question

[Guest guest]

In a message dated 12/24/2002 4:24:12 PM Central Standard Time,

chaosangel@... writes:

>

> Bactrim is an antibiotic, Sulfatrim being the same thing, different brand

> name. Both Triana and I have both been on it (she in liquid form, myself

> in pill form). Never had stomach upset, either of us. However, here's

> some info I got off the web. You'll note it DOES mention stomach upset

> under the Side Effects. Dunno what's wrong with that nurse.

>

> Co-trimoxazole (SMX-TMP)

>

> Brand Names: Septra, Bactrim and Sulfatrim

>

> Reason for taking medication:

>

> Bactrim is an antibiotic used to treat a wide variety of infections

> including urinary, ear and

>

> respiratory infections.

>

> This medication is not recommended for use in infants younger than 2

> months.

>

> Dose, schedule and storage:

>

> Take each dose with fluids. If stomach upset occurs, it may be taken with

> food or milk. The

>

> liquid suspension form of this medicine must be shaken well before each

> dose. If your child is

>

> taking this medicine to prevent a urine infection, he/she should take the

> prescribed dose at

>

> bedtime.

>

> For babies and children, the dose is determined by weight and will need to

> be adjusted as the

>

> child grows.

>

> Store at room temperature away from sunlight and moisture. Keep out of

> reach of children.

>

> If a dose is missed:

>

> Take the dose as soon as you remember that you missed it; but if it is

> almost time for your next

>

> dose, skip the missed dose. Then continue with your regular dosing

> schedule. Do not double

>

> dose.

>

> Common side effects which may occur:

>

> If your child develops: rash, itching, swelling, breathing problems, notify

> your physician and

>

> discontinue the medicine.

>

> This medication may cause stomach upset, diarrhea, nausea, headache or

> vomiting. If any of

>

> these effects persist or become severe, inform our office. The sulfa in

> this combination drug may

>

> increase sensitivity to sunlight, wear protective clothing and sunscreen.

>

> In case of an overdose, call: Poison Control Center-1-.

>

Thanks for this information! I am going to send this to our nurse. Because we

do take it with milk too. Her stools are starting to look a little better but

she is still tired. You know something is wrong when she crawls on you lap

when you are opening Christams presents and says I'm tired Mom and she just

got out of bed. It scares me! Deb A

[Guest guest]

In a message dated 12/23/2002 8:37:59 PM Central Standard Time,

hott_tommalle@... writes:

> Deb,

> They do make acidophilus in liquid form. Coincidentally, my daughter was

> just put on bactrim on Friday and I just bought some from GNC. It was $9.99

>

> for a pretty big bottle. Why is your daughter taking bactrim?

>

> Holly

>

She has some kind of bacteria that bactruim gets rid of. I can't remember

the name of it right now but they say it is not any bacteria to worry about

but they do like to get rid of it and bactruim is know to get rid of it.

Thanks for that information too I will check at the GNC. I looked for it in

the vitamin section at the Hy-Vee store which is a grocery store and I could

not find it there. Deb A

[Guest guest]

In a message dated 12/23/2002 8:37:59 PM Central Standard Time,

hott_tommalle@... writes:

> Deb,

> They do make acidophilus in liquid form. Coincidentally, my daughter was

> just put on bactrim on Friday and I just bought some from GNC. It was $9.99

>

> for a pretty big bottle. Why is your daughter taking bactrim?

>

> Holly

>

She has some kind of bacteria that bactruim gets rid of. I can't remember

the name of it right now but they say it is not any bacteria to worry about

but they do like to get rid of it and bactruim is know to get rid of it.

Thanks for that information too I will check at the GNC. I looked for it in

the vitamin section at the Hy-Vee store which is a grocery store and I could

not find it there. Deb A

[Guest guest]

In a message dated 12/23/2002 8:37:59 PM Central Standard Time,

hott_tommalle@... writes:

> Deb,

> They do make acidophilus in liquid form. Coincidentally, my daughter was

> just put on bactrim on Friday and I just bought some from GNC. It was $9.99

>

> for a pretty big bottle. Why is your daughter taking bactrim?

>

> Holly

>

She has some kind of bacteria that bactruim gets rid of. I can't remember

the name of it right now but they say it is not any bacteria to worry about

but they do like to get rid of it and bactruim is know to get rid of it.

Thanks for that information too I will check at the GNC. I looked for it in

the vitamin section at the Hy-Vee store which is a grocery store and I could

not find it there. Deb A

[Guest guest]

In a message dated 12/25/2002 5:41:01 PM Central Standard Time,

chaosangel@... writes:

> Yah...it would scare me, too. My little dumpling almost never runs out of

> energy...and you can tell she's sick because she'll just sort of hang

> around and cuddle a lot, quietly. Thankfully, that wasn't an issue for us,

> today...she had loads of fun using Grandpa as a slide after opening her

> loads of presents from her aunts, uncles, and cousins, plus Grandma and

> Grandpa. The guitar was a big hit, as was the tricycle (or in her words:

> " big tyke bike " ). So was the ham at her aunt's house...she ate heaps of

> it.

