Re: Update on Madeline/ She is one big HIVE

[Guest guest]

In a message dated 9/2/2003 4:07:59 PM Central Daylight Time,

entnursenikki@... writes:

>

You need to have her do a throat swab now!!!! We go in once a month once they

culture positive and if we have three negative cultures in a row we can wait

3 months. I would insist on have a culture more then that!! Deb A

[Guest guest]

Bless your heart!! I can't even imagine what that must be like for you or poor

Madeline. As far as the throat swabs go, our clinic only does them once a year

also. This too concerns me, but I do know that if the swab cultures anything

that they will do a repeat swab after the antibiotics are through. For

instance, Piper had a throat swab in July for her annual visit, it cultured for

staph. She has been on Bactrim for 6 weeks and we go back to clinic on the 11th

and they will do another swab to see if it is cleared up or still there. I hope

(cross your fingers for us) that it is gone!!!

Well, I hope that your little Madeline gets all cleared up soon!!!

How is the calendar coming? I think that I sent you a caption for Piper, but I

honestly don't remember. If you get a chance, could you let me know? Thanks!!!

Katy

Mom to Austin 4 no CF & Piper 13 months w/CF

[Guest guest]

Poor Madeline! This happened to me once with my oldest daughter. We

thought maybe it was an allergy to pink lemonade that she drank only because

that was the only thing we could figure out that she had not been in contact

with before. Now Steph on the other hand has this spotty like rash and a

low grade temp and joint pain that goes with it. This is what we call her

episodic arthritis. I believe that it also goes with an inflammation in the

lungs or some type of infection in the lungs, but that is only my belief.

Lets hope that Madeline is better very soon. At least Dad was home with her

when it happened.

Tina mother of Steph 17yoa wcf Update on Madeline/ She is one big HIVE

Madeline woke up this morning with huge hives all over her body!!!

Some of

the worse hives I've ever seen, and I'm an allergy nurse. We can't

think

of anything that we've done differently to cause an allergic

reaction. My

husband called me at work, he took a vacation day today, freaking

out.

He'll probably never take another vacation day again!!! I felt so

sorry

for her she had huge blistery looking welps from her shoulders to

just

below her little elbows. They were glowing red and hot. If you put

any

pressure on them at all they would turn white. It looked as though

it was

painful for her to bend her little arms. While in the office waiting

for

the pediatrician to come in she developed two mesquito bite looking

places

on her legs that grew to softball size before the DR. even made it

into the

room. She walked around the room reading books, pointing at the

colors on

the walls, occasionally scratching at her arms and her knees, but

pretty

much oblivious to the severity of what was going on. My husband and

I sat

there looking at her, and we started to itch all over, I guess it was

empathy!!! The doctor just told us to continue benadryl q 6h. She

said

they were classic hives, and she was either having a reaction to the

pollen

in the air, something she ate, or a bug bite. She seemed more

concerned

about the junky sounding cough, her lungs are clear, but her cough is

more

frequent and now has a wet sound. She has never coughed much in her

life

so her father and I are just now getting a taste of what this is

like!!

(and we're not liking it a bit) She has the classic dark circles, a

runny

nose, itchy watery eyes, a wet cough and cry, and she spiked a fever

of 102

under the arm on Sat. Her respirations also increased from a normal

30

breaths per minute to 65-70 bpm. She was also making a grunting

noise and

having nasal flaring, which they teach you are all siqns of

respiratory

distress in nursing school. SOOO Saturday night, I'm freaking out,

calling

our cf doc, who was luckily on call. She said to moniter her vitals

and if

her respirations stayed high and she was afebrile she would need to

start

her on an antibiotic. So today she called because our pediatrician

had

contacted her after our apt., and she wants to start her on Bactrim

due to

her increased cough. She also wants us to do one more treatment a

day on

her. I have a question for you all though. Back in December of

2002,

Madeline was hospitalized for pseudomonas. We only knew she had

pseudomonas because of her routine swab at her cf clinic. This new

Dr. of

hers says she only does one swab a year, not matter what. Does this

sound

right to everyone. IF so, let's say Madeline's yearly swab was in

November

and she never had any symptoms, we would have let her grow psedo. in

her

lungs for 11 months before we treated her?? This just doesn't make

any

sense to me. Like now, she is having symptoms of something, which

she has

never had any symptoms before, I would think a swab would be

necessary!!

