Re: cycled for two episodes after looooong break

[Guest guest]

The same thing seems to be happening with my son. He will be 11 next month.

The fevers seemed to stop for about two years. Then the last two years he had

two back to back epsidoes and then that was it. He just had two now and I'm

so worried that they will just keep coming every month. He can at least take

predsione but I hate to have to give it to him. We also didn't have any

testing done. I think because we started so long ago things have changed now.

All I can say is hopefully this won't start back up again.

Sue

mother of

[Guest guest]

>

> Hey to anyone who is listening! My daughter Faith who is 91/2 had

> almost completely quit cycling for about two years or so, (with a

> few estranged episodes here and there) Has had two back to back

> cycles with unbelievable stomach pain. We went to the doctor

today

> and they did strep test and stomach x-ray with nothing showing

up.

> We are back to rotating tylenol and motrin every two hours with a

> little girl who is absolutely miserable and a mom who is worried

> sick that this thing is starting back. Has this happened to

anyone

> else.

>

> Fran,

> we have never had genetic testing done because of Faith being

> adopted. Do you have to involve birth families at all. I'm just

> trying to decide what to do if this is starting up again. It

really

> seems that everybody that is going to NIH is really being sub-

> categorized and not just being left under the umbrella.

Just

> need some advice and encouraging words. I'm not sure I can handle

> all of this again. I thought it was all over and my husband just

> thinks I'm paranoid, but in the back of my head I have always

> thought FMF with her because of her background and symptoms,

> especially the stomach pain. I know I am rattling and have not

> posted in a really long time. But, i keep up and read all the

post

> by email. You are just so knowledgable I just wanted to here from

> you. I don't know if you even remember us, but Faith started at

> about three months of aged and cycled until about 6 on a regular

> basis then became sporadic. We were diagnosed at Vanderbilt

> when she was 3 and then sent back at 5 and can't do steroids and

> cimitedine did not work. We still have tonsils. I'm just very

> worried. HELP!!!!

>

,

Any suggestions on coping with an infant with these cyclic

fevers??? Our daughter is 8 months old and is so miserable during

these episodes. She is totally unconsolable, cries uncontrollably,

has chills that turn her hands, feet and lips purplish and seems to

be in extreme pain- we're guessing her stomach. We've just begun

the testing now but our ped is unfamiliar with any of the fever

syndromes and it's a slow go. We're in northern VA and hope to get

in NIH. That seems to be the place to go for help. How did keep

your sanity? We only had 8 days between her last fevers. Did any

of your daughters' fevers seem stress induced? Thanks for any

advice!!! After the past two nights, I'll take anything!!!!

, mom to Riley- 8 months, Zack- 23 mo., Connor- 4 yrs

[Guest guest]

My son had his first fever at 1 month old and then monthly after 3

months of age. We removed his tonsils at age 2 1/2 and his symptoms

were greatly reduced for close to 3 years. When he started

kindergarten, they returned. I know exactly how you feel. I could

not believe it - I thought it was over and now it was back - exactly

as before. His cycles have been back for a year now and we are part

of the protocol at NIH. We had our first visit in August and we

hope to find answers there - especially since my daughter starting

cycling with fevers in July 2005 and in June 2006 was diagnosed

under the category. They are both part of the protocol. Try

to get into NIH. They are the most knowledgable with PFS disorders.

I am so sorry to hear about Faith and I know how incredibly

discouraged and disappointed you are.

Prayers to everyone,

Tara

Connecticut

Has this happened to anyone

> else.

[Guest guest]

,

My daughter Rebekah who is 9 1/2 now, did the same thing. She went

from the time she was 5 till 8, with no episodes. Then at 8 started up

again, had them for 8 months straight, then seemed to stop again. She

has just started up again, today to be exact. We think she has one

last month too, but it was very minor. I think there have been a very

other cases in this group too of long breaks.

Paris

Mom to Rebekah age 91/2

>

> Hey to anyone who is listening! My daughter Faith who is 91/2 had

> almost completely quit cycling for about two years or so, (with a

> few estranged episodes here and there) Has had two back to back

> cycles with unbelievable stomach pain. We went to the doctor today

> and they did strep test and stomach x-ray with nothing showing up.

> We are back to rotating tylenol and motrin every two hours with a

> little girl who is absolutely miserable and a mom who is worried

> sick that this thing is starting back. Has this happened to anyone

> else.

>

> Fran,

> we have never had genetic testing done because of Faith being

> adopted. Do you have to involve birth families at all. I'm just

> trying to decide what to do if this is starting up again. It really

> seems that everybody that is going to NIH is really being sub-

> categorized and not just being left under the umbrella. Just

> need some advice and encouraging words. I'm not sure I can handle

> all of this again. I thought it was all over and my husband just

> thinks I'm paranoid, but in the back of my head I have always

> thought FMF with her because of her background and symptoms,

> especially the stomach pain. I know I am rattling and have not

> posted in a really long time. But, i keep up and read all the post

> by email. You are just so knowledgable I just wanted to here from

> you. I don't know if you even remember us, but Faith started at

> about three months of aged and cycled until about 6 on a regular

> basis then became sporadic. We were diagnosed at Vanderbilt

> when she was 3 and then sent back at 5 and can't do steroids and

> cimitedine did not work. We still have tonsils. I'm just very

> worried. HELP!!!!