>

> Hopefully, your little one will adjust to the Bactrim. Sometimes it just

> takes a little adjustment to a med, and things get better.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

Shanna,

I sure hope so because it is really starting to get to me. I will give it

another week. I know for sure I am going to have them order anymore after

this bottle is gone. Thanks for you help. Deb A

[Guest guest]

In a message dated 12/25/2002 5:41:01 PM Central Standard Time,

chaosangel@... writes:

> Yah...it would scare me, too. My little dumpling almost never runs out of

> energy...and you can tell she's sick because she'll just sort of hang

> around and cuddle a lot, quietly. Thankfully, that wasn't an issue for us,

> today...she had loads of fun using Grandpa as a slide after opening her

> loads of presents from her aunts, uncles, and cousins, plus Grandma and

> Grandpa. The guitar was a big hit, as was the tricycle (or in her words:

> " big tyke bike " ). So was the ham at her aunt's house...she ate heaps of

> it.

>

> Hopefully, your little one will adjust to the Bactrim. Sometimes it just

> takes a little adjustment to a med, and things get better.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

Shanna,

I sure hope so because it is really starting to get to me. I will give it

another week. I know for sure I am going to have them order anymore after

this bottle is gone. Thanks for you help. Deb A

[Guest guest]

In a message dated 12/25/2002 5:41:01 PM Central Standard Time,

chaosangel@... writes:

> Yah...it would scare me, too. My little dumpling almost never runs out of

> energy...and you can tell she's sick because she'll just sort of hang

> around and cuddle a lot, quietly. Thankfully, that wasn't an issue for us,

> today...she had loads of fun using Grandpa as a slide after opening her

> loads of presents from her aunts, uncles, and cousins, plus Grandma and

> Grandpa. The guitar was a big hit, as was the tricycle (or in her words:

> " big tyke bike " ). So was the ham at her aunt's house...she ate heaps of

> it.

>

> Hopefully, your little one will adjust to the Bactrim. Sometimes it just

> takes a little adjustment to a med, and things get better.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

Shanna,

I sure hope so because it is really starting to get to me. I will give it

another week. I know for sure I am going to have them order anymore after

this bottle is gone. Thanks for you help. Deb A

[Guest guest]

Yah...it would scare me, too. My little dumpling almost never runs out of

energy...and you can tell she's sick because she'll just sort of hang around and

cuddle a lot, quietly. Thankfully, that wasn't an issue for us, today...she had

loads of fun using Grandpa as a slide after opening her loads of presents from

her aunts, uncles, and cousins, plus Grandma and Grandpa. The guitar was a big

hit, as was the tricycle (or in her words: " big tyke bike " ). So was the ham at

her aunt's house...she ate heaps of it.

Hopefully, your little one will adjust to the Bactrim. Sometimes it just takes

a little adjustment to a med, and things get better.

Shanna

mom of Triana, age 2 wcf

Re: Question

In a message dated 12/24/2002 4:24:12 PM Central Standard Time,

chaosangel@... writes:

>

> Bactrim is an antibiotic, Sulfatrim being the same thing, different brand

> name. Both Triana and I have both been on it (she in liquid form, myself

> in pill form). Never had stomach upset, either of us. However, here's

> some info I got off the web. You'll note it DOES mention stomach upset

> under the Side Effects. Dunno what's wrong with that nurse.

>

> Co-trimoxazole (SMX-TMP)

>

> Brand Names: Septra, Bactrim and Sulfatrim

>

> Reason for taking medication:

>

> Bactrim is an antibiotic used to treat a wide variety of infections

> including urinary, ear and

>

> respiratory infections.

>

> This medication is not recommended for use in infants younger than 2

> months.

>

> Dose, schedule and storage:

>

> Take each dose with fluids. If stomach upset occurs, it may be taken with

> food or milk. The

>

> liquid suspension form of this medicine must be shaken well before each

> dose. If your child is

>

> taking this medicine to prevent a urine infection, he/she should take the

> prescribed dose at

>

> bedtime.

>

> For babies and children, the dose is determined by weight and will need to

> be adjusted as the

>

> child grows.

>

> Store at room temperature away from sunlight and moisture. Keep out of

> reach of children.

>

> If a dose is missed:

>

> Take the dose as soon as you remember that you missed it; but if it is

> almost time for your next

>

> dose, skip the missed dose. Then continue with your regular dosing

> schedule. Do not double

>

> dose.

>

> Common side effects which may occur:

>

> If your child develops: rash, itching, swelling, breathing problems, notify

> your physician and

>

> discontinue the medicine.

>

> This medication may cause stomach upset, diarrhea, nausea, headache or

> vomiting. If any of

>

> these effects persist or become severe, inform our office. The sulfa in

> this combination drug may

>

> increase sensitivity to sunlight, wear protective clothing and sunscreen.

>

> In case of an overdose, call: Poison Control Center-1-.

