Prednisone

[Guest guest]

I would say have them actually READ all of the recent studies proving that T & A

is nearly 90-95% effective in curing . True, none of the studies have

followed the kids over 48 months, but for us, it is well worth a break for a

minimum of 4 years to have a T & A. My son had a T & A last month and there are not

even words to describe what impact this has had on him. He is a new child, full

of energy, a huge appetite, and his cheeks are flush with new life. It is like

he has awoken to a new world. A world full of energy and health. I literally

feel like those tonsils of his were a ball and chain dragging him down, sucking

his energy.

How can you bypass them? He's your child and if your answer is no, then they

need to drop it period the end. The doctors then need to figure out a plan B. We

never did any drugs other than Tylenol & Motrin. We were not interested in

giving our then not even 1yr old a steroid. I have been on steroids and the

side effects are nasty.

I can email you the most recent study, published earlier this year, just

let me know. Unlike the doctors you are seeing, mine thought T & A was the best

way to go. I did not start seeing this new doctor until my son was 22 months

old. I'm sure if I had started with her earlier, my son would have had surgery

at 18mos instead of 24 months.

You need to go with your gut; sometimes medicine needs to be a combination of

science and your gut instinct.

I have a question. Why would your doctor put your child on drugs before running

blood tests? This is insane Or do you mean invasive tests such as spinal and

bone marrow tests? Certainly my 1yr old hated being poked, but it was for his

own good. Before we did the T & A, we did genetic testing and a TON of other

blood tests for a host of disorders. Then, after they could find nothing

concrete, we started down the path. We needed those blood tests to rule

out anything more sinister.

From your posting, it sounds like you are correct in not having faith in these

doctors. Before I would ever even step foot in a new doctors office, I would

call the doctor first and make sure they were very familiar with Periodic Fever

Syndromes. I have no patience or time to deal with a doctor that knows less

than I do about PFS. I'm better off consulting this message board than some of

the bozo's I've spoken to on the phone. I might sound harsh, but it is quite a

frustrating process and my heart goes out to you.

Good Luck!

@...: cass_inong@...: Mon, 23 Jun 2008

00:03:34 +0000Subject: Prednisone

Hi everyone. We just took our daughter to UCSF, Infectious Disease Specialists.

All arrows point to , no surprise. The team of doctors there really want us

to try the prednisone treatment, which my husband and I are not wanting to do.

However, I feel like they will not explore other options (T & A) without us first

trying the steroids. I realize this is our choice, but getting this through to

the doctors is a frustrating process. The consensus there is basically that

there is no test to diagnose , but if she doesn't respond at all to the

steroids then they rule it out and do invasive blood tests. We also do not have

a good doctor here, at least not one who I have faith in, to help us manage the

steroid treatment or one who even knows about . I am just feeling a bit

frustrated, as I am sure you all have felt through this process. Any suggestions

on how to get the T & A approved by the doctor will be appreciated - meaning how I

can bipass the infectious disease department's recommendation for steriods

first. Thanks,CassandraJayden, 3 years

[Guest guest]

Hello. I just wanted to point out that, like so many others here,

the prednisone made my son's episodes come much more quickly,

sometimes only a week between being completely healed and starting

again. And, the symptoms were more severe. But, since my doctor

didn't seem to know about , we continued with the steroids. It

wasn't until I discovered this condition and faxed him the info, that

I realized what the steroids were doing. So, I understand your

frustration. That being said, responding to steroids is one of the

ways drs. diagnose the syndrome, so doing it one time might be

necessary. As far as the T & A, we're scheduled for one this summer,

but my son has had countless blood tests including CBC's twice a week

for six weeks, a biopsy of the mouth sores, allergy testing, a

conlonoscopy and upper endoscopy before they would diagnose him. The

dr. named a bunch of medications we could try, but I insisted on

going the T & A route and he understood. My problem with all the

specialists is that they were not very knowedgeable and it felt like

they kept blowing me off. I had them send all the med. records to my

pediatrician (who is great) and she called the local ENT's until she

found one that would perform the procedure. I don't know if any of

that helped, but good luck with your daughter. She'll be in my

prayers.

