RE: Systemic moms, thoughts please.. drs too!!!

January 27, 2005

Helen - I am the mom of a systemic kid and I am so concerned for you and your

Nick. I remember reading your email a few weeks ago about how well he was

doing. Hunter was having a difficult week and your happiness actually made that

miserable week go better just knowing that there is hope and one child was

doing better. Our prayers are with you - please let us know when he takes a

turn for the better - I just know he will he has you in his corner. The fever

you mentioned does sound like what Hunter had in the beginning of her illness.

Could you not call your Rheumy and get in to see them earlier than Tuesday - I

know you have probably tried that - we are fortunate - Dr. Volger is

wonderful about working Hunter in when she is really not doing well. Take care

of

yourself Helen - it is hard when they are in a flare but when he is all better

--

and he will be soon -- you need some major pampering. Sandi Ken Hunter (6

Systemic)

January 27, 2005

Dear Helen, I remember when n had the systemic fevers that we would

give her advil and tylenol. I remember telling the doctor, that we give her

these medicines, but the fever just does what it wants. The medications

never controlled the fevers. So I would say, that is a clue maybe on what

is going on. I would lean toward the premise that it is a fever from a

flare. When n gets sick it tweeks the arthritis, and sometimes throws

her into a flare. In the past when n has gotten sick and the systemic

is acting up, sometimes it also goes away when the initial illness goes

away. That can be a day to day waiting game for the child though, and

sometimes is wasted time if the flare isn't going to go away on its own. I

hope I am not too confusing here. Also, when n flares she gets a

general malaise and won't have a certain joint complaint. You may want to

call and discuss your worries with your rheumy before next week. I know no

one wants to up the steroids, but sometimes it is needed to get over the

hump. On a side note, there is lots of stuff going around here. n had

a cold, cough, fatigue, headache thing for two weeks. Good luck.

(n, 16, systemic)

Systemic moms, thoughts please.. drs too!!!

>

> is still sick.... let me give you a brief run down and then

> you can tell me what you think...

>

> 2 weeks ago he started with a runny nose... no big deal..

> 1 week later hes got a slight cough ( post nasal drip?) a scratchy

> throat, but wakes with a low grade temp and a headache. Take him to

> docs.. put on cefzil for sinus infection.

> 2 days later.. the allergic reaction and temp hits 104.

> stop cefzil.. start bendryl and tylenol along with all his other

> meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg mobic)

> Saw the ped on Monday.. told to continue the benadryl till friday

> and start zithromax on wednesday, which we did. Talked to rheumys

> office told to hold off on enbrel Monday and see how he is for

> thursdays shot.

>

> still has an awful nose, his cough is more " chesty " .. his

> temps are very low grade during the day, but spike over 103 at

> supper time, gone by 10.00pm and are there again some mornings but

> not all and return to around 100-101 after breakfast. midday they

> are usually normal.

>

> Today is temps are all over the place... last night they were over

> 103 again, this morning 100.8 upon waking.. now its at 102.

>

> I dont know whats going on.. hes not had any joint pain since sunday

> and the high fever with the reaction. I dont know what to do to

> fight this... I keep giving tylenol, but to be honest it doesnt do

> anything. I dont know if its the infection thats causing the temps,

> but hes now had 2 doses of anti-biotics.. could he be having the

> systemic fevers as well as the infection.. i find it strange that

> like clockwork its back over 103 at supper time. No rash though.

>

> Hes missing soo much school and hes already struggling... ughhh. We

> see the rheumy on tuesday so hopefully she can read the diary and

> have an idea whats going on...

>

> Im frustrated...

>

> hugs Helen and (7,systemic)

>

January 27, 2005

OH Helen! I have no advise...just hang in there. My only bit of

thought. We had DR. W...she is a nice lady and Allie like her a lot. I

just wanted her to be more aggressive with her medicine. I like DR.

Vehe. He is aggressive and not afraid to changes Allies drugs if they

aren't working.

I know another mom went to the Clinic in Roseville. She

thought that DR> W. wasn't being aggressive enough. ( Marilyn was the

lady sitting next to me at the last meeting) They see Dr. Oken. I

called one time and just talked to the nurses about Allie and was

impressed.

My heart aches for you because it is so hard with these kids...and yours

just doesn't get over it. Have you talked to school to find out if

there is some " home " teacher that might come around and help out

!

I will say a prayer tonight!

and Allie (8poly)

________________________________

From: hburger64 [mailto:hburger64@...]

Sent: Thursday, January 27, 2005 10:39 AM

Subject: Systemic moms, thoughts please.. drs too!!!

is still sick.... let me give you a brief run down and then

you can tell me what you think...

2 weeks ago he started with a runny nose... no big deal..

