A BUNCH of Replies

[Guest guest]

Hi List,

Well I've been saving messages for over a week, and now I'll try to reply to

them. Here goes:

: Meagan's starting kindergarten next week!!! Do you feel a bit sad? I

know I will when starts (if she lives thru the 3's, that is). Hope the

asthma doesn't get too bad for the big event.

Becky : Having had 5 miscarriages myself, all I can say is you have a

lot of courage.

There are so many new people joining the list recently, and I think it great to

have some new points of view.

Steve and Louise : From Maine no less. Welcome, and we hope to hear more

from you about your grandchilren.

Tammie: Welcome to the list too. Gee a lot of your experience reminds me of my

own. My daughter with CF, , is also 11 and I too have a surprise 3 year

old, , who was the best gift we ever gave ! So I would be really

interested to hear your perspective on pre-teens, and compliance. All I can say

is that we struggle with it here.

Dawn: Another welcome. It is great to " see " so many new faces.

(mother of Alyssa): Welcome to you too. My daughter was diagnosed

as Failure to Thrive too and they tried to convince me it was breastfeeding. I

just kept on nursing her, but diagnosis did not occur until she was 6 and going

into first grade. Hang in there.

Donna: Again, Welcome. It sounds like your persistence in knowing something was

wrong with finally paid off. The diagnosis is difficult, but sometimes

the not-knowing is worse.

Becky (mom of Ricky): It sounds as if Ricky really went thru a lot. You must

be a strong lady.

Forman: Any advice or thoughts that you have on adolescence and CF would

be appreciated. My daughter is 11 going on 30, and we are definitely running

into issues.

Quiltngal: I remember you used to be on here, because I always wanted to

know if you quilt! I do, so I was curious.

Alison: Another mother of an 11 year old!! I am really getting excited to have

some discussion about these pre-teens. Does struggle with you to do his

treatments, take his medicine, etc?

Sandy: I enjoy talking with any or all parents of children with CF. I think

that you will be a wonder resource to those of us with younger children. So how

did you make it thru adolescence?

Best wishes to all,

E

(mother of , 11 wcf, and , 3 nocf)

[Guest guest]

Sandy:

This is probably one of the best pieces of advice you could ever give. I

think many of us suffer from this overprotection syndrome for our kids with

and without CF.

Thanks for the reminder Sandy!!

Tammy mom of Zack 5wcf and e 3nocf

One piece of advice that I would like to offer is to try not to overprotect

your younger ones. Let them take all their lumps and bruises (within

reason) like all other children. Unfortunately I did overprotect (couldn't

help myself) ......big mistake.

Sandy

Mom of Matt 22 wcf and Mark 19 wocf

[Guest guest]

>

>Sandy: I enjoy talking with any or all parents of children with CF. I

think that you will be a wonder resource to those of us with younger

children. So how did you make it thru adolescence?

>

>Best wishes to all,

> E

>(mother of , 11 wcf, and , 3 nocf)

Hi

I certainly hope with my extra years of experience, I can help at least one

person on this list. Regarding making it thru adolescence, that I can't

help with, we haven't made it thru it yet. Can anyone help me on that

subject? (LOL)

One piece of advice that I would like to offer is to try not to overprotect

your younger ones. Let them take all their lumps and bruises (within

reason) like all other children. Unfortunately I did overprotect (couldn't

help myself) ......big mistake.

Sandy

Mom of Matt 22 wcf and Mark 19 wocf

>

>

>

[Guest guest]

In a message dated 08/25/2000 10:12:17 PM Mountain Daylight Time,

naelliott@... writes:

> Quiltngal: I remember you used to be on here, because I always

wanted

> to know if you quilt! I do, so I was curious.

>

,

Yes, I do quilt. Actually, that should almost be past tense since having

kids, I don't get a chance to quilt nearly as often as I would like. The

only project that I'm working on is a sampler quilt that is a project offered

at the local quilt shop and I only have to finish one block a month. There

have even been months that it was a challenge to find the time to do that!

, Nate (4 wocf) and Adam's (15 months wcf) mom

[Guest guest]

,

AFter reading your reply I guess I should correct myself, as it is more past

tense here too. Who has time for this stuff?? Wish I did.

(mother of , 11 wcf and , 3 nocf)

[Guest guest]

hi nancy and all............i will be happy to chit-chat about cf and

adolescence...........but, in order tell our story completely, i'd like to

give you some background..........my andrew was diagnosed with cf when he

was 6 months old, but i didn't start to raise him until he was 4..........i

am technically his stepmom, but, i consider that he is my

child..........andrew has always been non-compliant to some degree with his

medications and therapy......he basically has been functioning as an

adolescent since i've been raising him............this is where it gets kind

of complicated.........andrew has always had difficulty following rules (i

have 3 other kids, and he has definately stood out, head and shoulders above

the rest, in this regard)............when he was very little, i know that

his dad, bill, just thought that i was being unreasonable with him,

expecting too much..........but, when andrew started school, the teachers

were noticing, too, his impulsiveness, his immaturity in regards to

socialization (although he is a very friendly, outgoing kid, and has always

had lots of friends, he was very slow to be able to play fairly, for

example, to share, etc.), and his inability to be able to monitor his

behavior........at his grade 2 teacher's suggestion, i took him to the

doctor, and we were referred to a gp who " specializes " in ADD.........i know

that this diagnosis is thrown around a lot, but, i did some research, and i

really do believe that andrew has (had?) ADD...........a few years later,

when i thought that he had improved quite a bit, i took him to a child

psychiatrist for his opinion..........and he believed that andrew had had an

" impulse disorder " , but felt that he was " growing out of it " (fine with

me!)..........i must say, also, that andrew's natural mother is not exactly

overflowing with maternal feelings or common (or uncommon)

