RE: Back again.

[Guest guest]

Hi Steve

I am so sorry to hear that the fevers are back. It is so hard to watch our

little ones go through this so regularly. And how precious is your little girl

to be worried about how YOU feel when she fevers. That's so sweet.

For us the T & A worked (so far, it's been 6 months). I know that every surgery

has it's risks and especially considering that you have someone in your circle

of friends where the child passed away following complications of that very

surgery, I can totally understand why your wife refuses. Still the constant

medication during every episode can't be good for them in the long run either

and seeing what Emma's life and our family's life is like now that we are not

constantly expecting fevers has made this surgery so worth while. There is

always a risk and it's a hard decision because it's an elective surgery, not one

you HAVE to have. If something goes wrong you'll never forgive yourself but we

got to the stage when we felt if we didn't try it, and kept watching Emma suffer

without trying EVERYTHING including T & A, we could never forgive ourselves

either.

If you are convinced that a T & A is the right way to go, go speak to a few

experts and get a realistic feel for how often there are complications etc.

Maybe you can pay privately to have your child stay in hospital for a couple of

days where medical care is immediately at hand should there be problems. I don't

know it's just an idea, and I have no idea how expensive that sort of thing

would be in the US. We live in South Africa and good medical care is

inexpensive. T & A has worked for so many of us on this board that I think it's

worth considering it and getting all the information (the good and the bad)

before you decide to go ahead or to rule it out.

Good luck and take care

Inga

[Guest guest]

Steve-

Your daughters reaction to your sadness it really touching. I know you want to

take her suffering away, but she too wants to take your suffering away. I think

when our kids react with such kindness and tenderness, it really makes us step

back in amazement and wonder at how such a little person can be so kind and

thoughtful. It makes you even long more for them to feel better and makes it

seem even more unfair that they are suffering so much. You clearly have a very

sweet little girl, I know you feel so blessed.

I certainly can understand your wife's anxiety since someone so close to your

lives died from this normally routine procedure. I have the same anxiety around

prescriptions, particularly Cipro (which BTW should NOT be prescribed routinely)

as it practically ruined my sister's life 3 years ago and she is still trying to

recover from the neurological and digestive damage it caused. She will never be

the same person after taking only 3 doses. I myself, nor my children, will ever

take Cipro or a drug in the fluoroquinolones family, it has actually been black

labeled since so many people have had tragic reactions to it. I too looked at

the T & A stats (1/15,000-1/36,000 die from the procedure, which amounts to 1 or 2

deaths a year) and figured that the chances of my son dying were extremely slim.

I also figured that his chances of surviving were even better than the published

stats for a few reasons: 1. I was using a pediatric ENT that is highly respected

at the top of his profession in a highly competitive major metropolitan area. 2.

the method he uses is the most cutting edge in medical advancements at this

time. 3. He has a spotless track record with the medical board.

One thing you might want to tell you wife to consider is the fact that

tonsillectomy is much more complicated when you get older. There is a higher

chance of bleeding. Your daughter might one day decide on her own to get this

procedure done herself and now the risk is even greater and recovery worse. The

information out there says that children often out grow this syndrome, but at

least from this board, it does not appear to be the case. I personally would

lose my mind if I had to watch my son suffer with this for years and years and

into high school. I have dreams for him and it does not include chronic illness

and I won't accept it. I know everyone learns to cope and even do very well

with chronic illness, but I could not sit back knowing I had not tried

everything possible. Our family life has changed dramatically after this

surgery and I am immensely grateful for each and every healthy day, so grateful

that I want to kiss the ground my son walks on. I suspect that after a few more

studies are conducted and more follow up is published, that T & A will be the

standard treatment for , its just too compelling.

I know yours is a rant, and I really hope that your family can find a way for

everyone to be happy, anxiety free, and healthy.

[Guest guest]

Steve,

Sorry your little girls fevers are back, wish that wasn't the case..  Landon

just had his T & A 11 days ago and I am glad I didn't know about your co-worker's

nephew, how awful!  I can understand why your wife is reluctant.  There are

risks, and I too struggled with the decision whether to do the surgery.  But I

would reason with myself.  There are risks in absolutely everything, more of a

risk driving to the hospital to get the surgery.  I especially did not like the

risk in administering so much medication.  I don't want to find out years from

now that organs are damaged from so much medication.  There are no guarantees

with any of this madness.  I do know I feel your pain and it is not easy

watching our children be sick all of the time, it down right stinks.  Feel free

to vent anytime, we can all relate.  Hope your daughter is feeling better.

Jackie mom to Landon fevering since a baby will be 5 on Oct. 1

[Guest guest]

Thank you for the kind words and advice , it really does help talking about

options. Again,thank you. Steve.

