new to group

[Guest guest]

Hi ~~ I'm new to the group in the last few days and am really feeling welcomed by the group...this seems like it will be a good place for us to hang out. I'm sure there will be several that will be able to offer support and information for you. Best wishes with your biopsy results and Drs. appointment next week. Keep in touch and let us know how it goes. Blessings, beatch38 wrote: Hi everyone, I

was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet

is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you

Pinpoint customers who are looking for what you sell.

[Guest guest]

I believe the reason they prefer Tylenol is because many studies have been done and they know how much Tylenol is safe for the liver. I have had a transplant and they told me I could take up to two grams a day or 4 extra strength.

I know people who take Advil and I have myself when Tylenol just wasn't working for a headache or aches and pains, just be careful with the dose

New to Group

Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.2/931 - Release Date: 8/1/2007 4:53 PM

[Guest guest]

I believe the reason they prefer Tylenol is because many studies have been done and they know how much Tylenol is safe for the liver. I have had a transplant and they told me I could take up to two grams a day or 4 extra strength.

I know people who take Advil and I have myself when Tylenol just wasn't working for a headache or aches and pains, just be careful with the dose

New to Group

Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.2/931 - Release Date: 8/1/2007 4:53 PM

[Guest guest]

My 11 year old daughters OCD and sensory issues are really bad right now

too! I think puberty is making thing worse,because she's been so emotional and

SO obsessive about things. She's also seeing if things are hot frequently

and has burned herself several times in the last few days.

Jennie

Florida too

In a message dated 8/11/2007 9:52:39 P.M. Eastern Daylight Time,

sailocean@... writes:

We have suspected our dd (11) had OCD for many years but just had it

diagnosed (therefore confirmed) yesterday. It seems as though things

have gotten much worse over the past few weeks to month but we can

think of anything significant that has happened recently. We have been

in the process of relocating during the past 9 months. But things got

worse at first after our 2nd baby, now 1 1/2, was born, obvious to us

now, but not at all then, that the worse thing you can hand our

daughter with OCD is a stinky diaper and drooling baby.

Anyway, it will be a little time, I figure at least a week or so, until

we can find a therapist that can treat her and will accept our

insurance (if thats even possible!) and I am not sure whether or not to

just start her on the Zoloft asap (Monday) just to survive the next few

weeks until she can get some counseling.

Every day is a real struggle and it seems each " bad " day is worse then

the last. The doctor told us to try and go along with things until we

get with a therapist(/phd whatever it takes) but her list of things we

need to do in order for her to be happy and not so angry is a mile long

and even though she is convinced that it is her and not the OCD is

so irrational and almost impossible for me to even attempt and besides

I know that even if I got all the carpets cleaned, and lysoled the

whole house, and kept pants and socks on the baby at all times, and

never kissed or shared food with the baby....that she still wouldnt be

happy! (whew....)

So what do I do????? How can I survive until things calm down a bit, I

am doing my very best to not get mad and keep reminding myself that its

not her and I love her. I also am fully aware that for her, knowing she

has OCD, it has a name and makes her different, cant be easy for her. I

havent been able to stop crying since yesterday, I feel so sad, for

her, for her baby sister, for all of us.

But I also am so blessed to have such a beautiful child who has not

been diagnosed with some terrible fatal disease but something we can

reallt work on and hopefully make at least better enough to have some

fun and smiles around here!

Thanks to all of you for " listening " and your words of encouragment

that I have read since joining the group just a few days ago is

encouraging - thank you

Melinda

Florida

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

My 11 year old daughters OCD and sensory issues are really bad right now

too! I think puberty is making thing worse,because she's been so emotional and

SO obsessive about things. She's also seeing if things are hot frequently

and has burned herself several times in the last few days.

Jennie

Florida too

In a message dated 8/11/2007 9:52:39 P.M. Eastern Daylight Time,

sailocean@... writes:

We have suspected our dd (11) had OCD for many years but just had it

diagnosed (therefore confirmed) yesterday. It seems as though things

have gotten much worse over the past few weeks to month but we can

think of anything significant that has happened recently. We have been

in the process of relocating during the past 9 months. But things got

worse at first after our 2nd baby, now 1 1/2, was born, obvious to us

now, but not at all then, that the worse thing you can hand our

daughter with OCD is a stinky diaper and drooling baby.

