Introduction - New Member

[Guest guest]

,

I've read a few good medical articles by a group in TelAviv; if you

google , you'll find them quickly.

Barb

>

> Hi Everyone:

>

> The doctor has mentioned that my son may have . His fevers

have become more frequent. (the last one was around 10 days apart).

Yesterday the doctor had us try what I assume to be a Prednisone type

drug (this one was an efervesent) and it seemed to eliminate the

fever that started yesterday afternoon overnight.

>

> Previous episodes were responsive to Tylenol except this last

one, where even Motrin was only mildly effective.

>

> My son is two years old now (the fevers started within the past 6-

9 months) and at first the fevers seem to come once every 2-3 months,

then every month, now this short period of time. Yesterday's re-

occurence happened when he attended day care where it is quite warm.

>

> I've already learned quite a bit since I signed up to this group

yesterday.

>

> We live in Israel (outside of Tel Aviv) and would be interested

to know if anyone has any medical connections with regards to this

disease around these parts.

>

> Thanks again,

>

>

>

>

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

> Get the toolbar and be alerted to new email wherever you're

surfing.

>

>

[Guest guest]

Welcome to the group! Isn't it nice to not feel so alone with it all?

Start reading and learning and educating yourself and everyone else

who is around your child - and journaling everything.

Hannah

Aidan - 4 - fevering 26 months

Sid - 6

Fort Worth, TX

-- In , <brianscott36@...> wrote:

>

> Hi Everyone:

>

> The doctor has mentioned that my son may have . His fevers

have become more frequent. (the last one was around 10 days apart).

Yesterday the doctor had us try what I assume to be a Prednisone type

drug (this one was an efervesent) and it seemed to eliminate the

fever that started yesterday afternoon overnight.

>

> Previous episodes were responsive to Tylenol except this last

one, where even Motrin was only mildly effective.

>

> My son is two years old now (the fevers started within the past 6-

9 months) and at first the fevers seem to come once every 2-3 months,

then every month, now this short period of time. Yesterday's re-

occurence happened when he attended day care where it is quite warm.

>

> I've already learned quite a bit since I signed up to this group

yesterday.

>

> We live in Israel (outside of Tel Aviv) and would be interested

to know if anyone has any medical connections with regards to this

disease around these parts.

>

> Thanks again,

>

>

>

>

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

> Get the toolbar and be alerted to new email wherever you're

surfing.

>

>

[Guest guest]

Hi Barb!

Welcome to the group. There have been a couple of people who have

posted that were older - they might be able to shed some light.

My son is 4 - fevering for 2 years - and I've already been thinking of

what the future holds for him. I'm sure it's a huge challenge for you

son to be sick. I too worry about careers etc.

I keep thinking that Aidan should be an artist or something so that he

can keep his own schedule. Nuts I know.

Read on here - lots of information.

Hannah

[Guest guest]

Hi Barb!

Welcome! Did the doctor talk to you about completing the genetic

tests to rule out the other periodic fever disorders? Here is a

great article that describes the different types - i think Fran also

has this in the links section.

http://www.printo.it/pediatric-

rheumatology/information/UK/pdf/13_FEVER_UK.pdf

i know there are a few people here that have older children and there

is a least one adult on the traps/hids group who has hids.

My boys are not , they are clinical hids. They are not expected

to grow out of their periodic fevers and I often do think of the

challenges they will face as they get into high school and college.

I know it's hard for both of you but I'm glad to see he has his

priorities in order! lol

Take care,

>

> Hello all,

>

> I suppose since I just posted a reply, I should introduce myself

> already. I'm Barb, and I have an elderly son. His name is

> and he is 20 years old. We've just seen a pediatric

infectious

> disease doc who knew exactly what was bugging . He's been in a

> cycle for 2 years, a few months with cyclical wicked fevers,

swollen

> glands and sore throat. He'd have 4 or 5 months off, then repeat.

> After being blown off by my pediatrician, I saw his partner who

> thought 12 febrile illnesses in 2 years was a few too many, and she

> thought an ID consult was in order. So voila, now we have a

> diagnosis. He's had a ton of blood work all of which was normal,

> except for his CRP which was elevated during a sick (which is what

we

> call the episodes.) Looking back, he certainly fit the profile.

He

> began with cyclical fevers when he was 4 and had a tonsillectomy

just

> before he turned 5. That kept him healthy for quite a while. I'm

> anxious to get his records now so I can plot his illnesses. I do

> believe somewhere in high school he began to get sick a little more

> frequently, but I don't recall there being any sort of rhythm or

> pattern to it. Until he graduated from high school, and from that

> month 2 years ago until now, he's been dealing with this.

> Having a 20 year old who is mostly a man, but a baby when he is

sick,

> is an interesting challenge. He was home for most of these

> illnesses, but last semester he transferred to a college 2 hours

> away. Getting the email with " Mom I'm sick " in the subject line,

> makes me feel just as awful as it did when he was 4. I guess my

> worries are a bit different than some of yours, like missed

classes,

> bosses who think you're faking when you can't work for 4 days in a

> row, 3 months in a row, and being too ill to take a final. On the

> plus side he's happy to know he's not contagious; armed with his

> prednisone, hopefully he won't miss a date with a hot girl, which

is

> clearly his priority.

