Re: New to this with lots of questions

[Guest guest]

Mindy,

Over medicating? I have wondered often that same thing then I go back to the

months and months that my daughter was stiff, always in pain and always

exhausted. My daughter started out on Celebrex and then had Plaquinil added,

she was quickly under control and out of pain. Well at least that is what she

said, she had been having issues for a long time and had gotten used to it. So

when she was feeling better she decided to stop the meds. Now she also has a

seizure disorder and the neurologist at that time also determined it was time to

try to wein her off of her seizure meds as well. So for about six months she

was medication free. Wow! did that feel good to me. Then she had another major

flare and was put on an nsaid, then added the plaquinil again. We tried several

different nsaids before adding the methotrexate. After almost three years she

had to go back on her seizure medications as well, a real bummer but we

certainly do not want her to have seizures. After a year on the methotrexate

they added Enbrel because we just could not get her to feel well. We had

steroids in her mix as well off and on. She is now doing well, better then she

has been in a long time. She is on Plaquinil, Meloxicam, Folic Acid, Prevacid &

Keppra XR for her seizures daily, then also on a weekly injection of the

Methotrexate and Enbrel. Do I think that is too much, yes I do. BUT am I scared

to take any of it away, even more so. My daughter was also diagnosed with JIA at

11 years old, but is now 17 and doing well. She very rarely complains of joint

issues, she is not walking like an old person when she gets up in the morning

and she is able to do most all the things the other kids her age can do. When

we go back to see the rheumy in 2 1/2 weeks I am scared he will want to take

some thing away and mess with our calm. I certainly will not argue with him. I

certainly want to have her pain free, drug free and feeling good. But I also do

not know if drug free will ever be an option for us again. I mean her

neurologist is also talking about possibly weining her off the meds again and

that terrifies me. She is now driving and I can not imagine her having a seizure

while driving and hurting herself or someone else. As a mom I am not sure if

this will ever get easier. I do understand where you are coming from.

Veri & Jaye 17 Poly (and going to prom in a week and a half and is going

to be the most beautiflul girl there)

New to this with lots of questions

Ok , I am not so new, 6 months since DX, my daughter is 11.

Do you find that they tend to medicate- a lot, when so much of the time she

seems fine, yet sometimes flares. Not extreme flares, we both have

HBL -27, the gene marker so am personally familiar with RA. i live with a lot of

the issues myself, but in a child it can cause damage. I know what a mega flare

up is as opposed to some pains.

I realize the goal is to control and limit damage in a child, but my kid is on a

biologic shot, methotrexate and now celebrex.

So much of the time, she is pain free Thank G-D and with decent only slightly

elevated labs. Yet will complain of pains or tinges and then go about her life,

yet we keep medicating. So , now I wonder if it is too much, each drug has so

many side effects and causes other issues. At her age, she can tell me I would

rather have my ankles hurt a little but not feel so nauseous or have stomach

aches.

So, I want to hear from others,

Do you feel kids are being overmedicated for RA? or is this the norm and

Other non medical aspects of dealing with pain?

Not necessarily, herbals or supplements, which can contraindicate meds, but like

avoiding night shades.

or good old fashioned remedies

thank you so much for sharing.

Truth is we are all in this together so what ever we have learned, it is for us

to share and benefit. others

Mindy

[Guest guest]

Mindy it is my understanding that the protocol for treatment is early and

aggressive. This is to avoid permanent damage...damage which can occur even when

our kids seem fine. I know my lived with pain for so long he very rarely

complained...he had/has to be in massive pain for it to register. He had a

severe sinus infection earlier this year and he never once mentioned that it

even hurt...and I know how awful they can be. When I asked him why he never

mentioned it...he just shrugged his shoulders. Poor kid just didn't know he

should or could say something because he's so used to being in pain. had

very little major swelling but also had joints that had been swollen so

long...we thought it was normal.

is 7.5 and has been on Enbrel since right around his 6th birthday and has

been on mtx for two years. While I hate that he is on these meds...I know that

the benefit of them far out weigh any future potential 'cost'. He has had no

signs of active disease since November 2009....we are now in the process of VERY

slowly weaning him the the mtx.

The only non traditional treatment we have used in chiropractic, cranial sacral

therapy, and massage...all of which we started well before he was dxed. He was

thought to have other issues prior to the JIA dx...

I know how hard it is to inject our kids with these powerful drugs...but no

treating them in much much worse.

All the best.

& , 7, poly...nystagmus...SPD...

Sent from my iPhone

[Guest guest]

Yes, all the studies show that early and aggressive treatment is the best to put

the disease into remission for a loooooong time. Remission is the mission of

pediatric rheumys, but one wants that remission to last forever. Not just six

months while the mtx is getting out of their system. Carol Wallace, ped rheumy

at Seattle Children's is doing a large study on early aggressive treatment up

at Seattle Children's Hospital. It has been going on for a couple of years.