1 week later hes got a slight cough ( post nasal drip?) a scratchy

throat, but wakes with a low grade temp and a headache. Take him to

docs.. put on cefzil for sinus infection.

2 days later.. the allergic reaction and temp hits 104.

stop cefzil.. start bendryl and tylenol along with all his other

meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg mobic)

Saw the ped on Monday.. told to continue the benadryl till friday

and start zithromax on wednesday, which we did. Talked to rheumys

office told to hold off on enbrel Monday and see how he is for

thursdays shot.

still has an awful nose, his cough is more " chesty " .. his

temps are very low grade during the day, but spike over 103 at

supper time, gone by 10.00pm and are there again some mornings but

not all and return to around 100-101 after breakfast. midday they

are usually normal.

Today is temps are all over the place... last night they were over

103 again, this morning 100.8 upon waking.. now its at 102.

I dont know whats going on.. hes not had any joint pain since sunday

and the high fever with the reaction. I dont know what to do to

fight this... I keep giving tylenol, but to be honest it doesnt do

anything. I dont know if its the infection thats causing the temps,

but hes now had 2 doses of anti-biotics.. could he be having the

systemic fevers as well as the infection.. i find it strange that

like clockwork its back over 103 at supper time. No rash though.

Hes missing soo much school and hes already struggling... ughhh. We

see the rheumy on tuesday so hopefully she can read the diary and

have an idea whats going on...

Im frustrated...

hugs Helen and (7,systemic)

________________________________

January 27, 2005

all i can say is that usally when tiff is doing this they up the

pred... and honestly is does help. like you have already been told

perhaps this dr is not agressive enough??? i'd call back and tell

them that you are seeing systemic symptoms and want to know what you

should change the dose to (sound as tho your asuming a change)...

remember that even a tiny cold will rev up the systemic stuff....

sucks huh?? just be more insistaint and persistaint... trust me it

does pay off:) good luck! were here for you!!

>

> is still sick.... let me give you a brief run down and

then

> you can tell me what you think...

>

> 2 weeks ago he started with a runny nose... no big deal..

> 1 week later hes got a slight cough ( post nasal drip?) a scratchy

> throat, but wakes with a low grade temp and a headache. Take him to

> docs.. put on cefzil for sinus infection.

> 2 days later.. the allergic reaction and temp hits 104.

> stop cefzil.. start bendryl and tylenol along with all his other

> meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg mobic)

> Saw the ped on Monday.. told to continue the benadryl till friday

> and start zithromax on wednesday, which we did. Talked to rheumys

> office told to hold off on enbrel Monday and see how he is for

> thursdays shot.

>

> still has an awful nose, his cough is more " chesty " .. his

> temps are very low grade during the day, but spike over 103 at

> supper time, gone by 10.00pm and are there again some mornings but

> not all and return to around 100-101 after breakfast. midday they

> are usually normal.

>

> Today is temps are all over the place... last night they were over

> 103 again, this morning 100.8 upon waking.. now its at 102.

>

> I dont know whats going on.. hes not had any joint pain since

sunday

> and the high fever with the reaction. I dont know what to do to

> fight this... I keep giving tylenol, but to be honest it doesnt do

> anything. I dont know if its the infection thats causing the temps,

> but hes now had 2 doses of anti-biotics.. could he be having the

> systemic fevers as well as the infection.. i find it strange that

> like clockwork its back over 103 at supper time. No rash though.

>

> Hes missing soo much school and hes already struggling... ughhh. We

> see the rheumy on tuesday so hopefully she can read the diary and

> have an idea whats going on...

>

> Im frustrated...

>

> hugs Helen and (7,systemic)

January 27, 2005

Helen I can see why you would be so frustrated for Nick. I know

when Aundrea had her first two major flares we saw a lot of systemic

symptoms but not necesarily any joint pain. His problems really do

sound more like a flare, (perhaps along with some cold symptoms). I

think most kids that get sick with a virus may have a temp rise

during afternoon hours, but his pattern seems much different than

that.

I am glad that you will have him seen Tuesday, but when your dealing

with a sick child day after day, Tuesday can seem like a long ways

off.

Today, I am getting a small taste of what Drea goes thru. I have a

yucky, scratchy sore throat and all over body ache. I can totally

see now why she can just live on one popscicle after another.

I sure hope Nick starts to get better soon. Zithromax if I am

correct is only a 5 day antibiotic and should be fast acting. I

would think you would have seen some improvement by now!

(drea 9 systemic??)---

In , " hburger64 " <hburger64@h...> wrote:

>

> is still sick.... let me give you a brief run down and

then

> you can tell me what you think...

>

> 2 weeks ago he started with a runny nose... no big deal..

> 1 week later hes got a slight cough ( post nasal drip?) a scratchy

> throat, but wakes with a low grade temp and a headache. Take him

to

> docs.. put on cefzil for sinus infection.

