s Appt today..

[Guest guest]

Hi Emilie,

Have the school do a 504 plan.They will make any accomodations she may

need.Sounds like she also needs to see the OT at school to help with some

things.They would be the ones that would know where and how to get any adaptive

equipment you might need.

I would be very hesitant of giving a 5yr old 50mg of Enbrel a week.One other

child about age 5-6 was put on this dose by accident.It was bad.I don't

remember the details but I am sure mom will chime in.The maximum dose is .8mg

per

kilo x2 and if it doesn't help the dose should be lowered for safety reasons.

Take your childs weight in lbs and divide it by 2.2 to convert to kilos.Then

times that by .8 and multiply that by 2.That is the maximum amount your child

should take and it's not routinely done.You are faceing severe supression of

the immune system similar to that of a child takeing chemo.

Remicade is a stronger TNF inhibitor and would be the logical next choice and

safer.

I pray tolerates it ok and doesn't end up like the other child from

the list.

Becki and 6 systemic

[Guest guest]

Hi all..

We went to Albany today. The doc upped her to 50mg weekly of enbrel

and we are back on the methotrexate at .5cc weekly. She's also back

on the folic acid. He also did x-rays of the knees and hands. He

gave me a script for her to have built up pencils at school for the

time being. Does anyone know how I go about making sure that the

school is going to comply with this? Also does anyone know where I

can get built up silverware for her at home? The rheumy is really

concerned about the way this has flared up again. He said to keep

her active as possible, but not to let her fall and get hurt right

now. Would that be because of the prednisone that she's on and the

bruising that goes along with it. She is so bruised up right now

that we are going to be alternating doses of pred. 1 tsp on day and

then 1/2 the next for two weeks and then we go down to 1/2 tsp all

the time. I feel so rotten that she is dealing with this again. I

had hoped that we were going to stay on the upswing of this nasty

disease. Is anyone else on the 50 mg enbrel?? right now we are going

to be doing it in two seperate shots, on the same day. I am hoping

to get the preloaded enbrel syringes the next round of refills that

we need.

hugs.

Emilie ( 5, Poly)

[Guest guest]

-Emilie..

Talk to the school about a 504 plan or an IEP..

as to the built up utensils, go to a home improvement store and see

if they have any small pipe insulation foam.. these work well on

untensils, toothbrushes hairbrushes etc... Its cheap and can be

thrown away and replaced often.

Hugs Helen and (7,systemic)

-- In , " zellierothenheber "

<h.skidmore@w...> wrote:

>

> Hi all..

>

> We went to Albany today. The doc upped her to 50mg weekly of

enbrel

> and we are back on the methotrexate at .5cc weekly. She's also

back

> on the folic acid. He also did x-rays of the knees and hands. He

> gave me a script for her to have built up pencils at school for

the

> time being. Does anyone know how I go about making sure that the

> school is going to comply with this? Also does anyone know where

I

> can get built up silverware for her at home? The rheumy is really

> concerned about the way this has flared up again. He said to keep

> her active as possible, but not to let her fall and get hurt right

> now. Would that be because of the prednisone that she's on and the

> bruising that goes along with it. She is so bruised up right now

> that we are going to be alternating doses of pred. 1 tsp on day

and

> then 1/2 the next for two weeks and then we go down to 1/2 tsp all

> the time. I feel so rotten that she is dealing with this again. I

> had hoped that we were going to stay on the upswing of this nasty

> disease. Is anyone else on the 50 mg enbrel?? right now we are

going

> to be doing it in two seperate shots, on the same day. I am hoping

> to get the preloaded enbrel syringes the next round of refills

that

> we need.

>

> hugs.

> Emilie ( 5, Poly)

[Guest guest]

Becki.. s Rheumy will not do the remicade or humira with her because of

the side effects and the fact that they increase the chances of infections.

already has lung problems, stomach problems and a history of bronchitis

and pneumonia. We talked about it today. He is going to be closely monitoring

her with frequent bloodwork and at this point we are on a schedule of 4 week

visits to him. I will definately be keeping the info you gave me in the front

of my mind and if she ends up getting sick she will come off the enbrel fast..

I'm interested in hearing what happened to this other child though. If you can

remember who it was and what happened please let me know..

thanks.

Emilie ( ahsley 6, poly)

Re: s Appt today..

Hi Emilie,

Have the school do a 504 plan.They will make any accomodations she may

need.Sounds like she also needs to see the OT at school to help with some

things.They would be the ones that would know where and how to get any

adaptive

equipment you might need.

I would be very hesitant of giving a 5yr old 50mg of Enbrel a week.One other

child about age 5-6 was put on this dose by accident.It was bad.I don't

remember the details but I am sure mom will chime in.The maximum dose is .8mg

per

kilo x2 and if it doesn't help the dose should be lowered for safety reasons.

Take your childs weight in lbs and divide it by 2.2 to convert to kilos.Then

times that by .8 and multiply that by 2.That is the maximum amount your child

should take and it's not routinely done.You are faceing severe supression of

the immune system similar to that of a child takeing chemo.

Remicade is a stronger TNF inhibitor and would be the logical next choice and

safer.

I pray tolerates it ok and doesn't end up like the other child from

the list.

Becki and 6 systemic