Re: new-advice needed please

January 23, 2008

I felt so much the same as you do. We started on a road to no where

with Naprosyn (didn't work at all-- same as your daughter, couldn't

straighten knee at all or walk on it so I carried her for months...),

and then ultimately got a steroid injection to her knee. That did

wonders for about 4 months, but then both ankles began to have

swelling too. My daughter, Isabelle's onset was at age two and then

the spread of the JRA right after she turned 3.

I was very afraid of the Methotrexate injections, such a heavy duty

medication for such a small child. However, I have to tell you, it

has been a GOD send. She has been in a " medicated remission " since

starting the MTX in April and it only took a couple weeks to start

working which is unusual. I don't know what the future has in store,

but for now it's as if life is back to normal for Isabelle and I am

so grateful that this medication is an option. She also just finished

6 mos. of physical therapy to regain the full range of motion in the

knee that had been in a constant contracture for so long.

I understand completely about wanting to try natural options but

truly MTX is now my best friend . We do give her probiotics, with

yogurt and kefir, as well as a child dose of fish oil daily. Another

mom pointed out that fish oil is a natural blood thinner, so ok with

your doctor first, but my advice is to follow your instincts to help

your daughter. Traditional medicine combined with natural methods

works for many. But definitely do not be afraid to get the disease

under control with MTX injections.

Having a child with JRA has been very hard at times as a mother. I

hear your inner struggle in your post. We have all been in that

place of having no control and wanting desperately to take our baby's

pain away. We trace our foot steps looking for answers but come up

with out any reason as to WHY our child has this disease. It isn't

anything we did or didn't do and as a mother it's hard to see it that

way. But the truth is, this disease seems to have many

different " triggers " and we just don't know " why " and probably won't

in our life time. Be very good to yourself and know you aren't alone

in this.

-Hadley (Isabelle, 4 yrs.)

>

> hi, at easter last year my daughter, then 16 months old woke up with

> her right knee swollen to twice the size of her left. i took her to

> the gp, who immediateley referred us to the local hospital where

they

> started tests. They immediately warned us that they thought it could

> be juvenile idiopathic arthritis but because she had recently had a

> very bad cold they thought it was reactive. All tests were

> inconclusive other than that she is ANA positive and had raised ESR.

> We were then told to wait for 8 weeks to see if the swelling went

down

> on its own, for ages she was only on ibuprofen and it just wasnt

> helping she was so stiff she couldnt walk for hours in the morning i

> had to carry her about put her in hot baths etc till she could get

> going eventually she was given naproxen. She limped heavily and

could

> not straighten her leg at all. In the meantime her ankles began to

> look swollen too. It was 12 weeks later that we were finally

referred

> to a paediatric rheumatologist who said that she need steroid

> injections directly into her joints. He concluded oligoarthritis. We

> were then told that there was a 4 month waiting list for these

> injections on the nhs which was just unbearable i couldnt let a

child

> that small be in that kind of pain for so long so we had to go

private

> at the cost of £2000 a time, which we cant afford but have no

choice.