Christie

[Guest guest]

Hello. I just wanted to point out that, like so many others here,

the prednisone made my son's episodes come much more quickly,

sometimes only a week between being completely healed and starting

again. And, the symptoms were more severe. But, since my doctor

didn't seem to know about , we continued with the steroids. It

wasn't until I discovered this condition and faxed him the info, that

I realized what the steroids were doing. So, I understand your

frustration. That being said, responding to steroids is one of the

ways drs. diagnose the syndrome, so doing it one time might be

necessary. As far as the T & A, we're scheduled for one this summer,

but my son has had countless blood tests including CBC's twice a week

for six weeks, a biopsy of the mouth sores, allergy testing, a

conlonoscopy and upper endoscopy before they would diagnose him. The

dr. named a bunch of medications we could try, but I insisted on

going the T & A route and he understood. My problem with all the

specialists is that they were not very knowedgeable and it felt like

they kept blowing me off. I had them send all the med. records to my

pediatrician (who is great) and she called the local ENT's until she

found one that would perform the procedure. I don't know if any of

that helped, but good luck with your daughter. She'll be in my

prayers.

Christie

[Guest guest]

Hello. I just wanted to point out that, like so many others here,

the prednisone made my son's episodes come much more quickly,

sometimes only a week between being completely healed and starting

again. And, the symptoms were more severe. But, since my doctor

didn't seem to know about , we continued with the steroids. It

wasn't until I discovered this condition and faxed him the info, that

I realized what the steroids were doing. So, I understand your

frustration. That being said, responding to steroids is one of the

ways drs. diagnose the syndrome, so doing it one time might be

necessary. As far as the T & A, we're scheduled for one this summer,

but my son has had countless blood tests including CBC's twice a week

for six weeks, a biopsy of the mouth sores, allergy testing, a

conlonoscopy and upper endoscopy before they would diagnose him. The

dr. named a bunch of medications we could try, but I insisted on

going the T & A route and he understood. My problem with all the

specialists is that they were not very knowedgeable and it felt like

they kept blowing me off. I had them send all the med. records to my

pediatrician (who is great) and she called the local ENT's until she

found one that would perform the procedure. I don't know if any of

that helped, but good luck with your daughter. She'll be in my

prayers.

Christie

[Guest guest]

We had this same experience at UCSF. The doctor there peeked in my son's

mouth and said, " His tonsils look fine to me. " I said, " Well, I've read that

there's a high cure rate with T & A " . She said, " Well, I don't know. His

tonsils look fine. " I said, " So, are you saying we should just keep letting

him get soaring fevers every three weeks? " She said, " Hmm, I don't know.

That seems crazy too. " And then, " I don't really have anything else I can

say to help you. I've exhausted my knowledge. " (!?) We went to a different

ENT, with CPMC (Calif. Pacif. Med, Center). He listened to us. Then he said,

" Let's do the DNA tests for Trapps, Hyper IDG, and FMF. " In the meantime,

let's schedule a T & A. If the tests come back positive, we'll take a

different course, but if this is , his tonsils need to come out,

period. " In the mean time, we are using prednisone to keep the fevers away.

Like you, Cassandra, we were so frustrated with the " hmm, I don't know "

response at UCSF. Our new ENT had a logical, careful plan, one which seems

to match what other " veterans " have gone through. I recommend trying a

different ENT. I can give you his name if you're interested.

[Guest guest]

We had this same experience at UCSF. The doctor there peeked in my son's

mouth and said, " His tonsils look fine to me. " I said, " Well, I've read that

there's a high cure rate with T & A " . She said, " Well, I don't know. His

tonsils look fine. " I said, " So, are you saying we should just keep letting

him get soaring fevers every three weeks? " She said, " Hmm, I don't know.