>

Thanks for this information! I am going to send this to our nurse. Because we

do take it with milk too. Her stools are starting to look a little better but

she is still tired. You know something is wrong when she crawls on you lap

when you are opening Christams presents and says I'm tired Mom and she just

got out of bed. It scares me! Deb A

[Guest guest]

Yah...it would scare me, too. My little dumpling almost never runs out of

energy...and you can tell she's sick because she'll just sort of hang around and

cuddle a lot, quietly. Thankfully, that wasn't an issue for us, today...she had

loads of fun using Grandpa as a slide after opening her loads of presents from

her aunts, uncles, and cousins, plus Grandma and Grandpa. The guitar was a big

hit, as was the tricycle (or in her words: " big tyke bike " ). So was the ham at

her aunt's house...she ate heaps of it.

Hopefully, your little one will adjust to the Bactrim. Sometimes it just takes

a little adjustment to a med, and things get better.

Shanna

mom of Triana, age 2 wcf

Re: Question

In a message dated 12/24/2002 4:24:12 PM Central Standard Time,

chaosangel@... writes:

>

> Bactrim is an antibiotic, Sulfatrim being the same thing, different brand

> name. Both Triana and I have both been on it (she in liquid form, myself

> in pill form). Never had stomach upset, either of us. However, here's

> some info I got off the web. You'll note it DOES mention stomach upset

> under the Side Effects. Dunno what's wrong with that nurse.

>

> Co-trimoxazole (SMX-TMP)

>

> Brand Names: Septra, Bactrim and Sulfatrim

>

> Reason for taking medication:

>

> Bactrim is an antibiotic used to treat a wide variety of infections

> including urinary, ear and

>

> respiratory infections.

>

> This medication is not recommended for use in infants younger than 2

> months.

>

> Dose, schedule and storage:

>

> Take each dose with fluids. If stomach upset occurs, it may be taken with

> food or milk. The

>

> liquid suspension form of this medicine must be shaken well before each

> dose. If your child is

>

> taking this medicine to prevent a urine infection, he/she should take the

> prescribed dose at

>

> bedtime.

>

> For babies and children, the dose is determined by weight and will need to

> be adjusted as the

>

> child grows.

>

> Store at room temperature away from sunlight and moisture. Keep out of

> reach of children.

>

> If a dose is missed:

>

> Take the dose as soon as you remember that you missed it; but if it is

> almost time for your next

>

> dose, skip the missed dose. Then continue with your regular dosing

> schedule. Do not double

>

> dose.

>

> Common side effects which may occur:

>

> If your child develops: rash, itching, swelling, breathing problems, notify

> your physician and

>

> discontinue the medicine.

>

> This medication may cause stomach upset, diarrhea, nausea, headache or

> vomiting. If any of

>

> these effects persist or become severe, inform our office. The sulfa in

> this combination drug may

>

> increase sensitivity to sunlight, wear protective clothing and sunscreen.

>

> In case of an overdose, call: Poison Control Center-1-.

>

Thanks for this information! I am going to send this to our nurse. Because we

do take it with milk too. Her stools are starting to look a little better but

she is still tired. You know something is wrong when she crawls on you lap

when you are opening Christams presents and says I'm tired Mom and she just

got out of bed. It scares me! Deb A

[Guest guest]

Yah...it would scare me, too. My little dumpling almost never runs out of

energy...and you can tell she's sick because she'll just sort of hang around and

cuddle a lot, quietly. Thankfully, that wasn't an issue for us, today...she had

loads of fun using Grandpa as a slide after opening her loads of presents from

her aunts, uncles, and cousins, plus Grandma and Grandpa. The guitar was a big

hit, as was the tricycle (or in her words: " big tyke bike " ). So was the ham at

her aunt's house...she ate heaps of it.

Hopefully, your little one will adjust to the Bactrim. Sometimes it just takes

a little adjustment to a med, and things get better.

Shanna

mom of Triana, age 2 wcf

Re: Question

In a message dated 12/24/2002 4:24:12 PM Central Standard Time,

chaosangel@... writes:

>

> Bactrim is an antibiotic, Sulfatrim being the same thing, different brand

> name. Both Triana and I have both been on it (she in liquid form, myself

> in pill form). Never had stomach upset, either of us. However, here's

> some info I got off the web. You'll note it DOES mention stomach upset

> under the Side Effects. Dunno what's wrong with that nurse.

>

> Co-trimoxazole (SMX-TMP)

>

> Brand Names: Septra, Bactrim and Sulfatrim

>

> Reason for taking medication:

>

> Bactrim is an antibiotic used to treat a wide variety of infections

> including urinary, ear and

>

> respiratory infections.

>

> This medication is not recommended for use in infants younger than 2

> months.

>

> Dose, schedule and storage:

>

> Take each dose with fluids. If stomach upset occurs, it may be taken with

> food or milk. The

>

> liquid suspension form of this medicine must be shaken well before each

> dose. If your child is

>

> taking this medicine to prevent a urine infection, he/she should take the

> prescribed dose at

>

> bedtime.

>

> For babies and children, the dose is determined by weight and will need to

> be adjusted as the

>

> child grows.

>

> Store at room temperature away from sunlight and moisture. Keep out of

> reach of children.