> Meanwhile, I wonder why this came back, and how long it will last.

> I've seen very little published about older kids/adults with this.

> I'm reassured that he doesn't have the other fevers, based mainly

on

> his complete lack of any other symptoms, but still I wonder, what

in

> the world is going on in that body of his?

> Thank you for listening. I'd be interested in knowing if any of

you

> other fever people know of adolescents/young adults who struggle

with

> this.

> Regards,

>

> Barb

>

[Guest guest]

Hi ,

No, he didn't mention genetic testing, but I'm on a pretty steep

learning curve, so when I see him again I will have a list of

questions. Honestly just to know it wasn't virus after virus hitting

him gave me a lot of relief. I'm still concerned for his health, and

I'm worried he won't take care of himself the way I would! Sometimes

I long for the preschool days.

Thanks for the kind words

Barb

> >

> > Hello all,

> >

> > I suppose since I just posted a reply, I should introduce myself

> > already. I'm Barb, and I have an elderly son. His name is

> > and he is 20 years old. We've just seen a pediatric

> infectious

> > disease doc who knew exactly what was bugging . He's been in

a

> > cycle for 2 years, a few months with cyclical wicked fevers,

> swollen

> > glands and sore throat. He'd have 4 or 5 months off, then

repeat.

> > After being blown off by my pediatrician, I saw his partner who

> > thought 12 febrile illnesses in 2 years was a few too many, and

she

> > thought an ID consult was in order. So voila, now we have a

> > diagnosis. He's had a ton of blood work all of which was normal,

> > except for his CRP which was elevated during a sick (which is

what

> we

> > call the episodes.) Looking back, he certainly fit the profile.

> He

> > began with cyclical fevers when he was 4 and had a tonsillectomy

> just

> > before he turned 5. That kept him healthy for quite a while.

I'm

> > anxious to get his records now so I can plot his illnesses. I do

> > believe somewhere in high school he began to get sick a little

more

> > frequently, but I don't recall there being any sort of rhythm or

> > pattern to it. Until he graduated from high school, and from

that

> > month 2 years ago until now, he's been dealing with this.

> > Having a 20 year old who is mostly a man, but a baby when he is

> sick,

> > is an interesting challenge. He was home for most of these

> > illnesses, but last semester he transferred to a college 2 hours

> > away. Getting the email with " Mom I'm sick " in the subject line,

> > makes me feel just as awful as it did when he was 4. I guess my

> > worries are a bit different than some of yours, like missed

> classes,

> > bosses who think you're faking when you can't work for 4 days in

a

> > row, 3 months in a row, and being too ill to take a final. On

the

> > plus side he's happy to know he's not contagious; armed with his

> > prednisone, hopefully he won't miss a date with a hot girl, which

> is

> > clearly his priority.

> > Meanwhile, I wonder why this came back, and how long it will

last.

> > I've seen very little published about older kids/adults with

this.

> > I'm reassured that he doesn't have the other fevers, based mainly

> on

> > his complete lack of any other symptoms, but still I wonder, what

> in

> > the world is going on in that body of his?

> > Thank you for listening. I'd be interested in knowing if any of

> you

> > other fever people know of adolescents/young adults who struggle

> with

> > this.

> > Regards,

> >

> > Barb

> >

>

[Guest guest]

My boy has his in the right place. He knows he does not do well in school

and he is worried about the future so he wants to be a model. For the girls and

money lol......

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[Guest guest]

Hello!

My name is Dara Anzlowar. I live in the Santa Barbara, CA area, grew up

on the East coast,

and have lived all over the country at various different points. This area

is extraordinarily beautiful, and though I miss the snow and the brilliance

of a Northern fall, being here definitely has it's compensations:

for instance, as I type this a hummingbird is at the feeder next to my

office window, it's tiny bejeweled neck flashing in the sun.

I studied herbal medicine very intensively for many years. I am in the

process

of bringing to market a line of herbally-based, naturally perfumed occult

oils. The formulas are tweaked and ready (and have been), but the labels are

still being worked on. My background is in art.

I'm pleased to be here, and can tell that many here are very experienced

and knowledgeable.

Thank you for having me!