But what do I know, I'm just a nerotic mother!!!!!

-Mom to Madeline 1.5 wcf/one great big hive:(

[Guest guest]

,

Our CF clinic just recently started doing routine sputum cultures twice a year.

before this they only did it once a year unless the child was fresh out of a

hospital stay for a flare up. That said, If I had requested a sputum culture I

think they would have done it. I mean it's not invasive or anything, so why

not?

It does seem odd that if her respirations were that high they didn't feel it was

necessary to see her quickly. Combine that with a junky cough and the other

symptoms, I would call clinic and ask to have her seen. sounding clear to a

ped and sounding clear to a cf specialist can be 2 very different things..... I

hope she feels better soon and those welts go away!

Update on Madeline/ She is one big HIVE

Madeline woke up this morning with huge hives all over her body!!!

Some of

the worse hives I've ever seen, and I'm an allergy nurse. We can't

think

of anything that we've done differently to cause an allergic

reaction. My

husband called me at work, he took a vacation day today, freaking

out.

He'll probably never take another vacation day again!!! I felt so

sorry

for her she had huge blistery looking welps from her shoulders to

just

below her little elbows. They were glowing red and hot. If you put

any

pressure on them at all they would turn white. It looked as though

it was

painful for her to bend her little arms. While in the office waiting

for

the pediatrician to come in she developed two mesquito bite looking

places

on her legs that grew to softball size before the DR. even made it

into the

room. She walked around the room reading books, pointing at the

colors on

the walls, occasionally scratching at her arms and her knees, but

pretty

much oblivious to the severity of what was going on. My husband and

I sat

there looking at her, and we started to itch all over, I guess it was

empathy!!! The doctor just told us to continue benadryl q 6h. She

said

they were classic hives, and she was either having a reaction to the

pollen

in the air, something she ate, or a bug bite. She seemed more

concerned

about the junky sounding cough, her lungs are clear, but her cough is

more

frequent and now has a wet sound. She has never coughed much in her

life

so her father and I are just now getting a taste of what this is

like!!

(and we're not liking it a bit) She has the classic dark circles, a

runny

nose, itchy watery eyes, a wet cough and cry, and she spiked a fever

of 102

under the arm on Sat. Her respirations also increased from a normal

30

breaths per minute to 65-70 bpm. She was also making a grunting

noise and

having nasal flaring, which they teach you are all siqns of

respiratory

distress in nursing school. SOOO Saturday night, I'm freaking out,

calling

our cf doc, who was luckily on call. She said to moniter her vitals

and if

her respirations stayed high and she was afebrile she would need to

start

her on an antibiotic. So today she called because our pediatrician

had

contacted her after our apt., and she wants to start her on Bactrim

due to

her increased cough. She also wants us to do one more treatment a

day on

her. I have a question for you all though. Back in December of

2002,

Madeline was hospitalized for pseudomonas. We only knew she had

pseudomonas because of her routine swab at her cf clinic. This new

Dr. of

hers says she only does one swab a year, not matter what. Does this

sound

right to everyone. IF so, let's say Madeline's yearly swab was in

November

and she never had any symptoms, we would have let her grow psedo. in

her

lungs for 11 months before we treated her?? This just doesn't make

any

sense to me. Like now, she is having symptoms of something, which

she has

never had any symptoms before, I would think a swab would be

necessary!!

But what do I know, I'm just a nerotic mother!!!!!

-Mom to Madeline 1.5 wcf/one great big hive:(

[Guest guest]

Our clinic has always done a sputum culture at EVERY clinic visit and is

happy to do one in between if we request it.

