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Report post · May 8, 2009

Welcome! You have found a great group to pull some valuable info.

As far as the T & A goes, I would venture to say dozens and dozens of people on

this site alone have gone this route, with very few people not getting permanant

or near permanant results. I think alot of the people who had the T & A and no

longer have fevers, rarely post. There certainly are people who it did not work

for, but I certainly would not categorize that as the overwheming majority, or

even close to it.

My son, who is turning 3 on May 11 had his T & A back on May 19, 2008 and has been

fever & symptom free since-we are excited to celebrate a year of no ! We

had one virus (I think) back in February that caused a really high fever, but

other than that, this was the only fever he has experienced.

The T & A not only cured the fevers, but my son experienced a host of other

benefits, included a huge and almost immediate increase in energy, lower sleep

requirements, change in skin coloring (from pale with dark circles to a healthy

looking flush), and an increase in appetite and weight gain. I can think of no

downside to the surgery, other than an expected recovery period.

Good Luck!

Report post · May 8, 2009

Allegan, who makes the Lap-Band, has a good Spanish booklet. Cobntact your rep or go on their website.

June

new member

Hello Everyone,

My name is Yvette and I just recently began working with gastric bypass

and Lap Band patients. We are working with a large hispanic population.

I'm in the process of translating assessment forms and nutrition education info for both procedures.

If anyone has any forms or nutrition information in spanish it would be a big help.

Thanks,

Yvette Salcie RD

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

Report post · May 8, 2009

Hi Yvette... I am a dietitian from Venezuela and i could help you with the

translation...just let me know anything you need and we can work it out....

Jannine

>

> Hello Everyone,

>

> My name is Yvette and I just recently began working with gastric bypass

> and Lap Band patients. We are working with a large hispanic population.

> I'm in the process of translating assessment forms and nutrition education

info for both procedures.

> If anyone has any forms or nutrition information in spanish it would be a big

help.

>

> Thanks,

>

> Yvette Salcie RD

>

Report post · May 9, 2009

Since the literature is unclear regarding tonsilectomy - the studies are small

and results are inconclusive -am wondering why so many people are choosing this

option? I am curious...

>

We go in on monday to schedule a T & A. We, too, could not medicate our child

everyday for years. When talking wiht my family dr (not the Immun.) our family

doc replied to this same question you posted about and said... the studies with

the medication are inconclusize and there are no quarentees medication will work

either. So the choice is try a T & A or years of changing medication.

Report post · May 9, 2009

Thank you so much.

Yvette

From: "jgzaragoza@..." <jgzaragoza@...> Sent: Friday, May 8, 2009 5:53:08 PMSubject: Re: new member

Allegan, who makes the Lap-Band, has a good Spanish booklet. Cobntact your rep or go on their website.June [bariatricNutrition Dietitians] new member

Hello Everyone,

My name is Yvette and I just recently began working with gastric bypass

and Lap Band patients. We are working with a large hispanic population.

I'm in the process of translating assessment forms and nutrition education info for both procedures.

If anyone has any forms or nutrition information in spanish it would be a big help.

Thanks,

Yvette Salcie RD

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

Report post · May 9, 2009

Hello Jannine,

Thank you for offering to help. Do you know any sites that have spanish info on bypass & Lap-Band

procedures?

Yvette

From: jannine2005 <jannine2005@...> Sent: Friday, May 8, 2009 7:34:54 PMSubject: Re: new member

Hi Yvette... I am a dietitian from Venezuela and i could help you with the translation. ..just let me know anything you need and we can work it out....Jannine>> Hello Everyone,> > My name is Yvette and I just recently began working with gastric bypass> and Lap Band patients. We are working with a large hispanic population.> I'm in the process of translating assessment forms and nutrition education info for both procedures.> If anyone has any forms or nutrition information in spanish it would be a big help.> > Thanks,> > Yvette Salcie RD>

Report post · May 9, 2009

Hi - I also did not feel that keeping my twin boys and medication long

term was an option. My boys had their T & A removed almost two weeks ago so I am

keeping my fingers crossed. Both my sister and I along with our mom have or

have had issues with our tonsils. I believe in my heart that there is some

hereditary link to this. Just my thoughts for whatever it's worth.

Good luck!

Sent from my iPhone

Report post · May 9, 2009

Hi - I also did not feel that keeping my twin boys and medication long

term was an option. My boys had their T & A removed almost two weeks ago so I am

keeping my fingers crossed. Both my sister and I along with our mom have or

have had issues with our tonsils. I believe in my heart that there is some

hereditary link to this. Just my thoughts for whatever it's worth.

Good luck!

Sent from my iPhone

Report post · May 9, 2009

For us, even though the studies are small, the results that I read were pretty

conclusive. There are 2 studies that I read and both had a success rate

of around 90%. For us, the results of the medication were very inconclusive and

never studied or written up, so that pretty much was not much of a long term

option for us. Coupled with our own ENT who had a near `100% success rates with

the kids and T & A for us, it was much better than dealing with the fevers.

We've been fever free for a year, so so far it has worked out, just as I had

read.

Report post · May 9, 2009

For us, even though the studies are small, the results that I read were pretty

conclusive. There are 2 studies that I read and both had a success rate

of around 90%. For us, the results of the medication were very inconclusive and

never studied or written up, so that pretty much was not much of a long term

option for us. Coupled with our own ENT who had a near `100% success rates with

the kids and T & A for us, it was much better than dealing with the fevers.

We've been fever free for a year, so so far it has worked out, just as I had

read.