That seems crazy too. " And then, " I don't really have anything else I can

say to help you. I've exhausted my knowledge. " (!?) We went to a different

ENT, with CPMC (Calif. Pacif. Med, Center). He listened to us. Then he said,

" Let's do the DNA tests for Trapps, Hyper IDG, and FMF. " In the meantime,

let's schedule a T & A. If the tests come back positive, we'll take a

different course, but if this is , his tonsils need to come out,

period. " In the mean time, we are using prednisone to keep the fevers away.

Like you, Cassandra, we were so frustrated with the " hmm, I don't know "

response at UCSF. Our new ENT had a logical, careful plan, one which seems

to match what other " veterans " have gone through. I recommend trying a

different ENT. I can give you his name if you're interested.

[Guest guest]

We had this same experience at UCSF. The doctor there peeked in my son's

mouth and said, " His tonsils look fine to me. " I said, " Well, I've read that

there's a high cure rate with T & A " . She said, " Well, I don't know. His

tonsils look fine. " I said, " So, are you saying we should just keep letting

him get soaring fevers every three weeks? " She said, " Hmm, I don't know.

That seems crazy too. " And then, " I don't really have anything else I can

say to help you. I've exhausted my knowledge. " (!?) We went to a different

ENT, with CPMC (Calif. Pacif. Med, Center). He listened to us. Then he said,

" Let's do the DNA tests for Trapps, Hyper IDG, and FMF. " In the meantime,

let's schedule a T & A. If the tests come back positive, we'll take a

different course, but if this is , his tonsils need to come out,

period. " In the mean time, we are using prednisone to keep the fevers away.

Like you, Cassandra, we were so frustrated with the " hmm, I don't know "

response at UCSF. Our new ENT had a logical, careful plan, one which seems

to match what other " veterans " have gone through. I recommend trying a

different ENT. I can give you his name if you're interested.

[Guest guest]

Like a number of people here, the Prednisone made my sons episodes

come too close for my son. Goodness was that a miracle stop to the

fever though! Wishing it worked for him. My question to you all...

when you stop the Prednisone does it make the next fever more severe?

After the first dose we gave him his fever was completely

uncontrollable until we gave him the Prednisone again. Not sure if we

were just too borderline on his weight with the Motrin(he's 33lbs so

we may need to step up the dose) or if it was due to the Prednisone

from the previous time.

Thanks,

Vivian

[Guest guest]

Like a number of people here, the Prednisone made my sons episodes

come too close for my son. Goodness was that a miracle stop to the

fever though! Wishing it worked for him. My question to you all...

when you stop the Prednisone does it make the next fever more severe?

After the first dose we gave him his fever was completely

uncontrollable until we gave him the Prednisone again. Not sure if we

were just too borderline on his weight with the Motrin(he's 33lbs so

we may need to step up the dose) or if it was due to the Prednisone

from the previous time.

Thanks,

Vivian

[Guest guest]

Like a number of people here, the Prednisone made my sons episodes

come too close for my son. Goodness was that a miracle stop to the

fever though! Wishing it worked for him. My question to you all...

when you stop the Prednisone does it make the next fever more severe?

After the first dose we gave him his fever was completely

uncontrollable until we gave him the Prednisone again. Not sure if we

were just too borderline on his weight with the Motrin(he's 33lbs so

we may need to step up the dose) or if it was due to the Prednisone

from the previous time.

Thanks,

Vivian

[Guest guest]

Vivian,

It was my experience that the prednisone made the next episode more

severe. It was a catch 22, though, because it worked so well to stop

the symptoms. However, we are not going to use it again, and are

seeing an ENT in two days to schedule a T & A.

Good Luck,

Christie

[Guest guest]

Vivian,

It was my experience that the prednisone made the next episode more

severe. It was a catch 22, though, because it worked so well to stop

the symptoms. However, we are not going to use it again, and are

seeing an ENT in two days to schedule a T & A.

Good Luck,

Christie

[Guest guest]

Vivian,

It was my experience that the prednisone made the next episode more

severe. It was a catch 22, though, because it worked so well to stop

the symptoms. However, we are not going to use it again, and are

seeing an ENT in two days to schedule a T & A.