Anyway, it will be a little time, I figure at least a week or so, until

we can find a therapist that can treat her and will accept our

insurance (if thats even possible!) and I am not sure whether or not to

just start her on the Zoloft asap (Monday) just to survive the next few

weeks until she can get some counseling.

Every day is a real struggle and it seems each " bad " day is worse then

the last. The doctor told us to try and go along with things until we

get with a therapist(/phd whatever it takes) but her list of things we

need to do in order for her to be happy and not so angry is a mile long

and even though she is convinced that it is her and not the OCD is

so irrational and almost impossible for me to even attempt and besides

I know that even if I got all the carpets cleaned, and lysoled the

whole house, and kept pants and socks on the baby at all times, and

never kissed or shared food with the baby....that she still wouldnt be

happy! (whew....)

So what do I do????? How can I survive until things calm down a bit, I

am doing my very best to not get mad and keep reminding myself that its

not her and I love her. I also am fully aware that for her, knowing she

has OCD, it has a name and makes her different, cant be easy for her. I

havent been able to stop crying since yesterday, I feel so sad, for

her, for her baby sister, for all of us.

But I also am so blessed to have such a beautiful child who has not

been diagnosed with some terrible fatal disease but something we can

reallt work on and hopefully make at least better enough to have some

fun and smiles around here!

Thanks to all of you for " listening " and your words of encouragment

that I have read since joining the group just a few days ago is

encouraging - thank you

Melinda

Florida

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Melinda,

I would highly suggest (unless you've done this already) that you buy some

books to read that will help you immediately begin to help your daughter

while you wait for the therapist's apt. The sooner you learn how to help

her by not going along with her obsessions and compulsions, the sooner she

will be able break free from them.

I learned SO much from the books I read and they have really helped me help

my dd. Parents sometimes unknowingly make things worse by trying to reassure

their child or quiet them down by doing what they want. It only makes

things worse in the long run.

Honestly, it was very hard for me at first because it seems to go against my

whole parenting philosophy of trying to meet my children's needs but as soon

as I separated my child from the ocd and began refusing to go along with the

ocd monster (as we call it) then things began to improve quickly. (not

without more stress at first though)

It can take the Zoloft up to 6 weeks (or more, I think) to fully work. When

we were in crisis and didn't know how to help her, I started my 10 yo

daughter on it. As soon as we got a handle on how to deal with the ocd

monster and things seemed to be moving in the right direction, we were able

to stop it. It had not even been six weeks and likely it wasn't doing much

to help at that point anyway. It is a very personal decision though. If I

had read the books first, while I waited for the apt. and was able to use

some of the ideas in the books to help her, I think we could have avoided

the meds to begin with. It would have saved me a bit of mental anguish I

think. But like I said, it's a very personal decision and one that you must

weigh the pros and cons of for your dd and your family carefully. At the

time, knowing I was doing *something* to help my dd made me feel a little

bit better. I felt so helpless.

Good luck to you. I hope you find a competent therapist to help you.

[Guest guest]

Hi and thanks Jennie, , and Sue.

I will go right to the book store and get reading asap! I so very

much appreciate your comments and insight.

Melinda in Florida

>

>

>

> My 11 year old daughters OCD and sensory issues are really bad

right now

> too! I think puberty is making thing worse,because she's been so

emotional and

> SO obsessive about things. She's also seeing if things are hot

frequently

> and has burned herself several times in the last few days.

>

> Jennie

> Florida too

>

>

>

>

>

>

>

>

> In a message dated 8/11/2007 9:52:39 P.M. Eastern Daylight Time,

> sailocean@... writes:

>

>

>

>

> We have suspected our dd (11) had OCD for many years but just had

it

> diagnosed (therefore confirmed) yesterday. It seems as though

things

> have gotten much worse over the past few weeks to month but we can

> think of anything significant that has happened recently. We have

been

> in the process of relocating during the past 9 months. But things

got

> worse at first after our 2nd baby, now 1 1/2, was born, obvious to

us

> now, but not at all then, that the worse thing you can hand our

> daughter with OCD is a stinky diaper and drooling baby.

