RE: Back from the Doctors.

[Guest guest]

Hi Helen,

I am sorry to hear about Nick. You probably already have done this,

but the one thing I have learned is to let the ped rheumy know

whenever n is sick. Even if it is a hangnail, I will let the

rheumy know and let him make the judgement call. I have found that

systemic kids are usually far too complicated for a pediatrician.

Nick will be in our prayers. (n, 17, systemic)

On Aug 1, 2006, at 12:46 PM, hburger64 wrote:

> Nick was still vomiting this morning so I took him in again. He then

> proceeded to vomit 4 times between getting to the doctors parking

> lot and the appt room.

>

> He looked awful, had a headache and was dizzy. The doctor looked him

> over and started talking about brain bleeds and brain tumors. Before

> I knew it Nick was scheduled for am emergency brain CT. I have no

> idea how I managed to hold it together and drive over to the

> imagining center ( about 15 miles away). The fact that we didnt even

> have an appt and they were going to fit us in had me freaking out. I

> tried to call Alia to calm me down, but I forgot Evan was having his

> surgery this morning.

>

> Thank god, after 2 hours we got the fantastic news that his head was

> fine. Im so glad it was read and reported back to the ped while I

> waited. I dont think i could have handled coming home and sitting by

> a phone.

>

> The ped wanted us back in his office, so we went back, donated some

> more blood ( mono was negative )) have to wait for the EBV) and

> sent us off with a rx for some anti-sickness suppositories as pills

> will not stay down him right now and instructions to call if he gets

> worse.

> The big fear now is dehydration. He wanted to give him some IV

> fluids, but I promised to faithfully get fluids in him. His weight

> is down to 46lbs (

>

> So, now im suppose to go try sleep as I worked all night and went

> straight off to the appts today. Im due back at work in 7 hours and

> Im so wound up i'm not sure I will be able to sleep.

>

> I really dont know at this point if Nick will gte this remicade on

> Friday.

>

> Hugs Helen and (8,systemic)

>

>

>

[Guest guest]

-,

No, I have not talked to the rheumy. Since the nurse was so rude

when I called last time, Im a little gunshy to even talk to her

again. If it was his old rheumy I would have called.

We have an appt on friday, so I will be talking in full with the doc

then. I hope by then Nick is doing better, although hes still

throwing up now even with the trimethobenzamide supp on board.

If hes still vomiting this much tomorrow we will be back in the peds

office and i will suggest that the ped confers with the rheumy.

thanks

hugs Helen and (8,systemic)

-- In , Price <bc.price@...> wrote:

>

> Hi Helen,

>

> I am sorry to hear about Nick. You probably already have done

this,

> but the one thing I have learned is to let the ped rheumy know

> whenever n is sick. Even if it is a hangnail, I will let

the

> rheumy know and let him make the judgement call. I have found

that

> systemic kids are usually far too complicated for a

pediatrician.

> Nick will be in our prayers. (n, 17, systemic)

>

>

> On Aug 1, 2006, at 12:46 PM, hburger64 wrote:

>

> > Nick was still vomiting this morning so I took him in again. He

then

> > proceeded to vomit 4 times between getting to the doctors parking

> > lot and the appt room.

> >

> > He looked awful, had a headache and was dizzy. The doctor looked

him

> > over and started talking about brain bleeds and brain tumors.

Before

> > I knew it Nick was scheduled for am emergency brain CT. I have no

> > idea how I managed to hold it together and drive over to the

> > imagining center ( about 15 miles away). The fact that we didnt

even

> > have an appt and they were going to fit us in had me freaking

out. I

> > tried to call Alia to calm me down, but I forgot Evan was having

his

> > surgery this morning.

> >

> > Thank god, after 2 hours we got the fantastic news that his head

was

> > fine. Im so glad it was read and reported back to the ped while I

> > waited. I dont think i could have handled coming home and

sitting by

> > a phone.

> >

> > The ped wanted us back in his office, so we went back, donated

some

> > more blood ( mono was negative )) have to wait for the EBV) and

> > sent us off with a rx for some anti-sickness suppositories as

pills

> > will not stay down him right now and instructions to call if he

gets

> > worse.

> > The big fear now is dehydration. He wanted to give him some IV

> > fluids, but I promised to faithfully get fluids in him. His

weight

> > is down to 46lbs (

> >

> > So, now im suppose to go try sleep as I worked all night and went

> > straight off to the appts today. Im due back at work in 7 hours

and

> > Im so wound up i'm not sure I will be able to sleep.

> >

> > I really dont know at this point if Nick will gte this remicade

on

> > Friday.

> >

> > Hugs Helen and (8,systemic)

> >

> >

> >

>

>

>

>

[Guest guest]

-Jo,

I got 3 hours... who needs more than that, right!