Glad to meet all of you,

Dara

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi my name is and my 9yr old son has Aspergers, ADHD, and bipolar. I, myself have ADHD, Bipolar and PTSD. I live in MA and i am struggling with the school system who rejected my IEP with a diagnosis and put him on a 504. My son gets bullied a lot at school as well as with the neighborhood children. It upsets me so much.I feel the school system is not doing enough and i want to complain and fight for my son's IEP but am afraid of how i will be treated afterwards by the school for making waves.My son does great academically but i struggle and have many problems at home. My son has been on the same medication for about 5 years now and i just dont know if it is helping anymore. He takes 36mg concerta am, 12.5 sertaline am, 1mg rispidone am, 18mg concerta at noon and 1mg rispidone

at 2pm. It seems that when i took him off for a week to test, he went downfall in all directions so the medicine must be working but i am not sure if the medication is causing some of the attitude/behavioral problems. When i mention it to the doctor all she does is up the medication verses giving him anything else to try. I have been in voluntary therapy for 6 years now and has been the best decision i made. My son constantly feels angry, gets upset easily, frustrated a lot, has low self-esteem, and looks at everything negatively. It breaks my hard to hear that he hates his life or wishes he was dead. As he is an only child i try and give him everything i can to make him happy but that hurts me to by spoiling him. Some problems i have is every time i ask him to brush teeth or take a shower, wash your hands or get dressed he growls at me, yells at me, gets mad. He doesnt want to stop what he is doing to do the things he does

not want to do and it is quite frustrating to fight constantly on the same battles. My son constantly repeats himself and is the biggest noise maker i met. He is constantly either singing your talking and it goes on all day and night. There is always some type of noise coming out of his mouth. I just dont know what to do anymore and i am not sure if the medicine could be causing some of this. I try my hardest to put as much structure as i can at home but i struggle everyday and wonder if it is going to get any better. I have had my son evaluated 4 times already. Does anyone think that the medicine could play a role?Does anyone have the same problems? Any Advice?Thank you

[Guest guest]

Our son was similar, only not medicated. The gluten free dairy free diet SAVED his life. The bipolar and angry behavior went away. It took a year. Now our son who is 18yrs. Says gluten gives him ADD.My heart goes out to you, as I have lived some of what you are experiencing. Try the diet and reflexes.Take Care,JudySent from my iPhoneOn Oct 9, 2011, at 4:35 PM, Corsetti <ccorsetti@...> wrote:

Hi my name is and my 9yr old son has Aspergers, ADHD, and bipolar. I, myself have ADHD, Bipolar and PTSD. I live in MA and i am struggling with the school system who rejected my IEP with a diagnosis and put him on a 504. My son gets bullied a lot at school as well as with the neighborhood children. It upsets me so much.I feel the school system is not doing enough and i want to complain and fight for my son's IEP but am afraid of how i will be treated afterwards by the school for making waves.My son does great academically but i struggle and have many problems at home. My son has been on the same medication for about 5 years now and i just dont know if it is helping anymore. He takes 36mg concerta am, 12.5 sertaline am, 1mg rispidone am, 18mg concerta at noon and 1mg rispidone

at 2pm. It seems that when i took him off for a week to test, he went downfall in all directions so the medicine must be working but i am not sure if the medication is causing some of the attitude/behavioral problems. When i mention it to the doctor all she does is up the medication verses giving him anything else to try. I have been in voluntary therapy for 6 years now and has been the best decision i made. My son constantly feels angry, gets upset easily, frustrated a lot, has low self-esteem, and looks at everything negatively. It breaks my hard to hear that he hates his life or wishes he was dead. As he is an only child i try and give him everything i can to make him happy but that hurts me to by spoiling him. Some problems i have is every time i ask him to brush teeth or take a shower, wash your hands or get dressed he growls at me, yells at me, gets mad. He doesnt want to stop what he is doing to do the things he does

not want to do and it is quite frustrating to fight constantly on the same battles. My son constantly repeats himself and is the biggest noise maker i met. He is constantly either singing your talking and it goes on all day and night. There is always some type of noise coming out of his mouth. I just dont know what to do anymore and i am not sure if the medicine could be causing some of this. I try my hardest to put as much structure as i can at home but i struggle everyday and wonder if it is going to get any better. I have had my son evaluated 4 times already. Does anyone think that the medicine could play a role?Does anyone have the same problems? Any Advice?Thank you

[Guest guest]

Dear ,

Thank you for sharing about your life with your son. I think all

parents can relate.

For parents who struggle with the " battles of daily life " with

children, there is a WONDERFUL tool in addition to the other therapies.

It is called Transforming the Difficult Child, The Nurtured Heart

Approach, by Glasser. This program is easy to learn and to apply.

There are DVD trainings and books at the library you can check out an

learn about this. The program has an awesome track record.

It is a great way to help ANY child connect with their greatness and

it is deeply healing for self-esteem issues.

Best Wishes,

Story

360-732-4356

www.moveplaythrive.com

[Guest guest]

Hi , thank you very much. I cant wait to go to the library and check it

out. you can never have too much information....I am very thankful

>

> Dear ,

>

> Thank you for sharing about your life with your son. I think all

> parents can relate.

>

> For parents who struggle with the " battles of daily life " with

> children, there is a WONDERFUL tool in addition to the other therapies.

>

> It is called Transforming the Difficult Child, The Nurtured Heart

> Approach, by Glasser. This program is easy to learn and to apply.

> There are DVD trainings and books at the library you can check out an

> learn about this. The program has an awesome track record.

>

> It is a great way to help ANY child connect with their greatness and

> it is deeply healing for self-esteem issues.

>

> Best Wishes,

>

>

> Story

> 360-732-4356

> www.moveplaythrive.com

>