Re: Re: Again with the pred.

[Guest guest]

My son is almost 4 yrs old (this month). We had his tonsils removed after

trying the pred. It did bring his fevers closer together an made him very

moody. I hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and

with his recommendation we had Cade's tonsils & adnoids removed. Dr. M.Biavati

(ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any, any

(knock on wood) fevers since. He is playful ready to go go go. Just a

different person and so is our family. Cade does complain some that his feet

hurt. I am probably going to take him to a rheumatologist after Christmas. He

does not complain all the time. Just every once in a while. If any one knows,

what is up with his feet hurting? But all in all I am so thankful we went

ahead with the surgery. He was only under for a short time. In and out. A

couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@...> wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and

flu on sat. and they retested him for strep on Wed. I should get the

results back from that tomorrow morning.

She gave him three days of an antibiotic just in case - which he has

been taking and she said that she would give us more if his strep is

postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart

usually to 3-4 days apart. I don't like that. But I don't know if I

should continue trying it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's

not a 100% cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he

continues on this super close cycle then he should be fevering again

in time for Santa - during which I will definately dose him again

(he's been sick the last 2 Christmases) but then I think I am

calling it done with the Pred. And on to the cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30%

for tonsilectomy and 30% for cimetidine and I don't even know what

for the Pred. Or something like that? So maybe one in three odds

that anything will work for us?

I am not a good decision maker - and I really don't like that I am

having to make decisions about his heatlhcare - don't get me wrong -

I would also hate to be told that we had to do one thing and not

another - I guess I just wish it was more consistent with the

children - and that there was a higher success rate with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

My son is almost 4 yrs old (this month). We had his tonsils removed after

trying the pred. It did bring his fevers closer together an made him very

moody. I hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and

with his recommendation we had Cade's tonsils & adnoids removed. Dr. M.Biavati

(ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any, any

(knock on wood) fevers since. He is playful ready to go go go. Just a

different person and so is our family. Cade does complain some that his feet

hurt. I am probably going to take him to a rheumatologist after Christmas. He

does not complain all the time. Just every once in a while. If any one knows,

what is up with his feet hurting? But all in all I am so thankful we went

ahead with the surgery. He was only under for a short time. In and out. A

couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@...> wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and

flu on sat. and they retested him for strep on Wed. I should get the

results back from that tomorrow morning.

She gave him three days of an antibiotic just in case - which he has

been taking and she said that she would give us more if his strep is

postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart

usually to 3-4 days apart. I don't like that. But I don't know if I

should continue trying it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's

not a 100% cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he

continues on this super close cycle then he should be fevering again

in time for Santa - during which I will definately dose him again

(he's been sick the last 2 Christmases) but then I think I am

calling it done with the Pred. And on to the cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30%

for tonsilectomy and 30% for cimetidine and I don't even know what

for the Pred. Or something like that? So maybe one in three odds

that anything will work for us?

I am not a good decision maker - and I really don't like that I am

having to make decisions about his heatlhcare - don't get me wrong -

I would also hate to be told that we had to do one thing and not

another - I guess I just wish it was more consistent with the

children - and that there was a higher success rate with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

Dear members,

My name is Gokhan. I am from Turkey. It has been 11 months that my 3.5 years

old daughter " Sude " is getting fevers. At the beginning we couldn't

understand why she had been getting fevers. For a long time we didn't

realise that fevers were periodic. Last 4 fever attacks came in 21 days

period. Our pediatrician focused on allergy, strep. bact. and than immune

system. But all weren't the cause of the fevers. On the other hand ENT

recommended us tonsils removal. We are going to ENT tomorrow again. Indeed

we trust in ENT very much because he removed adnoids too. Outcomes were

wonderful. We are at the decision making stage for tonsils removal. I was

wondering whether it would stop fever attacks. The following message helped

me very much. Because although we mentioned about Sude's unsubstantiated

fever attacks and , ENT didn't take it seriously and said that tonsils

removal would stop fevers. So Cade's case is a kind of verification for

tonsils removal. We'll see. Thanks for all of your contribution to the

group.

Sorry for my English if ther are mistakes.

Gökhan Akçam

Technology Solutions Coordinator

www.mbi.com.tr

From: [mailto: ] On Behalf Of

Leanne

Sent: Friday, December 22, 2006 8:06 AM

Subject: Re: Re: Again with the pred.

