn around there is a doctor in their face doing

something to them. Thank you for your thoughts and prayers. The girls are

homebounded. Tehy are enrolled in the public school system but don't attend

becuase of health reasons and their Daddy is a public school teacher and he

teaches them at home after he gets out of school. Talk again later

Pam Mork <pmork@...> wrote: All I can say, , is that I don't know

HOW you deal with two PID

kids! One is bad enough more days in our house. If it helps at all,

Rebekah aches every day somewhere! She is tired and cranky most days. She

is living on antibiotics and actually asked to go see Dr. Kobrinsky for the

" pokey medicine " so she could feel better. Hey, she's two! It's not like

she has a lot of language! But, I thought it was cute.

We go through months where it seems all we do it go to doctors and wait for

test results. Then, we had a wonderful 3 month period where she was

reasonably normal (post IVIG, healthy siblings, etc.) I treasured each day

because I KNEW they would end. And they have. Things will be better after

they restart the treatments. Are you homeschooling them or are you having a

teachers come to them?

Big hugs from Minnesota coming your way!!

Pam

Twins with CVID (hello)

Hello Everyone,

Sorry I have not been answering everybody or even just getting on

here and talking. and Kelsey have not been feeling all that great

lately and has had to start some new meds. They have been really

tired lately and lots of aches and pains. We have a headaches and tu

[Guest guest]

,

I'm glad your husband teaches your daughters. If there is one single thing

I do that helps me cope it is having SOMEONE ELSE teach . He is a great

kid, and learns easily, but I do everything else. I really don't want to

teach him--I have been so lucky with our current school district. They are

wonderful.

I just wanted to tell you that I can sometimes only handle this one day at

a time. I can't think about everything, including the future, or it will be

overwhelming. I just worry about today, and maybe the rest of the week and

leave it at that. just got over a sinus infection (he's still on

antibiotics) and woke up today with a cold. So, that means another sinus

infection. But worrying won't help, I just need to handle whatever comes my

way today. I guess action makes me feel better than worry. Anyway, that's

just my two cents.

, I hope you take this in the right way, but do you have a

personal physician for yourself? I was wondering if you might be depressed?

It might help if you tell your concerns and feelings to your doctor. You can

only take care of your daughters if you take care of yourself, also. I don't

mean to be too personal, but you seem very sad. I would love for you to feel

better. E-mail me anytime--either through the group, or my personal e-mail.

Last year, my former boyfriend committed suicide. It was very difficult for

me to cope with as we were very close--and I had known him for twenty-five

years. I went though a depression last summer and it wasn't fun. I can tell

you that I feel better now, and my son enjoys me so much more. My energy is

better also. So, I have been there, many of us have. For most of us, it's

something we have had to deal with.

Take care--

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.