Good Luck,

Christie

[Guest guest]

First off, thank you all for your responses. This is such a great

board!

, the 1st doctor we saw at UCSF was a Rosbe, who then

referred us to the infectious disease specialists, which was a panel

of 6 doctors. I am very interested in the name of you ENT at CPMC.

Do you know if I will need a referral?

Stanford was also mentioned by another poster (sorry can't remember

who). Any info on their doctors/facility will be helpful as well.

My husband and I just really don't want to do the steroids. I am a

firm believer in following my gut! Thank you all for your

advice/info and I look forward to receiving more!

Cassandra

[Guest guest]

First off, thank you all for your responses. This is such a great

board!

, the 1st doctor we saw at UCSF was a Rosbe, who then

referred us to the infectious disease specialists, which was a panel

of 6 doctors. I am very interested in the name of you ENT at CPMC.

Do you know if I will need a referral?

Stanford was also mentioned by another poster (sorry can't remember

who). Any info on their doctors/facility will be helpful as well.

My husband and I just really don't want to do the steroids. I am a

firm believer in following my gut! Thank you all for your

advice/info and I look forward to receiving more!

Cassandra

[Guest guest]

First off, thank you all for your responses. This is such a great

board!

, the 1st doctor we saw at UCSF was a Rosbe, who then

referred us to the infectious disease specialists, which was a panel

of 6 doctors. I am very interested in the name of you ENT at CPMC.

Do you know if I will need a referral?

Stanford was also mentioned by another poster (sorry can't remember

who). Any info on their doctors/facility will be helpful as well.

My husband and I just really don't want to do the steroids. I am a

firm believer in following my gut! Thank you all for your

advice/info and I look forward to receiving more!

Cassandra

[Guest guest]

Just to chime in- we see Dr. at Stanford. He is ped ID dr. We like

him a lot, he is always very patient and answers all our questions. Jsut

difficult to get an appt because he sees patients once per week. However, if you

need to see him right away, you can plead your case to his nurse and she will

help expedite the process. He did the genetic testing for TRAPS, HIDS, IgD, etc

right at the start. He prescribed predisone for us, only because at the time I

was not sure of the T & A. He is fully supportive of the T & A and can refer to an

ENT that is supportive as well. This is the route we are going now, we see an

ENT in August.

Ruthie

, 3,

[Guest guest]

Hi Cassandra,

We saw . We didn't need a referral, but that might depend on

your insurance. Good luck!!

[Guest guest]

Hi Ruthie,

Can you tell me who you see at Stanford? I have a name of someone

at CPMC as well and would like the name of who you see at Stanford

as we are definitely going to seek a second opinion before trying

the Prednisone. The doctor we saw at UCSF was a Rosbe, who

does T & A, but wasn't necessarily recommending it for us as she

thought we should see their infectious disease department first to

see what they recommended, which was the steroids. So good luck

with them if it turns out you need a 2nd opinion there.

By the way, thank you for the article in the Washington Post.

Amazing!

-Cassandra

[Guest guest]

Hi everyone

its bec again.

I'm lucky my Rheumatologist said if the steroids im on for the next 8 weeks

don't work then im having my tonsils out! my ENT surgeon is happy to do it if

necessary. (im in Australia, Perth W.A, if you are too go to Dr Murrey

He's A Rheumatologist he's mine hes great. And My ENT surgeon is Dr Francis

Chai.

Good Luck Everyone!

[Guest guest]

Hi Cassandra,

I just wanted to add in that we also see the doctors at Stanford. We

primarily see Dr. Tzielan Lee in the pediatric rheumatology

department - although we've seen the ID doctors their as well. They

have all been great - knowledgable, willing to research, open to our

concerns/input. Dr. Lee has been especially wonderful to us - she

has children the same age and I really felt like she could relate to

what we were going through. We had all of the genetic testing done,

we didn't try prednisone. My daughter's case isn't typical -

but we did end up having a T & A in May - at Stanford w/ Dr. Mercer,

who is an ENT specialist and said she sees a couple of cases like

this a year. So far, knock on wood, we've been fever free. We'll

see what the future holds ...