> 2 days later.. the allergic reaction and temp hits 104.

> stop cefzil.. start bendryl and tylenol along with all his other

> meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg mobic)

> Saw the ped on Monday.. told to continue the benadryl till friday

> and start zithromax on wednesday, which we did. Talked to rheumys

> office told to hold off on enbrel Monday and see how he is for

> thursdays shot.

>

> still has an awful nose, his cough is more " chesty " .. his

> temps are very low grade during the day, but spike over 103 at

> supper time, gone by 10.00pm and are there again some mornings but

> not all and return to around 100-101 after breakfast. midday they

> are usually normal.

>

> Today is temps are all over the place... last night they were over

> 103 again, this morning 100.8 upon waking.. now its at 102.

>

> I dont know whats going on.. hes not had any joint pain since

sunday

> and the high fever with the reaction. I dont know what to do to

> fight this... I keep giving tylenol, but to be honest it doesnt do

> anything. I dont know if its the infection thats causing the

temps,

> but hes now had 2 doses of anti-biotics.. could he be having the

> systemic fevers as well as the infection.. i find it strange that

> like clockwork its back over 103 at supper time. No rash though.

>

> Hes missing soo much school and hes already struggling... ughhh.

We

> see the rheumy on tuesday so hopefully she can read the diary and

> have an idea whats going on...

>

> Im frustrated...

>

> hugs Helen and (7,systemic)

January 27, 2005

-,,

ive noticed when Nick gets sick it tiggers a flare, so thats why im

wondering this time around. Theres times during the day, like now

where hes playing and laughing and feeling great... but then by 5pm

hes down for the count again. The systemic symptoms are soo darn

frustating...

Hugs Helen and (7,systemic)

andy- In , " WILLIAM PRICE " <bc.price@c...>

wrote:

> Dear Helen, I remember when n had the systemic fevers that

we would

> give her advil and tylenol. I remember telling the doctor, that

we give her

> these medicines, but the fever just does what it wants. The

medications

> never controlled the fevers. So I would say, that is a clue maybe

on what

> is going on. I would lean toward the premise that it is a fever

from a

> flare. When n gets sick it tweeks the arthritis, and

sometimes throws

> her into a flare. In the past when n has gotten sick and the

systemic

> is acting up, sometimes it also goes away when the initial illness

goes

> away. That can be a day to day waiting game for the child though,

and

> sometimes is wasted time if the flare isn't going to go away on

its own. I

> hope I am not too confusing here. Also, when n flares she

gets a

> general malaise and won't have a certain joint complaint. You may

want to

> call and discuss your worries with your rheumy before next week.

I know no

> one wants to up the steroids, but sometimes it is needed to get

over the

> hump. On a side note, there is lots of stuff going around here.

n had

> a cold, cough, fatigue, headache thing for two weeks. Good luck.

> (n, 16, systemic)

> Systemic moms, thoughts please.. drs too!!!

>

> >

> > is still sick.... let me give you a brief run down and

then

> > you can tell me what you think...

> >

> > 2 weeks ago he started with a runny nose... no big deal..

> > 1 week later hes got a slight cough ( post nasal drip?) a

scratchy

> > throat, but wakes with a low grade temp and a headache. Take him

to

> > docs.. put on cefzil for sinus infection.

> > 2 days later.. the allergic reaction and temp hits 104.

> > stop cefzil.. start bendryl and tylenol along with all his other

> > meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg

mobic)

> > Saw the ped on Monday.. told to continue the benadryl till friday

> > and start zithromax on wednesday, which we did. Talked to rheumys

> > office told to hold off on enbrel Monday and see how he is for

> > thursdays shot.

> >

> > still has an awful nose, his cough is more " chesty " ..

his

> > temps are very low grade during the day, but spike over 103 at

> > supper time, gone by 10.00pm and are there again some mornings

but

> > not all and return to around 100-101 after breakfast. midday

they

> > are usually normal.

> >

> > Today is temps are all over the place... last night they were

over

> > 103 again, this morning 100.8 upon waking.. now its at 102.

> >

> > I dont know whats going on.. hes not had any joint pain since

sunday

> > and the high fever with the reaction. I dont know what to do to

> > fight this... I keep giving tylenol, but to be honest it doesnt

do

> > anything. I dont know if its the infection thats causing the

temps,

> > but hes now had 2 doses of anti-biotics.. could he be having the

> > systemic fevers as well as the infection.. i find it strange that

> > like clockwork its back over 103 at supper time. No rash though.

> >

> > Hes missing soo much school and hes already struggling... ughhh.

We

> > see the rheumy on tuesday so hopefully she can read the diary and

> > have an idea whats going on...

> >

> > Im frustrated...

> >

> > hugs Helen and (7,systemic)

> >

January 27, 2005

-..