>

> Anyway, it will be a little time, I figure at least a week or so,

until

> we can find a therapist that can treat her and will accept our

> insurance (if thats even possible!) and I am not sure whether or

not to

> just start her on the Zoloft asap (Monday) just to survive the

next few

> weeks until she can get some counseling.

>

> Every day is a real struggle and it seems each " bad " day is worse

then

> the last. The doctor told us to try and go along with things until

we

> get with a therapist(/phd whatever it takes) but her list of

things we

> need to do in order for her to be happy and not so angry is a mile

long

> and even though she is convinced that it is her and not the OCD is

> so irrational and almost impossible for me to even attempt and

besides

> I know that even if I got all the carpets cleaned, and lysoled the

> whole house, and kept pants and socks on the baby at all times,

and

> never kissed or shared food with the baby....that she still wouldnt

be

> happy! (whew....)

>

> So what do I do????? How can I survive until things calm down a

bit, I

> am doing my very best to not get mad and keep reminding myself

that its

> not her and I love her. I also am fully aware that for her,

knowing she

> has OCD, it has a name and makes her different, cant be easy for

her. I

> havent been able to stop crying since yesterday, I feel so sad,

for

> her, for her baby sister, for all of us.

>

> But I also am so blessed to have such a beautiful child who has

not

> been diagnosed with some terrible fatal disease but something we

can

> reallt work on and hopefully make at least better enough to have

some

> fun and smiles around here!

>

> Thanks to all of you for " listening " and your words of

encouragment

> that I have read since joining the group just a few days ago is

> encouraging - thank you

>

> Melinda

> Florida

>

>

>

>

>

>

>

>

>

> ************************************** Get a sneak peek of the all-

new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

>

>

[Guest guest]

Welcome Allie,

You sound like another terrific person for this loop, we all are! I have a friend who has a different auto-immune disease and she has a bunch of dogs and over 20 birds. I don't know how she does it, taking care of the animals. I say the same to you. There are so many days I can barely take care of me, let alone another living/breathing being. I wonder the same with all of you parents with small children too! I give you all lots of credit.

Welcome and glad you found us but sorry you had to.

Carole from Hollywood FL

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Welcome Allie,

You sound like another terrific person for this loop, we all are! I have a friend who has a different auto-immune disease and she has a bunch of dogs and over 20 birds. I don't know how she does it, taking care of the animals. I say the same to you. There are so many days I can barely take care of me, let alone another living/breathing being. I wonder the same with all of you parents with small children too! I give you all lots of credit.

Welcome and glad you found us but sorry you had to.

Carole from Hollywood FL

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi ,

Welcome!! I am fairly new to the board as well. My

son has been fevering since May and fits this

pattern perfectly. Thanks to this board we have tried

Singulair and have been on that for a week. I have

learned a lot from this board and it has already been

a great source of support for me and my husband. I

have even saved posts to take to my son's doctor!

Josh's fevers are as close as 14 days apart now and

his fevers average 104.9 but have been higher. He has

all over body tremors with about half of the fevers.

I have also noticed how fast his heart beats with

these fevers. His glands are swollen and his throat

is red but he has no sores in his mouth. It is hard

to watch how miserable they are. However, I have hope

because I have read some success stories with some of

the treatments. The main things I have read about

are: Cimetidine, Singulair, a Tonsillectomy &

Adenoidectomy and of course Prednisone. Right now we

are seriously considering the T & A.

Good luck with all of this. I know you will find as

much support and info as I have.

Jen K.

[Guest guest]

, mom of Miranda in New York

My son, Carson, also has . He is six now but when he was 2-3 years old

his fever was every 4-6 weeks. I was so stressed from bringing him into the Dr.

office so often I told his Dr that I felt like I was going to get my child taken

from me because I couldn't seem to care for him without bringing him to the Dr.

