The kids can't seem to get healthy

[Guest guest]

Last Saturday night my 2 3/4 year old, Charlie, who is nearly an insomniac told

me at 7 pm " I'm sick, I'm tired, and I want to go to bed when this show is

over. " WHAT??? Not a good sign, well, since then his temp has ranged from 101

- 104 and he has been to the doctor TWICE. A virus it seems. Last week was his

first week back to preschool for the fall, out of 4 days so far, he's been there

ONE, and will not be there again tomorrow. not bad 1 day out of 5 I guess. Of

course, Kate, the nearly 1 year old ALSO has it, between the two of them we've

made 5 visits to the doctors already this week. Not including the three trips I

made back and forth to pick up UI bags, get more bags and drop of urine. Kate

now has croup on top of whatever else they have. Did I mention last week

Charlie had scarlet fever, FOR THE THIRD TIME IN SIX MONTHS?? Why do we even

bother with the daily antibiotics?

I'm so frustrated for them. What kind of life is this? THAY ARE ALWAYS SICK.

They drew Charlie's blood on Monday when he went in with a fever of 104 despite

having tylenol. Poor kid told me " It scares you (meaning me) to have the hold

down. " It takes 4 of us to hold him down. He see's the immunologist on Monday,

and half of me hopes he's still this sick so he'll know what we're talking

about. Kate's already been diagnosed with hypogam and the ped ran a

immunoglobin panel on Charlie that showed he has a less severe case of the same.

I'm in a pity day. I know I need to just be greatful it's not worse, and I am

greatful for that... I'm just tired. Don't you ever wish your kids didn't have

this extra stuff to deal with??

Dayna

[Guest guest]

In a message dated 9/11/2003 8:51:25 PM Eastern Daylight Time,

fladfam@... writes:

I'm in a pity day. I know I need to just be greatful it's not worse, and I

am greatful for that... I'm just tired. Don't you ever wish your kids didn't

have this extra stuff to deal with??

Dayna

Every single day, Dayna, every single moment of every single day.

Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9

(she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

Oh Yea, Charlie is now barking like a seal too. It's gonna be a long weekend.

Dayna

The kids can't seem to get healthy

Last Saturday night my 2 3/4 year old, Charlie, who is nearly an insomniac

told me at 7 pm " I'm sick, I'm tired, and I want to go to bed when this show is

over. " WHAT??? Not a good sign, well, since then his temp has ranged from 101

- 104 and he has been to the doctor TWICE. A virus it seems. Last week was his

first week back to preschool for the fall, out of 4 days so far, he's been there

ONE, and will not be there again tomorrow. not bad 1 day out of 5 I guess. Of

course, Kate, the nearly 1 year old ALSO has it, between the two of them we've

made 5 visits to the doctors already this week. Not including the three trips I

made back and forth to pick up UI bags, get more bags and drop of urine. Kate

now has croup on top of whatever else they have. Did I mention last week

Charlie had scarlet fever, FOR THE THIRD TIME IN SIX MONTHS?? Why do we even

bother with the daily antibiotics?

I'm so frustrated for them. What kind of life is this? THAY ARE ALWAYS SICK.

They drew Charlie's blood on Monday when he went in with a fever of 104 despite

having tylenol. Poor kid told me " It scares you (meaning me) to have the hold

down. " It takes 4 of us to hold him down. He see's the immunologist on Monday,

and half of me hopes he's still this sick so he'll know what we're talking

about. Kate's already been diagnosed with hypogam and the ped ran a

immunoglobin panel on Charlie that showed he has a less severe case of the same.

I'm in a pity day. I know I need to just be greatful it's not worse, and I am

greatful for that... I'm just tired. Don't you ever wish your kids didn't have

this extra stuff to deal with??

Dayna

[Guest guest]

Dayna,

How are the kids this morning? I was praying for your family early this

morning, as well as several other families on this list.

Yes, I do wish that my Rebekah could be normal and that, on a daily basis, I

didn't watch her for signs of infection and fatigue, that I didn't carry a

list of meds and doses that she has been on, that I didn't have her

immunologist's phone number memorized!

Chronic illnesses are so different than acute illnesses. If Charlie got

croup yesterday, was sick for several days and back in school like normal by

Wednesday, you'd be tired from the disease, but not worn down by knowing

that croup will likely be followed by something else. And have you noticed

that the sympathy goes away after a while in a chronic illness?

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

[Guest guest]

Pam,

Thanks for asking. Things are going from bad to worse here. Supposedly Kate

was in the beggining stages of croup early last week, it never seemed to develop

in her, however, Charlie came down with it and still is struggling with it. The

humidifier really seemed to help last night (not to mention the phenagren with

codine the doctor gave him to help him sleep). Kate on the other hand had a

rough night. My husband slept on the couch so Charlie could sleep in our bed

with me, and he got Kate in the middle of the night, he's a paramedic, and he

thinks her temp was at least 104 when he got her - which sounds about right

because he gave her tyelnol and 2 hours later her fever was still 102. She's

coughing now, but it's not the seal bark, rather it's a very chesty, cough,

thinks she needs to go back in to the doctors today (trip 7 this week for

those keeping count). He's worried it has settled in her chest. Of course,

he's at work today, so I'm on my own. I refuse to take Charlie in too - as

he'll just get infected with something new, so I'm waiting for awhile until I

think my parents are up so I can ask my Mom to come over and watch him while I

take her.

