RE: What does a ignorant surgeon need to know about T&A?

[Guest guest]

The issues we were told to be sensitive to included:

1. Surgeons don't like operating when the child has a fever, so try to time it

if the child has a routine schedule to the fevers

2. Bleeding is a universal concern with all children, not just - that's

what makes the surgery so dangerous. The surgeon should have a test taken to

determine whether your child has a higher risk of bleeding.  If that's the case,

the surgeon will likely opt out of performing the surgery.

3. Don't have any guidance on whole or partial removal of the tonsils.  We had

them all taken out as well as the adenoids.

Good luck.

 Regards,

Nick Handrinos

[Guest guest]

Hi Karin

To answer your questions:

1) I don't think it matters that your ENT surgeon has no experience with

kids as the T & A performed is the same as he would do on any other kid. The

recovery is also the same with the same risks etc. Definitely have the entire

tonsil removed - if it doesn't cure the fevers you don't want to wonder

afterwards if you should have had a complete removal. Most doctors won't perform

the op if the child is running a temperature so try and schedule it before or

after an episode, if they are regular.

2) Because no one really knows why T & A works I can not explain to you why it is

important to take the adenoids out as well but again, you don't want to wonder

afterwards if results would have been different if you had taken the adenoids

out as well. I would recommend to have both out while she's in theatre anyway.

Hope that helps

Regards

Inga

[Guest guest]

Our surgeon at Children's took extra caution with Sami also because he had never

had a child with .  He kept her in the hospital for 4 or 5 days and wanted

to keep her longer(she refused to drink till she went home), he wanted to make

sure she was drinking well.  His main concern that she would fever (she was due

for an episode right after) and since she had very high fevers would dehydrate.

[Guest guest]

Hi Karin,

 

Our surgeon had performed the surgery on other patients prior to Landon. 

Landon had his surgery two days after a fever had started.  We gave him the

steriod right away which prevented a full blown episode. We were allowed to give

steriods before surgery.  Our surgeon gave Landon a " cocktail " (his words) of

drugs I believe either right before the surgery or right after to prevent a

fever from starting from the stress of the surgery.  I believe it was  steriods

that Landon was given.  I am not sure if this is common practice or not with

T & A 's.  Best of luck to you and your son!

 

Jackie

[Guest guest]

Make sure you are comfortable with your Dr. 

 

If not go to another who is not ignorant with children.   Ask on this

board for a Dr. in your area that has had dealings with children.  Good

Luck

Leanne

Coldwell Banker Residential

1585 Hwy 77 N. Ste. A

Waxahachie, TX 75165

214-914-6851

[Guest guest]

I'm just curious- did the surgery work?  I'm new to this group and I was

wondering when do you get to the point that you or the doctor decide surgery is

the way to go?  How do you go about it from an insurance standpoint?  What's

the reason for the surgery?  I hope that's not too many questions.  We go see

the specialist at CCMC again today.  At this point I'm not even sure what I

have to say anymore- I feel like he hasn't said much to me in our proir viist. 

I'm so frustrated!

Thanks

[Guest guest]

Hi ,

I suspect that you have not had the chance to search the archives. Many of us

on this board have gone the T & A route resulting in a 100% cure or near 100%

cure. For a handful of people it did not work.

Personally we came to the conclusion based on few studies that had overwheming

results. Our son's results are consistent with the studies. These studies have

been posted to the files section.

Our ped encouraged us to go the T & A route because she had a few patients

that it worked on (they have been patients of hers for years, and she has never

seen the fevers return). We chose an ENT who is well known in the DC metro area

and who had a decent amount of patients and also saw positive results.

We too were frustrated with doctors, as long term meds were really not an option

for us and most of them wanted to go this route. I'm really not satisfied with

a 20% success rate, so once i read the research on T & A, and hearing first hand

success stories here, I was lined up right away. It was a great choice for us

because we just celebrated my son's first full year fever free.