I thought the same way you did about Dr W.. she is very conservative

and at the beginning I did wonder if she was the right doctor for

. But over time, Ive come to understand a lot of her

reasoning and do like her approach to things. The problem with

systemics is not so much the arhtritis part sometimes, but the

systemic issues. No matter how aggressive the treatment plan is, the

systemic symptoms came come back at any time. Anything can trigger

them. has always struggled with the fevers.. weather it be

triggered from a pred taper or an illness. We just have to find the

right medications and try them one at a time.

I know if I call Dr W now she will increase the pred, she does

listen to me and does take into account what *I* think we should be

doing. I think its taken up time to build up that trust and

understanding, She knows i research a lot and understand a lot of

what goes on with Systemic kids and she does value my opinion....i

dont want to up the pred just yet. The kids have no school tomorrow,

then its the weekend. Nick has 4 days now to see where this all

goes. Sending him back to school too early on Tuesday was a bad

thing and I think that set him back some. The zithromax is 5 days,

he will be done on sunday and the benadryl tomorrow. Hopefully by

monday I will have a better picture if the fevers are related to the

sinus infection, the allergic reaction ( ive read that high fevers

can happen with severe reactions with cefzil) or a systemic flare.

Thanks for the prayers ))

hugs Helen and (7,systemic)

-- In , " Ray " <leslie@b...> wrote:

> OH Helen! I have no advise...just hang in there. My only bit of

> thought. We had DR. W...she is a nice lady and Allie like her a

lot. I

> just wanted her to be more aggressive with her medicine. I like

DR.

> Vehe. He is aggressive and not afraid to changes Allies drugs if

they

> aren't working.

>

> I know another mom went to the Clinic in Roseville.

She

> thought that DR> W. wasn't being aggressive enough. ( Marilyn was

the

> lady sitting next to me at the last meeting) They see Dr. Oken. I

> called one time and just talked to the nurses about Allie and was

> impressed.

>

> My heart aches for you because it is so hard with these kids...and

yours

> just doesn't get over it. Have you talked to school to find out if

> there is some " home " teacher that might come around and help out

> !

>

> I will say a prayer tonight!

>

> and Allie (8poly)

>

> ________________________________

>

> From: hburger64 [mailto:hburger64@h...]

> Sent: Thursday, January 27, 2005 10:39 AM

>

> Subject: Systemic moms, thoughts please.. drs too!!!

>

> is still sick.... let me give you a brief run down and

then

> you can tell me what you think...

>

> 2 weeks ago he started with a runny nose... no big deal..

> 1 week later hes got a slight cough ( post nasal drip?) a scratchy

> throat, but wakes with a low grade temp and a headache. Take him

to

> docs.. put on cefzil for sinus infection.

> 2 days later.. the allergic reaction and temp hits 104.

> stop cefzil.. start bendryl and tylenol along with all his other

> meds ( 3mg prednisone, 3mg folic acid, 20mg subq MTX, 7.5mg mobic)

> Saw the ped on Monday.. told to continue the benadryl till friday

> and start zithromax on wednesday, which we did. Talked to rheumys

> office told to hold off on enbrel Monday and see how he is for

> thursdays shot.

>

> still has an awful nose, his cough is more " chesty " .. his

> temps are very low grade during the day, but spike over 103 at

> supper time, gone by 10.00pm and are there again some mornings but

> not all and return to around 100-101 after breakfast. midday they

> are usually normal.

>

> Today is temps are all over the place... last night they were over

> 103 again, this morning 100.8 upon waking.. now its at 102.

>

> I dont know whats going on.. hes not had any joint pain since

sunday

> and the high fever with the reaction. I dont know what to do to

> fight this... I keep giving tylenol, but to be honest it doesnt do

> anything. I dont know if its the infection thats causing the

temps,

> but hes now had 2 doses of anti-biotics.. could he be having the

> systemic fevers as well as the infection.. i find it strange that

> like clockwork its back over 103 at supper time. No rash though.

>

> Hes missing soo much school and hes already struggling... ughhh.

We

> see the rheumy on tuesday so hopefully she can read the diary and

> have an idea whats going on...

>

> Im frustrated...

>

> hugs Helen and (7,systemic)

>

> ________________________________

>

January 27, 2005

Helen,

It is so important to have a good working relationship with your doctor.

You have achieved that...don't change; continue to question and

research. was more comfortable with her than I was, but I wanted

the " band aid " to fix my kid now! He is not sorry that we changed DR's.

But we didn't change because I wanted to do that we changed because only

Dr. Vehe could do the Humira study. Keep up the good work! I am proud

of you mom!

and Allie (8 poly)

________________________________

From: hburger64 [mailto:hburger64@...]

Sent: Thursday, January 27, 2005 11:37 AM

Subject: Re: Systemic moms, thoughts please.. drs too!!!