My son is almost 4 yrs old (this month). We had his tonsils removed after

trying the pred. It did bring his fevers closer together an made him very

moody. I hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and

with his recommendation we had Cade's tonsils & adnoids removed. Dr.

M.Biavati (ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any,

any (knock on wood) fevers since. He is playful ready to go go go. Just a

different person and so is our family. Cade does complain some that his feet

hurt. I am probably going to take him to a rheumatologist after Christmas.

He does not complain all the time. Just every once in a while. If any one

knows, what is up with his feet hurting? But all in all I am so thankful we

went ahead with the surgery. He was only under for a short time. In and out.

A couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@... <mailto:hannahlsmith%40charter.net> >

wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and

flu on sat. and they retested him for strep on Wed. I should get the

results back from that tomorrow morning.

She gave him three days of an antibiotic just in case - which he has

been taking and she said that she would give us more if his strep is

postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart

usually to 3-4 days apart. I don't like that. But I don't know if I

should continue trying it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's

not a 100% cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he

continues on this super close cycle then he should be fevering again

in time for Santa - during which I will definately dose him again

(he's been sick the last 2 Christmases) but then I think I am

calling it done with the Pred. And on to the cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30%

for tonsilectomy and 30% for cimetidine and I don't even know what

for the Pred. Or something like that? So maybe one in three odds

that anything will work for us?

I am not a good decision maker - and I really don't like that I am

having to make decisions about his heatlhcare - don't get me wrong -

I would also hate to be told that we had to do one thing and not

another - I guess I just wish it was more consistent with the

children - and that there was a higher success rate with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

Dear members,

My name is Gokhan. I am from Turkey. It has been 11 months that my 3.5 years

old daughter " Sude " is getting fevers. At the beginning we couldn't

understand why she had been getting fevers. For a long time we didn't

realise that fevers were periodic. Last 4 fever attacks came in 21 days

period. Our pediatrician focused on allergy, strep. bact. and than immune

system. But all weren't the cause of the fevers. On the other hand ENT

recommended us tonsils removal. We are going to ENT tomorrow again. Indeed

we trust in ENT very much because he removed adnoids too. Outcomes were

wonderful. We are at the decision making stage for tonsils removal. I was

wondering whether it would stop fever attacks. The following message helped

me very much. Because although we mentioned about Sude's unsubstantiated

fever attacks and , ENT didn't take it seriously and said that tonsils

removal would stop fevers. So Cade's case is a kind of verification for

tonsils removal. We'll see. Thanks for all of your contribution to the

group.

Sorry for my English if ther are mistakes.

Gökhan Akçam

Technology Solutions Coordinator

www.mbi.com.tr

From: [mailto: ] On Behalf Of

Leanne

Sent: Friday, December 22, 2006 8:06 AM

Subject: Re: Re: Again with the pred.

My son is almost 4 yrs old (this month). We had his tonsils removed after

trying the pred. It did bring his fevers closer together an made him very

moody. I hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and

with his recommendation we had Cade's tonsils & adnoids removed. Dr.

M.Biavati (ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any,

any (knock on wood) fevers since. He is playful ready to go go go. Just a

different person and so is our family. Cade does complain some that his feet

hurt. I am probably going to take him to a rheumatologist after Christmas.

He does not complain all the time. Just every once in a while. If any one

knows, what is up with his feet hurting? But all in all I am so thankful we

went ahead with the surgery. He was only under for a short time. In and out.

A couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@... <mailto:hannahlsmith%40charter.net> >

wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and

flu on sat. and they retested him for strep on Wed. I should get the

results back from that tomorrow morning.

She gave him three days of an antibiotic just in case - which he has

been taking and she said that she would give us more if his strep is

postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart

usually to 3-4 days apart. I don't like that. But I don't know if I

should continue trying it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's

not a 100% cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he

continues on this super close cycle then he should be fevering again

in time for Santa - during which I will definately dose him again

(he's been sick the last 2 Christmases) but then I think I am

calling it done with the Pred. And on to the cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30%

for tonsilectomy and 30% for cimetidine and I don't even know what

for the Pred. Or something like that? So maybe one in three odds

that anything will work for us?

I am not a good decision maker - and I really don't like that I am

having to make decisions about his heatlhcare - don't get me wrong -

I would also hate to be told that we had to do one thing and not

another - I guess I just wish it was more consistent with the

children - and that there was a higher success rate with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

Good luck. I hope everything goes well as it did for us. Let me know.

