10 year old W/

[Guest guest]

I have not posted in years but keep up with the posts. Just had to

post on the 1st day back to school. My daughter is 10 years 10 mos.

old. She has had since she was 7 mos. old. It slowed down when

she was between the years of 5-7. So much that I thought she was out

growing it. Her 3rd grade year in school it started to pick up again

and she started getting it every month again. A lot of times it would

fall on long weekends or vacation weeks so she would not miss a lot

of school but last year(4th grade) she was out 3-5 days a month

because of . She mentioned 2 days ago a canker sore in her

mouth and not feeling too well... 1st day of school today and her

throat is killing her. The fever will be here by tonight.

Montrin/Tylenol helps but only to a point. It does not completly help

her feel better to get her to school. We just went back to the

specilist 2 months ago and are trying prednisone for fevers. Tried

it last month.... got rid of fever but she did not " feel " better.

Everything else still hurt. So we will see. She is so tired from all

of this. Missing soccer games, being home... it is starting to effect

school work when she misses school. I just thought I would put this

post out there. I have felt alone with an " older " child with

lately. But have noticed a few postings recently. I have no answers

for her. I feel bad when those droopy eyes look at me Thanks for

listening, w/ Mackenzie girl

[Guest guest]

hi there your not alone. i don't post much either anymore because everyone

has babies, and it's hard to tell a new Mom something when they just don't' want

to believe or understand. sorry moms love your posts your all great moms who

want just the best. anyway when you have an older child you feel more alone.

you know what they have been threw but we face the unknown. there's no one

to tell us what's going to happen tomorrow not even the DR's. for the last

month and a half my son has been at a never-ending sadness and anger and crying.

he has been on colchicine sense last November and it has helped stop the

temps but all other stuff except sore throat is still coming it use to be before

he would have an episode he would get real moody and upset then he would get a

temp and he would after he felt better he would be his happy self for a few

days and then start all over again. sometimes i was happy to see the temp come

so he would be normal again. but lately it like it just keeps building I'm

worried he going to have a breakdown. he has a check up tomorrow I'm going to

ask the dr. what to do. maybe he needs to have an episode to get back to

normal. school is another story. so many problems. and one that really bothers

me

is that he is loosing his short term memory. when he was in the forth grade he

had 40% memory and last year when they tested him he had 7% memory. the

specialist at the school said that this was the first time in her 40 years

teaching

that a child has slipped backwards. i know that pf syndromes get into the

head but i don't want my child with altimers or something at 14. any sorry for

rambling on good luck to you. char

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[Guest guest]

:

 

Hang in there, we feel for you and Mackenzie.  I recall reading some posts that

suggested returning as kids were approaching puberty or as they were

reaching ages of growth spurts.  Not sure there's ANY medical evidence to back

this up, but it might make some intuitive sense as the immune system and body

are trying to mature and figure this thing out.

Regards,

Nick Handrinos

[Guest guest]

, hang in there! We all know how hard it is but all you can do is keep one

foot in front of the other and keep going. 10 years is a long time to have lived

with this so I sympathize with you and Mackenzie. Has she ever gone through

genetic testing to rule out one of the genetic disorders? It might be something

to consider. Like I said, hang in there, we are here with you.

[Guest guest]

Wow, Char! Your message really hit home for me. The part where you talk about

reading the posts from the moms of the babies, and then being in the situation

of having one of the oldest kids here...not knowing where our kids are headed,

what their futures hold becuse your son at 14 and my PJ at 15, are almost the

oldest kids here, the ground breakers. I almost feel sometimes that while I can

commiserate with other parents, I cant really get any help here, any guidance

because no one else has been where we are.

 

Also, the changes in memory, brain power. I;ve never been sure of what to

attribute it to but I also feel that all of tghose years of fever have had an

effect on PJ's brain. Granted, he is still a very bright kid but he is not what

he was when he was younger. Somewhere along the way, he lost something.

A pharmacist I used to work with used to always tell me that no matter what,

when he had an episode, I had to control that fever. She would emphasize that a

temp that high is doing damage. A fever in a normal childs life is no big deal,

every kid gets them. But these kids who get them every month, for years on end,

I dont honestly believe that they can get through this unscathed. That

pharmacist would always say that as we dealt with episodes, with the symptoms we

saw on the outside, those fevers were doing damage to the inside. Cooking that

brain, those vital organs. She used to scare me but I know that she just wanted

me to be aware.