I felt like a description of Munchausen’s and the repeated answer of “he must

have another virus” was about to drive me over the edge. We were sent to see an

infectious disease doctor at Children’s in Chicago and Carson, then four, was

diagnosed with with the records I had of all the tests and history I kept

journaling and were prescribed Prednisone. We always have a bottle of

prednisone on hand just in case but in looking into the syndrome further; the

triggers of episodes were stress, fatigue, and diet. Looking into all of that

with my son I found altering his sleep habits relieved a lot of stress in our

house. Carson is our third child and his

two older sisters are active in many activites and because he is the youngest

he was dragged along to many things the girls would not have had to attend at

his age. I began to really be diligent about HIS bed time and three very

deliberate meals each day. We reduced our drive thru eating to almost none and

I began to educate him on his own health and the concerns we had for him.

Preschool was hard and we had many absences but kindergarten we only had two

absences due to the fevers and we are aiming for zero due to fever episodes in

first grade, which he is attending now. I have prednisone and I am not afraid

to use it but I would rather make alterations to avoid the fevers altogether. I

am an advocate of the prednisone after I found myself in the worst of all his

episodes (before a diagnosis) buying Motrin and Tylenol in bulk when it was on

sale and our pharmacist very seriously warned me about liver issues that result

in high use of acetaminophen. It was enough to

scare me into at least alternating the two when needed for fever until I had a

diagnosis. Since we have the prednisone I use it but I have found with Carson

that it takes the fever away and does not bring the fevers closer together at

all. Others have had different results. It works for my child but may not be

the answer for yours. Best wishes to you and your daughter. We will be sure

to keep her in our prayers.

Casey in IL mom to

Carson-6, Cali-8 and Marlee-13

[Guest guest]

>thanks jen-

sorry to hear your son has been so ill too. the only good thing, is

that once miranda's fever breaks (usually after 3 days) poof, she's

back to her energetic, silly happy, loveable self i was so happy

this am, that we went to the park, it was such a nice day, then this

pm she went swimming with her cousins, she was so happy. she was

tired , so i was glad she took a nap, i think she needs sleep to

build herself up.

let me know how the singulair goes. hope it helps your son .glad i

foung this bd. b/c it seems the parents here are a great resource.

nancy

[Guest guest]

Judy-

We have had a great deal of success with predinsone, it knocks the fever right

out. My daughter is six and we have been using it for a year, she can't wait

to take it because she knows it's going to " knock that fever out of here " ! And

it does and she resumes her life again like it never happened. Some kids have

had it bring their fevers closer together, which is terrible, but it's worth

the try. No child should have to suffer with such a high temp for days with no

let up!

Amy A \ALbany, NY

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing./

[Guest guest]

Thanks Amy,

I agree no child should have to go through what our angels are going through.

I hope that I can get in with the ID Doctors soon and maybe they can help me.

Mia has been on prednisone a lot for her Asthma when she was about 10 months

till about Sept 2006. We moved to Florida and Asthma got 100% better and now we

are trying to combat a new issue. I am wondering if she has had this condition

dormant and because she is off the prednisone she has broke out with all these

other symptoms? I'll keep you posted.

Thanks Judy

[Guest guest]

Dear ,

My heart goes out to Lochlan. It's bad enough coming down with this as

an adult, but a wee babe.... Not at all fair. Does soaking in a hot bath give

him any relief? What about over-the-counter ointments? The kind that have

heat to them - I don't know what they would be called there.

What about pain meds? That's a hard call for someone so very young...

Are there any Pediatric Rheumatologist in town? My daughter had JRA, which is

mostly under control now, so I know a bit about what you're going through...

I've had the pleasure of visiting your beautiful town a few times~ I

fell in love with Pavlova - I make it now, but it isn't as good. I also visited

the rose garden there... Can't remember the name of the place, but will

always remember the roses.

I hope that you will find a caring doctor for Lochlan and that he

responds to treatment very soon. I know what you mean about the steroids - We

all

love AND hate them!

Kindest Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Dear ,

My heart goes out to Lochlan. It's bad enough coming down with this as

an adult, but a wee babe.... Not at all fair. Does soaking in a hot bath give

him any relief? What about over-the-counter ointments? The kind that have

heat to them - I don't know what they would be called there.

What about pain meds? That's a hard call for someone so very young...

Are there any Pediatric Rheumatologist in town? My daughter had JRA, which is

mostly under control now, so I know a bit about what you're going through...