I suspect that I had as a child, as my mom ALWAYS talks about the scary

fevers I had as a small child and how i was always sick. Clearly I outgrew it,

but had terrible tonsil problems all through high school and remeber getting a

fever 2 or so times a year that was terribly high. I believe most of these kids

will eventually outgrow it (as I suppose I did), but we were too impatient to

wait it out. When reading these messages I would get terrified seeing parents

dealing with this problem on and off for years and years, so we were desparate

to try the T & A and so far there are no regrets.

[Guest guest]

Hi ,

I suspect that you have not had the chance to search the archives. Many of us

on this board have gone the T & A route resulting in a 100% cure or near 100%

cure. For a handful of people it did not work.

Personally we came to the conclusion based on few studies that had overwheming

results. Our son's results are consistent with the studies. These studies have

been posted to the files section.

Our ped encouraged us to go the T & A route because she had a few patients

that it worked on (they have been patients of hers for years, and she has never

seen the fevers return). We chose an ENT who is well known in the DC metro area

and who had a decent amount of patients and also saw positive results.

We too were frustrated with doctors, as long term meds were really not an option

for us and most of them wanted to go this route. I'm really not satisfied with

a 20% success rate, so once i read the research on T & A, and hearing first hand

success stories here, I was lined up right away. It was a great choice for us

because we just celebrated my son's first full year fever free.

I suspect that I had as a child, as my mom ALWAYS talks about the scary

fevers I had as a small child and how i was always sick. Clearly I outgrew it,

but had terrible tonsil problems all through high school and remeber getting a

fever 2 or so times a year that was terribly high. I believe most of these kids

will eventually outgrow it (as I suppose I did), but we were too impatient to

wait it out. When reading these messages I would get terrified seeing parents

dealing with this problem on and off for years and years, so we were desparate

to try the T & A and so far there are no regrets.

[Guest guest]

Hi ,

I suspect that you have not had the chance to search the archives. Many of us

on this board have gone the T & A route resulting in a 100% cure or near 100%

cure. For a handful of people it did not work.

Personally we came to the conclusion based on few studies that had overwheming

results. Our son's results are consistent with the studies. These studies have

been posted to the files section.

Our ped encouraged us to go the T & A route because she had a few patients

that it worked on (they have been patients of hers for years, and she has never

seen the fevers return). We chose an ENT who is well known in the DC metro area

and who had a decent amount of patients and also saw positive results.

We too were frustrated with doctors, as long term meds were really not an option

for us and most of them wanted to go this route. I'm really not satisfied with

a 20% success rate, so once i read the research on T & A, and hearing first hand

success stories here, I was lined up right away. It was a great choice for us

because we just celebrated my son's first full year fever free.

I suspect that I had as a child, as my mom ALWAYS talks about the scary

fevers I had as a small child and how i was always sick. Clearly I outgrew it,

but had terrible tonsil problems all through high school and remeber getting a

fever 2 or so times a year that was terribly high. I believe most of these kids

will eventually outgrow it (as I suppose I did), but we were too impatient to

wait it out. When reading these messages I would get terrified seeing parents

dealing with this problem on and off for years and years, so we were desparate

to try the T & A and so far there are no regrets.

[Guest guest]

Hi

You're correct, I just joined this group and haven't had a  chance to look

through everything.  I thank you for you story.  When my daughter was

diagnosed the pediatrician gave me some info immediately regarding t & A as an

option.  I will be speaking to him today.  As I understand the " average " is 35

to 59 episodes before they grow out of it.  Since my daughter was diagnosed

she's had 12- I'm not sure I want her to go through this for much longer.  The

specialist agreed that the t & a resulted in near 100% success rate but he was

pretty reluctant .  I'll keep you posted and thank you!  It's so hard to make

a decision like this for my baby girl !!

