What I Love About This Group

[Guest guest]

I've now read the back and forth emails about Heidi's posting below.  This is

what I love about this discussion board - there are so many varying thoughts,

reports, opinions and paths forward.  Before all of us emotionally charged

parents (that's me too given how much fear this syndrome creates) get too crazy

on each other, let me just say you're ALL terrific for sharing so passionately

your thoughts, experiences and conclusions.  There are days I read the board and

get freaked out by a case that sounds so scary or one that comes back after

years of remission.  There are days I read posts that inspire me and give me

eternal hope.  There are days I just say, WOW, some of these Doctors out there

are really scary and clueless.  I guess I'm sending this note just to calm down

everyone and make sure we don't get into some email flaming war here.  Whether

you think your child has or something else, whether cimetidine or

singulair work for

you, or whether you're a prednisone fan or not, or whether T & A is the answer

for you, let's just all keep sharing our thoughts.  There is great strength in

numbers and the sharing of all of this knowledge and experience among us makes

us all better off.  I, for one, would wish that some of the leading

doctors and researchers would sign up for this board - they'd learn a lot about

what we're all experiencing and what we're doing about it.  Thank you Heidi for

sharing your story and the website information on .  Thanks to the others

who gave their thoughts on T & A.  It's a great thing you do for us Fran.  May all

of us have a Happy New Year and may all of our children be well and thrive in

2009.  God Bless.

 Regards,

Nick Handrinos

[Guest guest]

Nick,

Thank you for your post and perspective.   You always have a very reasonable and

calm approach.  I appreciate that.  I, myself, have battled amazing mood swings

and post-partum depression while trying to care for a newborn and a child with

.  So, over the past few years we had to think long and hard on Dani's

case.

 

Fran, as always, thank you for this group --- it has really been a good support

group and grounding point for me.  When I thought I would lose it most... I had

others to turn to for a shoulder to cry on or a reality check that I was not

alone.

 

I have become very pro-T & A, but only when  it is warranted.  We sought several

opinions and counseling sessions on what to do for our case.  I still read

occasional emails on this group just to see if there are others at the point I

was.

 

In the end, everyone needs to do what the caregivers are comfortable with and

think is the best for their situation and their child.  There just aren't enough

hard and fast rules about yet either. 

 

le had classic symptoms, with the exception that her fevers weren't

clockwork, but very frequent and within a range of a week or two.  Her throat

was described to me as " strep-like " .  Her tonsils were swollen, but never strep

positive.  She had blood work run about 3 times, and everything ruled out that

the pediatric immunologist thought was necessary (RA, Chrons, etc.).  We did not

do genetic testing.

 

We have been fortunate - she has been very healthy for over a year.  She has had

two viruses with a low fever since, but when other family members have been

sick, as well.  No other symptoms that we have thought were - occasionally

cranky ... but isn't every 3 year old cranky on occasion?  She has now gone

almost 14 months without a fever and we are so happy.  If it returns, we

will deal with it at that time, but for us, it was the right decision.  She

fevered from about 7 months until about 29 months and her fevers were extremely

high (108 was the highest, with 105-106 every month), lasted 4-7 days without

Prednisone, and bad behavior issues with too much Prednisone.  So... for us, a

T & A seemed an okay option to try.  It has worked and requires sooooo much less

Motrin and Tylenol.

 

Heidi - I think you are right that some people are jumping to conclusions too

soon and looking for the instant cure.  Some kids just get sick a lot for a

period of time -- my son went through it for a few months... but it definitely

wasn't .  But for others that truly think after a period of time that it is

and have done a reasonable (but not excessive) level of testing - I

encourage them to consider a T & A discussion with 2-3 specialists and/or

pediatricians who are knowledgeable about .  It scares me about some of the

testing that parents will go through, but not consider a T & A --- spinal taps,

bone marrow testing, etc...

 

Anyway... enough of my 2 cents for tonight and this year!

 

Take care everyone.  If you have any additional questions for us or our case -

feel free to email me directly.

 

Ginger, Atlanta/Alpharetta

le - 3 1/2 years (fevers from 7 months, diagnosed at 15 months, last fever

on 11/16/07, T & A on 12/10/07)

Jay - almost 20 months - no