> At the end of june she had the injections under general anaesthetic

in

> the 3 joints and for 4 months everything was fine, all joints

returned

> to normal almost instantly, she regained full mobility there was

just

> a bit of atrophy where the needle had gone in, but that was just

> cosmetic and with swimming that was fine. In October her ankles and

> one elbow became swollen, they injected into the joints again. Then

> just 2 months later just before christmas her ankles swelled again,

> doc thought it was tendonitis and we just rubbed nurofen gel in for

a

> while, but it got progressively worse until she was so swollen she

> could barely walk. On Saturday she had her third set of injections

in

> 10 months. I had a long chat with the paed rheum about what he

wanted

> to do going forward, how many times he would inject before he turned

> to something else, was it safe to keep doing so etc. He said it was

> fine he could keep injecting almost indefinitely and told me stories

> about patients he had injected 27 times in 10 years and there were

no

> growth or bone density issues, but then said that if we were not

being

> treated privately but on the nhs they would have given her

> methotrexate by now and gave me some leaflets to read. He came back

> after he had done the injections and said make an appointment to see

> me my gut says this isnt going to go away i think you should start

her

> on methotrexate. I was a bit taken aback because until i had asked

him

> what he wanted to do going forward he hadnt mentioned it and now all

> of a sudden the prognosis which he had led us to believe was good

had

> disappeared. I am very confused and because of the nature of this

> whole disease from the start where the diagnosis is one of exclusion

> to the fact that no 2 children are the same make it impossible to

make

> an informed decision-she could have these injections and never need

> them again, it might take another, 2, 3, 5 goes or this could go on

> and on and get worse. I am really scared by the methotrexate, i hate

> giving my kids meds of any kind and the fact that i have had to give

> something as toxic as naproxen pained me, so the thought of

> methotrexate is like introducing poison to a 2 year old. At present

> she is on no meds in between steroid injections and we try to lead

as

> normal and joyful a life as possible between flare ups when things

> just go rapidly downhill until she gets the injections and we're

back

> to normal again. Any advice anyone can give me would be greatly

> appreciated, i have just dealt in facts here i know i dont need to

go

> into the shock, pain,tears and general horror of the whole

experience

> you can read that between the lines. My gut is to hold off on the

> methotrexate and give it as a last resort. I want to try some

natural

> stuff too and try and boost her immune system, she loses so much

> weight so rapidly when she is sick i spend 3 months building her up

> for it to disappear in the space of a week. Up unil this started she

> was a healthy happy textbook baby (unlike her older sister)ate slept

> breatfed to 14 months, the only remarkable thing was when she

> swallowed a 10p coin at a friends house and had to have it

> sraightforwardly surgically removed. Any suggestions regarding

> alternative therapies and what has helped any of you would be really

> useful. I have to stay strong for my children but this has affected

us

> all terribly I torture myself with questions for which there are no

> answers and cant help but think that something must be triggering

> this. I also dont understand how her knee can be perfect after just

> one steroid injection and yet the ankles just keep coming back.

Thanks

> for reading this i have gone on a bit! Milena

>

January 23, 2008

Thanks so much Hadley for replying, it does mean a lot to know that

other people have been through this too and come out the other end, i

hope and pray that your daughter stays well. Can i just ask did you

try the mtx orally at all or did you go straight for the injections

and why?

Like anything i have good days when i can dare to hope and others when

i could just sit and cry, Marija keeps me going she is the happiest

little girl even through all this, and i am very lucky to have the

support of family and friends. My husband is not very good with all

this stuff he doesnt show his emotions and not so much bottles it all

up but buries his head in the sand, i am the one doing all the

research and soul searching. But, each to their own i feel better

after a good cry, thats what works for me. I need to schedule a

meeting with the paed rheum to discuss everything but am just holding

off until i know in my head where i'm going with this, dont want him

pushing me into mtx unless i'm sure its the best option. thanks again

look forward to hearing from you, milena.

> >

> > hi, at easter last year my daughter, then 16 months old woke up with

> > her right knee swollen to twice the size of her left. i took her to

> > the gp, who immediateley referred us to the local hospital where

> they

> > started tests. They immediately warned us that they thought it could

> > be juvenile idiopathic arthritis but because she had recently had a

> > very bad cold they thought it was reactive. All tests were

> > inconclusive other than that she is ANA positive and had raised ESR.

> > We were then told to wait for 8 weeks to see if the swelling went

> down

> > on its own, for ages she was only on ibuprofen and it just wasnt

> > helping she was so stiff she couldnt walk for hours in the morning i

> > had to carry her about put her in hot baths etc till she could get

> > going eventually she was given naproxen. She limped heavily and

> could

> > not straighten her leg at all. In the meantime her ankles began to

> > look swollen too. It was 12 weeks later that we were finally

> referred

> > to a paediatric rheumatologist who said that she need steroid

> > injections directly into her joints. He concluded oligoarthritis. We

> > were then told that there was a 4 month waiting list for these

> > injections on the nhs which was just unbearable i couldnt let a

> child

> > that small be in that kind of pain for so long so we had to go

> private

> > at the cost of £2000 a time, which we cant afford but have no

> choice.