[Guest guest]

Hi

You're correct, I just joined this group and haven't had a  chance to look

through everything.  I thank you for you story.  When my daughter was

diagnosed the pediatrician gave me some info immediately regarding t & A as an

option.  I will be speaking to him today.  As I understand the " average " is 35

to 59 episodes before they grow out of it.  Since my daughter was diagnosed

she's had 12- I'm not sure I want her to go through this for much longer.  The

specialist agreed that the t & a resulted in near 100% success rate but he was

pretty reluctant .  I'll keep you posted and thank you!  It's so hard to make

a decision like this for my baby girl !!

[Guest guest]

Hi

You're correct, I just joined this group and haven't had a  chance to look

through everything.  I thank you for you story.  When my daughter was

diagnosed the pediatrician gave me some info immediately regarding t & A as an

option.  I will be speaking to him today.  As I understand the " average " is 35

to 59 episodes before they grow out of it.  Since my daughter was diagnosed

she's had 12- I'm not sure I want her to go through this for much longer.  The

specialist agreed that the t & a resulted in near 100% success rate but he was

pretty reluctant .  I'll keep you posted and thank you!  It's so hard to make

a decision like this for my baby girl !!

[Guest guest]

, we also chose the T & A route after I read as many studies as

possible. Calder is now 6 months fever free. I am cautiously optimistic

that he will not have anymore fevers. He has also grown and developed so

much in the last six months. His preschool teacher noted that he has really

" come into his own " in the last 6 months!

[Guest guest]

, we also chose the T & A route after I read as many studies as

possible. Calder is now 6 months fever free. I am cautiously optimistic

that he will not have anymore fevers. He has also grown and developed so

much in the last six months. His preschool teacher noted that he has really

" come into his own " in the last 6 months!

[Guest guest]

, we also chose the T & A route after I read as many studies as

possible. Calder is now 6 months fever free. I am cautiously optimistic

that he will not have anymore fevers. He has also grown and developed so

much in the last six months. His preschool teacher noted that he has really

" come into his own " in the last 6 months!

[Guest guest]

,

 

For us the surgery worked, so far, I don't want to jinx it.  Landon has been

fever free since September.  He has gained 7lbs. he actually is getting a little

belly! He is a different child since his surgery.  If the fevers do come back

this break was worth it. We got to the point where it was just taking a toll on

his quality of life.  The prednisone made the fevers come every week.  I hated

that we were pumping so many drugs into this tiny body and came to the

conclusion that the risk of surgery out weighed the risks of the long term

effects of the drugs.  Landon was almost 5 at the time of his surgery and it did

not appear he was outgrowing any time soon.  We struggled with the

decision of surgery or not.  I was terrified, it was very difficult.  Our ped.

was against the surgery which made it even more difficult.  Our hematologist was

totally on board and extremely helpful in finding a surgeon familiar with

.  Insurance was not

a problem for us, it was completely covered.  Good luck to you.  It is a hard

decision, do your research and follow your heart, you know what is best as a

mom.

 

Jackie

[Guest guest]

,

 

For us the surgery worked, so far, I don't want to jinx it.  Landon has been

fever free since September.  He has gained 7lbs. he actually is getting a little

belly! He is a different child since his surgery.  If the fevers do come back

this break was worth it. We got to the point where it was just taking a toll on

his quality of life.  The prednisone made the fevers come every week.  I hated

that we were pumping so many drugs into this tiny body and came to the

conclusion that the risk of surgery out weighed the risks of the long term

effects of the drugs.  Landon was almost 5 at the time of his surgery and it did

not appear he was outgrowing any time soon.  We struggled with the

decision of surgery or not.  I was terrified, it was very difficult.  Our ped.

was against the surgery which made it even more difficult.  Our hematologist was

totally on board and extremely helpful in finding a surgeon familiar with

.  Insurance was not

a problem for us, it was completely covered.  Good luck to you.  It is a hard

decision, do your research and follow your heart, you know what is best as a

mom.

