maggie update

[Guest guest]

Nannette; what a wonderful update on Maggie. My one year old

grandaughter just had major surgery on Fri. and is doing well so far

also.

What a wonderful gift Medicine can give us. I'm sure your very happy

she is doing so well. We will still keep you and your family in

though and prayer, much luv, Melt

> Well that's the update on Maggie. Thank you to everyone who has

> contributed prayers. They really have made a difference. Thank you

for

> all your support.

>

> Nannette

>

>

>

[Guest guest]

Thanks to everyone for the support and prayers. Our family has been so

touched by it all. I wrote a story for Maggie that I read her this

weekend about Maggie's miracle. The miracle was people she didn't even

know giving their prayers and good thoughts to help her get better. She

really liked it. I liked it 'cause I got to refer to my oldest sister as

" venerable " ! Thanks again.

Nannette

Re: Maggie update

Nannette; what a wonderful update on Maggie. My one year old

grandaughter just had major surgery on Fri. and is doing well so far

also.

What a wonderful gift Medicine can give us. I'm sure your very happy

she is doing so well. We will still keep you and your family in

though and prayer, much luv, Melt

> Well that's the update on Maggie. Thank you to everyone who has

> contributed prayers. They really have made a difference. Thank you

for

> all your support.

>

> Nannette

>

>

>

[Guest guest]

sorry to hear that things are going this route. Know that you are in our

prayers,

Veri

Maggie update

Hello to all!

?

?? Sorry it has been so long since I have written. I try to read updates when I

get a chance, I will admit I am wayyyyy behind at the moment!

?

?? Maggie was admitted back into the hospital on Sunday. She has been dealing

with Hepatitis (inflamed liver) again and also pericarditis and pleurisy.

Because of her high liver enzymes we had to stop her MTX last Wednesday until

things calm down. That was when everything else decided to flare and one of the

ulcers on her hand became infected.

?

?? Her doctor's started her on IV antibiotics immediately and as of this morning

most of the redness surrounding the infected ulcer has calmed way down, the

infection is clearing up nicely but there is a huge hole now in the top of her

hand that is sitting wide open, hopefully with enough time this will heal

without becoming infected again!

?

?? Because of the rest of her organs and joints flaring Maggie has been

miserable. Every joint and every organ have decided to take part in this one,

none of the rest of her meds seem to be doing anything to help (or maybe this

would be much worse if she were not taking them who knows!) She is still

taking?two 100mg Kineret shots per day,?2000mgs of Cellcept per day, 80mgs of

oral Prednisone per day, 100mgs of Dapsone per day,30mgs of Procardia XL per

day,50 grams of IVIg every every other Tuesday and was taking the MTX injections

25mgs each week until this recent flare. This is along with a long list of other

meds that she takes because of other health reasons, some caused by

autoimmune/autoinflammatory disease and other due to other illnesses.

?

? Yesterday Maggie's Peds Rheumatologist decided to give her an IV infusion with

500mgs of Solumedrol, she is desperately trying to get this flare under

control!!? By last evening we were able to start seeing some small results from

this already, hopefully today will be even better for her. As a parent it is

very painful to see her when her joints are flaring but I will admit it scares

the heck out of me when her organs decide to chime in!!

?

? The plan is to switch Maggie from the two injections of Kineret each day to

another drug called Rilonacept. I have never heard of this med before and have

never really heard it mentioned by anyone here, are there any of you or your

children taking this injection?

?

? What I do know about it is the price tag on it which is 250,000.00. Her doctor

is working with our insurance company to try and get them to help pay for their

portion of this. (gulp!)

?

?? I know it is an I-L1 blocker, I know that Maggie's Cytokines are raging with

numbers thousands above the norm. I also know that Rilonacept is an orphan drug

or? the only one in it's class. But I know of no one who has ever taken it and

the long term side effects are still unknown.

?

? When she has a huge flare, her doctor's cannot judge by the normal markings

for a person with an autoimmune disease, she has to watch her Cytokines for her

markers. Maggie's disease's never seem to play by the rules!!

?

?? Hopefully she will get to go home tonight after she receive's her IVIg today.

She really hates being here. She is always such a good sport about everything

but she wants to go home!

?

??? Thanks guys for the ear!! I do update her carepage daily but that seems to

be about as far as I get sometimes. Things seem to be ever crazy around here!

?

? Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory diseas,Uveitis,

Primary Immunodeficiency)

? Allyson age 14 (Lupus)

?

?

?

[Guest guest]

I have never heard of this medication that they are considering for Maggie

but she, of course, is a very unique child in a very precarious state. I

REALLY hope that the medication is covered, paid for and that it helps

her!!!! It sounds like she is having a miserable time and thigns are really

stressful as well. It's sad how active her disease is and than just triggers

everything else off. I keep thinking that she might be the perfect candidate

for tautologous bone marrow transplant or one of those radical procedures

that have been done on a handful of children with rheumatic diseases around

the world. ??? Of couse, that has a load of risks and worries but this

disease cannot keep going as it is either!!! =(

How is her sister doing with the Lupus? What meds do they have her on and

how is she managing it along with maggie being in the hospital??

Anyways, keep hanging tough as I know you do and I do love seeing the

pictures of Maggie that are on the carepages site. I enjoy her big happy

smile that she has many times and just theobvious love and care you have for

your daughters.

Issadora

On Tue, Mar 31, 2009 at 6:04 PM, <veristroud@...> wrote:

> sorry to hear that things are going this route. Know that you are in our

> prayers,

>

> Veri

>

>

> Maggie update

>

> Hello to all!

> ?

> ?? Sorry it has been so long since I have written. I try to read updates

> when I get a chance, I will admit I am wayyyyy behind at the moment!

> ?

> ?? Maggie was admitted back into the hospital on Sunday. She has been

> dealing with Hepatitis (inflamed liver) again and also pericarditis and

> pleurisy. Because of her high liver enzymes we had to stop her MTX last

> Wednesday until things calm down. That was when everything else decided to

> flare and one of the ulcers on her hand became infected.

> ?

> ?? Her doctor's started her on IV antibiotics immediately and as of this

> morning most of the redness surrounding the infected ulcer has calmed way

> down, the infection is clearing up nicely but there is a huge hole now in

> the top of her hand that is sitting wide open, hopefully with enough time

> this will heal without becoming infected again!

> ?

> ?? Because of the rest of her organs and joints flaring Maggie has been

> miserable. Every joint and every organ have decided to take part in this

> one, none of the rest of her meds seem to be doing anything to help (or

> maybe this would be much worse if she were not taking them who knows!) She

> is still taking?two 100mg Kineret shots per day,?2000mgs of Cellcept per

> day, 80mgs of oral Prednisone per day, 100mgs of Dapsone per day,30mgs of

> Procardia XL per day,50 grams of IVIg every every other Tuesday and was

> taking the MTX injections 25mgs each week until this recent flare. This is

> along with a long list of other meds that she takes because of other health

> reasons, some caused by autoimmune/autoinflammatory disease and other due to

> other illnesses.

> ?

> ? Yesterday Maggie's Peds Rheumatologist decided to give her an IV infusion

> with 500mgs of Solumedrol, she is desperately trying to get this flare under

> control!!? By last evening we were able to start seeing some small results

> from this already, hopefully today will be even better for her. As a parent

> it is very painful to see her when her joints are flaring but I will admit

> it scares the heck out of me when her organs decide to chime in!!

> ?

> ? The plan is to switch Maggie from the two injections of Kineret each day

> to another drug called Rilonacept. I have never heard of this med before and

> have never really heard it mentioned by anyone here, are there any of you or

> your children taking this injection?

> ?

> ? What I do know about it is the price tag on it which is 250,000.00. Her

> doctor is working with our insurance company to try and get them to help pay

> for their portion of this. (gulp!)

> ?

> ?? I know it is an I-L1 blocker, I know that Maggie's Cytokines are raging

> with numbers thousands above the norm. I also know that Rilonacept is an

> orphan drug or? the only one in it's class. But I know of no one who has

> ever taken it and the long term side effects are still unknown.

> ?

> ? When she has a huge flare, her doctor's cannot judge by the normal

> markings for a person with an autoimmune disease, she has to watch her

> Cytokines for her markers. Maggie's disease's never seem to play by the

> rules!!

> ?

> ?? Hopefully she will get to go home tonight after she receive's her IVIg

> today. She really hates being here. She is always such a good sport about

> everything but she wants to go home!

> ?

> ??? Thanks guys for the ear!! I do update her carepage daily but that seems

> to be about as far as I get sometimes. Things seem to be ever crazy around

> here!

