Re: Testing & tonsils question

June 17, 2004

Hi Tracey,

I guess my line of reasoning would be that unless the tonsil surgery is

going to make Maddie WORSE, then I would move forward with it simply because

there is a chance that it will make things better. Prior to Danny's surgery,

he had blood draws 2X per week for three months and they never showed

anything. Since his tonsillectomy two years ago, however, he has been fever

free (thank you, God).

Surgery is always scary, but being sick every month is, in my opinion,

scarier. I know you'll make the right decision. Follow your heart and do

what's best for your baby.

Rosemarie

Mom to Danny age 10

Denver, CO

June 17, 2004

Hi Tracey,

I guess my line of reasoning would be that unless the tonsil surgery is

going to make Maddie WORSE, then I would move forward with it simply because

there is a chance that it will make things better. Prior to Danny's surgery,

he had blood draws 2X per week for three months and they never showed

anything. Since his tonsillectomy two years ago, however, he has been fever

free (thank you, God).

Surgery is always scary, but being sick every month is, in my opinion,

scarier. I know you'll make the right decision. Follow your heart and do

what's best for your baby.

Rosemarie

Mom to Danny age 10

Denver, CO

June 17, 2004

Rosemarie,

Thank you so much for your reply.

Did your son have blood cultures done or regular CBC's.

Blood cultures are put in a little glass bottle and it takes 48 to get

back to see if anything has grown. It's sent to see if there's an

infection in the blood stream. It's very similar to a strep throat test

where they wait to see if it grows. Although the tonsil is a glad and

if there's an infection inside it, I don't think it would necessarily

show up on routine blood work or a blood culture.

Anyway, that's the blood test that Maddie's doctor said would have

shown something.

I do think your reasoning is very good and we will still see the ENT

about the tonsils. Also her tonsils are huge anyway. She snores at

night and the last time she had fever the dr. said her tonsils were

touching.

Tracey

mom to Maddie, 5

Brent, 9

League city, TX

On Thursday, June 17, 2004, at 05:08 PM, Rosemarie/Mike wrote:

> Hi Tracey,

>

> I guess my line of reasoning would be that unless the tonsil surgery is

> going to make Maddie WORSE, then I would move forward with it simply

> because

> there is a chance that it will make things better. Prior to Danny's

> surgery,

> he had blood draws 2X per week for three months and they never showed

> anything. Since his tonsillectomy two years ago, however, he has been

> fever

> free (thank you, God).

>

> Surgery is always scary, but being sick every month is, in my opinion,

> scarier. I know you'll make the right decision. Follow your heart

> and do

> what's best for your baby.

>

> Rosemarie

> Mom to Danny age 10

> Denver, CO

>

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>

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>

June 17, 2004

Rosemarie,

Thank you so much for your reply.

Did your son have blood cultures done or regular CBC's.

Blood cultures are put in a little glass bottle and it takes 48 to get

back to see if anything has grown. It's sent to see if there's an

infection in the blood stream. It's very similar to a strep throat test

where they wait to see if it grows. Although the tonsil is a glad and

if there's an infection inside it, I don't think it would necessarily

show up on routine blood work or a blood culture.

Anyway, that's the blood test that Maddie's doctor said would have

shown something.

I do think your reasoning is very good and we will still see the ENT

about the tonsils. Also her tonsils are huge anyway. She snores at

night and the last time she had fever the dr. said her tonsils were

touching.

Tracey

mom to Maddie, 5

Brent, 9

League city, TX

On Thursday, June 17, 2004, at 05:08 PM, Rosemarie/Mike wrote:

> Hi Tracey,

>

> I guess my line of reasoning would be that unless the tonsil surgery is

> going to make Maddie WORSE, then I would move forward with it simply

> because

> there is a chance that it will make things better. Prior to Danny's

> surgery,

> he had blood draws 2X per week for three months and they never showed

> anything. Since his tonsillectomy two years ago, however, he has been

> fever

> free (thank you, God).

>

> Surgery is always scary, but being sick every month is, in my opinion,

> scarier. I know you'll make the right decision. Follow your heart

> and do

> what's best for your baby.

>

> Rosemarie

> Mom to Danny age 10

> Denver, CO

>

<image.tiff>

>

<image.tiff>

>

June 17, 2004

Hi Tracey,

I think Danny had one blood culture, but all the others were regular CBCs.

We struggled a bit with the decision to have his tonsils out just because

the whole idea of surgery scared us. Fran helped me to manage my fear,

thank goodness!!

In the recovery room, when he was having a hard time coming out of the

anesthesia, I momentarily regretted my decision. But literally, within 48

hours, he was a different boy. I don't think he even knew how crummy he

felt until he felt better. He has been a different boy since the surgery.

He even looks different. After the surgery, he grew TWO clothes sizes in

three months. He could finally gain weight! Before, he'd catch up and then

lose it all again during the next fever. We are SO thankful we made the

decision to move forward with the surgery.

I know it doesn't work for everyone, but I have never heard a parent on the

site say that they regretted having the surgery done. All of the kids have

gotten some relief, even if it's just in the form of reduced symptoms during

episodes.

Keep us posted as to what the ENT says. We'll be thinking of you.

Rosemarie

Mom to Danny age 10

Denver, CO

June 17, 2004

Hi Tracey,

I think Danny had one blood culture, but all the others were regular CBCs.