How did you get on today at YOUR appt. Please let us know, I was

hoping to read an update when i logged on.

hugs Helen and (8,systemic)

-- In , " Jo & Grant " <joking70@...> wrote:

>

> BIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIG Hugs Helen!

> I do hope you get/got some sleep my friend, as it is just crap

trying

> to deal with all this after sleepless nights (yep, had one of

those

> myself).

> Gosh I hope little Mr Nick recovers soon!!

>

> Jo

> Bayly, 4, Extended Oligo

>

>

> >> Nick was still vomiting this morning so I took him in again. He

> then > proceeded to vomit 4 times between getting to the doctors

> parking > lot and the appt room.

> > > He looked awful, had a headache and was dizzy. The doctor

looked

> him > over and started talking about brain bleeds and brain

tumors.

> Before > I knew it Nick was scheduled for am emergency brain CT. I

> have no > idea how I managed to hold it together and drive over to

> the > imagining center ( about 15 miles away). The fact that we

didnt

> even > have an appt and they were going to fit us in had me

freaking

> out. I > tried to call Alia to calm me down, but I forgot Evan was

> having his > surgery this morning.

> > > Thank god, after 2 hours we got the fantastic news that his

head

> was > fine. Im so glad it was read and reported back to the ped

while

> I waited. I dont think i could have handled coming home and

sitting

> by > a phone.

> > > The ped wanted us back in his office, so we went back, donated

> some > more blood ( mono was negative )) have to wait for the

EBV)

> and > sent us off with a rx for some anti-sickness suppositories

as

> pills > will not stay down him right now and instructions to call

if

> he gets > worse. > The big fear now is dehydration. He wanted to

> give him some IV > fluids, but I promised to faithfully get fluids

in

> him. His weight > is down to 46lbs (

> > > So, now im suppose to go try sleep as I worked all night and

went

> > straight off to the appts today. Im due back at work in 7 hours

and

> > m so wound up i'm not sure I will be able to sleep.

> > > I really dont know at this point if Nick will gte this

remicade on

> > Friday.

> > > Hugs Helen and (8,systemic)

>

[Guest guest]

Helen, Don't suggest to the pediatrician, insist. It sounds like

the pediatrician is in over his head. Another thought is to just

bring him to the ER where the rheumy works. Call the rheumy first,

and tell them that you are bringing Nick to the ER to be seen. If it

is only a bad case of the flu, so be it. It is better to be on the

safe side. Sorry for my language, but screw the mean nurse. She

shouldn't be in the health field. You need to get your little guy

feeling better. Take care, (n,17, systemic)

On Aug 1, 2006, at 6:42 PM, hburger64 wrote:

> -,

>

> No, I have not talked to the rheumy. Since the nurse was so rude

> when I called last time, Im a little gunshy to even talk to her

> again. If it was his old rheumy I would have called.

>

> We have an appt on friday, so I will be talking in full with the doc

> then. I hope by then Nick is doing better, although hes still

> throwing up now even with the trimethobenzamide supp on board.

>

> If hes still vomiting this much tomorrow we will be back in the peds

> office and i will suggest that the ped confers with the rheumy.

>

> thanks

>

> hugs Helen and (8,systemic)

>

> -- In , Price <bc.price@...> wrote:

> >

> > Hi Helen,

> >

> > I am sorry to hear about Nick. You probably already have done

> this,

> > but the one thing I have learned is to let the ped rheumy know

> > whenever n is sick. Even if it is a hangnail, I will let

> the

> > rheumy know and let him make the judgement call. I have found

> that

> > systemic kids are usually far too complicated for a

> pediatrician.

> > Nick will be in our prayers. (n, 17, systemic)

> >

> >

> > On Aug 1, 2006, at 12:46 PM, hburger64 wrote:

> >

> > > Nick was still vomiting this morning so I took him in again. He

> then

> > > proceeded to vomit 4 times between getting to the doctors parking

> > > lot and the appt room.

> > >

> > > He looked awful, had a headache and was dizzy. The doctor looked

> him

> > > over and started talking about brain bleeds and brain tumors.

> Before

> > > I knew it Nick was scheduled for am emergency brain CT. I have no

> > > idea how I managed to hold it together and drive over to the

> > > imagining center ( about 15 miles away). The fact that we didnt

> even

> > > have an appt and they were going to fit us in had me freaking

> out. I

> > > tried to call Alia to calm me down, but I forgot Evan was having

> his

> > > surgery this morning.

> > >

> > > Thank god, after 2 hours we got the fantastic news that his head

> was

> > > fine. Im so glad it was read and reported back to the ped while I

> > > waited. I dont think i could have handled coming home and

> sitting by

> > > a phone.