> ?

> ? Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory

> diseas,Uveitis, Primary Immunodeficiency)

> ? Allyson age 14 (Lupus)

> ?

> ?

> ?

>

>

[Guest guest]

We keep Maggie and you in our prayers. We are hoping for a turn-around soon as

we know you are.

Ruth in TN

>  

>    Sorry it has been so long since I have written. I try to read updates when

I get a chance, I will admit I am wayyyyy behind at the moment!

>  

>    Maggie was admitted back into the hospital on Sunday.

[Guest guest]

So sorry to hear about Maggie's challenges. I will be praying for her to get to

come home, and to be better very soon. Kymberli

>

>

> Hello to all!

>  

>    Sorry it has been so long since I have written. I try to read updates when

I get a chance, I will admit I am wayyyyy behind at the moment!

>  

>    Maggie was admitted back into the hospital on Sunday. She has been dealing

with Hepatitis (inflamed liver) again and also pericarditis and pleurisy.

Because of her high liver enzymes we had to stop her MTX last Wednesday until

things calm down. That was when everything else decided to flare and one of the

ulcers on her hand became infected.

>  

>    Her doctor's started her on IV antibiotics immediately and as of this

morning most of the redness surrounding the infected ulcer has calmed way down,

the infection is clearing up nicely but there is a huge hole now in the top of

her hand that is sitting wide open, hopefully with enough time this will heal

without becoming infected again!

>  

>    Because of the rest of her organs and joints flaring Maggie has been

miserable. Every joint and every organ have decided to take part in this one,

none of the rest of her meds seem to be doing anything to help (or maybe this

would be much worse if she were not taking them who knows!) She is still

taking two 100mg Kineret shots per day, 2000mgs of Cellcept per day, 80mgs of

oral Prednisone per day, 100mgs of Dapsone per day,30mgs of Procardia XL per

day,50 grams of IVIg every every other Tuesday and was taking the MTX injections

25mgs each week until this recent flare. This is along with a long list of other

meds that she takes because of other health reasons, some caused by

autoimmune/autoinflammatory disease and other due to other illnesses.

>  

>   Yesterday Maggie's Peds Rheumatologist decided to give her an IV infusion

with 500mgs of Solumedrol, she is desperately trying to get this flare under

control!!  By last evening we were able to start seeing some small results from

this already, hopefully today will be even better for her. As a parent it is

very painful to see her when her joints are flaring but I will admit it scares

the heck out of me when her organs decide to chime in!!

>  

>   The plan is to switch Maggie from the two injections of Kineret each day to

another drug called Rilonacept. I have never heard of this med before and have

never really heard it mentioned by anyone here, are there any of you or your

children taking this injection?

>  

>   What I do know about it is the price tag on it which is 250,000.00. Her

doctor is working with our insurance company to try and get them to help pay for

their portion of this. (gulp!)

>  

>    I know it is an I-L1 blocker, I know that Maggie's Cytokines are raging

with numbers thousands above the norm. I also know that Rilonacept is an orphan

drug or  the only one in it's class. But I know of no one who has ever taken it

and the long term side effects are still unknown.

>  

>   When she has a huge flare, her doctor's cannot judge by the normal markings

for a person with an autoimmune disease, she has to watch her Cytokines for her

markers. Maggie's disease's never seem to play by the rules!!

>  

>    Hopefully she will get to go home tonight after she receive's her IVIg

today. She really hates being here. She is always such a good sport about

everything but she wants to go home!

>  

>     Thanks guys for the ear!! I do update her carepage daily but that seems to

be about as far as I get sometimes. Things seem to be ever crazy around here!

>  

>   Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory

diseas,Uveitis, Primary Immunodeficiency)

>   Allyson age 14 (Lupus)

>  

>  

>  

>

>

>

>

>

[Guest guest]

Just read your update at Carepages and am so glad Maggie is home. I hope

the new med will be the one. We are all praying for that miracle!

Loved the pics from the concert - Maggie looks like she had the time of

her life. What a great experience for her.

Hugs and prayers to you all, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of hockeytough@...

Sent: Tuesday, March 31, 2009 8:47 AM

Subject: Maggie update

Hello to all!

Sorry it has been so long since I have written. I try to read updates

when I get a chance, I will admit I am wayyyyy behind at the moment!