>

> If a dose is missed:

>

> Take the dose as soon as you remember that you missed it; but if it is

> almost time for your next

>

> dose, skip the missed dose. Then continue with your regular dosing

> schedule. Do not double

>

> dose.

>

> Common side effects which may occur:

>

> If your child develops: rash, itching, swelling, breathing problems, notify

> your physician and

>

> discontinue the medicine.

>

> This medication may cause stomach upset, diarrhea, nausea, headache or

> vomiting. If any of

>

> these effects persist or become severe, inform our office. The sulfa in

> this combination drug may

>

> increase sensitivity to sunlight, wear protective clothing and sunscreen.

>

> In case of an overdose, call: Poison Control Center-1-.

>

Thanks for this information! I am going to send this to our nurse. Because we

do take it with milk too. Her stools are starting to look a little better but

she is still tired. You know something is wrong when she crawls on you lap

when you are opening Christams presents and says I'm tired Mom and she just

got out of bed. It scares me! Deb A

[Guest guest]

---Hi Deb,

Sorry she is having so much trouble with the Bactrim. I hope they

will take her off of it soon. I do know that it works great on

certain bugs. Good Luck J.

In cfparents , gdattig5@a... wrote:

> In a message dated 12/24/2002 3:52:33 PM Central Standard Time,

> j.larocque@v... writes:

>

>

> >

> > ---Hi Deb,

> > Yes my daughter was very tired, bad stomach and no appetite while

on

> > Bactrim. She was on it for a long time and didn't gain any

weight

> > while on it. There is a long story about our history with

Bactrim

> > and the doc that wanted my daughter on it for base antibiotic.

Since

> > we have changed docs, hospitals for a lot of reasons and we are

much

> > happier. She has only had to take Bactrim once since for

particular

> > bug, and new doc gave her high dose for short period of time

because

> > of what it does to my daughter. May I ask why yours is taking

> > Bactrim and for how long? My advice it to relay all symptoms and

> > concerns to the doc and maybe yours will only need to be on it

for a

> > limited amount of time.

> > MAMA USUALLY KNOWS BEST!!!!!This is something I have had to learn

the

> > hard way! As a footnote-since switching docs, hospitals, my

daughter

> > has gone from under the 25th percentile to over 50 percentile BMI

and

> > her PFT's have increased dramatically.

> > J.

>

> She is taking it for a bacteria that I can't remember the name of.

She had it

> last month and they thought cipro would get rid of it but it did

not. So they

> said bactruim would. I told them she is complaining of her stomach

hurting

> but they tell me it is not the character of bactruim so she is

telling me to

> increase her enzymes instead. I think she is CRAZY!! Because it

started when

> we started the medication. They want her to take it for 3 months. I

think

> after Christmas I am going to tell them after we get done with this

bottle I

> am not giving her anymore. Thanks for your help. Deb A

>

>

>

[Guest guest]

---Hi Deb,

Sorry she is having so much trouble with the Bactrim. I hope they

will take her off of it soon. I do know that it works great on

certain bugs. Good Luck J.

In cfparents , gdattig5@a... wrote:

> In a message dated 12/24/2002 3:52:33 PM Central Standard Time,

> j.larocque@v... writes:

>

>

> >

> > ---Hi Deb,

> > Yes my daughter was very tired, bad stomach and no appetite while

on

> > Bactrim. She was on it for a long time and didn't gain any

weight

> > while on it. There is a long story about our history with

Bactrim

> > and the doc that wanted my daughter on it for base antibiotic.

Since

> > we have changed docs, hospitals for a lot of reasons and we are

much

> > happier. She has only had to take Bactrim once since for

particular

> > bug, and new doc gave her high dose for short period of time

because

> > of what it does to my daughter. May I ask why yours is taking

> > Bactrim and for how long? My advice it to relay all symptoms and

> > concerns to the doc and maybe yours will only need to be on it

for a

> > limited amount of time.

> > MAMA USUALLY KNOWS BEST!!!!!This is something I have had to learn

the

> > hard way! As a footnote-since switching docs, hospitals, my

daughter

> > has gone from under the 25th percentile to over 50 percentile BMI

and

> > her PFT's have increased dramatically.

> > J.

>

> She is taking it for a bacteria that I can't remember the name of.

She had it

> last month and they thought cipro would get rid of it but it did

not. So they

> said bactruim would. I told them she is complaining of her stomach

hurting

> but they tell me it is not the character of bactruim so she is

telling me to

> increase her enzymes instead. I think she is CRAZY!! Because it

started when

> we started the medication. They want her to take it for 3 months. I

think

> after Christmas I am going to tell them after we get done with this

bottle I

> am not giving her anymore. Thanks for your help. Deb A

>

>

>

[Guest guest]

---Hi Deb,

Sorry she is having so much trouble with the Bactrim. I hope they

will take her off of it soon. I do know that it works great on

certain bugs. Good Luck J.