Anyway, enough rambling, just wanted to let you know that I can relate!

 

Pat Bombardier

[Guest guest]

thanks Pat. we went to the dr. today and he said fonz was definitely

depressed. but not to the point where he will hurt someone or himself. he said

that he

is so tired of being sick and alone in this. meaning no other kids to relate

to is hard he is going to need counseling and to take him to the skate park

as much as i can to build some happiness in him. so sad. thanks and good luck

to you . char

**************

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[Guest guest]

thanks Pat. we went to the dr. today and he said fonz was definitely

depressed. but not to the point where he will hurt someone or himself. he said

that he

is so tired of being sick and alone in this. meaning no other kids to relate

to is hard he is going to need counseling and to take him to the skate park

as much as i can to build some happiness in him. so sad. thanks and good luck

to you . char

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[Guest guest]

HI,

My name is Suzanne and my 7 year old son was diagnosed by our Disease and Immune

Specialties at Children's Hospital last year. For 13 months straight it was

the same 3.5 weeks, Tues. roughly in early evening he come down with a very

high temp. Usually 104-105 last for 2-3days... Very tired one day prior and

extreme white sacks on swollen throat. But by the 5th day all symptoms would

be gone with no treatment other than how to control temps...But then a simple

miracle happened and no " cycles " for 3 months!!!!! We were so excited but this

month he started up again almost to the " tee " Has this happened to you or to

anyone that there was a brief stopping?????? We're very discouraged, since he

just started back into school...It makes us wonder if possible the stress of

school starting again could have jump started him down this gloom road of

sickness....

If anyone can shed light or have shared a similar experience we would greatly

appreciate it.....Worried all over again!!!!!!!

Thank you for reading!

Suzanne

[Guest guest]

Hello everyone,

 

My name is Casie and I'm new to the group.  I have a 7 year old daughter who was

diagnosed at age 3 with at Children's Hospital in Madera.  I'm glad that I

found other parents with children DX with this.  My daughter started out at 1

month old with her first fever.  From there she has been cycling every 4 to 6

weeks,  If she gets off the schedule and lets say she goes 8 weeks then I have

noticed the next episode Is more severe, higher temp, harder to control, and

episode lasts longer.  We have had the same Peds since birth. I read on one of

the posting that their child's condition started happen after their

vaccinations.  My daughter only had the standard vaccinations at birth,

Hepatitis and Vitamin k, and she started with fevers at 1 month old.  With her

first fever she had to get blood work and WBC was low which indicated av viral

infection.  She was such a cranky baby and would cry  alot alot alot. Finally

after 2 yrs of this,

frequent fevers, not sleeping well, and being a miserable baby, our Peds sent

us to Children's to see a Rheumatologist.  I took a copy of her medical records

and after reading the chart and made it click how often she is sick.  My

daughters MD's suggested prednisone, cimetidine, and colchicine.  I refused to

put her on any of these medications because I was told that it may or not work. 

Since they ruled out cancer and etc I decided we would just deal with it.  I'm

afraid to give her to much medications because she already gets alot of Tylenol

and Motrin.  Like many of your children she feels warmer than usual and starts

complaining of joint pains and then i know the fever is coming.  She gets very

painful ulcers in her mouth (inside lip, tongue, on the gums, and something in

the back of her throat), swollen glands (somethings golf ball size), sore

throat, and on occasion vomiting especially with a high fever,  She has had

Rosella 3 times,  I

was told you usually only get it once.  She is very sensitive and reacts to a

lot of things.  Example, a mosquito turns into cellulitis.  She has had to be on

antibiotics quite a few times and has had a severe reaction to sulfa drugs and

hives with cephlosporins.  I'm afraid to give her any new medications because

with the first reaction she had to go on steroids and it took almost 3 months

for her skin to clear. She was so miserable during this time, I thought I was

going to lose my mind.  It is hard to see you child suffering and there is not

much you can do.  I can go on and on with Caitlin stories,  But when she is well

she is a normal child. I have also considered a T & A but would like to know if

anyone else has tried removing the tonsil es and did it work?

Casie G

[Guest guest]

My daughter is 20 and has suffered with this all her life. She seemed

to have slowed down on the frequency of these episodes over the last

couple of years. But she is currently suffering her 3rd attack in 3

months.

The only thing shes been doing differently lately is going to the

gym. 3 times a week areobic excerise, treadmill, bike, etc. Maybe

this is overworking her system and bringing on fever attacks?