I've had the pleasure of visiting your beautiful town a few times~ I

fell in love with Pavlova - I make it now, but it isn't as good. I also visited

the rose garden there... Can't remember the name of the place, but will

always remember the roses.

I hope that you will find a caring doctor for Lochlan and that he

responds to treatment very soon. I know what you mean about the steroids - We

all

love AND hate them!

Kindest Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi and welcome to the family. I'm sorry you have to be here but

I'm glad you found us. Your son has a good Mom in you.

What have the doctors recommended? Did they say anything about

prednisone or steroids of anyother kind? The reason I'm asking is

that it may not be something he'll have to take forever. I know I

took it for five years but then was able to ween off with the help of

my rheumatologist. Now I take it only when I have to.

And yes, there are side effects, as with anyother drug but you need

to speak with the doctor about it to make an informed decision.

Sometimes the benefits outweigh the side effects. Once the illness is

under control prehaps having the doctor ween him down or completely

off would be an option.

There are many other things that you might want to try also. For

instance, do your doctors know about this website? It's informative,

maybe it's something they should look at. There are so many

questions but I won't hound you with them right now; you've got your

hands full enough. For now, kiss Lochlan, give him a gentle hug and

let him know people around the world are on his side (and yours).

Take care and be well.

Ellen

Palm City, Florida

[Guest guest]

Hi and welcome to the family. I'm sorry you have to be here but

I'm glad you found us. Your son has a good Mom in you.

What have the doctors recommended? Did they say anything about

prednisone or steroids of anyother kind? The reason I'm asking is

that it may not be something he'll have to take forever. I know I

took it for five years but then was able to ween off with the help of

my rheumatologist. Now I take it only when I have to.

And yes, there are side effects, as with anyother drug but you need

to speak with the doctor about it to make an informed decision.

Sometimes the benefits outweigh the side effects. Once the illness is

under control prehaps having the doctor ween him down or completely

off would be an option.

There are many other things that you might want to try also. For

instance, do your doctors know about this website? It's informative,

maybe it's something they should look at. There are so many

questions but I won't hound you with them right now; you've got your

hands full enough. For now, kiss Lochlan, give him a gentle hug and

let him know people around the world are on his side (and yours).

Take care and be well.

Ellen

Palm City, Florida

[Guest guest]

Thanks so much Ellen, its great to know that there are people going

through the same thing. To answer your question Lochlan's specialist

passed away 18 months ago and there doesn't seem to be anyone else in

Christchurch that knows anything about the disease. I'm going to take

Lochlan back to our GP today and see if they can give him something to

ease his pain. He is a very pale child and hides his pain very well.

He has just got used to it, it not until he can't move that he complains.

>

> Take care and be well.

>

> Ellen

> Palm City, Florida

>

[Guest guest]

Thanks so much Ellen, its great to know that there are people going

through the same thing. To answer your question Lochlan's specialist

passed away 18 months ago and there doesn't seem to be anyone else in

Christchurch that knows anything about the disease. I'm going to take

Lochlan back to our GP today and see if they can give him something to

ease his pain. He is a very pale child and hides his pain very well.

He has just got used to it, it not until he can't move that he complains.

>

> Take care and be well.

>

> Ellen

> Palm City, Florida

>

[Guest guest]

Hi ,

My daughter is 18 and was diagnosed with systemic JRA (Still's

disease) when she was 10 years old. I , also, run a support group in

our state for families and children with JRA. We have several

children with Still's disease in our group.

Yes, n suffers from headaches with her disease. She has also

had abdominal pain, but we have found that her liver and spleen are

usually inflamed when she complains of stomach pain.

Does your son have the fevers and rashes? n had the fevers at

onset. The rash lasted about 5 years, but it is now gone. We do

have to jump on steroids when the organs become inflamed and

enlarged, but otherwise, we try to avoid them. She has been on a lot

of different medications thru the years. Steroids, plaquenil,

naprosyn, methotrexate, enbrel, and kineret. She has had the best

luck with methotrexate. Has your son been on any medications?