In cfparents , gdattig5@a... wrote:

> In a message dated 12/24/2002 3:52:33 PM Central Standard Time,

> j.larocque@v... writes:

>

>

> >

> > ---Hi Deb,

> > Yes my daughter was very tired, bad stomach and no appetite while

on

> > Bactrim. She was on it for a long time and didn't gain any

weight

> > while on it. There is a long story about our history with

Bactrim

> > and the doc that wanted my daughter on it for base antibiotic.

Since

> > we have changed docs, hospitals for a lot of reasons and we are

much

> > happier. She has only had to take Bactrim once since for

particular

> > bug, and new doc gave her high dose for short period of time

because

> > of what it does to my daughter. May I ask why yours is taking

> > Bactrim and for how long? My advice it to relay all symptoms and

> > concerns to the doc and maybe yours will only need to be on it

for a

> > limited amount of time.

> > MAMA USUALLY KNOWS BEST!!!!!This is something I have had to learn

the

> > hard way! As a footnote-since switching docs, hospitals, my

daughter

> > has gone from under the 25th percentile to over 50 percentile BMI

and

> > her PFT's have increased dramatically.

> > J.

>

> She is taking it for a bacteria that I can't remember the name of.

She had it

> last month and they thought cipro would get rid of it but it did

not. So they

> said bactruim would. I told them she is complaining of her stomach

hurting

> but they tell me it is not the character of bactruim so she is

telling me to

> increase her enzymes instead. I think she is CRAZY!! Because it

started when

> we started the medication. They want her to take it for 3 months. I

think

> after Christmas I am going to tell them after we get done with this

bottle I

> am not giving her anymore. Thanks for your help. Deb A

>

>

>

[Guest guest]

,

Aimee started Karate at 6 years old, she has only had 1 maybe 2 lung

infections, she is now 12. Karate has proved to be a great aerobic workout

for her. But besides the physical aspects, the mental growth is fantastic,

yes she has her down times and Karate has helped. I myself train in the

martial arts and if she has pain like sinus or ears, we talk and breath

through the pain. I am hoping that as her CF progresses we can use the

Martial Arts as a way of getting through some of it. Her instructors are very

good to her, and help her physically and emotionally when needed. She has had

her black belt almost 2 years now and working towards earning her second

degree black belt. I feel Karate has given her so much I cannot say enough

about it. She is a brave soul. I definitely recommend Karate to everyone.

Kathy Jo

[Guest guest]

,

Aimee started Karate at 6 years old, she has only had 1 maybe 2 lung

infections, she is now 12. Karate has proved to be a great aerobic workout

for her. But besides the physical aspects, the mental growth is fantastic,

yes she has her down times and Karate has helped. I myself train in the

martial arts and if she has pain like sinus or ears, we talk and breath

through the pain. I am hoping that as her CF progresses we can use the

Martial Arts as a way of getting through some of it. Her instructors are very

good to her, and help her physically and emotionally when needed. She has had

her black belt almost 2 years now and working towards earning her second

degree black belt. I feel Karate has given her so much I cannot say enough

about it. She is a brave soul. I definitely recommend Karate to everyone.

Kathy Jo

[Guest guest]

---, any sports like that is very good for CF kids I am told.

Keeps there lungs strong and helps loosen up the mucus(MS). When we

went to A CF conference over in Seattle not long ago, there was a

lady that was about 23 and she had mentioned that if not for her

folks she would probably not be here today. They took her out

jogging every day to loosen things in her lungs and keep them

strong, does make a lot of sense.

Margo, mother of 14 yr.old w/cf

In cfparents , " Keslar " wrote:

>

>

>

> I have noticed that alot of you have kids in sporting activities,

mainly

> martial arts. Tonight we are taking and his sister to a

private

> instructor to see if he is mature enough to start. What if any did

you see

> in a change in you or your child's health as a result of of the

activity and

> at what age did they start?

>

> mom to 3wcf and Brenna 7wocf

>

>

>

> _________________________________________________________________

> The new MSN 8 is here: Try it free* for 2 months

> http://join.msn.com/?page=dept/dialup

[Guest guest]

---, any sports like that is very good for CF kids I am told.

Keeps there lungs strong and helps loosen up the mucus(MS). When we

went to A CF conference over in Seattle not long ago, there was a

lady that was about 23 and she had mentioned that if not for her

folks she would probably not be here today. They took her out

jogging every day to loosen things in her lungs and keep them

strong, does make a lot of sense.

Margo, mother of 14 yr.old w/cf

In cfparents , " Keslar " wrote:

>

>

>

> I have noticed that alot of you have kids in sporting activities,

mainly

> martial arts. Tonight we are taking and his sister to a

private

> instructor to see if he is mature enough to start. What if any did

you see

> in a change in you or your child's health as a result of of the

activity and

> at what age did they start?

>

> mom to 3wcf and Brenna 7wocf

>

>

>

> _________________________________________________________________

> The new MSN 8 is here: Try it free* for 2 months

> http://join.msn.com/?page=dept/dialup

[Guest guest]

---, any sports like that is very good for CF kids I am told.

Keeps there lungs strong and helps loosen up the mucus(MS). When we

went to A CF conference over in Seattle not long ago, there was a

lady that was about 23 and she had mentioned that if not for her

folks she would probably not be here today. They took her out

jogging every day to loosen things in her lungs and keep them

strong, does make a lot of sense.