Good luck. I think we all understand how hard it is to see our

children go through this and I really felt having a supportive doctor

who we trusted was key in getting through this.

am

[Guest guest]

Hi Cassandra,

I just wanted to add in that we also see the doctors at Stanford. We

primarily see Dr. Tzielan Lee in the pediatric rheumatology

department - although we've seen the ID doctors their as well. They

have all been great - knowledgable, willing to research, open to our

concerns/input. Dr. Lee has been especially wonderful to us - she

has children the same age and I really felt like she could relate to

what we were going through. We had all of the genetic testing done,

we didn't try prednisone. My daughter's case isn't typical -

but we did end up having a T & A in May - at Stanford w/ Dr. Mercer,

who is an ENT specialist and said she sees a couple of cases like

this a year. So far, knock on wood, we've been fever free. We'll

see what the future holds ...

Good luck. I think we all understand how hard it is to see our

children go through this and I really felt having a supportive doctor

who we trusted was key in getting through this.

am

[Guest guest]

Hi Cassandra,

I just wanted to add in that we also see the doctors at Stanford. We

primarily see Dr. Tzielan Lee in the pediatric rheumatology

department - although we've seen the ID doctors their as well. They

have all been great - knowledgable, willing to research, open to our

concerns/input. Dr. Lee has been especially wonderful to us - she

has children the same age and I really felt like she could relate to

what we were going through. We had all of the genetic testing done,

we didn't try prednisone. My daughter's case isn't typical -

but we did end up having a T & A in May - at Stanford w/ Dr. Mercer,

who is an ENT specialist and said she sees a couple of cases like

this a year. So far, knock on wood, we've been fever free. We'll

see what the future holds ...

Good luck. I think we all understand how hard it is to see our

children go through this and I really felt having a supportive doctor

who we trusted was key in getting through this.

am

[Guest guest]

There's a bunch of research out there, and I believe there's even some

posted in the Files or Links section here. Our ID also mentioned that

there have been considerable studies done on asthma kids so perhaps

you can google that and find even more studies/info.

From a personal perspective, I myself was on Prednisone while

undergoing treatment for a childhood Leukemia. It has been well over

20 years and I've not experienced any long term side effects. Of

course while I was on it I had an uncontrollable appetite, wild mood

swings, weakened taste buds, a bloated look... and just about every

other side effect you could imagine. I was on WAY higher doses than

any kid could touch so of course my side effects were at the

extreme. There are certainly side effects and long term effects with

any drug(as someone posted Motrin and Tylenol too). You just have to

weigh the risks/benefits.

On that same note the Drs seem to be pretty strict about how many days

you need in between episodes before administering again. I'm not

sure what the optimal # of days is, but I do know that when my son

only had 11 days in between episodes they were hesitant to let him try

it again. The next time he tried it he went considerably longer.

Vivian

[Guest guest]

There's a bunch of research out there, and I believe there's even some

posted in the Files or Links section here. Our ID also mentioned that

there have been considerable studies done on asthma kids so perhaps

you can google that and find even more studies/info.

From a personal perspective, I myself was on Prednisone while

undergoing treatment for a childhood Leukemia. It has been well over

20 years and I've not experienced any long term side effects. Of

course while I was on it I had an uncontrollable appetite, wild mood

swings, weakened taste buds, a bloated look... and just about every

other side effect you could imagine. I was on WAY higher doses than

any kid could touch so of course my side effects were at the

extreme. There are certainly side effects and long term effects with

any drug(as someone posted Motrin and Tylenol too). You just have to

weigh the risks/benefits.

On that same note the Drs seem to be pretty strict about how many days

you need in between episodes before administering again. I'm not

sure what the optimal # of days is, but I do know that when my son

only had 11 days in between episodes they were hesitant to let him try

it again. The next time he tried it he went considerably longer.

Vivian