Leanne

Gökhan Akçam <gokhan.akcam@...> wrote:

Dear members,

My name is Gokhan. I am from Turkey. It has been 11 months that my 3.5 years

old daughter " Sude " is getting fevers. At the beginning we couldn't

understand why she had been getting fevers. For a long time we didn't

realise that fevers were periodic. Last 4 fever attacks came in 21 days

period. Our pediatrician focused on allergy, strep. bact. and than immune

system. But all weren't the cause of the fevers. On the other hand ENT

recommended us tonsils removal. We are going to ENT tomorrow again. Indeed

we trust in ENT very much because he removed adnoids too. Outcomes were

wonderful. We are at the decision making stage for tonsils removal. I was

wondering whether it would stop fever attacks. The following message helped

me very much. Because although we mentioned about Sude's unsubstantiated

fever attacks and , ENT didn't take it seriously and said that tonsils

removal would stop fevers. So Cade's case is a kind of verification for

tonsils removal. We'll see. Thanks for all of your contribution to the

group.

Sorry for my English if ther are mistakes.

Gökhan Akçam

Technology Solutions Coordinator

www.mbi.com.tr

From: [mailto: ] On Behalf Of

Leanne

Sent: Friday, December 22, 2006 8:06 AM

Subject: Re: Re: Again with the pred.

My son is almost 4 yrs old (this month). We had his tonsils removed after

trying the pred. It did bring his fevers closer together an made him very

moody. I hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and

with his recommendation we had Cade's tonsils & adnoids removed. Dr.

M.Biavati (ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any,

any (knock on wood) fevers since. He is playful ready to go go go. Just a

different person and so is our family. Cade does complain some that his feet

hurt. I am probably going to take him to a rheumatologist after Christmas.

He does not complain all the time. Just every once in a while. If any one

knows, what is up with his feet hurting? But all in all I am so thankful we

went ahead with the surgery. He was only under for a short time. In and out.

A couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 >

wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and

flu on sat. and they retested him for strep on Wed. I should get the

results back from that tomorrow morning.

She gave him three days of an antibiotic just in case - which he has

been taking and she said that she would give us more if his strep is

postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart

usually to 3-4 days apart. I don't like that. But I don't know if I

should continue trying it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's

not a 100% cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he

continues on this super close cycle then he should be fevering again

in time for Santa - during which I will definately dose him again

(he's been sick the last 2 Christmases) but then I think I am

calling it done with the Pred. And on to the cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30%

for tonsilectomy and 30% for cimetidine and I don't even know what

for the Pred. Or something like that? So maybe one in three odds

that anything will work for us?

I am not a good decision maker - and I really don't like that I am

having to make decisions about his heatlhcare - don't get me wrong -

I would also hate to be told that we had to do one thing and not

another - I guess I just wish it was more consistent with the

children - and that there was a higher success rate with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

Gokhan,

Please let us know the luck with the tonsillectomy. I am very interested

because my daughters fevers can run 7 days and fevers higher than 107.5. We see

our specialist in February. The more I hear of tonsil removal, the more hope it

brings to our family.

I was also very impressed with your English. My parents visited Turkey and met

some very nice people. I wish your family the best of luck and future health.

Ginger

Mother of le, 17 months (likely )

Re: Re: Again with the pred.

My son is almost 4 yrs old (this month). We had his tonsils removed after trying

the pred. It did bring his fevers closer together an made him very moody. I

hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and with

his recommendation we had Cade's tonsils & adnoids removed. Dr.

M.Biavati (ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any, any

(knock on wood) fevers since. He is playful ready to go go go. Just a different

person and so is our family. Cade does complain some that his feet hurt. I am

probably going to take him to a rheumatologist after Christmas.

He does not complain all the time. Just every once in a while. If any one knows,

what is up with his feet hurting? But all in all I am so thankful we went ahead

with the surgery. He was only under for a short time. In and out.

A couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@... <mailto:hannahlsmith%40charter.net> >

wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and flu on sat.

and they retested him for strep on Wed. I should get the results back from that

tomorrow morning.

She gave him three days of an antibiotic just in case - which he has been taking

and she said that she would give us more if his strep is postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart usually to

3-4 days apart. I don't like that. But I don't know if I should continue trying

it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's not a 100%

cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he continues on

this super close cycle then he should be fevering again in time for Santa -

during which I will definately dose him again (he's been sick the last 2

Christmases) but then I think I am calling it done with the Pred. And on to the

cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30% for

tonsilectomy and 30% for cimetidine and I don't even know what for the Pred. Or

something like that? So maybe one in three odds that anything will work for us?