Your exactly right about chronic illnesses wearing you down in a different way

then other ones. CHarlie had scarlet fever last week, now this. He see's the

immunologist on Monday, and I'm quite glad for that. The thing that sucks is

that I know this is just the beggining as far as the " sick season " goes. I'm

just praying they are healthy when the new baby comes, what bad timing for this

baby to be due in Feb.

The thing with the sympathy is so hard, mainly because when they are not in the

middle of an acute illness, they look fine, yet as the parent, I'm still on

guard, and no one understands that. I get funny looks when I wipe down the

grocery cart with antibacterial wipes, or when I strip Charlie down to just his

undies after preschool. No one understands why I flake so much. They were

supposed to go to two bithday parties today, but obviously can't. Hell, Kate's

1 year birthday party is next week, and I'm not even sure she's going to be well

enough to have it. My Mom is a nurse, and even she doesn't always understand,

my sisters think I'm crazy and an overprotective Mom, and I don't really have

many of my friends left, because, frankly, I don't really have the time.

I'm starting to think preschool was a mistake, and I sort of think the

immunologist will be taking that position on Monday. We'll see.

Thanks for asking, I guess I needed to vent.

Dayna

RE: The kids can't seem to get healthy

Dayna,

How are the kids this morning? I was praying for your family early this

morning, as well as several other families on this list.

Yes, I do wish that my Rebekah could be normal and that, on a daily basis, I

didn't watch her for signs of infection and fatigue, that I didn't carry a

list of meds and doses that she has been on, that I didn't have her

immunologist's phone number memorized!

Chronic illnesses are so different than acute illnesses. If Charlie got

croup yesterday, was sick for several days and back in school like normal by

Wednesday, you'd be tired from the disease, but not worn down by knowing

that croup will likely be followed by something else. And have you noticed

that the sympathy goes away after a while in a chronic illness?

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

[Guest guest]

Well, I certainly don't think you are overly protective. If my kid had

scarlet fever followed by croup and I suspected that he or she had an immune

disorder, I'd be protective, too!! Maybe it will be easier after you get a

firm diagnosis.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

[Guest guest]

Thanks Pam. Sometimes I need to hear that.

I just got Charlie's chart to take to the immunologist - this is what he has had

since Feb.:

Rotavirus & The Flu - Hospitalized 6 days

Sinus Infection x2

High Fever of Unknown Orgin X1

Viral Infection x2

Scarlet Fever x3

Ear Infections - both ears

Photophobia

Dayna

RE: The kids can't seem to get healthy

Well, I certainly don't think you are overly protective. If my kid had

scarlet fever followed by croup and I suspected that he or she had an immune

disorder, I'd be protective, too!! Maybe it will be easier after you get a

firm diagnosis.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

[Guest guest]

Dayna & Pam:

I hope yall don't mind me jumping in here! It is good to read that others

are having the same problems as I am. With Sis I wear a belt, and

suspenders. I am only just now getting my parents to sort of understand that

she is

SICK. No way around it. Others, they are the same. We tried school this

year,

four hours a day, when I picked her up, she was so tired, cryin, wanting to

eat dinner and go to bed at 4pm. Her teacher even wrote me a note saying " she

looks fine to us, let her stay all day " . Thank the Lord we have her going

back on homebound now. The pressure in her brain is coming up again. We have

another MRI on the 22, please think of her that day. I'm really excited about

it, but then again, I'm scared. They are going to include her spine this time.

That's the part we've been trying all along for them to focus on. So I'm

afraid of what it's going to be.

Okay, fixing to cry.

I've got everyone in my prayers.

Lynne ( mom to Sis, severe asthma, Igg def. reflux, psuedo tumor

[Guest guest]

Lynne,

I was praying for you and Sis (and Kate and Charlie and several other really

sick children) this morning. I'll be praying extra for the MRI on the 22nd.

I know that there is an answer for you.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

The pressure in her brain is coming up again. We have

another MRI on the 22, please think of her that day.

[Guest guest]

Pam:

Thank you for keeping us in your prayers

Lynne

[Guest guest]

Dayna:

This is in response to an old post of yours...I just got to it. About getting

looks for wiping stuff down -- How I handled it was to ignore the vast

majority of it, telling myself my mother's quotes in my head ( " who knows you

anyway? " and " you'll never see these people again as long as you live " ). For

those

who are OVERTLY staring or who actually ask about it, I didn't stop and have a

big conversation, I just said, " Doctor's orders, she gets sick very easily. "

and went back to what I was doing. Easier than mentioning a PID and having all

the questions from the curious.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)