> > >

> > > The ped wanted us back in his office, so we went back, donated

> some

> > > more blood ( mono was negative )) have to wait for the EBV) and

> > > sent us off with a rx for some anti-sickness suppositories as

> pills

> > > will not stay down him right now and instructions to call if he

> gets

> > > worse.

> > > The big fear now is dehydration. He wanted to give him some IV

> > > fluids, but I promised to faithfully get fluids in him. His

> weight

> > > is down to 46lbs (

> > >

> > > So, now im suppose to go try sleep as I worked all night and went

> > > straight off to the appts today. Im due back at work in 7 hours

> and

> > > Im so wound up i'm not sure I will be able to sleep.

> > >

> > > I really dont know at this point if Nick will gte this remicade

> on

> > > Friday.

> > >

> > > Hugs Helen and (8,systemic)

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

excellent suggestions ...That nurse is an idiot if she doesn't

think that Nick's throwing up for days on end is worthy of at least

a phone consult with the doc. He is loosing weight, not keeping

anything down, and something is obviously wrong! I know that it

would be nice to hold out til your friday appt. but I personally

think that is way to far off for Nick...You just can't keep throwing

up that much for this long. I would go with 's advice and take

him to the er and notify the rheumy...If nothing else its probably

time for some iv fluids and chances are they need to run some more

tests...are his liver enzymes still ok...Something has to be out of

wack for him to still be this ill.

Hang in there Helen. I know you must be exhausted!

sonia (aundrea 11 systemic jra)

> > >

> > > > Nick was still vomiting this morning so I took him in again.

He

> > then

> > > > proceeded to vomit 4 times between getting to the doctors

parking

> > > > lot and the appt room.

> > > >

> > > > He looked awful, had a headache and was dizzy. The doctor

looked

> > him

> > > > over and started talking about brain bleeds and brain tumors.

> > Before

> > > > I knew it Nick was scheduled for am emergency brain CT. I

have no

> > > > idea how I managed to hold it together and drive over to the

> > > > imagining center ( about 15 miles away). The fact that we

didnt

> > even

> > > > have an appt and they were going to fit us in had me freaking

> > out. I

> > > > tried to call Alia to calm me down, but I forgot Evan was

having

> > his

> > > > surgery this morning.

> > > >

> > > > Thank god, after 2 hours we got the fantastic news that his

head

> > was

> > > > fine. Im so glad it was read and reported back to the ped

while I

> > > > waited. I dont think i could have handled coming home and

> > sitting by

> > > > a phone.

> > > >

> > > > The ped wanted us back in his office, so we went back,

donated

> > some

> > > > more blood ( mono was negative )) have to wait for the

EBV) and

> > > > sent us off with a rx for some anti-sickness suppositories as

> > pills

> > > > will not stay down him right now and instructions to call if

he

> > gets

> > > > worse.

> > > > The big fear now is dehydration. He wanted to give him some

IV

> > > > fluids, but I promised to faithfully get fluids in him. His

> > weight

> > > > is down to 46lbs (

> > > >

> > > > So, now im suppose to go try sleep as I worked all night and

went

> > > > straight off to the appts today. Im due back at work in 7

hours

> > and

> > > > Im so wound up i'm not sure I will be able to sleep.

> > > >

> > > > I really dont know at this point if Nick will gte this

remicade

> > on

> > > > Friday.

> > > >

> > > > Hugs Helen and (8,systemic)

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

n : Just checking on Holly. We've been really worried about her for we

haven't heard back from you. Please post either to the group or send me a

personal email. I know ne is anxious to hear from her and she also asked

if she could call her via telephone so the two of them could actually talk. Let

me know if that is a possibility.

thanks - Kim Summerhill & ne (12 yrs - Jra)

[Guest guest]

With what I went through getting diagnosed.....I agree with

. Push your way through the office staff/nurses if you have to in

order to get Nick seen by the doctor. I get so aggravated with nurses

and office staff who don't have the brains to think things through or

follow through.....you can't treat patients like another item on a " to

do list " ......drives me crazy!!! BIG CYBER-HUGS

(((((((Helen)))))))))))) (((((((((Nick)))))))))). Take care and try to

get some rest when you can.

Kathy

_____

From: [mailto: ] On

Behalf Of Price

Sent: Tuesday, August 01, 2006 10:20 PM

Subject: Re: Back from the Doctors.

Helen, Don't suggest to the pediatrician, insist. It sounds like

the pediatrician is in over his head. Another thought is to just

bring him to the ER where the rheumy works. Call the rheumy first,

and tell them that you are bringing Nick to the ER to be seen. If it

is only a bad case of the flu, so be it. It is better to be on the

safe side. Sorry for my language, but screw the mean nurse. She

shouldn't be in the health field. You need to get your little guy

feeling better. Take care, (n,17, systemic)

On Aug 1, 2006, at 6:42 PM, hburger64 wrote:

> -,

>

> No, I have not talked to the rheumy. Since the nurse was so rude

> when I called last time, Im a little gunshy to even talk to her

> again. If it was his old rheumy I would have called.