 

Jackie

[Guest guest]

,

 

For us the surgery worked, so far, I don't want to jinx it.  Landon has been

fever free since September.  He has gained 7lbs. he actually is getting a little

belly! He is a different child since his surgery.  If the fevers do come back

this break was worth it. We got to the point where it was just taking a toll on

his quality of life.  The prednisone made the fevers come every week.  I hated

that we were pumping so many drugs into this tiny body and came to the

conclusion that the risk of surgery out weighed the risks of the long term

effects of the drugs.  Landon was almost 5 at the time of his surgery and it did

not appear he was outgrowing any time soon.  We struggled with the

decision of surgery or not.  I was terrified, it was very difficult.  Our ped.

was against the surgery which made it even more difficult.  Our hematologist was

totally on board and extremely helpful in finding a surgeon familiar with

.  Insurance was not

a problem for us, it was completely covered.  Good luck to you.  It is a hard

decision, do your research and follow your heart, you know what is best as a

mom.

 

Jackie

[Guest guest]

I'm new here too. Is there a method to the archives by topic? I took a

quick glance and read a few. Gramma

[Guest guest]

I'm new here too. Is there a method to the archives by topic? I took a

quick glance and read a few. Gramma

[Guest guest]

I'm new here too. Is there a method to the archives by topic? I took a

quick glance and read a few. Gramma

[Guest guest]

Jackie, glad to hear Landon is doing so well:) Sorry I don't post much all, I

read and keep up. Just don't want to jinx our good luck either:) Aiden also

had his tonsels out (adenoids out the year prior) and has been fever free since

september. He was 3 at the time he had his surgery. At that point he was on

the prednisone which got rid of the fevers after the first dose, but were coming

back about once a week. He has gained 8 pounds and several inches since

september. He is like a whole different kid! Eats and sleeps like I never

thought he would and just so much happier and sillier. Keeping our fingers

crossed that this is our permanent solution, but just happy for now that things

are going so well. Definately don't regret the decision for surgery although

the immunologist was against it. I still really believe that for some kids

there is a link to the fevers and the tonsels and andenoids. Aiden never had

tonselitis or strep throat either. Good luck to all of you!

Laurie

[Guest guest]

Jackie, glad to hear Landon is doing so well:) Sorry I don't post much all, I

read and keep up. Just don't want to jinx our good luck either:) Aiden also

had his tonsels out (adenoids out the year prior) and has been fever free since

september. He was 3 at the time he had his surgery. At that point he was on

the prednisone which got rid of the fevers after the first dose, but were coming

back about once a week. He has gained 8 pounds and several inches since

september. He is like a whole different kid! Eats and sleeps like I never

thought he would and just so much happier and sillier. Keeping our fingers

crossed that this is our permanent solution, but just happy for now that things

are going so well. Definately don't regret the decision for surgery although

the immunologist was against it. I still really believe that for some kids

there is a link to the fevers and the tonsels and andenoids. Aiden never had

tonselitis or strep throat either. Good luck to all of you!

Laurie

[Guest guest]

Jackie, glad to hear Landon is doing so well:) Sorry I don't post much all, I

read and keep up. Just don't want to jinx our good luck either:) Aiden also

had his tonsels out (adenoids out the year prior) and has been fever free since

september. He was 3 at the time he had his surgery. At that point he was on

the prednisone which got rid of the fevers after the first dose, but were coming

back about once a week. He has gained 8 pounds and several inches since

september. He is like a whole different kid! Eats and sleeps like I never

thought he would and just so much happier and sillier. Keeping our fingers

crossed that this is our permanent solution, but just happy for now that things

are going so well. Definately don't regret the decision for surgery although

the immunologist was against it. I still really believe that for some kids

there is a link to the fevers and the tonsels and andenoids. Aiden never had

tonselitis or strep throat either. Good luck to all of you!

Laurie

[Guest guest]

Laurie,

 

I remember, Aiden had his surgery around the same time as Landon.  I am so happy

it worked for him.  Our story is the same, Landon is a different person.  Life

is so good!  I never realized how the fevers affected our whole family until

they were gone.  Best of luck to you, hopefully this will last forever!!

Jackie