>

[Guest guest]

I just wanted to pass along this info. that s ID

doctor told me about when (not sure if this

includes ALL PFS's) spikes...he said there were 3 ages

when the fevers spike...5-6 months of age, around

puberty (which is when my son started having fevers)

and around late teens.

I have read that some of your children have not had

fevers for a couple of years and now they have started

again. I also noticed that their ages were 9-ll years

of age. Interesting to me that the ages fall into the

puberty range. Maybe that is why they are starting

again with episodes.

Cheri,mom to with

--- SSDWeb@... wrote:

> The same thing seems to be happening with my son. He

> will be 11 next month.

> The fevers seemed to stop for about two years. Then

> the last two years he had

> two back to back epsidoes and then that was it. He

> just had two now and I'm

> so worried that they will just keep coming every

> month. He can at least take

> predsione but I hate to have to give it to him. We

> also didn't have any

> testing done. I think because we started so long ago

> things have changed now.

>

> All I can say is hopefully this won't start back up

> again.

>

> Sue

> mother of

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

;

I could not help to respond I live in Fredericksburg ( Spotsylvania) and my

son age 5 years is now going through testing he started fevering 5 months ago.

Who is your doctor?? I switch to Dr son just a few weeks ago and he sent

us to Charlottesville to see a rheumatologist Dr Saulsbury, he isn't quite ready

to say that Tyler has because he is older and does not have ulcers but he

cannot give us an answer on what it is. He did do blood work last week and he

called yesterday to say that he found no genetic markings to pin point waht he

had and he wants us to come back after three more cycles. Tyler is healthy in

between cycles but every 4 weeks he gets a fever for four days and will not eat.

When I met with my son's school nurse to explain Tyler's illness she started to

shake her head and said their is a little girl in second grade that has

and she had her mother call me. I thought this was very rare. What is the

chances of three kids in the same

area having this. I hope to hear from you soon!!! Thanks

Kim (mom)

Tyler 5

Keri 10

le 12

jmaloney0802 <jmal0802@...> wrote:

>

> , I would have your doctor contact someone at NIH to see

what they could recommend until you could get the ball rolling for

the acceptance process. You might be looking at a few months to get

her seen. My son has been diagnosed with Clinical FMF by NIH, FMF

being one of the genetic fever disorders and the stomache pain can

be quite severe but I don't know what they would do with a child so

young.

>

> Where do you live in northern Va.? I live in Manassas. Our

pediatrician is Dr. Giancola. He's good for general pediatrics

but as far as FMF is concerned, he's clueless and while he doesn't

seem anxious to educate himself on the disease, he is very willing

to do anything that NIH asks him to do! He is a big step up from the

last pediatrician we used!

>

> Pat, mom to PJ, 13 year old, Clinical FMF, Periodic fevers since

age 6 months

Hi, Pat!

We live in Fredericksburg but have our house for sale- long story

but can sum it up to all of Riley's hospital admissions, 2 other

little ones at home, hubby often out of town and nearest family in

NH and GA. I love our pediatrician and feel that she is researching

and learning as we go. She's the one that first mentioned NIH but I

have printed off the info from this site to take with us tomorrow.

We have an appt in the morning for 6 month wellness shots- we're a

bit behind. Did you son receive all his immunizations on time? We

just finished a fever yesterday and am afraid shots will trigger

another! Thanks for your email!

, mom to Riley (still testing for - 8 months old),

Connor and Zack

>

>

> ---------------------------------

> Do you ?

> Everyone is raving about the all-new .

>

>

[Guest guest]

Kim,

Just to let you know, my Sami didn't start until she was 5.

Trish

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

> >

> > , I would have your doctor contact someone at NIH to see

> what they could recommend until you could get the ball rolling for

> the acceptance process. You might be looking at a few months to

get

> her seen. My son has been diagnosed with Clinical FMF by NIH, FMF

> being one of the genetic fever disorders and the stomache pain can

> be quite severe but I don't know what they would do with a child

so

> young.

> >

> > Where do you live in northern Va.? I live in Manassas. Our

> pediatrician is Dr. Giancola. He's good for general

pediatrics

> but as far as FMF is concerned, he's clueless and while he doesn't

> seem anxious to educate himself on the disease, he is very willing

> to do anything that NIH asks him to do! He is a big step up from

the

> last pediatrician we used!

> >

> > Pat, mom to PJ, 13 year old, Clinical FMF, Periodic fevers since

> age 6 months

>

> Hi, Pat!

