RE: Update on sasha

March 7, 2006

In a message dated 3/7/06 11:04:37 AM Central Standard Time,

monicalsalinas@... writes:

> taking 1000 mg solumedrol via iv twice a week, prednisone 20 mg a day,

> metroxetate 15 mg a week, and enbrel 25 mg twice a week, The Dr decided

finally

> to remove her pick line and decreasing her solumedrol to once a week and then

> discontinue after two weeks, and the same with prednisone

Sorry if I am mistaken but are you saying after 5 months of 2000mg solumedrol

and 140mg or oral pred a week they plan on tapering and discontinuing within

2 weeks.

I am by no meens a Dr but I am a mom of a systemic child that spent 21 months

on oral prednisilone and the last 5 months was tapering off the last 3mg.The

reason it was so slow was to prevent steroid withdrawl and the complications

of having adrenal glands unable to produce enough cortisol on their own.

I would do some research on steroid withdrawl and form your own opinion but

to me this is VERY dangerous and I would question your ped rheumy.

As far as having a systemic child on MTX and Enbrel and doing just fine thats

my .No NSAIDS either,he's been off the pred since Feb 14 2003.

If you Google my name (Becki Larson) a link to 's story is the very 1st

one you will see.The story was done by the PR dept at Cincinnati Childrens

Hospital.

I hope the pain and fevers do not return.

Hugs

Becki and 7 systemic

March 7, 2006

Hi:

Im new to the group and yesterday we went to see Sasha's Pedi

rheumatologyst(my 14 yr old daughter with dignosis of onset systemic JRA) she

had a pick line for 5 mos taking 1000 mg solumedrol via iv twice a week,

prednisone 20 mg a day, metroxetate 15 mg a week, and enbrel 25 mg twice a week,

The Dr decided finally to remove her pick line and decreasing her solumedrol to

once a week and then discontinue after two weeks, and the same with prednisone,

my fear is for her to get the terrible symptoms again if she's not longer on

solumedrol, DID ANYONE HAVE A CHILD I A SIMILAR SITUATION WHO'S ONLY ON ENBREL

AND METROXETATE TO PREVENT THE SYMPTOMS???

I'M AFRAID BECAUSE SHE STARTED SCHOOL TODAY AFTER 5 MOS IN HOME BOUND SCHOOL

AND I DON'T WANNA SEE HER AGAIN IN TERRIBLE PAIN AND HIGH

FEVER,,,,,,,,,,,,,,,,,,,,,,,,,

carneyval@... wrote:

Hi Christene,

Too much pain to be JRA? Too sick to be JRA? If you could see my face you

would be able to see that I am still unable to close my mouth and my eyebrows

are probably up near my hairline.

However, it is very important to rule out (or correctly diagnose leukemia) to be

sure that receives the proper treatment - so please don't think that I

question that part of the doctors plan. But I would be inclined to question

whether or not your pedi rheumatologist is indeed a pedi rheumatologist - if he

or she really is, then I would next question how many systemic onset patients he

or she has treated, as well as how much experience he or she has actually had

treating chrildren with arthritis.

Leukemia was one of the illnesses/diseases ruled out when my Robbie was first so

deathly ill. He was also admitted with probable MAS. (Macrophage Activation

Syndrome) He was three, almost four years old. He couldn't stand to be touched

- but was in too much pain to try to walk - at 3 he was problem solving and

decided that If I wrapped him in a blanket it would be less painful for him to

be carried.

When Robbie was admitted for the second time with his JRA symtptoms (this was

the admission where the final diagnosis was made) - he was lethargic, anemic,

unable to move on his own, didn't want to be touched due to the pain, his liver

and spleen were enlarged significantly, he had inflammation in his lungs and

around his heart. He had conjunctivits, tonsilitis and appeared to have an ear

infection. There wasn't a part of him that wasn't affected by this horrible

disease. He had several inflammed joints as well - but has been admitted with

strictly systemic symptoms, with pain all over, but no noticable inflammation in

his joints. Too much pain? I still can't get over that comment. It makes me

think that the doctor truly has no idea what children with arthritis go through.

Too sick. Someone needs to tell that doctor that children die from

complications of systemic onset JRA. That doctor should have witnessed my baby

waking screaming in the middle of the night with pain in

his elbos - and all over - and listened to him cry as I held him and rocked him

waiting for his pediatrian's office to open, praying that the 104.5 fever would

break soon. Too sick? Give me a break.

Chistene, please know that it is very hard to diagnose, and the doc does need to

consider all possibilities. You and are in my prayers.