>

> We have an appt on friday, so I will be talking in full with the doc

> then. I hope by then Nick is doing better, although hes still

> throwing up now even with the trimethobenzamide supp on board.

>

> If hes still vomiting this much tomorrow we will be back in the peds

> office and i will suggest that the ped confers with the rheumy.

>

> thanks

>

> hugs Helen and (8,systemic)

>

> -- In <mailto: %40> ,

Price <bc.price@...> wrote:

> >

> > Hi Helen,

> >

> > I am sorry to hear about Nick. You probably already have done

> this,

> > but the one thing I have learned is to let the ped rheumy know

> > whenever n is sick. Even if it is a hangnail, I will let

> the

> > rheumy know and let him make the judgement call. I have found

> that

> > systemic kids are usually far too complicated for a

> pediatrician.

> > Nick will be in our prayers. (n, 17, systemic)

> >

> >

> > On Aug 1, 2006, at 12:46 PM, hburger64 wrote:

> >

> > > Nick was still vomiting this morning so I took him in again. He

> then

> > > proceeded to vomit 4 times between getting to the doctors parking

> > > lot and the appt room.

> > >

> > > He looked awful, had a headache and was dizzy. The doctor looked

> him

> > > over and started talking about brain bleeds and brain tumors.

> Before

> > > I knew it Nick was scheduled for am emergency brain CT. I have no

> > > idea how I managed to hold it together and drive over to the

> > > imagining center ( about 15 miles away). The fact that we didnt

> even

> > > have an appt and they were going to fit us in had me freaking

> out. I

> > > tried to call Alia to calm me down, but I forgot Evan was having

> his

> > > surgery this morning.

> > >

> > > Thank god, after 2 hours we got the fantastic news that his head

> was

> > > fine. Im so glad it was read and reported back to the ped while I

> > > waited. I dont think i could have handled coming home and

> sitting by

> > > a phone.

> > >

> > > The ped wanted us back in his office, so we went back, donated

> some

> > > more blood ( mono was negative )) have to wait for the EBV) and

> > > sent us off with a rx for some anti-sickness suppositories as

> pills

> > > will not stay down him right now and instructions to call if he

> gets

> > > worse.

> > > The big fear now is dehydration. He wanted to give him some IV

> > > fluids, but I promised to faithfully get fluids in him. His

> weight

> > > is down to 46lbs (

> > >

> > > So, now im suppose to go try sleep as I worked all night and went

> > > straight off to the appts today. Im due back at work in 7 hours

> and

> > > Im so wound up i'm not sure I will be able to sleep.

> > >

> > > I really dont know at this point if Nick will gte this remicade

> on

> > > Friday.

> > >

> > > Hugs Helen and (8,systemic)

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Helen, I wanted to give you my best wishes too although I do not post much. I

hope Nick gets the attention he deserves soon, and if I was you I would be

afraid of doing the remicade even if a doctor says go ahead. I hope you get

lots of support during this hard time and that you get answers and his health

returns soon. Our best, Jan and Louis, systemic age 7.

Re: Back from the Doctors.

Hugs Helen...........I hope your sleeping.............I will keep you guys

in my thoughts and prayers.............keep us posted, and Cindis idea about

calling the rheumie is a good one....it cant hurt at all....holly had 6

monospots that all came back negative, and it wasn't till her being hospitalized

and ebv titers done and returned (2 weeks later) did we find it was mono and a

touch of MAS......poor guy....hugs....

[Guest guest]

Kathy,

That's a good saying too. No one has power over you but YOU. Ummm well the

kids and make such a beautiful smile and that just melts your heart and we

have to give in. lololol. But a Adult is different. :-).

We should carry a camera and when someone is mean or sassy take a picture

of them lolol. Then send it to their boss and say please put this up so

everyone can see it. Put a caption under it and say something about it lololol.

Some places your suppose to smile at the customer's and if you don't you

get a free meal. lolololol

Robbin

[Guest guest]

Hi Kim..........you are just so sweet to keep track of all of us.....Holly

is having a rough time still, her feet, ankles, knees and hips are killing

her......she has had belly pain, and tonight nausea......still somewhat tired,

but not as much as she was when we were still in school and she didn't get as

much rest. We saw her rheumie about a month ago and he at that point upped

the enbrel, and also talked about switching her to kineret, and as i am sure

all of you know, she has a really hard time with injections, she is doing some

better with that now, that she has to have them twice a week, and i have told

her kineret is daily injections...........Its been a rough just shy of 2

years for her..........can't wait until we can find that magic cocktail again.

Talk to you soon.

n And Holly

(12 years old, 11 of those years with systemic jra)