> We live in Fredericksburg but have our house for sale- long story

> but can sum it up to all of Riley's hospital admissions, 2 other

> little ones at home, hubby often out of town and nearest family in

> NH and GA. I love our pediatrician and feel that she is

researching

> and learning as we go. She's the one that first mentioned NIH but

I

> have printed off the info from this site to take with us tomorrow.

> We have an appt in the morning for 6 month wellness shots- we're a

> bit behind. Did you son receive all his immunizations on time? We

> just finished a fever yesterday and am afraid shots will trigger

> another! Thanks for your email!

>

> , mom to Riley (still testing for - 8 months old),

> Connor and Zack

> >

> >

> > ---------------------------------

> > Do you ?

> > Everyone is raving about the all-new .

> >

> >

[Guest guest]

;

We had a house built out on acreage ( my husband wanted out of a

subdivision) but we use to live in Fox Point and my kids went to Courtland

Elem. and now they go to Livingston Elem. Tyler is small for his age he is only

37 lbs and will be 6 yrs old next week. He has always been in the 5-10

percentile in weight. So it is hard when he gets the fevers and will not eat.

We have a cycle do coming this weekend so he will probably be sick for his

birthday and if the fever cycle stays he will be fevering for Halloween but I

think we are now getting use to the cycles and going to try to make life as

normal as we can. I would love to meet some time. Talk to you soon.

Kim

Tyler 5 ()

Ker 10

le12

jmaloney0802 <jmal0802@...> wrote:

> >

> > , I would have your doctor contact someone at NIH to see

> what they could recommend until you could get the ball rolling for

> the acceptance process. You might be looking at a few months to

get

> her seen. My son has been diagnosed with Clinical FMF by NIH, FMF

> being one of the genetic fever disorders and the stomache pain can

> be quite severe but I don't know what they would do with a child

so

> young.

> >

> > Where do you live in northern Va.? I live in Manassas. Our

> pediatrician is Dr. Giancola. He's good for general

pediatrics

> but as far as FMF is concerned, he's clueless and while he doesn't

> seem anxious to educate himself on the disease, he is very willing

> to do anything that NIH asks him to do! He is a big step up from

the

> last pediatrician we used!

> >

> > Pat, mom to PJ, 13 year old, Clinical FMF, Periodic fevers since

> age 6 months

>

> Hi, Pat!

> We live in Fredericksburg but have our house for sale- long story

> but can sum it up to all of Riley's hospital admissions, 2 other

> little ones at home, hubby often out of town and nearest family in

> NH and GA. I love our pediatrician and feel that she is

researching

> and learning as we go. She's the one that first mentioned NIH but

I

> have printed off the info from this site to take with us tomorrow.

> We have an appt in the morning for 6 month wellness shots- we're a

> bit behind. Did you son receive all his immunizations on time? We

> just finished a fever yesterday and am afraid shots will trigger

> another! Thanks for your email!

>

> , mom to Riley (still testing for - 8 months old),

> Connor and Zack

> >

> >

> > ---------------------------------

> > Do you ?

> > Everyone is raving about the all-new .

> >

> >

[Guest guest]

> > >

> > > , I would have your doctor contact someone at NIH to

see

> > what they could recommend until you could get the ball rolling

for

> > the acceptance process. You might be looking at a few months to

> get

> > her seen. My son has been diagnosed with Clinical FMF by NIH,

FMF

> > being one of the genetic fever disorders and the stomache pain

can

> > be quite severe but I don't know what they would do with a child

> so

> > young.

> > >

> > > Where do you live in northern Va.? I live in Manassas. Our

> > pediatrician is Dr. Giancola. He's good for general

> pediatrics

> > but as far as FMF is concerned, he's clueless and while he

doesn't

> > seem anxious to educate himself on the disease, he is very

willing

> > to do anything that NIH asks him to do! He is a big step up from

> the

> > last pediatrician we used!

> > >

> > > Pat, mom to PJ, 13 year old, Clinical FMF, Periodic fevers

since

> > age 6 months

> >

> > Hi, Pat!

> > We live in Fredericksburg but have our house for sale- long

story

> > but can sum it up to all of Riley's hospital admissions, 2 other

> > little ones at home, hubby often out of town and nearest family

in

> > NH and GA. I love our pediatrician and feel that she is

> researching

> > and learning as we go. She's the one that first mentioned NIH

but

> I

> > have printed off the info from this site to take with us

tomorrow.

> > We have an appt in the morning for 6 month wellness shots- we're

a

> > bit behind. Did you son receive all his immunizations on time?

We

> > just finished a fever yesterday and am afraid shots will trigger

> > another! Thanks for your email!

> >

> > , mom to Riley (still testing for - 8 months old),

> > Connor and Zack

> > >

> > >

> > > ---------------------------------

> > > Do you ?

> > > Everyone is raving about the all-new .

> > >

> > >