Apart from these attacks she is a very intelligent healthy girl.

These frequent fevers have done no damage to her over the years. She

is working now so all this sick time she has to take wont go down to

well with her employers.

We are not seeing any doctors anymore, just living with it. We

attended hospital for 10 years and never found a cure in that time.

Regards

Lee

England

[Guest guest]

Suzanne... both my children suffer with . My son now 18 seems to

have grown out if it about 5 years ago. My daughter 20, still gets

it. And from my experience, Stress or excitement definitely brings on

a fever attack. Christmas, birthdays, vacations, First day of school

all can trigger episodes.

Best regards

[Guest guest]

Hi Casie,

Welcome, you have found a great support network here and will probably learn

more information that any doctor can tell you. I know I certainly have.

If you search through the archives you will find that dozens of parents have

found success with a T & A and I suspect many of them have moved away from this

board because their lives have returned to a normal and are no longer living

with the chaos of .

My son has been fevering since he was approx 9 mos old. He started with just

fevers and progressively got more and more symptoms. Prior to surgery he

started to get horrible swollen glands, sore throats (sometimes with puss,

sometimes with ulcers on the tonsils which seemed REALLY painful), and I suspect

some stomach and joint pain considering that he would curl himself into a ball

and scream. We went around to doctor after doctor including a Rheumatolgist at

NIH that wanted us to try colchicine (my son at that time was just over 18mos

old). At the same time I was reading lots of compelling studies on the positive

outcomes of T & A and reading the success stories here. For me, daily medication

or steroids would have only been a very last resort. I had a hard enough time

just giving my baby galons of Motrin and Tylenol let alone steroids and other

drugs. I had also heard of adults complain about miserable side effects of

colchicine, so that was not an option until he could articulate how it made him

feel.

For us the surgery really became a no brainer in light of all of the supporting

medical evidence and had also tested negative for all of the known

genetic fever disorders (testing I would recommend to ALL people suffering from

this). Our immunologist was against the T & A and the Rheumatologist luke warm at

best. I have read the medical studies myself and was not in agreement with

their lack of support, so I ditched them and moved on. At this point I had a

new ped who had had a few patients and she recommended me to the best

pediatric ENT in my area.

I met with this ENT (who again ONLY sees children) and he knew more about

than the NIH doctor, immunologist, and any other doctor we had dragged our son

to. He knew all of the treatment options and was well versed on the latest

medical studies. He had quite a few cases and from his experience after

T & A all had be " cured " at least for now. There is no long term tracking to

confirm if this cure will last forever or if the fevers come back after a few

years. From my experience ENTs are the only ones who are up on the current

findings.

We went into surgery at the end of May this year. The ENT came out of the

surgery room after 15min and my heart sunk because I thought something must have

went wrong. Why was he out so fast? Well it turns out he was done and he was

reporting his findings! He removed the tonsils, adenoids, and inserted ear

tubes all in 15min and that had only lost mere drops of blood, about as

much as one would lose from scraping a knee. The ENT said his tonsils were

rotten and looks like those of a much older child with all of the scarring.

My son was just 2 weeks past his second birthday when he had surgery. I'm happy

to report that we are now entering our 4th month fever free! Our son has gained

weight and has gone through a shocking (yes shocking!) change. He has more

energy, sleeps way less (prior to surgery he would sleep like an infant), his

dark circles around his eyes have gone, and he has not even had a runny nose

since May-not even a hit of illness and he is in daycare exposed to many germs.

There is not a single day that goes by that I am not immensely grateful to have

a healthy little boy. In an ironic twist this experience has been a personal

blessing for me. I am so much more appreciative of the simple joys and happy

moments, now that we have more happy times than sick times. I treasure

everything about my little boy, even the temper tantrums he now has the energy

to throw. This experience has made me more relaxed and patient about other

things in my life because as long as you have your health and love of your

family really there is nothing more to want out of life. Even if these fevers

return one day, which I am fully aware that might happen, I am treasuring this

time and basking in the glow that my little guy shines on my life.

Hang in There!

Mom2

Born 5/11/06

fevering since 9mos

T & A in May 2008 fever free since and praying it stays that way!

[Guest guest]

Hi there. Stress good or bad is a major factor in the way my son feels each

day. so yes every year we have experienced back to school episodes. good luck

..

[Guest guest]

Hi Lee I can't remember if you said that she was tested for fmf. if so did

they try her on colchicine? thanks char.