I agree with you that once a year leaves too much unknown for too long. The

concern is also what others are unknowingly growing and passing on if the

clinic policy is to do the cultures so far apart.

M

[Guest guest]

you tell the doctor what you want for your child thats what they are there

for too.!!!!!!

Update on Madeline/ She is one big HIVE

> Madeline woke up this morning with huge hives all over her body!!!

> Some of

> the worse hives I've ever seen, and I'm an allergy nurse. We can't

> think

> of anything that we've done differently to cause an allergic

> reaction. My

> husband called me at work, he took a vacation day today, freaking

> out.

> He'll probably never take another vacation day again!!! I felt so

> sorry

> for her she had huge blistery looking welps from her shoulders to

> just

> below her little elbows. They were glowing red and hot. If you put

> any

> pressure on them at all they would turn white. It looked as though

> it was

> painful for her to bend her little arms. While in the office waiting

> for

> the pediatrician to come in she developed two mesquito bite looking

> places

> on her legs that grew to softball size before the DR. even made it

> into the

> room. She walked around the room reading books, pointing at the

> colors on

> the walls, occasionally scratching at her arms and her knees, but

> pretty

> much oblivious to the severity of what was going on. My husband and

> I sat

> there looking at her, and we started to itch all over, I guess it was

> empathy!!! The doctor just told us to continue benadryl q 6h. She

> said

> they were classic hives, and she was either having a reaction to the

> pollen

> in the air, something she ate, or a bug bite. She seemed more

> concerned

> about the junky sounding cough, her lungs are clear, but her cough is

> more

> frequent and now has a wet sound. She has never coughed much in her

> life

> so her father and I are just now getting a taste of what this is

> like!!

> (and we're not liking it a bit) She has the classic dark circles, a

> runny

> nose, itchy watery eyes, a wet cough and cry, and she spiked a fever

> of 102

> under the arm on Sat. Her respirations also increased from a normal

> 30

> breaths per minute to 65-70 bpm. She was also making a grunting

> noise and

> having nasal flaring, which they teach you are all siqns of

> respiratory

> distress in nursing school. SOOO Saturday night, I'm freaking out,

> calling

> our cf doc, who was luckily on call. She said to moniter her vitals

> and if

> her respirations stayed high and she was afebrile she would need to

> start

> her on an antibiotic. So today she called because our pediatrician

> had

> contacted her after our apt., and she wants to start her on Bactrim

> due to

> her increased cough. She also wants us to do one more treatment a

> day on

> her. I have a question for you all though. Back in December of

> 2002,

> Madeline was hospitalized for pseudomonas. We only knew she had

> pseudomonas because of her routine swab at her cf clinic. This new

> Dr. of

> hers says she only does one swab a year, not matter what. Does this

> sound

> right to everyone. IF so, let's say Madeline's yearly swab was in

> November

> and she never had any symptoms, we would have let her grow psedo. in

> her

> lungs for 11 months before we treated her?? This just doesn't make

> any

> sense to me. Like now, she is having symptoms of something, which

> she has

> never had any symptoms before, I would think a swab would be

> necessary!!

> But what do I know, I'm just a nerotic mother!!!!!

> -Mom to Madeline 1.5 wcf/one great big hive:(

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Remember, too, that you don't always develop hives from new things. I ate

apricots a lot as a young child. Then once when we were on a road trip I drank

an apricot necter and swelled bigger than a balloon. I've never been able to

eat an appricot since. It then progressed to papaya's and then oranges. All of

which were things that I could eat before. So test the " old " things too.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Which clinic do you go to? We have a once a year rule at our clinic

too.

Sara

> Our clinic has always done a sputum culture at EVERY clinic visit

and is

> happy to do one in between if we request it.

> I agree with you that once a year leaves too much unknown for too

long. The

> concern is also what others are unknowingly growing and passing on

if the

> clinic policy is to do the cultures so far apart.

>

> M