Maggie was admitted back into the hospital on Sunday. She has been

dealing with Hepatitis (inflamed liver) again and also pericarditis and

pleurisy. Because of her high liver enzymes we had to stop her MTX last

Wednesday until things calm down. That was when everything else decided

to flare and one of the ulcers on her hand became infected.

Her doctor's started her on IV antibiotics immediately and as of this

morning most of the redness surrounding the infected ulcer has calmed

way down, the infection is clearing up nicely but there is a huge hole

now in the top of her hand that is sitting wide open, hopefully with

enough time this will heal without becoming infected again!

Because of the rest of her organs and joints flaring Maggie has been

miserable. Every joint and every organ have decided to take part in this

one, none of the rest of her meds seem to be doing anything to help (or

maybe this would be much worse if she were not taking them who knows!)

She is still taking two 100mg Kineret shots per day, 2000mgs of Cellcept

per day, 80mgs of oral Prednisone per day, 100mgs of Dapsone per

day,30mgs of Procardia XL per day,50 grams of IVIg every every other

Tuesday and was taking the MTX injections 25mgs each week until this

recent flare. This is along with a long list of other meds that she

takes because of other health reasons, some caused by

autoimmune/autoinflammatory disease and other due to other illnesses.

Yesterday Maggie's Peds Rheumatologist decided to give her an IV

infusion with 500mgs of Solumedrol, she is desperately trying to get

this flare under control!! By last evening we were able to start seeing

some small results from this already, hopefully today will be even

better for her. As a parent it is very painful to see her when her

joints are flaring but I will admit it scares the heck out of me when

her organs decide to chime in!!

The plan is to switch Maggie from the two injections of Kineret each

day to another drug called Rilonacept. I have never heard of this med

before and have never really heard it mentioned by anyone here, are

there any of you or your children taking this injection?

What I do know about it is the price tag on it which is 250,000.00.

Her doctor is working with our insurance company to try and get them to

help pay for their portion of this. (gulp!)

I know it is an I-L1 blocker, I know that Maggie's Cytokines are

raging with numbers thousands above the norm. I also know that

Rilonacept is an orphan drug or the only one in it's class. But I know

of no one who has ever taken it and the long term side effects are still

unknown.

When she has a huge flare, her doctor's cannot judge by the normal

markings for a person with an autoimmune disease, she has to watch her

Cytokines for her markers. Maggie's disease's never seem to play by the

rules!!

Hopefully she will get to go home tonight after she receive's her

IVIg today. She really hates being here. She is always such a good sport

about everything but she wants to go home!

Thanks guys for the ear!! I do update her carepage daily but that

seems to be about as far as I get sometimes. Things seem to be ever

crazy around here!

Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory

diseas,Uveitis, Primary Immunodeficiency)

Allyson age 14 (Lupus)

[Guest guest]

Hi Michele,Izzy and All that have sent emails with prayers and kind words!

    Thanks!! I can promise you that she is VERY happy to be home too!  I didn't

think we were going to get to leave as no one was on the same page until Dr.

Polly (her peds Rheumy) gave them all a gentle push. There was nothing more that

they were going to do for her there that I can not do for her at home, with less

germs and infection lurking around!! Even if we got home at 10pm last evening,

we were able to sleep in our own beds!

    Our insurance company approved the Rilonacept for her this morning. It seems

as if we always have to jump through hoops to get what it is that Maggie needs,

Thank God she has such a wonderful support system that is more than willing to

go to bat for her for things like this, they will cover the 250,000.00 med at

100%.

   What her doctor's are looking for is an autoinflammatory in the CAPS family.

(something like Muckle Wells Syndrome) not a pleasent diagnosis but if they can

pinpoint it they can help her in more ways than they are now, this does not

replace all of the diagnosis's she already has, just adds to the already

overlapping mess that already exists. Possibly though there is something better

out there to add to her daily cocktail of meds that would work much better. They

were holding her MTX but gave that back to her today, her liver is not changing

with or without the drug.

    Maggie will also have to have a Liver Biopsy, this will tell them more

information about her disease. She is not at all thrilled about this but we have

been putting it off for quite awhile and her doctor's need this information so

that they can try and help her.  She isn't afraid....just mad that it has to be

done at all and she MIGHT have to miss another day of sled hockey!!  Silly

Girl!!

