Introduction- new here

[Guest guest]

Hi all

My son was diagnosed through our pushing the ID doctors just last month after

monthly fevers for 2 years. He is 3 yrs old now. His fever cycle was about every

22-24 days.

We tried the first dose of Prednisone on Aug 21 and within hours his fever was

gone and he was getting better. Then 12 days later (Weds this week) he got

another fever that started at 99 and he immediately knows he's sick. Tylenol

which never worked seemed to hold it off for a while. When it reached 101.5 we

gave him another dose of Prednisone. Again within 3 hrs he was fever free and

sleeping through the night.

I notice his behavior 2 days post-Prednisone is not good. He's very needy and

uncooperative. But there are other stress factors in our life that could be

causing this behavior.

I read on this board that the steroid can increase the fever frequency. I can't

wait to start him on Activia to see if it helps. I don't want to give him the

steroids, but I can't bear to watch him endure any more fevers. We have missed

so much life due to .

For those who have gone the tonsillectomy route, how did you get your doctor's

buy-in to do the surgery? When I've brought it up, she has said it would be a

last resort. I guess only if the steroids aren't working. I'm still on the fence

about bringing him to Boston for a 2nd opinion.

[Guest guest]

Hi ,

I guess each doctor has their opinion. Our pediatrician is Dutch and was

trained in Holland, where they have a much different approach to pharmaceuticals

and are much more suspicious of the downplayed long term side effects American

doctors are quick to dismiss. She did not think steroids were a very good

option and in fact had a few children in her practice that were no longer

suffering from after T & A. She very much so encouraged me to not mess

around with the meds and go straight to surgery. Her belief was that even

though there is no " evidence " that these kids are harmed in the long run from

these fevers she thinks that it wears the body down and for her the chronic

fevers just did not sit well with her. The inflammation these kids suffer

monthly is not localized to one spot, but ravages the entire body.

If you want the T & A and think this is the route to take and are not comfortable

with constantly dosing your child with medications, sounds like you might have a

philosophical difference in opinion as to what the right course of action is and

you might not want to waste time convincing her, but just find a new doctor.

This is why I had to part ways with my son's first pediatrician because all he

wanted to do was to experiment with new antibiotics and medications and none of

it really made much sense and nothing was fixing the real problem.

if you still want to find a way to convince her, you should present to her the

studies published in mainstream medical journals that show an overwhelming

success rate from T & A surgery, these are posted in the files section and can be

printed.

If you take your child to Boston to see Licamelli, you already know what he is

going to say. His daughter suffered from which inspired all of his

research.

Good Luck!

[Guest guest]

Hi ,

I guess each doctor has their opinion. Our pediatrician is Dutch and was

trained in Holland, where they have a much different approach to pharmaceuticals

and are much more suspicious of the downplayed long term side effects American

doctors are quick to dismiss. She did not think steroids were a very good

option and in fact had a few children in her practice that were no longer

suffering from after T & A. She very much so encouraged me to not mess

around with the meds and go straight to surgery. Her belief was that even

though there is no " evidence " that these kids are harmed in the long run from

these fevers she thinks that it wears the body down and for her the chronic

fevers just did not sit well with her. The inflammation these kids suffer

monthly is not localized to one spot, but ravages the entire body.

If you want the T & A and think this is the route to take and are not comfortable

with constantly dosing your child with medications, sounds like you might have a

philosophical difference in opinion as to what the right course of action is and

you might not want to waste time convincing her, but just find a new doctor.

This is why I had to part ways with my son's first pediatrician because all he

wanted to do was to experiment with new antibiotics and medications and none of

it really made much sense and nothing was fixing the real problem.

if you still want to find a way to convince her, you should present to her the

studies published in mainstream medical journals that show an overwhelming

success rate from T & A surgery, these are posted in the files section and can be

printed.

If you take your child to Boston to see Licamelli, you already know what he is

going to say. His daughter suffered from which inspired all of his

research.

Good Luck!

[Guest guest]

Hi ,

I guess each doctor has their opinion. Our pediatrician is Dutch and was

trained in Holland, where they have a much different approach to pharmaceuticals

and are much more suspicious of the downplayed long term side effects American

doctors are quick to dismiss. She did not think steroids were a very good

option and in fact had a few children in her practice that were no longer

suffering from after T & A. She very much so encouraged me to not mess

around with the meds and go straight to surgery. Her belief was that even

though there is no " evidence " that these kids are harmed in the long run from

these fevers she thinks that it wears the body down and for her the chronic

fevers just did not sit well with her. The inflammation these kids suffer

monthly is not localized to one spot, but ravages the entire body.

If you want the T & A and think this is the route to take and are not comfortable

with constantly dosing your child with medications, sounds like you might have a

philosophical difference in opinion as to what the right course of action is and

you might not want to waste time convincing her, but just find a new doctor.

This is why I had to part ways with my son's first pediatrician because all he

wanted to do was to experiment with new antibiotics and medications and none of

it really made much sense and nothing was fixing the real problem.

if you still want to find a way to convince her, you should present to her the

studies published in mainstream medical journals that show an overwhelming

success rate from T & A surgery, these are posted in the files section and can be

printed.

If you take your child to Boston to see Licamelli, you already know what he is

going to say. His daughter suffered from which inspired all of his

research.

Good Luck!

[Guest guest]

Our immunologist was against the T & A even though he stated it had a 80-90%

chance of curing it. He wanted to try all conservative medication options

first, for years upon years it seemed. We eventually disagreed after another

year of suffering. We consulted an ENT who said there was no question he needed

a T & A as soon as possible. Six weeks later, it was done. We are very happy we

did it. It went smoothly and he has so much more energy and vibrancy.

Different medical specialties are trained in different schools of thought and

address the same problem in dramatically different ways. My advice is to follow

the treatment route that is most comfortable for you. It is a difficult

personal choice.

Good luck.

P.S. Our ENT was amazing if anyone needs one in Long Island/Queens, NY area.

He was in residency with Dr. Licameli and he is now knowledgeable about

(thanks to us!).

[Guest guest]

My ID doc didn't recommend the T & A surgery I found and ENT and went to him and

he agreed to do it when my son was 2 years old. He said that he had a sinus

infection and would probably need them out eventually. He also has had some

success with it improving the or eliminating it. We have been fever free

for 2 years and just had an outbreak of blisters in throat and tongue, tummy

ache and low grade fever. Doc thinks its coxsackie virus but, we have to wait

to see if it cycles again in a few weeks. I think the T & A was the best thing we

ever did. Good luck to you