Margo, mother of 14 yr.old w/cf

In cfparents , " Keslar " wrote:

>

>

>

> I have noticed that alot of you have kids in sporting activities,

mainly

> martial arts. Tonight we are taking and his sister to a

private

> instructor to see if he is mature enough to start. What if any did

you see

> in a change in you or your child's health as a result of of the

activity and

> at what age did they start?

>

> mom to 3wcf and Brenna 7wocf

>

>

>

> _________________________________________________________________

> The new MSN 8 is here: Try it free* for 2 months

> http://join.msn.com/?page=dept/dialup

[Guest guest]

,

My son's CF doctor has a black belt in some form of karate. He always

said that that was a very good activity for people with CF because it

taught them discipline, focus, and controlled breathing -- which he

felt helped balance the stress of CF as they grew older and more

responsible for their own health.

When my son was about 3 years old (more than one year before CF

diagnosis), I enrolled him in a local " Tiny Tot Fitness Class. " It met

every Saturday morning for an hour. The kids got to walk on balance

beams and participate in group activities that focused on large motor

skills -- such as somersaults, running through a maze, and

stretching exercises, etc.

When hen was around age six, he begged us for karate lessons but after

a few months lost interest. He also played soccer during that time --

our YMCA had indoor soccer during the winter and outdoor soccer in the

spring. He kept up with the soccer for a couple years.

Also around age six, he played T-ball and moved up to baseball. This

was his passion -- and remains to this day. He played baseball every

spring and summer until 7th grade. He always lead his league in

stolen bases and was the fastest runner; often his coaches put him in

to pinch hit when they needed a speedy runner on base.

I don't remember what age he added basketball to his winter sport list

-- sometime in elementary school. But he still loves to go shoot hoops

with his friends (which is how he badly injured his ankle last April).

Both he and his sister took private summer swimming lessons from their

elementary school PE teacher, but to this day isn't very keen on

swimming, though he really took to snorkeling on one of our summer

trips to Florida.

At age 23, he still has enough stamina to go dancing with friends and

has always loved watching his sister dance at her recitals. She

started ballet at age 3 1/2, added tap the next year and then added

jazz and pointe as soon as she hit the allowable ages. This is her

fourth year to teach dance at the studio where she always took

lessons. She also played summer softball for a few years, but to her

it was really only a social event, not a lifelong exercise activity.

She was a cheerleader in 8th and 9th grade, but didn't like how it

pulled her focus away from dance so she dropped it (plus, too many

injuries in cheerleading!).

Dance is a great activity for kids with CF because like karate, it

teaches them discipline and breathing techniques. It builds muscles,

grace and self esteem.

Like most girls, my daughter went through the " I love horses " phase.

So her dad bought her a pony one Christmas. The love affair lasted a

couple months until the horse threw her; after that she didn't want to

ride again -- but horseback riding is a great way to jiggle loose

mucus. I've always been wary of kids with respiratory ailments being

around straw bedding (fungus loves to lurk) so our kids weren't

allowed to play in the hay barns.

We had 3-wheelers and 4-wheelers on our farm and loved riding

them. Bumping over the terrain in the meadow was another good way to

jiggle loose mucus!

Both my kids have asthma but know when to use their inhalers prior to

sports if they need them. I think whether or not your children have CF

it's really important to make physical activity a natural part of

their daily lives. And you just can't talk it, you gotta walk it --

you and your spouse have to show that you value physical activity and

make it a part of your lives. Exercise isn't just for kids with CF. My

kids new that going to a fitness center to run a treadmill was

important to me in the winter since I don't handle the cold well, but

as soon as the weather warmed in the spring I racewalked every night

for 2 1/2 - 3 miles and kept it up until it got too cold in the fall.

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

> I have noticed that alot of you have kids in sporting activities,

mainly

> martial arts. Tonight we are taking and his sister to a

private

> instructor to see if he is mature enough to start. What if any did

you see

> in a change in you or your child's health as a result of of the

activity and

> at what age did they start?

>

> mom to 3wcf and Brenna 7wocf

>

>

>

> _________________________________________________________________

> The new MSN 8 is here: Try it free* for 2 months

> http://join.msn.com/?page=dept/dialup

[Guest guest]

<< I'm having some weird symptoms this morning, and thought some of you may

share some insight. My right hand always shakes in the morning, especially

the thumb, when I extend it. This morning, I've noticed the whole hand

shakes when I rest the bottom part of my hand and try to lift the rest up.

Also, my legs will shake when I try to lift up to tiptoe position while

sitting...right more than left and becoming much worse if I hold the

position. The shaking is up down, like I can't control the position. >>

Hi Melody

These are both manisfestations of Spacticity I'd ask your doctor if that

isn't whats causing this to happen -- and if they are troublesome there are

several avenues of help that I'd discuss with your primary care or

neurologist or physiatrist ( you should probably also drop a note explaining

to your neurosurgeon unless you have an upcomming appt . where you'll be able

to discuss it --but this isn't a symtpom you need the neurosurgeons help to

treat . )

You doctor will also notice other impacts during testing such as your

reflexes may be abnormal /hyper with your leg flinging itself hard when they

tap with the reflex hammer .