Val

Rob's Mom (8,systemic)

Re: Update on

The Pediatric Rheumy doctor felt that was in too much pain to have JRA and

had a Pediatric Hematology/Oncology look at him. She too felt that he was too

sick acting to have arthritis so once again another blood test and an ultrasound

was done on him to check for tumors/masses and see if he's showing any signs of

leukemia. His liver and spleen or pancreas were enlarged and he's more anemic

than he was a week ago. The good news is that the test didn't show any signs of

leukemia as of yet but is going to have the bone marrow test on Monday morning

at 9:00. I really don't know at this point what to think but my heart " hurt " .

Never in my wildest dream would I have thought he might have " cancer " . I guess

right now we just have to pray for . Did any of your kids acted sickly but

still had JRA? Well just want to let you know what happened...will give you the

updates on Monday.

veristroud@... wrote: We had our appointment with the endocrinologist

today. He does not think

's problems are thyroid related but did take more blood to be sure he can

completely rule that out. After seeing 's foot purple for nearly a full

day I again called her neurologist to see if there was any chance her seizure

med's could be causing some of her problems. She has been on them for so

long and I just wonder. When he called me back last night he has decided to

wean her off of both of her seizure med's. She has not had a seizure for several

years and he was planning to start weaning her off them in April at our next

appt. any way. So he decided to start now. He does not think these med's are

the cause of her problems but does think it is possible that they could

contribute to the JRA problems. So we begin a fairly rapid decrease in her

meds.

She has been on Depakote for six years and we will take her off in 10 days.

I trust her neurologist completely but it is a bit scary taking her off it

that quickly. As long as she tolerates that well we will then begin to wean

her off of her Keppra. The Ped. office called back today and we do not know

when she will get into the oncologist yet but should know something by Monday.

With all the troubles we have been having they seem to think we should be

able to get in real soon. has had two good days compared to the last

few

weeks. She is still very stiff and sore but her smile is back and she has a

bit more energy then she has for a while. Every little bit is encouraging. I

do ask for prayers for her as she goes off the seizure med's and as we go to

see the oncologist.

Veri & Jaye 12 poly

March 7, 2006

Hi ,

I would make sure that I understood the plan for the PO taper of the steriods.

When my son was on extremely high levels of po steriods (over 60 mg daily) the

initial drops were as high as 50%, but the smaller the number the smaller the

percentage drop done. The body does become accustomed to the steriods,and the

adrenal glands do need a chance to pick up production. After 5 months, it would

be wise to do a relatively slow taper. My son has had several solumedrol

infusions over the years - but never more than weekly over a 4 - 5 week period -

hmmm, except for the last admission where he had daily infusions for several

days - though there didn't seem to be a problem with stopping and going home -

though he was on a high dose of po steriods at the time.

Discuss your concerns with the physician & and ask them what signs to watch for.

If Sasha begins to have flare symptoms as you are doing the taper, then contact

the physician prior to making the next drop - he or she may want you to wait a

little longer in between drops in the dosage, or make the changes in a smaller

amount.

When tapering, with Robbie I found that his mood swings were much worse than

when he was on the constant high dose - the body reacts in a lot of different

ways - and even at small amounts - a drop from about 6 mg to 5mg a day would

result in mood swings as severe as when he was first on the steriods - but they

would subside thankfully relatively quickly as his body adjusted.

Long term steriod use does create a lot of problems - and like many here, my son

is experiencing many of the problems. Currently his adrenal glands are non

functional - based on a stim test, and he needs a medic alert bracelet to ensure

that in an emergent situation that those who would be treating him understand

this. According to the endocrinologist Robbie's current 3mg po dose is equal to

the amount his body would be producing daily on it's own under normal

circumstances - but his body will be unable to create the cortisol needed in a

time of phsyical or mental stress. I have a solumedrol intection that I carry

with us, that he is to recieve should he have an accident that causes him to

loose conciousness or an injury such as a broken bone - and they stressed that I

am to give the injection before calling for help - that's how important the

cortiscol is in an emergent situation.

My son has been on steriods since first diagnosed nearly 5 years ago - he'd been

treated off and on the year prior with steriods for another condition. We have

been up and down as the attempt to taper proved fruitless. Robbie would bounce

back so quickly with the solumedrol and the higher po dose, and do well - up to

a point - with the taper, that the docs didn't start any of the dmards. If I

knew then what I know now.....I finally had to fight and get referrals and make

physician changes to get my son methotrexate - and though he does have ongoing

problems (most related to the side affects of the steriods) - the methotrexate

made a big difference for him - and we are at the lowest dose of steriods that

we have been at for 2 years. Here's hoping that eventually we can be done with

them altiogether - but the endocrinologist doesn't want to see us remove this

current dose too fast & says that it will be a six months to a year - probably

closer to the year before the adrenal glands have a chance to begin acting on

their own again.