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[Guest guest]

.  Such an outstanding note.  So, so true on putting things into

perspective.  Amen to that!  All the best.

 Regards,

Nick Handrinos

[Guest guest]

Suzanne,

 

This has happened to us.  My son Landon who will be 5 in Oct. has been fevering

since he was a baby and was diagnosed at 3 years old.  We are on a two week

cycle, so every other Friday we are sick.  Last year Landon went from the end

of Aug. till the end of Dec. with no episodes.  We were over-joyed, thought he

out grew it and did so at a young age!!!  My grandmother passed away suddenly in

Dec.(who we were very close to) and the very next day Landon had a fever. At

first I thought it was a virus but it wasn't, the episodes came back with a

vengance.  I do believe stress can bring it out.  I have heard this from some

doctors and other parents on here have also noticed it.  Good luck to you, I

can't imagine how difficult this must be for an older child to deal with. 

 

Take Care,

Jackie

[Guest guest]

Hi Char,

We were tested for everything. No never took colchicine. Never heard

of it till coming on here.

I also suffered with . Im nearly 50 years old. I had very

frequent fevers as a child. I had my tonsils removed age 7. And this

did slow down the frequency of fever episodes to only once or twice a

year. Then age 17 to 25 the episodes increased to every 7 weeks

exactly. Then I took long term antibiotic treatment, oxytetracycline,

for a skin condition and this has stopped the fevers completely.

I take it daily and have done for 25 years. Unfortunately children

cant take it till about 15 years old because it affects growing teeth

and bones.

My daughter is currently taking oxytetracyline but its not working

for her.

The only difference between myself and my daughter is she still has

her tonsils.

We are going to see about her having T & A next week.

Does colchicine work?

Lee

England

[Guest guest]

,

Very well said! We received about the same reaction from our

immunologist. We also worried about the gallons of drugs we were

pouring into such a little girl. We literally bought Motrin and Tylenol

on every trip to the store. Just the other day, I needed some motrin

for my teething son and we were out - we were never out with Dani

because we knew we needed it urgently if a fever cropped up.

Her tonsils were actually fairly normal, but her ears were rotten - she

got her second set of tubes at the same time as the T & A.

She's been fever free for longer than 9 months!

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 15 months old

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[Guest guest]

Suzanne,

My 4 year old daughter is in the process of being diagnosed with

. I have also noticed that we have brief periods of time

without fevers, usually in the summer and then they start back during

the school year! She is just starting preschool but I am a teacher

so our summers are usually very relaxing then in the fall she is back

to daycare again. I too wondered if the stress of getting back to

school/daycare had something to do with the return of the fevers.

Any one else see this with their kids?

Suzi

[Guest guest]

i guess it works to slow the fevers but my son is still showing all other

signs. but when the fever hits it hits hard and fast. we are both just tired of

all of it. my Mom has been sick all her life like my son. and myself i use

to get sick once a year with all the normal things dr. do to try to guess

what's wrong. they stopped about seventeen years ago. but lately the aches and

pains seem to be coming back. but i know it's because this summer has been so

stressful you know with being 14 and just not well. its hard thanks char.

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[Guest guest]

,

This message came at the perfect time.  Landon is having the T & A on Monday,

needless to say I am very nervous.  We saw our ped. yesterday and could tell he

is not in agreement on our decision to do this.  He said a T & A is not a simple

surgery (which not sure why he said that since I did not say that) and that

Landon's tonsils look totally fine.  So frustrating!  I started to rattle off

the studies and the success stories from this board and it did not seem to

matter to him.  I was feeling down and wondering if we were making the right

choice, I know deep down we are.  I can't wait years for this to go away while

pumping poison into this tiny body.  I think some doctors don't understand this

at all and the toll it takes on these kids.  I figure if the T & A does not work

at least I know that we tried everything.  So thank you, you took my doubts

away.

 

Jackie

[Guest guest]

Suzanne, that is my son PJ's same schedule. He is fine all through the summer

but come the second week of September, without fail, every year for 15

years...it all starts again.

 

Pat Bombardier

[Guest guest]

,

 

Thanks for your response. I hope you have success with the T & A and I hope your

son remains fever free.

 

Casie

[Guest guest]

,

 

Thanks for your response. I hope you have success with the T & A and I hope your

son remains fever free.

 

Casie

[Guest guest]

,

 

Thanks for your response. I hope you have success with the T & A and I hope your

son remains fever free.

 

Casie