There is a site dedicated just to Juvenile rheumatoid arthritis. It

is run by Georgina, whose son has Still's disease. It is http://

www.geocities.com/Heartland/Village/8414/. Take care, (n,

18, systemic JRA)

> Hi everyone

>

> Finally I have found somewhere that knows something about Stills

> Disease. My Son Lochlan was Diagnosed with Stills when he was 2

> years old, he is now 5 years old. Its been really hard as we live

> in Christchurch, New Zealand and the doctors don't know much about

> the disease at all. Over the past 6 months he has been in more pain

> than normal, I have to massage his arms, legs and back morning and

> night to get him going. Is it normal to have headaches and stomach

> pains with the disease? Also he has a really high acid level in his

> body, his teeth decay as soon as they come through. I have so many

> questions that I would love to have answered, to see your wee boy

> in so much pain is heartbreaking. We have changed his diet to a

> Gluten Free diet to see if this works. At this stage we haven't

> given him steroids for his pain as I read about the side effects,

> now I'm not so sure. All he wants is to have no pain.

>

> We have 2 other children that have other health issues but not

> Stills thank goodness.

>

> Lochlan (16th February 2002)

>

> Regards

> McNicholl

>

>

[Guest guest]

Hi ,

My daughter is 18 and was diagnosed with systemic JRA (Still's

disease) when she was 10 years old. I , also, run a support group in

our state for families and children with JRA. We have several

children with Still's disease in our group.

Yes, n suffers from headaches with her disease. She has also

had abdominal pain, but we have found that her liver and spleen are

usually inflamed when she complains of stomach pain.

Does your son have the fevers and rashes? n had the fevers at

onset. The rash lasted about 5 years, but it is now gone. We do

have to jump on steroids when the organs become inflamed and

enlarged, but otherwise, we try to avoid them. She has been on a lot

of different medications thru the years. Steroids, plaquenil,

naprosyn, methotrexate, enbrel, and kineret. She has had the best

luck with methotrexate. Has your son been on any medications?

There is a site dedicated just to Juvenile rheumatoid arthritis. It

is run by Georgina, whose son has Still's disease. It is http://

www.geocities.com/Heartland/Village/8414/. Take care, (n,

18, systemic JRA)

> Hi everyone

>

> Finally I have found somewhere that knows something about Stills

> Disease. My Son Lochlan was Diagnosed with Stills when he was 2

> years old, he is now 5 years old. Its been really hard as we live

> in Christchurch, New Zealand and the doctors don't know much about

> the disease at all. Over the past 6 months he has been in more pain

> than normal, I have to massage his arms, legs and back morning and

> night to get him going. Is it normal to have headaches and stomach

> pains with the disease? Also he has a really high acid level in his

> body, his teeth decay as soon as they come through. I have so many

> questions that I would love to have answered, to see your wee boy

> in so much pain is heartbreaking. We have changed his diet to a

> Gluten Free diet to see if this works. At this stage we haven't

> given him steroids for his pain as I read about the side effects,

> now I'm not so sure. All he wants is to have no pain.

>

> We have 2 other children that have other health issues but not

> Stills thank goodness.

>

> Lochlan (16th February 2002)

>

> Regards

> McNicholl

>

>

[Guest guest]

Hi ,

My daughter is 18 and was diagnosed with systemic JRA (Still's

disease) when she was 10 years old. I , also, run a support group in

our state for families and children with JRA. We have several

children with Still's disease in our group.

Yes, n suffers from headaches with her disease. She has also

had abdominal pain, but we have found that her liver and spleen are

usually inflamed when she complains of stomach pain.

Does your son have the fevers and rashes? n had the fevers at

onset. The rash lasted about 5 years, but it is now gone. We do

have to jump on steroids when the organs become inflamed and

enlarged, but otherwise, we try to avoid them. She has been on a lot

of different medications thru the years. Steroids, plaquenil,

naprosyn, methotrexate, enbrel, and kineret. She has had the best

luck with methotrexate. Has your son been on any medications?