When it comes out, perhaps it will put this subject to rest.

This is how it will probably work. When your physician decides that your

daughter is in remission, (and she isn't in remission if labs are elevated even

a little), then he/she will discuss with you a year later about weaning, IF she

stays in that remission for the entire year. Studies have shown that you want

remission, and you want it to hold for a year before weaning.

So I would continue to give the mtx and biological (and personally I would kiss

the box each week because we are so lucky to have these meds-the biologicals are

all new). n takes her nsaid on an as needed basis, but n has been

dealing with this disease for a very long time.

We have tried many different things with n thru the years. Of all of the

things, this is what we have stuck with. Eat healthy. Cook her food so you

know what is in it. Fresh, wholesome food. Limit the junk and sugar. 1000mg

of Omega 3 fats. But I make sure those 1000mg are coming from DHA and EPA. ALA

is not very helpful. You want the oils from the fish, not so much from flax and

walnuts, as they are all ALA fatty acids. There are scientific studies which

show the anti inflammatory effects of Omega 3 fatty acids. It won't cure your

daughter, but it should aid in her overall health. Take care, (n,

22, systemic)

On Apr 1, 2011, at 2:41 AM, mindy caplan wrote:

> Ok , I am not so new, 6 months since DX, my daughter is 11.

>

> Do you find that they tend to medicate- a lot, when so much of the time she

> seems fine, yet sometimes flares. Not extreme flares, we both have

> HBL -27, the gene marker so am personally familiar with RA. i live with a lot

of

> the issues myself, but in a child it can cause damage. I know what a mega

flare

> up is as opposed to some pains.

>

> I realize the goal is to control and limit damage in a child, but my kid is on

a

> biologic shot, methotrexate and now celebrex.

> So much of the time, she is pain free Thank G-D and with decent only slightly

> elevated labs. Yet will complain of pains or tinges and then go about her

life,

> yet we keep medicating. So , now I wonder if it is too much, each drug has so

> many side effects and causes other issues. At her age, she can tell me I would

> rather have my ankles hurt a little but not feel so nauseous or have stomach

> aches.

>

> So, I want to hear from others,

> Do you feel kids are being overmedicated for RA? or is this the norm and

> Other non medical aspects of dealing with pain?

> Not necessarily, herbals or supplements, which can contraindicate meds, but

like

> avoiding night shades.

> or good old fashioned remedies

>

> thank you so much for sharing.

> Truth is we are all in this together so what ever we have learned, it is for

us

> to share and benefit. others

>

> Mindy

>

>

[Guest guest]

Mindy,

I think we have tried it all, even a few herbals! But nothing works like the

drug regimen that we are on.

Are they on a lot of drugs? yes. Too many? I don't know.

My son is on Feldene (nsaid), plaquenil, and Humira. He is also on prevacid for

his tummy, Enderal for migraines, and fishoil, and a vitamin.

In 4 years, he has never been under great control or remission. This is the

best regimen that we have tried. It works, he can function pretty normally.

My view of it all was to provide the best quality of life now and prevent future

damage. The rest (side effects and such) I gave it to G-d and asked him to

protect my child. We have no control over tomorrow, but today, I want him to be

able to do school, play ball, and be a kid. He can't do those things without

his meds.

I can't honestly say that I don't think about future problems, but I don't dwell

on it. I do know that without the meds he would have major joint damage, joint

replacement surgeries, and maybe lose his ability to walk. I have seen several

of the adult children that grew up with no biologics and it is very sad the

damage that this disease does.

Audra

14 poly 07

Peyton 13 poly 08 remission

>

> Ok , I am not so new, 6 months since DX, my daughter is 11.

>

it is for us

> to share and benefit. others

>

> Mindy

>

>

>

>

>

[Guest guest]

Hi Mindy,

Audra has said it well. We tried everything with my daughter - eliminating

certain foods, going gluten-free, using lots of different supplements. That was

in the beginning, when we were just home from the hospital on high doses of

prednisone and the NSAID. After a short while we added Methotrexate, quickly

got to max dose, and still no improvement. It was only when we started the

biologic (Kineret) that things turned around - and quickly. So, each night as I

give the injection I am thankful for the medication and pray that it will keep

working. That's pretty much what it comes down to for us right now. I would

love it if my daughter didn't have to take this strong medication, with unknown

consequences, but right now I'm just so joyful that she is able to function

again.

nn (mom to , now 10!!, systemic JIA)

> >

> > Ok , I am not so new, 6 months since DX, my daughter is 11.

> >

> it is for us

> > to share and benefit. others

> >

> > Mindy

> >

> >

> >

> >

> >