    I need to thank , I hope she is reading this too!! She called Maggie

while she was in the hospital and brought a huge smile to her face!!  That was

such a nice surprise for her to get a phone call from a friend.....Grandma's

calls are awesome but, well.....Grandma's are supposed to do things like that!  

Apparently Poor Hannah was trying to send her an instant message too, we were

packing and were not paying attention and completely missed her! I apologize for

that, Maggie would have loved to chat with her!

    Tomorrow we start with her first injection of Rilonacept, we are running out

of options but still have not run out of hope!  A BMT is waiting in the wings

for Maggie if we cannot find another way to help her. I would prefer to bypass

that at all costs if we can, if nothing else works for her that will be an

option for her. 

    In the meantime while Maggie was in the hospital naturally Allyson decided

to get sick. She was running a temp of 105 and was diagnosed with Influenza.

They started her on meds right away to lesson the side effects and she responded

well, she is much better today. Ally has responded nicely to Plaquinal and MTX

and is now weaning off of the Prednisone without any new flares or joint pain. 

   Sorry for one long combined email, I am trying to clean up my house from the

aftermath of the Tornado that came through Walcott while Maggie was in the

hospital!!  It only hit the inside of our house......no one was injured (pets or

people) just dishes thrown everywhere along with dirty laundry (mixed in with

the clean) , blankets, pillows and jammies down on the couches........apparently

kids were thrown into the living room in front of the TV during the storm too!!

  Thanks for all of the prayers and kind words!  Hopefully we can stay home for

awhile now!

   With love,

   Diane and Maggie age 11 (OI,CP,Autoimmue/Autoinflammatory

disease,Uveitis,Primary Immunodeficiency)

   Allyson age 14 (Lupus)

  

From: Tepper, Michele <MTepper@...>

Subject: RE: Maggie update

Date: Wednesday, April 1, 2009, 5:44 PM

Just read your update at Carepages and am so glad Maggie is home. I

hope

the new med will be the one. We are all praying for that miracle!

Loved the pics from the concert - Maggie looks like she had the time of

her life. What a great experience for her.

Hugs and prayers to you all, Michele ( 21, spondy)

____________ _________ _________ __

From: @group s.com [mailto: @group s.com] On

Behalf Of hockeytough

Sent: Tuesday, March 31, 2009 8:47 AM

@group s.com

Subject: Maggie update

Hello to all!

Sorry it has been so long since I have written. I try to read updates

when I get a chance, I will admit I am wayyyyy behind at the moment!

Maggie was admitted back into the hospital on Sunday. She has been

dealing with Hepatitis (inflamed liver) again and also pericarditis and

pleurisy. Because of her high liver enzymes we had to stop her MTX last

Wednesday until things calm down. That was when everything else decided

to flare and one of the ulcers on her hand became infected.

Her doctor's started her on IV antibiotics immediately and as of this

morning most of the redness surrounding the infected ulcer has calmed

way down, the infection is clearing up nicely but there is a huge hole

now in the top of her hand that is sitting wide open, hopefully with

enough time this will heal without becoming infected again!

Because of the rest of her organs and joints flaring Maggie has been

miserable. Every joint and every organ have decided to take part in this

one, none of the rest of her meds seem to be doing anything to help (or

maybe this would be much worse if she were not taking them who knows!)

She is still taking two 100mg Kineret shots per day, 2000mgs of Cellcept

per day, 80mgs of oral Prednisone per day, 100mgs of Dapsone per

day,30mgs of Procardia XL per day,50 grams of IVIg every every other

Tuesday and was taking the MTX injections 25mgs each week until this

recent flare. This is along with a long list of other meds that she

takes because of other health reasons, some caused by

autoimmune/autoinfl ammatory disease and other due to other illnesses.

Yesterday Maggie's Peds Rheumatologist decided to give her an IV

infusion with 500mgs of Solumedrol, she is desperately trying to get

this flare under control!! By last evening we were able to start seeing

some small results from this already, hopefully today will be even

better for her. As a parent it is very painful to see her when her

joints are flaring but I will admit it scares the heck out of me when

her organs decide to chime in!!

The plan is to switch Maggie from the two injections of Kineret each

day to another drug called Rilonacept. I have never heard of this med

before and have never really heard it mentioned by anyone here, are

there any of you or your children taking this injection?

What I do know about it is the price tag on it which is 250,000.00.

