Re: First appointment with Rheumatology

[Guest guest]

unfortunatly your ID doctor was naive to the success of T & A. I could not imagine

what basis the ID doctor was using to dispense his advise, one can only

wonder.... When you head to the Rheumatologist, I would come with the Licamelli

study posted to the files section of this site, it is the most recent research,

published at the beginning of this year.

If T & A is your goal, I would not expect too much support from Rheum. I found

that Rheums were very impressed with writing prescriptions and running blood

work. Its nice to have all of that bloodwork done to rule out anything more

sinister, but if you already have a diagnosis, I would guess that the Rheum will

just test some scripts out on your daughter, as all of these kids have varying

levels of success. THe only doctor I found with comprehensive knowledge of

was our ENT-go figure,

Good luck to you, I know its scary, but for us once we did the T & A and now have

a healthy child, our fever days seem like a long ago rough patch. It is a huge

weight lifted. Sounds like your daughter is having more mild episodes, but it

must be terrible going through this 2xs a month, you must be living in a

constant state of stress and anxiety. Hang in there!

[Guest guest]

unfortunatly your ID doctor was naive to the success of T & A. I could not imagine

what basis the ID doctor was using to dispense his advise, one can only

wonder.... When you head to the Rheumatologist, I would come with the Licamelli

study posted to the files section of this site, it is the most recent research,

published at the beginning of this year.

If T & A is your goal, I would not expect too much support from Rheum. I found

that Rheums were very impressed with writing prescriptions and running blood

work. Its nice to have all of that bloodwork done to rule out anything more

sinister, but if you already have a diagnosis, I would guess that the Rheum will

just test some scripts out on your daughter, as all of these kids have varying

levels of success. THe only doctor I found with comprehensive knowledge of

was our ENT-go figure,

Good luck to you, I know its scary, but for us once we did the T & A and now have

a healthy child, our fever days seem like a long ago rough patch. It is a huge

weight lifted. Sounds like your daughter is having more mild episodes, but it

must be terrible going through this 2xs a month, you must be living in a

constant state of stress and anxiety. Hang in there!

[Guest guest]

unfortunatly your ID doctor was naive to the success of T & A. I could not imagine

what basis the ID doctor was using to dispense his advise, one can only

wonder.... When you head to the Rheumatologist, I would come with the Licamelli

study posted to the files section of this site, it is the most recent research,

published at the beginning of this year.

If T & A is your goal, I would not expect too much support from Rheum. I found

that Rheums were very impressed with writing prescriptions and running blood

work. Its nice to have all of that bloodwork done to rule out anything more

sinister, but if you already have a diagnosis, I would guess that the Rheum will

just test some scripts out on your daughter, as all of these kids have varying

levels of success. THe only doctor I found with comprehensive knowledge of

was our ENT-go figure,

Good luck to you, I know its scary, but for us once we did the T & A and now have

a healthy child, our fever days seem like a long ago rough patch. It is a huge

weight lifted. Sounds like your daughter is having more mild episodes, but it

must be terrible going through this 2xs a month, you must be living in a

constant state of stress and anxiety. Hang in there!

[Guest guest]

I am not sure what your Rheumatologist will do.  Probably more tests?  We never

saw an ID doc, just a Rheum.  We did more blood work ruling out cyclic

neutropenia and some DNA testing.  Ultimately it was our regular Pediatrician

who referred us to an ENT for the T & A.  Luckily, our Pediatrician was already

familiar with the study (you really need to take a copy of it on your appt with

the Rheum and your Ped - it is amazing how many doctors are unaware of this!)

 

Our ENT was also aware of it and was completely in agreement with having the T & A

done after reviewing Tyler's history.

 

Tyler's surgery was in August and he has not fevered since the episode before

the surgery. 

I am hopeful that it will continue be a success, but even if it is temporary I

have seen a huge difference in his communication skills since the surgery.

 

I wish you the best of luck at your appt and with whatever course you decide to

go with your child's condition (it is a personal choice for all of us).

 

Happy Holidays

Pruden

Tyler Pruden 3yr old, fevered since 3mo ? - T & A Aug 5,2008 - no fevers

since

Dylan Pruden 9mo

[Guest guest]

I am not sure what your Rheumatologist will do.  Probably more tests?  We never

saw an ID doc, just a Rheum.  We did more blood work ruling out cyclic

neutropenia and some DNA testing.  Ultimately it was our regular Pediatrician

who referred us to an ENT for the T & A.  Luckily, our Pediatrician was already

familiar with the study (you really need to take a copy of it on your appt with

the Rheum and your Ped - it is amazing how many doctors are unaware of this!)

 

Our ENT was also aware of it and was completely in agreement with having the T & A

done after reviewing Tyler's history.

 

Tyler's surgery was in August and he has not fevered since the episode before

the surgery. 

I am hopeful that it will continue be a success, but even if it is temporary I

have seen a huge difference in his communication skills since the surgery.

 

I wish you the best of luck at your appt and with whatever course you decide to

go with your child's condition (it is a personal choice for all of us).

 

Happy Holidays

Pruden

Tyler Pruden 3yr old, fevered since 3mo ? - T & A Aug 5,2008 - no fevers

since

Dylan Pruden 9mo

[Guest guest]

Hi I don't know if anyone else's child has this problem, but when we go to

the rheumatoligst my son either starts running a temp or gets one that nite. the

rheum. Dr. tends to move his joints in ways that puts stress on his body and

makes his mussels and joints hurt very bad which sets of the inflammation and

there we go again. Something to watch for. Good luck char.

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[Guest guest]

Thank you for replying.

So, do you guys suggest we take this study to our pediatrician and ask

her to refer us to an ENT? instead of going the Rheumatology route?

Our diagnosis is two years old though, I am thinking a fresh disgnosis

will be good to convince the ENT. Who gives this diagnosis? Two years

back, it was the Infectios disease speicalist at Childrens who gave us

the diagnosis. I really don't want her to go through so many blood

tests which alwyas came negative for every disease under the sun.

Thanks