Report post · May 10, 2009

Our son had his T & A 11 days ago because we thought it was best. His fevers

started coming back with multiple doses of steroid. We were at the point where

he was getting 4 fevers in a 2 week period, and a son who said he constantly

hurt.

My BIL also had multiple fevers as a child, which went away after a T & A (Before

had a name) and looking at him, knew that a T & A was a risk we were willing

to try.

Report post · May 10, 2009

Hi ,

Since you essentially diagnosed your daughter and are a RN I think it's safe to

say you probably have a good understanding of the condition and treaments,

but... to add my 2 cents.

As you've read, a number of people here have had success with the T & A. While

it's not 100% guaranteed to work(and there are people here who can testify both

ways), it seems the majority of people on this board have had success with the

surgery so far and therefore offer hope. I think this hope has prompted a number

of people to try this avenue.

In terms of the people who weren't cured by T & A, I remember someone here had the

fevers return said the studies don't follow the kids long enough. If you look at

how long they followed the kids I think it was only about 6 months post op.

There still is so much unknown about this condition(both T & A and med results)

that it's difficult to navigate the options. Between meds, surgery and

outgrowing it... at least there's several different opportunities for us to help

our little ones!

I don't know where you are in your diagnosis but there are several genetic

conditions you can rule out. We got the testing done before we proceeded with

anything because these conditions require different treatments than . Not

everyone gets the testing done, but we did.

After the genetic testing, our Dr told us that the NIH recommends Prednisone and

Cimetidine as the first course of action(not sure which order, though you can

use both at the same time). If those do not work, then you try the T & A. Just to

clarify, the Cimetidine is taken daily, however it is not taken for the rest of

your life. It is a case by case basis where some can stop after 6 months, some

after 12, etc. We decided to try the Cimetidine and have had great success. Our

son is a new child!!!

So, guess I'm just chiming in to say that whatever course of action you take...

there's much unknown, but also several different options to try. In the end, as

long as you get relief from these fevers I think it's enough to say you've

achieved the ultimate goal...

Much luck to you as you navigate your options,

Vivian

Report post · May 10, 2009

Hello,

I feel that it is best to work with other RDs for at least one year. I learned soooo much from other dietitians. I started as an inpatient RD and even though I did not like be an inpatient dietitian I feel it was a very valuable experience that I would have regretted not being a part of.

-Grace Grace L. RD

Diabetes Educator

Richmond, VAWork: (804) 287-7079Mobile: (740) 707-5997

From: couchpatater53 <couchpatater53@...>Subject: New member Date: Sunday, May 10, 2009, 12:41 PM

Hi everyone,My name is and I was just offered a position to work as the sole bariatric dietitian in a readily-expanding outpatient facility.I am seeking some advice from those of you who have been in the field for a while. I am entry-level and from a non-traditional background. I earned my Masters in nutrition with no undergrad courses in nutrition. I am concerned that I may be "specializing" too early in my career and perhaps I should start out in the inpatient setting so I am exposed to more of a variety of nutritional risks. What do you all think? I would appreciate some advice. Another concern of mine is that I would not be able to work and collaborate with a team of dietitians and also would be responsible for finding all of my own CPEs. Any suggestions?Thanks,

Report post · May 10, 2009

Chip has never complained that his stomach hurt and now he is crying about

it all the time. Also, sometimes he has all the symptoms but the fever..

then he'll get a low fever... it was 10 days between episodes last time.

Is this normal?

Report post · May 10, 2009

Chip has never complained that his stomach hurt and now he is crying about

it all the time. Also, sometimes he has all the symptoms but the fever..

then he'll get a low fever... it was 10 days between episodes last time.

Is this normal?

Report post · May 11, 2009

Hi - nothing is 'normal' with I don't think. All the kids seem to

have similarities but all are slightly different. Emma never hat any other

symptoms but the fever. After about a year of fevering she started with joint

pains. Fever patterns varied. We never had a mouth sore or throat involvement,

yet the T & A (March 2008) seems to have resolved all symptoms so far. In fact,

she has not fevered at all since her T & A - even with the worst ear infection or

other viruses that kids pick up. She used to spike fevers with anything prior to

T & A.

Inga

Report post · May 11, 2009

Thanks Inga - it's a double edged sword to have the background to decipher the

medical literature. Since there are no genetic syndromes in the families and I

directed the pediatrician in lab work to test for - it was apparent when the

results came back. Considering what causes PFS in children I am relieved by the

diagnosis, but, there is so much unknown with . It acts as if it is an

infectious disease since it does not appear in a specific geographic area, sex

or race - but - then it behaves like an autoimmune disorder and I believe that

is where the problem lies.

As far as results go Cimetidine has recently been taken off the table as it has

been inconclusive and largely ineffective. I have never considered giving her a

daily medication regardless.

Colchicine has been suggested, but, again - small studies, mixed results.

Prednisone or rather prednisolone (lesser option) is the definitive diagnostic

tool for and giving a child a single dose every 7+ days does not cause HPA

axis suppression (the major concern with steroids and children). The fevers

certainly come more frequently, but, are shorter in duration (hours vs days).

Tonsilectomy studies are small, breif and inconclusive. The medical community is

not even certain what the relationship is and believes many of the success

stories are children that were primarily misdiagnosed with .

More research is needed for certain, but, as long as they believe it is a rare

disorder - the funding will not come.

Thank you for all the responses! I am happy to have found this board and find

comfort in knowing I am not alone in this.

Report post · May 11, 2009