Her doctor is working with our insurance company to try and get them to

help pay for their portion of this. (gulp!)

I know it is an I-L1 blocker, I know that Maggie's Cytokines are

raging with numbers thousands above the norm. I also know that

Rilonacept is an orphan drug or the only one in it's class. But I know

of no one who has ever taken it and the long term side effects are still

unknown.

When she has a huge flare, her doctor's cannot judge by the normal

markings for a person with an autoimmune disease, she has to watch her

Cytokines for her markers. Maggie's disease's never seem to play by the

rules!!

Hopefully she will get to go home tonight after she receive's her

IVIg today. She really hates being here. She is always such a good sport

about everything but she wants to go home!

Thanks guys for the ear!! I do update her carepage daily but that

seems to be about as far as I get sometimes. Things seem to be ever

crazy around here!

Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory

diseas,Uveitis, Primary Immunodeficiency)

Allyson age 14 (Lupus)

[Guest guest]

Diane,

I am so glad to hear that Maggie is home. I had hoped to email earlier, but I

have been under the weather all day. I hope this new medication is the miracle

you all are looking for. What a trooper Maggie is. =)

I'm also glad to hear that Ally is doing good on her medications.

I will keep you all in my prayers.

>

> From: Tepper, Michele <MTepper@...>

> Subject: RE: Maggie update

>

> Date: Wednesday, April 1, 2009, 5:44 PM

>

>

>

>

>

>

>

>

>

>

>

>

> Just read your update at Carepages and am so glad Maggie is home.

I hope

>

> the new med will be the one. We are all praying for that miracle!

>

>

>

> Loved the pics from the concert - Maggie looks like she had the time of

>

> her life. What a great experience for her.

>

>

>

> Hugs and prayers to you all, Michele ( 21, spondy)

>

>

>

> ____________ _________ _________ __

>

>

>

> From: @group s.com [mailto: @group s.com] On

>

> Behalf Of hockeytough

>

> Sent: Tuesday, March 31, 2009 8:47 AM

>

> @group s.com

>

> Subject: Maggie update

>

>

>

> Hello to all!

>

>

>

> Sorry it has been so long since I have written. I try to read updates

>

> when I get a chance, I will admit I am wayyyyy behind at the moment!

>

>

>

> Maggie was admitted back into the hospital on Sunday. She has been

>

> dealing with Hepatitis (inflamed liver) again and also pericarditis and

>

> pleurisy. Because of her high liver enzymes we had to stop her MTX last

>

> Wednesday until things calm down. That was when everything else decided

>

> to flare and one of the ulcers on her hand became infected.

>

>

>

> Her doctor's started her on IV antibiotics immediately and as of this

>

> morning most of the redness surrounding the infected ulcer has calmed

>

> way down, the infection is clearing up nicely but there is a huge hole

>

> now in the top of her hand that is sitting wide open, hopefully with

>

> enough time this will heal without becoming infected again!

>

>

>

> Because of the rest of her organs and joints flaring Maggie has been

>

> miserable. Every joint and every organ have decided to take part in this

>

> one, none of the rest of her meds seem to be doing anything to help (or

>

> maybe this would be much worse if she were not taking them who knows!)

>

> She is still taking two 100mg Kineret shots per day, 2000mgs of Cellcept

>

> per day, 80mgs of oral Prednisone per day, 100mgs of Dapsone per

>

> day,30mgs of Procardia XL per day,50 grams of IVIg every every other

>

> Tuesday and was taking the MTX injections 25mgs each week until this

>

> recent flare. This is along with a long list of other meds that she

>

> takes because of other health reasons, some caused by

>

> autoimmune/autoinfl ammatory disease and other due to other illnesses.

>

>

>

> Yesterday Maggie's Peds Rheumatologist decided to give her an IV

>

> infusion with 500mgs of Solumedrol, she is desperately trying to get

>

> this flare under control!! By last evening we were able to start seeing

>

> some small results from this already, hopefully today will be even

>

> better for her. As a parent it is very painful to see her when her

>

> joints are flaring but I will admit it scares the heck out of me when

>

> her organs decide to chime in!!

>

>

>

> The plan is to switch Maggie from the two injections of Kineret each

>

> day to another drug called Rilonacept. I have never heard of this med

>

> before and have never really heard it mentioned by anyone here, are

>

> there any of you or your children taking this injection?