Things I'd disccuss with the doctor include addressing your safety given this

can affect your walking ability ( the muscles may tire more quickly since

your typically fighting some stiff feelings and may be " recruiting the help "

of muscles nornally not needed to help keep your ballance and move )...a

referal to physical therapy in WARM water may help you gain some extra

strenght and coordination to help with walking safely and preventing falls

which could cause more injury or harm .

The physical therapist can also help design an addapted stretching program

for you to follow since stretching several times a day briefly may greatly

reduce the impacts of spactity and pain too . My basic stretching takes about

10 mins to do in full a couple times a day ..and when just one muscle group

gets tight just a couple mins to stretch that limb or my back again to help

releave the spasming and tightness and avoid MORE medication too .

Referal to occupational therapy to help access if addaptive equipment needs

( examples might be getting a shower chair or bath bench, raised toilet seat

and bars on each side to help sitting and rising up and grab bars in the

bathroom) and using other techniques to accomplish normal everyday

activites with less effort and fatique .

Some really simple things can make a big differance such as an electric

mixer in the kitchen that is attached to a bowl platform allowing you to mix

hands free if you cook lots from scratch , using a set of weighted silverwear

and cups may make eating safer and easier , a vacume cleaner with push /pull

assistance built in if your the house cleaner , reacher sticks to get things

on the floor or over your head ...perhaps driving modifications for your car

( using a clutch can be VERY hard with the leg impacts you discribe ) and the

stearing wheel may be addapted to make it easier to grip /steer safely ..your

work envirement either at a job or at home at your computer ...between a

physical therapist evaluation and therapy and occupational therapy evals of

both home and your work envirement with recomendations you'll have a safer

and easier time coping with having spacticity .

Also there are several medications that may offer lots of improvement in

spacticity . The oldest /most commonly tried first is baclofen . Others

include zanaflex , perhaps neurontin ( some recent studies show it's helpful

) and a few more less commonly used . Know that if it becomes severe they can

also consider a pump implanted that delivers much smaller doses of the

medication dirrectly into your spinal cord area allowing less medication to

be more effective and reducing side effect impacts if these are troublesome

too .

Chiari OR SM can cause spactity - your doctor will access your changes / and

help monitor if it is progressing and this is something you may need done

periodically that is best done by a local physician who can work with you

frequently during medication changes ect when it flares up or progresses .

If you don't already see a physiatrist I'd ask for referal there to help sort

out JUST what sorts of therapists /treatments will help you mannage

spacticity ...That made a big differance for me .

Do remember the Bobby funds are available to anyone with chiari or SM

as a source to pay for addaptive equipment or modifications you might benifit

from . You get an application through ASAP - up to $1000 per person with your

doctors written prescription for the things you need /want the funds to

purchse . The occupational therapist can write up a list of what will best

help once you've narrowed down what you'd want the funds to pay for - then

your doctor just sign the letter recomending these things . You'll also need

a purchase invoice for each one ( or catalog page photocopied with the name

/addy of the vendor . The application is short and easy and they DO Have

funds available they are encouraging us to apply for !

So ...I hope thats helpful Melody ...I've had spacticity for years now

....there are lighthearted fun moments with it ...Just immagine sitting at a

pub listening to an irish jig or bluegrass band play fast ...your hand slapin

down on your thigh while your LEG BOUNCES ALONG endlessly not tiring at all

in time to the music - tehehe .

All those things above have helped keep mine mannagable and it doesn't

interfear greatly with my life ...I have gone to using an electric chair to

help extend my activities since fighting the impacts leave your muscles

feeling tired /weeker and spasming ...something else you could discuss with

your therapists and doctor .

Sending a hug ...while this isn't something everyone with chiari or sm gets

...it's also not uncommon .

in Paradise

[Guest guest]

Taken from http://www.syringo.org/

Syringomyelia (SM) is a disorder in which a cyst forms within the spinal

cord. This cyst, called a syrinx, expands and elongates over time,

destroying the center of the cord. Since the spinal cord connects the brain

to the nerves in the extremities, this damage may result in pain, weakness,

and stiffness in the back, shoulders, arms or legs. Other symptoms may

include headaches and loss of the ability to feel extremes of hot or cold,

especially in the hands and disruption in body temperature. SM may also

adversely affect sweating, sexual function and bladder and bowel control.

So....

Syringomyelia = The disorder

Syrinx = The cyst/ pocket(s) of fluid

You can have a syrinx without having Chiari.

Hope this helps

Question

Thanks to all of you who answered my post the other day. However I am

still confused. Some say syringomyelia is syrinx-- some say it is

two totally different things??? I am confused. Can somone please

explain??

Also, can you have a syrinx without having Chairi, because I have

noted that my symptoms seem more chairi related than syrinx. Loss of

balance, headaches more liken to migraine (constant), ice-pick

headaches,tired all the time, numbness or just pins and needles head

to toe, falling over, talking like I am drunk etc.