I am not a good decision maker - and I really don't like that I am having to

make decisions about his heatlhcare - don't get me wrong - I would also hate to

be told that we had to do one thing and not another - I guess I just wish it was

more consistent with the children - and that there was a higher success rate

with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

Gokhan,

Please let us know the luck with the tonsillectomy. I am very interested

because my daughters fevers can run 7 days and fevers higher than 107.5. We see

our specialist in February. The more I hear of tonsil removal, the more hope it

brings to our family.

I was also very impressed with your English. My parents visited Turkey and met

some very nice people. I wish your family the best of luck and future health.

Ginger

Mother of le, 17 months (likely )

Re: Re: Again with the pred.

My son is almost 4 yrs old (this month). We had his tonsils removed after trying

the pred. It did bring his fevers closer together an made him very moody. I

hated that.

I have written this before but I feel I need to tell it again.

Cade's immunologist at Childrens Medical Center in Dallas Dr. Wasserman

recommended that we not continue with the pred. He gave us some choices and with

his recommendation we had Cade's tonsils & adnoids removed. Dr.

M.Biavati (ENT) removed them in October of this year.

Cade has since gained 4lbs is a different little boy. He has not had any, any

(knock on wood) fevers since. He is playful ready to go go go. Just a different

person and so is our family. Cade does complain some that his feet hurt. I am

probably going to take him to a rheumatologist after Christmas.

He does not complain all the time. Just every once in a while. If any one knows,

what is up with his feet hurting? But all in all I am so thankful we went ahead

with the surgery. He was only under for a short time. In and out.

A couple of weeks of pain. But worth it so far. I hope it is gone forever.

Leanne

Cade almost 4 -

Alisha 20

25

hannahls73 <hannahlsmith@... <mailto:hannahlsmith%40charter.net> >

wrote:

Hi Fran,

Thank you so much for your answer. I have taken him to the ped.

twice - once on Sat. and once on Wed. They tested him for strep and flu on sat.

and they retested him for strep on Wed. I should get the results back from that

tomorrow morning.

She gave him three days of an antibiotic just in case - which he has been taking

and she said that she would give us more if his strep is postive.

I was in NO WAY prepared for the cycle to turn from pretty far apart usually to

3-4 days apart. I don't like that. But I don't know if I should continue trying

it or not. I am interested in the cimeditine.

And the Rheum. was " pushing " for the tonsilectomy - but I know it's not a 100%

cure - and the thought of him going under with anesthia

(spelling?) makes me nuts.

I guess I need to talk to the docs again. Cause right now if he continues on

this super close cycle then he should be fevering again in time for Santa -

during which I will definately dose him again (he's been sick the last 2

Christmases) but then I think I am calling it done with the Pred. And on to the

cimetidine. I guess.

Fran - what's the " percentage " of " remission " - isn't it like 30% for

tonsilectomy and 30% for cimetidine and I don't even know what for the Pred. Or

something like that? So maybe one in three odds that anything will work for us?

I am not a good decision maker - and I really don't like that I am having to

make decisions about his heatlhcare - don't get me wrong - I would also hate to

be told that we had to do one thing and not another - I guess I just wish it was

more consistent with the children - and that there was a higher success rate

with stuff.

Thanks again Fran - I value your opinion.

Hannah

[Guest guest]

What did Dr. Panaro say about and Rheum. How are connected. Because

Cade's feet do hurt him sometimes but the the outcome after the surgery is

wonderful.

Thank you for responding.

hannahls73 <hannahlsmith@...> wrote:

Hi there! Thanks for your response - I am glad that the T and A

worked on your son and that you haven't seen the fevers return

since. It's definately something to think about. So you guys didn't

try the cimetidine?

I see that you are somewhere near Dallas, We are in Fort Worth but

we have seen the Ped. Rheum. at ish Rite - Dr. Panaro - and she

is super knowledgeable about all the PFSs. She's worked with Dr.

Kastner out at NIH and everything. So you might want to try and get

in to see her. They are really friendly too.

It takes a while to get in - a few months at least so you might want

to see if your Doc. will start the referral process now. It was well

worth the wait - it was so nice to sit down with someone who knew so

much about the PFSs.

I wish you continued good luck and thanks again for your response!

Hannah

Aidan - 3 - fevering 20 months

Sid - 5