>

>

>

> What I do know about it is the price tag on it which is 250,000.00.

>

> Her doctor is working with our insurance company to try and get them to

>

> help pay for their portion of this. (gulp!)

>

>

>

> I know it is an I-L1 blocker, I know that Maggie's Cytokines are

>

> raging with numbers thousands above the norm. I also know that

>

> Rilonacept is an orphan drug or the only one in it's class. But I know

>

> of no one who has ever taken it and the long term side effects are still

>

> unknown.

>

>

>

> When she has a huge flare, her doctor's cannot judge by the normal

>

> markings for a person with an autoimmune disease, she has to watch her

>

> Cytokines for her markers. Maggie's disease's never seem to play by the

>

> rules!!

>

>

>

> Hopefully she will get to go home tonight after she receive's her

>

> IVIg today. She really hates being here. She is always such a good sport

>

> about everything but she wants to go home!

>

>

>

> Thanks guys for the ear!! I do update her carepage daily but that

>

> seems to be about as far as I get sometimes. Things seem to be ever

>

> crazy around here!

>

>

>

> Diane and Maggie age 11 (OI,CP, Systemic JIA, Autoinflammatory

>

> diseas,Uveitis, Primary Immunodeficiency)

>

> Allyson age 14 (Lupus)

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Day 17 In The PICU

Posted 7 hours ago

Good Evening Carepage Family,

Well Maggie got herself out of the entire Liver Biopsy discussion between last

night and today, now things have switched over the a whole group of new

topics.....Her Kidneys,her high blood presssure, her fever and the fact that her

kidney culture came back with negative rods growing in it again.

The Cyclosporine that Maggie has only had two doses of is going to be a " NO GO " ,

as far as her kidneys are concerned. They are not tolerating the drug. Not sure

if it is the drug alone or the fact that they are now sick and infected too, no

one is willing to take any chances right now as her kidneys are

failing.....there has been much talk of dialysis over the last two days instead.

They have also been considering blasting her with Chemo too, this may be what it

takes to keep her immune system from causing her very angry liver to completely

fail. Sadly enough it is beginning to seem like the harder she fights the more

she gets thrown at her to deal with.

With blood pressures as high as 189 over 128 she now feeling miserable on top of

already being miserable. Poor Maggie, she gets up to use the bathroom but that

is about it. She leaves on her BIPAP and stays very still in one spot. If she

moves her enlarged liver causes her discomfort, if she lies still it pushes up

on her diaphram making her feel very short of breath, so when she breathes in

she makes a grunting sound. Just when I think I have never seen Maggie so sick,

she proves me wrong and gets even sicker. It breaks my heart to know that the

best we can do is what we are doing for the moment and that still just doesn't

ever feel like it is good enough.

Maggie had a positive change in her care plan today, she will not be seeing the

residents any longer except for on the weekends. She will now have a Nurse

Practitioner in the residents place. This will allow Maggie's care to be a whole

lot more precise, not too mention consistant. Things can sometimes get just a

little " TENSE " up here in the Pediatric Intensive Care Unit when there are too

many Chiefs and not enough Indians.

As sick as Maggie is right now she did have one moment that was a total

& quot;Maggie & quot; moment this morning. Naturally it was time once again to

change Intensivist doctors. (Rheumatology is still in charge but she does have

to see an intensivist to help with other stuff that she now needs). This very

kind gentleman came in and introduced himself to Maggie, he had a very heavy

accent from whatever country he is from (I am guessing somewhere in the middle

east) he asked her how she was doing.......I could almost see Maggie's wheels

turning as she could barely hold up her own head, she

says.....I...FEEL....LIKE.....CRAP!! The doctor took a little step back from her

bed, tilted his head to the side and asked Maggie if she could PLEASE DEFINE

CRAP for him!!! AHHHH he too will learn VERY fast to speak the American

language. ( Maggie Style!!)

Dr. Polly is on this weekend so that POOR Dr.Hong can have a much needed and

over due break. Maggie loves Dr. Hong but she always loves seeing Dr. Polly too.

I have to admit I love the fact that Maggie has not one but two Pediatric

Rheumatologists.She really does have the best of both worlds as far as that

goes, I only wish she didn't have to be so sick that she required two heads

constantly thinking at all times to get her through. That is just the

Rheumatology issues, she then has the rest of the team trying to do all that

they can for her too. Behcets has proven to be a very aggressive

autoimmune/autoinflammatory disease for Maggie. Having only learned it's name

less than one year ago I now also know EVERY one of it's items on the list that

it is capable of because Maggie has presented ALL of them, one right after the

other.