There is a site dedicated just to Juvenile rheumatoid arthritis. It

is run by Georgina, whose son has Still's disease. It is http://

www.geocities.com/Heartland/Village/8414/. Take care, (n,

18, systemic JRA)

> Hi everyone

>

> Finally I have found somewhere that knows something about Stills

> Disease. My Son Lochlan was Diagnosed with Stills when he was 2

> years old, he is now 5 years old. Its been really hard as we live

> in Christchurch, New Zealand and the doctors don't know much about

> the disease at all. Over the past 6 months he has been in more pain

> than normal, I have to massage his arms, legs and back morning and

> night to get him going. Is it normal to have headaches and stomach

> pains with the disease? Also he has a really high acid level in his

> body, his teeth decay as soon as they come through. I have so many

> questions that I would love to have answered, to see your wee boy

> in so much pain is heartbreaking. We have changed his diet to a

> Gluten Free diet to see if this works. At this stage we haven't

> given him steroids for his pain as I read about the side effects,

> now I'm not so sure. All he wants is to have no pain.

>

> We have 2 other children that have other health issues but not

> Stills thank goodness.

>

> Lochlan (16th February 2002)

>

> Regards

> McNicholl

>

>

[Guest guest]

,

Sorry to hear Lochlan has been diagnosed so young. What you describe

seems fairly common. I was diagnosed as a child and it later went into remission

until recently - so there should be a period of improvement to look forward too.

The only meds I can remember taking as a child is a liquid form of methotrexate

and possibly Iburpofen. Alcohol rubs (particularly on the inside of the joint)

seemed to help some at the time, also soaking in hot water - but no no's for me

as a child was Ben Gay, Icy Hot and similar topical agents (they were too

intense) and anything involving needles. Another trick my grandmother sometimes

used was to talk to me about something I enjoyed while massaging my knees - it

helped to distract me from the circumstances.

Mcnicholl wrote:

Hi everyone

Finally I have found somewhere that knows something about Stills Disease. My Son

Lochlan was Diagnosed with Stills when he was 2 years old, he is now 5 years

old. Its been really hard as we live in Christchurch, New Zealand and the

doctors don't know much about the disease at all. Over the past 6 months he has

been in more pain than normal, I have to massage his arms, legs and back morning

and night to get him going. Is it normal to have headaches and stomach pains

with the disease? Also he has a really high acid level in his body, his teeth

decay as soon as they come through. I have so many questions that I would love

to have answered, to see your wee boy in so much pain is heartbreaking. We have

changed his diet to a Gluten Free diet to see if this works. At this stage we

haven't given him steroids for his pain as I read about the side effects, now

I'm not so sure. All he wants is to have no pain.

We have 2 other children that have other health issues but not Stills thank

goodness.

Lochlan (16th February 2002)

Regards

McNicholl

[Guest guest]

,

Sorry to hear Lochlan has been diagnosed so young. What you describe

seems fairly common. I was diagnosed as a child and it later went into remission

until recently - so there should be a period of improvement to look forward too.

The only meds I can remember taking as a child is a liquid form of methotrexate

and possibly Iburpofen. Alcohol rubs (particularly on the inside of the joint)

seemed to help some at the time, also soaking in hot water - but no no's for me

as a child was Ben Gay, Icy Hot and similar topical agents (they were too

intense) and anything involving needles. Another trick my grandmother sometimes

used was to talk to me about something I enjoyed while massaging my knees - it

helped to distract me from the circumstances.

Mcnicholl wrote:

Hi everyone

Finally I have found somewhere that knows something about Stills Disease. My Son

Lochlan was Diagnosed with Stills when he was 2 years old, he is now 5 years

old. Its been really hard as we live in Christchurch, New Zealand and the

doctors don't know much about the disease at all. Over the past 6 months he has

been in more pain than normal, I have to massage his arms, legs and back morning

and night to get him going. Is it normal to have headaches and stomach pains

with the disease? Also he has a really high acid level in his body, his teeth

decay as soon as they come through. I have so many questions that I would love

to have answered, to see your wee boy in so much pain is heartbreaking. We have

changed his diet to a Gluten Free diet to see if this works. At this stage we

haven't given him steroids for his pain as I read about the side effects, now

I'm not so sure. All he wants is to have no pain.

We have 2 other children that have other health issues but not Stills thank

goodness.

Lochlan (16th February 2002)

Regards

McNicholl