No one has ever noticed or said if I have this or maybe they just

weren't looking for this on my MRI...is this something that they

would have noticed right away?? I have had 3 MRI's in the past three

years, 1 on just my brain, 1 on my brain and upper spine (this is

when they finally found the syrinx,) and lastweek they did my whole

spine. So I am curious,can people with Syrnx have the exact syptoms

of chairi without having Chairi?? I am so fed up with feeling like

this, and have doctors and neurologists who do not much about syrinx

etc...

exasperated in Calgary!

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

Taken from http://www.syringo.org/

Syringomyelia (SM) is a disorder in which a cyst forms within the spinal

cord. This cyst, called a syrinx, expands and elongates over time,

destroying the center of the cord. Since the spinal cord connects the brain

to the nerves in the extremities, this damage may result in pain, weakness,

and stiffness in the back, shoulders, arms or legs. Other symptoms may

include headaches and loss of the ability to feel extremes of hot or cold,

especially in the hands and disruption in body temperature. SM may also

adversely affect sweating, sexual function and bladder and bowel control.

So....

Syringomyelia = The disorder

Syrinx = The cyst/ pocket(s) of fluid

You can have a syrinx without having Chiari.

Hope this helps

Question

Thanks to all of you who answered my post the other day. However I am

still confused. Some say syringomyelia is syrinx-- some say it is

two totally different things??? I am confused. Can somone please

explain??

Also, can you have a syrinx without having Chairi, because I have

noted that my symptoms seem more chairi related than syrinx. Loss of

balance, headaches more liken to migraine (constant), ice-pick

headaches,tired all the time, numbness or just pins and needles head

to toe, falling over, talking like I am drunk etc.

No one has ever noticed or said if I have this or maybe they just

weren't looking for this on my MRI...is this something that they

would have noticed right away?? I have had 3 MRI's in the past three

years, 1 on just my brain, 1 on my brain and upper spine (this is

when they finally found the syrinx,) and lastweek they did my whole

spine. So I am curious,can people with Syrnx have the exact syptoms

of chairi without having Chairi?? I am so fed up with feeling like

this, and have doctors and neurologists who do not much about syrinx

etc...

exasperated in Calgary!

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

I'll try and explain it alittle more simply........A Syrinx is a thing, and

Syringomyelia is the Condition a Syrinx causes. It took me also alittle

while before I understood the difference.

Second Question...........Yes, you can have a Syrinx without Chiari, and you

can also have Chiari without a Syrinx. It is hard to differentiate the

Syptoms between Chiari and a Syrinx..........alot of them can be the same or

similar, it seems. I don't think there is a complete List of Symptoms for

both entities.

Hope this helps.

Take Care,

Brande, RHIT

mymocha@...

However I am

> still confused. Some say syringomyelia is syrinx-- some say it is

> two totally different things??? I am confused. > Also, can you have a

syrinx without having Chairi, because I have

> noted that my symptoms seem more chairi related than syrinx. Loss of

> balance, headaches more liken to migraine (constant), ice-pick

> headaches,tired all the time, numbness or just pins and needles head

> to toe, falling over, talking like I am drunk etc.

>

[Guest guest]

I'll try and explain it alittle more simply........A Syrinx is a thing, and

Syringomyelia is the Condition a Syrinx causes. It took me also alittle

while before I understood the difference.

Second Question...........Yes, you can have a Syrinx without Chiari, and you

can also have Chiari without a Syrinx. It is hard to differentiate the

Syptoms between Chiari and a Syrinx..........alot of them can be the same or

similar, it seems. I don't think there is a complete List of Symptoms for

both entities.

Hope this helps.

Take Care,

Brande, RHIT

mymocha@...

However I am

> still confused. Some say syringomyelia is syrinx-- some say it is

> two totally different things??? I am confused. > Also, can you have a

syrinx without having Chairi, because I have

> noted that my symptoms seem more chairi related than syrinx. Loss of

> balance, headaches more liken to migraine (constant), ice-pick

> headaches,tired all the time, numbness or just pins and needles head

> to toe, falling over, talking like I am drunk etc.

>

[Guest guest]

I'll try and explain it alittle more simply........A Syrinx is a thing, and

Syringomyelia is the Condition a Syrinx causes. It took me also alittle

while before I understood the difference.

Second Question...........Yes, you can have a Syrinx without Chiari, and you

can also have Chiari without a Syrinx. It is hard to differentiate the

Syptoms between Chiari and a Syrinx..........alot of them can be the same or

similar, it seems. I don't think there is a complete List of Symptoms for

both entities.

Hope this helps.

Take Care,

Brande, RHIT

mymocha@...

However I am

> still confused. Some say syringomyelia is syrinx-- some say it is

> two totally different things??? I am confused. > Also, can you have a

syrinx without having Chairi, because I have

> noted that my symptoms seem more chairi related than syrinx. Loss of

> balance, headaches more liken to migraine (constant), ice-pick

> headaches,tired all the time, numbness or just pins and needles head

> to toe, falling over, talking like I am drunk etc.

>