Thank all of you so much for the encouragement and prayers that you send to

Maggie and the rest of our family. Right now everything is so very uncertain

that we never know what the next day will bring. We do know that every day that

we have with Maggie is one that we should cherish. All of us know for a fact,

just how precious life can be.

[Guest guest]

Thank you SO much for the update.

My prayers are wearing God out.

~osh

From: ajaoky@... <ajaoky@...>

Subject: maggie update

, ajao_young_adults ,

kaki217@...

Date: Saturday, September 19, 2009, 4:39 AM

Day 17 In The PICU

Posted 7 hours ago

Good Evening Carepage Family,

Well Maggie got herself out of the entire Liver Biopsy discussion between last

night and today, now things have switched over the a whole group of new

topics.....Her Kidneys,her high blood presssure, her fever and the fact that her

kidney culture came back with negative rods growing in it again.

The Cyclosporine that Maggie has only had two doses of is going to be a " NO GO " ,

as far as her kidneys are concerned. They are not tolerating the drug. Not sure

if it is the drug alone or the fact that they are now sick and infected too, no

one is willing to take any chances right now as her kidneys are

failing.....there has been much talk of dialysis over the last two days instead.

They have also been considering blasting her with Chemo too, this may be what it

takes to keep her immune system from causing her very angry liver to completely

fail. Sadly enough it is beginning to seem like the harder she fights the more

she gets thrown at her to deal with.

With blood pressures as high as 189 over 128 she now feeling miserable on top of

already being miserable. Poor Maggie, she gets up to use the bathroom but that

is about it. She leaves on her BIPAP and stays very still in one spot. If she

moves her enlarged liver causes her discomfort, if she lies still it pushes up

on her diaphram making her feel very short of breath, so when she breathes in

she makes a grunting sound. Just when I think I have never seen Maggie so sick,

she proves me wrong and gets even sicker. It breaks my heart to know that the

best we can do is what we are doing for the moment and that still just doesn't

ever feel like it is good enough.

Maggie had a positive change in her care plan today, she will not be seeing the

residents any longer except for on the weekends. She will now have a Nurse

Practitioner in the residents place. This will allow Maggie's care to be a whole

lot more precise, not too mention consistant. Things can sometimes get just a

little " TENSE " up here in the Pediatric Intensive Care Unit when there are too

many Chiefs and not enough Indians.

As sick as Maggie is right now she did have one moment that was a total

& quot;Maggie & quot; moment this morning. Naturally it was time once again to

change Intensivist doctors. (Rheumatology is still in charge but she does have

to see an intensivist to help with other stuff that she now needs). This very

kind gentleman came in and introduced himself to Maggie, he had a very heavy

accent from whatever country he is from (I am guessing somewhere in the middle

east) he asked her how she was doing.......I could almost see Maggie's wheels

turning as she could barely hold up her own head, she

says.....I...FEEL....LIKE.....CRAP!! The doctor took a little step back from her

bed, tilted his head to the side and asked Maggie if she could PLEASE DEFINE

CRAP for him!!! AHHHH he too will learn VERY fast to speak the American

language. ( Maggie Style!!)

Dr. Polly is on this weekend so that POOR Dr.Hong can have a much needed and

over due break. Maggie loves Dr. Hong but she always loves seeing Dr. Polly too.

I have to admit I love the fact that Maggie has not one but two Pediatric

Rheumatologists.She really does have the best of both worlds as far as that

goes, I only wish she didn't have to be so sick that she required two heads

constantly thinking at all times to get her through. That is just the

Rheumatology issues, she then has the rest of the team trying to do all that

they can for her too. Behcets has proven to be a very aggressive

autoimmune/autoinflammatory disease for Maggie. Having only learned it's name

less than one year ago I now also know EVERY one of it's items on the list that

it is capable of because Maggie has presented ALL of them, one right after the

other.

Thank all of you so much for the encouragement and prayers that you send to

Maggie and the rest of our family. Right now everything is so very uncertain

that we never know what the next day will bring. We do know that every day that

we have with Maggie is one that we should cherish. All of us know for a fact,

just how precious life can be.