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Hi..

My name is Rhonda and my little boy is going through testing for CF. He just

turned 20 months on the 6th. I am looking for people that have experience with

this that I can ask questions to. I live in Kentucky and have been married for

14 years this past August. Jordan is our miracle baby because we tried the

entire 14 years to conceive him. If any of you can help me out please email me

at thearthurs3@... Thanks!

Rhonda

Check out my new online business!! They are AWESOME!

***Photo Magnets*** http://www.heavenstreasurechest.com

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Hi Rhonda,

Welcome to the group! I am sorry that your little guy is sick and I hope it is

not CF. If it is, you have found a wealth of knowledge right here. Questions?

Ask away.

Mom of almost 5, AKA The Queen of the Universe

Read about us at http://groups.msn.com/TeamJane

Intro

Hi..

My name is Rhonda and my little boy is going through testing for CF. He just

turned 20 months on the 6th. I am looking for people that have experience with

this that I can ask questions to. I live in Kentucky and have been married for

14 years this past August. Jordan is our miracle baby because we tried the

entire 14 years to conceive him. If any of you can help me out please email me

at thearthurs3@... Thanks!

Rhonda

Check out my new online business!! They are AWESOME!

***Photo Magnets*** http://www.heavenstreasurechest.com

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Hi Rhonda,

Our lives are very parallel to each other. Zach turned 19 months on

the Aug. 8th. He was diagnosed with cf at 13 months old. We will

celebrate our 11th anniversary this October and Zach is our only

child. We tried for a long time too and then to find out your baby

might have CF can be extremely overwhelming. Just know that you can

manage this and we are all here for you if you have any questions.

Jordon is sooo cute! You can see Zach at www.dawsonland.net

Sara

> Hi..

>

> My name is Rhonda and my little boy is going through testing for

CF. He just turned 20 months on the 6th. I am looking for people

that have experience with this that I can ask questions to. I live

in Kentucky and have been married for 14 years this past August.

Jordan is our miracle baby because we tried the entire 14 years to

conceive him. If any of you can help me out please email me at

thearthurs3@z... Thanks!

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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Welcome !

Boy you have thrown the million dollar question! We have a 10 year

old wcf and 2 younger siblings both boys, one is 7 the other one is

3. My 7 year old has had a very hard time dealing with all the

attention my 10 year old gets. Since diagnosis, May 2002, his

personality has changed so much. He has become very destructive,

hits his brother and sister, pretty much has become a bully.

Thankfully, he is like that only at home, at school he is a doll. I

have talked to him, I have made time to spend alone with him, but

jealousy is eating him up.

Well, I wish I had an answer for you but I think it is something

that only growing up will help.

Again a warm welcome.

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Greetings,

>

> I just subbed today and wanted to take a moment to briefly

introduce myself. My

> name is and I am the mother of two little girls, 6 and

almost 4. My

> eldest, Jasmine, was diagnosed with cystic fibrosis at 15 months.

Jasmine's

> lungs are pretty sick and she's being listed at Children's

Hospital, LA for a

> transplant. We're hoping to do living donor but are having a hard

time finding

> another person to donate (Jasmine is type O, like me, but we can't

find another

> likely candidate... we're still working on it). Jasmine's sister,

le,

> is untested but also totally asymptomatic. I'd be pretty surprised

at this

> point if she was diagnosed.

>

> Jasmine's in the hospital right now for a " tune-up " but we're

excited because on

> Monday we're going to Florida for our Make-A-Wish wish. We decided

(with the

> doctors) to bend the rules a bit and let her go without home IV

antibiotics this

> time around... at least until we get back the following Monday.

Then we go back

> to the docs to see if she needs to be back on the IV meds and on

Wednesday she

> goes in to get a " peg " for night feedings. We might get a

permanent IV port at

> the same time, but we're waiting for confirmation on that. I'm

really

> struggling with these two little additions to my child's body,

which is already

> ravaged by CF... I hate the idea of having permanent reminders of

how sick she

> is. Jasmine seems to be fine with it, though I don't know how

she'll feel when

> it's all over. I know this is for the best and both my husband and

I are making

> sure we put the most positive spin on it as possible, but it's

still bugging us.

> I'm straining my poker face. <g>

>

> My concern at this point... and I'm hoping that some of you can

offer some

> suggestions... is that my younger daughter is having a really

horrible time with

> this hospitalization. She misses Jasmine terribly and cries

whenever we have to

> leave, but she's also very jealous of all the attention Jasmine

gets. Jasmine

> doesn't like sharing her hospital spotlight and is sort of mean to

her whenever

> we go visit (my husband spends the night with her and we --

le and I--

> visit daily). I've heard that non-CF siblings sometimes feel

bitter about being

> pushed aside even when they know there's nothing anyone can do

about it... but

> those kids are generally old enough to articulate their emotions.

What do I do

> with a child who's almost four and *can't* put these feelings into

words? How

> do you all deal with your non-CF children... make them feel as

loved and help

> them understand why you spend so much time with your CF children?

As you can

> tell, I'm really angsting over this. ::wry grin::

>

> Peace, Balance and Blessings to You,

>

> ***********************************

> rowan_witch@u...

> AOL IM: RwnWitch

> Yahoo Pager: Aine_of_Knockainy_Hill

>

> " god help you if you are a phoenix

> and you dare to rise up from the ash

> a thousand eyes will smolder with jealousy

> while you are just flying back "

> ~Ani DiFranco

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Rhonda,

Welcome to the group. I hope that you and Jordan get the answers

that you are looking for. Please keep us posted.

Gale

> Hi..

>

> My name is Rhonda and my little boy is going through testing for

CF. He just turned 20 months on the 6th. I am looking for people

that have experience with this that I can ask questions to. I live

in Kentucky and have been married for 14 years this past August.

Jordan is our miracle baby because we tried the entire 14 years to

conceive him. If any of you can help me out please email me at

thearthurs3@z... Thanks!

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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Rhonda;

It is not you who is confused. It is the person who is referring to the

sweat test result as " borderline high " who is confused.

Perhaps he or she is thinking that 80 is not that far off of 60 so that is

why the term 'borderline' was applied. It is not uncommon to have readings

well over 100 but the particular sweat test reading is NOT predictive in any

way of the severity of the CF at the time, or of the course the disorder

will take. It is simply an indication that one is either positive or

negative for CF.

People who do NOT have CF are rarely over 40 in a sweat test. Between 40 and

60 is seldom a valid result and would require further investigation. Perhaps

the person is applying the term in a misguided effort to 'soften' the blow

of the result. More likely, the person just is not sufficiently familiar

with the test and with CF to know better. Was it a technician or a doctor

who used the term 'borderline high'?

If the test was at a local hospital and not a CF Center, they probably are

not used to doing the test frequently and CF is rare enough that they may

rarely come across a positive result. There are various test kits available

for doing sweat tests and not all hospitals use the most reliable ones.

It sounds like you have already educated yourself to know more about the

sweat test and CF than the person who gave you the information about the

test result. You said that your son has already had blood work taken so I

assume that is to determine the particular mutations that your son may have.

It is hard to be patient when you have been given such stressful news but

DNA testing from the bloodwork should soon give you further information. DNA

analysis does not always give a definitive answer but it most likely will

confirm if your son has CF. You will want to check how many mutations were

searched in the DNA analysis if that test is not definitive for you. You can

take your next steps from there and we'll be with you all along.

M

Re: Intro

no it was at our local hospital. See I am so confused as to why they are

calling his borderline high. ARGH anyone have any idea?

Rhonda

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