sense.........(it's ok........i know what you're thinking..........the 2nd

wife dissing the first!........lol)...........but, i have great reason to

believe that she basically tells andrew and his older brother the opposite

of what i tell them, about manners, foul language, homework, etc., etc.,

etc............(won't go into that!--------it's for a whole other

weblist!!).......the boys visit with her about once a week........and

andrew's dad, bill, who is a really great person, unfortunately has, for his

#1 " coping " mechanism, avoidance, which meant that, fearful of this awful

disease (naturally........i'm not being critical)..........he has basically

coped by not dealing with it........unwilling to discuss it..........and

basically, over a period of time, dumping the whole thing in my

lap..........a couple of years ago, i asked bill how it came to be that i

ended up being 100% responsible for andrew's health..........and began to

insist, quite noisily, in fact............that he get with the

program............and HELP ME!!.......andrew's non-compliance with his

treatment has gone in waves..........he's been better at some times than

others.............but, this year, he reached heretofore unmet depths

(heights?) of resistance, including lying about having done his masks

(including PEP)........i am very open-minded and flexible, when it comes to

issues of how to deal with children.........i like to explain things,

without making a child afraid...........but, i have found andrew very, very

difficult to deal with............he is basically impervious to

explanations.............impervious to my attemps to motivate

him..........the only thing that makes him pay attention is to " ground "

him..........this is something that i hate to do to a 14 year

old............to me, that is a tool for younger children..........even

though his dad has improved tremendously over the last year or so, in making

sure that andrew follows his treatment, i still was finding, with great

frustration, that andrew was missing far too many pills and masks.........(i

work afternoons, and would come home from work and find the supper and

bedtime pills still in the case, for example)..........we went to sick kids

for his regular clinic visit and his yearly visit with the

gastroenterologist (andrew has cf-associated liver disease) this past

friday...........and we got some unhappy news..........#1 (the stuff andrew

DOES have some control over).........his vitamin A levels are so low that

the docs can hardly believe that andrew has not noticed visual

changes..........he is supposed to take 3 ADEKs per day, plus a vitamin A

supplement.........(but skips his meds whenever he gets a chance)........his

vitamin K levels are so low, that they are very concerned about his blood's

ability to clot........again...........he is skipping his ADEKs whenever

possible..........his pfts are in the 60% range, down from the 70%

range..........he is skipping his ventolin/pulmicort masks, and his PEP

masks whenever he can.........#2 (the stuff that andrew does not have

control over, is NOT responsible for)..........his spleen is enlarged (has

been for years, although this is the first indication that this is causing a

problem)............and is destroying healthy blood cells..........thus, his

hemoglobin is low, to the point that he is mildly anemic............and his

white cell count is low........and his platelet count is low.......the

gastroenterologist said that this malfunctioning of the spleen may not get

worse..........i asked what could be done about it if it DID get

worse...........and he very reluctantly told me that surgery might be

needed, in order to divert some of the blood vessels AWAY from the spleen,

so that it would have less chance to destroy healthy blood..........but,

surgery would be a last resort............so.........that's about

it..........don't think i could have forgotten

anything...........!!...........thanks for listening.........take good care,

everybody.........love, lisa forman

A BUNCH of Replies

>Hi List,

>Well I've been saving messages for over a week, and now I'll try to reply

to them. Here goes:

>

>: Meagan's starting kindergarten next week!!! Do you feel a bit

sad? I know I will when starts (if she lives thru the 3's, that

is). Hope the asthma doesn't get too bad for the big event.

>

>Becky : Having had 5 miscarriages myself, all I can say is you

have a lot of courage.

>

>There are so many new people joining the list recently, and I think it

great to have some new points of view.

>

>Steve and Louise : From Maine no less. Welcome, and we hope to hear

more from you about your grandchilren.

>

>Tammie: Welcome to the list too. Gee a lot of your experience reminds me

of my own. My daughter with CF, , is also 11 and I too have a

surprise 3 year old, , who was the best gift we ever gave !

So I would be really interested to hear your perspective on pre-teens, and

compliance. All I can say is that we struggle with it here.

>

>Dawn: Another welcome. It is great to " see " so many new faces.

>

> (mother of Alyssa): Welcome to you too. My daughter was

diagnosed as Failure to Thrive too and they tried to convince me it was

breastfeeding. I just kept on nursing her, but diagnosis did not occur

until she was 6 and going into first grade. Hang in there.

>

>Donna: Again, Welcome. It sounds like your persistence in knowing

something was wrong with finally paid off. The diagnosis is

difficult, but sometimes the not-knowing is worse.

>

>Becky (mom of Ricky): It sounds as if Ricky really went thru a lot. You

must be a strong lady.

>

> Forman: Any advice or thoughts that you have on adolescence and CF

would be appreciated. My daughter is 11 going on 30, and we are definitely

running into issues.

>

> Quiltngal: I remember you used to be on here, because I always

wanted to know if you quilt! I do, so I was curious.

>

>Alison: Another mother of an 11 year old!! I am really getting excited to

have some discussion about these pre-teens. Does struggle with you

to do his treatments, take his medicine, etc?

>

>Sandy: I enjoy talking with any or all parents of children with CF. I

think that you will be a wonder resource to those of us with younger

children. So how did you make it thru adolescence?

>

>Best wishes to all,

> E

>(mother of , 11 wcf, and , 3 nocf)

>

>

>

>