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Re: T & A Questions

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Hi, I am mom to CJ who will be 3 April 1st and fever free for almost 1 year

now. Our decision was based on his response to prednisone. After almost a year

of fevers about every 18 days we ended up in Boston. The doctor we saw had seen

30 cases up to that point and after reviewing all of his many, many tests and

seeing the quick response ( fever disappearing after just one dose of

prednisone) he suggested the tonsils and adnoids be removed. The decision was

ultimately ours and he was only 22 months at the time. We decided to do it to

try anything to end his suffering. We are of course extremely happy with the

results. The surgery itself and about 10 days after was tough but we would do

it again in a minute. He is such a different kid. Hope I could help, if you

have any other questions feel free. Good luck. Dawn

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Jenn,

If you look back in the archives, you will see .any parents asking the same

questions. My favorite version was " who has had a T & A for their child and

regrets it? "

You ask what drove me to decide " yes " - it is primarily the responses that I

read for a year to questions just like yours. Over and over again, I saw people

respond positively. I have yet to see a single post where they " regretted "

having a T & A. Even if al of the symptoms didn't clear up or if they got

occasional episodes - no one regrets trying it (or posts it). I can't even say

I've seen anyone post that it had absolutely no impact - but I could be wrong.

We haven't gone long enough yet to say for certain, but I looked at our

spreadsheet and it has been 53 days since the last fever (which also had an ear

infection) and 64 days since the last solo fever.

We tried Prednisone with lots of aggression and fevers every 12-14 days if we

gave 2 tsp (10 mls), so we reduced it until we only used 3mls (at 35 lbs), which

was barely effective. We tried cimetidine for 4 months with no noticeable

improvement. Without steriods, she fevered around 105-106 for 4-7 days every 35

days or so.

So we decided it was either around 30 doses of Tylenol/Motrin every month, or a

daily drug, or we try the T & A. Ultimtely, we knew we would likely have to put

her ear tubes back in - so we decided that we should go ahead and try it.

While rough (very rough) for 10 days (primarily days 8-10), I can't see us ever

" regretting " it. What is there to regret? She's very fine now and they odds of

anything going wrong were so low.

I just wish we had better stats on treatment for our kids. We really need a

registry with timelines, medicines that work or don't work and surgeries.

They one thing I'm preparing myself for is for this to return around or just

before puberty. I'm seeing more posts of the sort. In my own (non-medical) head,

I think of this disorder affecting the children during high growth stages.

My daughter got it fairly young, but she is also very large for her age (now

36-37 inches and about 35 pounds pre-surgery at 29 months old). Being large

also helped in her recovery, since she lost several pounds.

Without more data - it is hard to know what the right answer is. So, the best

answer is whatever you and your family are comfortable with.

Best of luck in your decision making process.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

TREO: (404) 915-5035

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Ginger,

Thank you so much for your response (and other people's responses too

of course!)! It has been most helpful. My daughter has been fevering

since around 18 months and was just diagnosed with so I don't

want to jump on the T & A bandwagon too quickly you know? I am in the

process of doing my research and will be talking with her pedi once I

am done. My main concern is giving her steroids (even if it is

considered a low dose) versus subjecting her to surgery. Not two of

the best choices available but as a parent, I'm sure you can

understand my apprehension. I am going to do a search for the threazd

you pointed out right now.

I am thinking of trying out the prednisone and see how she takes it

and how it affects her fevers and going from there.

T'Mia (4yrs) fevering since 18 months.

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Your response pretty much mirrors my own concerns. I am very concerned

with giving her prednisone for any extended period of time, even in

such a small dose. As well as doing my research, I am going to email

my mother's friend tonight (she is a Dr.) because I trust her opinion

and ask her what she thinks on both the prednisone and T & A option.

Your last lines literally brought tears to my eyes.

T'Mia (4yrs) fevering since 18 months

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Your response pretty much mirrors my own concerns. I am very concerned

with giving her prednisone for any extended period of time, even in

such a small dose. As well as doing my research, I am going to email

my mother's friend tonight (she is a Dr.) because I trust her opinion

and ask her what she thinks on both the prednisone and T & A option.

Your last lines literally brought tears to my eyes.

T'Mia (4yrs) fevering since 18 months

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  • 1 year later...

Hi,

My daughter had her tonsils out at Children's Hospital in Boston. They give

strict instructions for a full two weeks--No school for two weeks, and a parent

must be with the child at all times. No running or dancing, only quiet play.

They are trying to reduce the risk of the scabs coming off prematurely. I'm not

positive yet i think risks for bleeding are actually the greatest at around 10

days post surgery. Lots of fluids over the two weeks also to help minimize

risks for bleeding.

Good luck.

Carmela

Mom to Carina- T & A Oct 2008

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