We struggled a bit with the decision to have his tonsils out just because

the whole idea of surgery scared us. Fran helped me to manage my fear,

thank goodness!!

In the recovery room, when he was having a hard time coming out of the

anesthesia, I momentarily regretted my decision. But literally, within 48

hours, he was a different boy. I don't think he even knew how crummy he

felt until he felt better. He has been a different boy since the surgery.

He even looks different. After the surgery, he grew TWO clothes sizes in

three months. He could finally gain weight! Before, he'd catch up and then

lose it all again during the next fever. We are SO thankful we made the

decision to move forward with the surgery.

I know it doesn't work for everyone, but I have never heard a parent on the

site say that they regretted having the surgery done. All of the kids have

gotten some relief, even if it's just in the form of reduced symptoms during

episodes.

Keep us posted as to what the ENT says. We'll be thinking of you.

Rosemarie

Mom to Danny age 10

Denver, CO

June 17, 2004

Tracey,

As an infant in the ER until ph was 19 months old.... blood cultures

were usually done... His CBC would run from 27,000 to 49,000 which is

extremely high and indicative of a severe infection... (endocarditis,

meningitis etc)... so when the ER doc would see that they would insist on

blood cultures. Same when he was hospitilized at 8 months, 9 months and 12

months... He also had 3 spinal taps.

Once the diagnosis was made... and the symptoms were the same monthly... we

stopped. Now if the symptoms were confusing or different we would probably

still do a blood culture to make sure. But as ph has gotten older the

extreme temps... (103.5-107.5) have dropped. He has gone as high at 4 yrs

old as 105.2 just last episode but on average he goes to 103 now and he

responds to Motrin... whereas as a toddler and infant he needed Tylenol and

Motrin alternating every 3 hrs around the clock and he would NEVER go down

more than a degree or two.

Now he goes to normal for 6-8 hrs ... so we are doing so much better.

God Bless,

Fran

PS... ph had his tonsils out at 2.10 months but did not get significant

relief as many others did.

Ughhh... I wish he did!!

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

June 17, 2004

Tracey,

As an infant in the ER until ph was 19 months old.... blood cultures

were usually done... His CBC would run from 27,000 to 49,000 which is

extremely high and indicative of a severe infection... (endocarditis,

meningitis etc)... so when the ER doc would see that they would insist on

blood cultures. Same when he was hospitilized at 8 months, 9 months and 12

months... He also had 3 spinal taps.

Once the diagnosis was made... and the symptoms were the same monthly... we

stopped. Now if the symptoms were confusing or different we would probably

still do a blood culture to make sure. But as ph has gotten older the

extreme temps... (103.5-107.5) have dropped. He has gone as high at 4 yrs

old as 105.2 just last episode but on average he goes to 103 now and he

responds to Motrin... whereas as a toddler and infant he needed Tylenol and

Motrin alternating every 3 hrs around the clock and he would NEVER go down

more than a degree or two.

Now he goes to normal for 6-8 hrs ... so we are doing so much better.

God Bless,

Fran

PS... ph had his tonsils out at 2.10 months but did not get significant

relief as many others did.

Ughhh... I wish he did!!

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

June 17, 2004

Thought this was interesting.....

2 days before Maddie's last fever episode we happened to be at the

doctors for routine blood work (CBC) and her white count was normal-

10,000 but just 2 days later we were at the hospital during a high

fever time and her white count more than doubled to 30,000. The doctor

thought it was interesting that it went to high in such a short period

of time. We didn't know that before but because we just happened to be

doing a blood test before the episode this time we found it.

Maddie is do for an episode any day now but so far she hasn't had one.

She has a blister in her mouth for the first time ever and complained

about having " balls " in her feet. I don't know what that means.

But I'm wondering if the blister means it's coming or this is it, but

without fever.

Tracey

Mom to Maddie 5yrs old

& Brent 9 yrs. old

League City, TX

On Thursday, June 17, 2004, at 07:13 PM, Fran Bulone wrote:

> Tracey,

> As an infant in the ER until ph was 19 months old.... blood

> cultures

> were usually done... His CBC would run from 27,000 to 49,000 which is

> extremely high and indicative of a severe infection... (endocarditis,

> meningitis etc)... so when the ER doc would see that they would insist

> on

> blood cultures. Same when he was hospitilized at 8 months, 9 months

> and 12

> months... He also had 3 spinal taps.

>

> Once the diagnosis was made... and the symptoms were the same

> monthly... we

> stopped. Now if the symptoms were confusing or different we would

> probably

> still do a blood culture to make sure. But as ph has gotten older

> the

> extreme temps... (103.5-107.5) have dropped. He has gone as high at 4

> yrs

> old as 105.2 just last episode but on average he goes to 103 now and

> he

> responds to Motrin... whereas as a toddler and infant he needed

> Tylenol and

> Motrin alternating every 3 hrs around the clock and he would NEVER go

> down

> more than a degree or two.

>

> Now he goes to normal for 6-8 hrs ... so we are doing so much better.

> God Bless,

> Fran

> PS... ph had his tonsils out at 2.10 months but did not get

> significant

> relief as many others did.

>

> Ughhh... I wish he did!!

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

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>

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June 17, 2004