[Guest guest]

Steve,

 

I am so sorry to hear about the return of your daughters fevers.  I was scared

about having our son's tonsils out, especially because the ENT wanted him to

stay overnight because he was only 2.5yrs old. 

 

I wonder what type of infection the child contracted?  Was it actually in the

surgery site or somewhere else?  Finding out more details may help understand

it. 

 

Also, could you call an ENT office and talk with them about this.  Let them know

the situation and see if they are willing to give you stats on complications

from T & A in children.  I bet the numbers are extremely low. 

 

I understand your wife's feelings also.  I had mixed feeling about the surgery

initially.  Our son's fevers were every 2 weeks, pretty close to what you are

going thru.  He had fevered since 3mo old and I couldn't stand seeing what it

was doing to him.  Prednisone was not an option for me because his fevers were

already so close.  My husband and I decided to do the T & A.  So far Tyler has

skipped 3 fevers and the 4th would be due this coming weekend. 

 

Pruden

Tyler Pruden 2yr9mo fevered since 3mo - T & A 8/05/08 skipped 3 fevers so far

Dylan Pruden 6mo old

[Guest guest]

I think this disorder has made us so much closer to our children because of the

special attention they require. I know its brought me closer to my little girl

from the nights spent holding her, bathing her in water to bring down a fever,

sitting next to her for hours while she slept to make sure she didn't overheat

and cleaning up after the nausea nights. I remember one time driving 5 hours one

way for several tests and when I got home I was informed that the most important

test she needed could'nt be performed in my home hospital and we had to go back

the next day (10 hr round trip), you sure get to know your kid spending that

much time in the car together. I appreciate your response and I am so glad to be

at this site with this diagnosis,I remember when I didn't know what was wrong

with her and it felt like I was dying inside. I will keep exploring the T/A

option and maybe my wife will change her mind. Steve.

[Guest guest]

Thank you Jackie.

[Guest guest]

, the infection was a very aggressive one that apparently attacked his

lungs on the second night. Basically he drowned from fluid in his lungs why he

slept. His mother said he had ran around all day and never so much as a cough.

The next morning he didn't get up at his normal time and she just let him sleep

(figured he needed the rest) when she went in his room he was unresponsive. He

lived on support for one more day and they had to make the decision to stop the

support (he was brain dead), and they did. The patholagy report was vague at

best almost seemingly protecting the hospital (that had been under suspiscion

for other infections).I do know one thing, If we decide on the T/A I will

research the best track records for Hospitals and drive across country if I have

to. Thanks again, Steve.

[Guest guest]

Hi Steve,

Sorry to hear your daughter is fevering regularly. We all know how difficult it

is when the

fevers come that close -- I truly sympathize! As soon as I felt like my son was

getting

better I could tell he was gearing up for another one. It's tough.

Also sorry to hear that you personally knew of someone with T & A complications.

It's

surgery and it's scary and I imagine having a personal story makes it that much

scarier. It

may make sense to go talk to an ENT to get more info. Perhaps they can alleviate

some of

your and your wives concerns.

That being said... On our journey to get a T & A we happened to learn that my son

had

potential clotting issues. I was DEVASTATED as clotting issues and T & As don't

mix. One

surgeon flat out refused surgery(even after the Hematologist's clearance and

proper

treatement) and another said he'd do it with the suggested treatment and we'd

" keep an

eye and potentially keep him in the hospital longer. " Desperate to get SOME

break from

the fevers, and a little nervous to do the T & A because of his particular

clotting situation,

we tried Cimetedine. I was very skeptical because of the statistics posted here

and based

on a few postings of people without much luck. We weighed the options and

decided to try

it. Within days(literally) my son was a new boy!!! Truly! Color, appetite, mood,

sleep

schedule, everything!!! People even comment that he seems like a new kid. He's

been on

his longest fever free stretch since this began. We even did a vacation away and

I barely

thought about these crazy fevers! I know it's not successful for all, but I was

just curious if

you considered that avenue? May be an good compromise for you.

Vivian

[Guest guest]

THAT IS HORRIBLE.

I just cannot even imagine finding my little boy in his bed. I can completely

understand your wife's anxiety, that really hits home.

If I knew someone in my circle who had such an experience I would definitely

check my son into the hospital, even at my own expense, for a few days after.

It would be well worth the money to have the peace of mind.

If you do come around to the T & A route, I would without a doubt find the best

hospital possible and the best surgeon. You're welcome to crash at my house if

the DC area is in your driving range!

[Guest guest]

Thank you .

[Guest guest]

My daughter was kept in the hospital at children's for 5 days after. The Dr.

was extra cautious that she was doing well and drinking and no fevers before

they let her go home. They even wanted to keep her an extra couple of days and

she cried to go home and they finally let her. Just talk to your dr about your

fears. We had decided before the surgery that she would stay an extra few days.