> > At the end of june she had the injections under general anaesthetic

> in

> > the 3 joints and for 4 months everything was fine, all joints

> returned

> > to normal almost instantly, she regained full mobility there was

> just

> > a bit of atrophy where the needle had gone in, but that was just

> > cosmetic and with swimming that was fine. In October her ankles and

> > one elbow became swollen, they injected into the joints again. Then

> > just 2 months later just before christmas her ankles swelled again,

> > doc thought it was tendonitis and we just rubbed nurofen gel in for

> a

> > while, but it got progressively worse until she was so swollen she

> > could barely walk. On Saturday she had her third set of injections

> in

> > 10 months. I had a long chat with the paed rheum about what he

> wanted

> > to do going forward, how many times he would inject before he turned

> > to something else, was it safe to keep doing so etc. He said it was

> > fine he could keep injecting almost indefinitely and told me stories

> > about patients he had injected 27 times in 10 years and there were

> no

> > growth or bone density issues, but then said that if we were not

> being

> > treated privately but on the nhs they would have given her

> > methotrexate by now and gave me some leaflets to read. He came back

> > after he had done the injections and said make an appointment to see

> > me my gut says this isnt going to go away i think you should start

> her

> > on methotrexate. I was a bit taken aback because until i had asked

> him

> > what he wanted to do going forward he hadnt mentioned it and now all

> > of a sudden the prognosis which he had led us to believe was good

> had

> > disappeared. I am very confused and because of the nature of this

> > whole disease from the start where the diagnosis is one of exclusion

> > to the fact that no 2 children are the same make it impossible to

> make

> > an informed decision-she could have these injections and never need

> > them again, it might take another, 2, 3, 5 goes or this could go on

> > and on and get worse. I am really scared by the methotrexate, i hate

> > giving my kids meds of any kind and the fact that i have had to give

> > something as toxic as naproxen pained me, so the thought of

> > methotrexate is like introducing poison to a 2 year old. At present

> > she is on no meds in between steroid injections and we try to lead

> as

> > normal and joyful a life as possible between flare ups when things

> > just go rapidly downhill until she gets the injections and we're

> back

> > to normal again. Any advice anyone can give me would be greatly

> > appreciated, i have just dealt in facts here i know i dont need to

> go

> > into the shock, pain,tears and general horror of the whole

> experience

> > you can read that between the lines. My gut is to hold off on the

> > methotrexate and give it as a last resort. I want to try some

> natural

> > stuff too and try and boost her immune system, she loses so much

> > weight so rapidly when she is sick i spend 3 months building her up

> > for it to disappear in the space of a week. Up unil this started she

> > was a healthy happy textbook baby (unlike her older sister)ate slept

> > breatfed to 14 months, the only remarkable thing was when she

> > swallowed a 10p coin at a friends house and had to have it

> > sraightforwardly surgically removed. Any suggestions regarding

> > alternative therapies and what has helped any of you would be really

> > useful. I have to stay strong for my children but this has affected

> us

> > all terribly I torture myself with questions for which there are no

> > answers and cant help but think that something must be triggering

> > this. I also dont understand how her knee can be perfect after just

> > one steroid injection and yet the ankles just keep coming back.

> Thanks

> > for reading this i have gone on a bit! Milena

> >

>

January 23, 2008

Hi, Milena, and welcome to the list. Many of us have felt as you do about the

methotrexate, but in many cases it is the best thing. The idea behind it is that

it is a DMARD - it goes after the disease itself. An NSAID will work on the

inflammation and pain relief, but it does not do a whole lot to prevent or stop

joint damage. That is the big thing - arthritis left untreated can cause damage

to the joints that you are not seeing. Your daughter should also have an eye

exam - a slit lamp eye test - to check for inflammation in the eye. You cannot

see it just by looking at her and it can damage the eye left untreated. Being a

girl, and ANA positive she has a greater chance of developing uveitis.

Moving on to mtx is a big step, and one you should check out so you feel

comfortable. Please remember that there are also problems with being on NSAIDS

like ibuprofen for long periods of time. When she is on mtx, she will have

bloodwork done to watch for problems. If you can get the arthritis under control

by moving on to a DMARD or a biologic (like Enbrel, for example), she can maybe

get off meds quicker.

Please feel free to ask any questions you have - someone is sure to know

something about what you going through. You have found a wonderful resource here

on the list. Michele ( 20, spondy)

________________________________

From: [mailto: ] On Behalf Of

rade_milena

Sent: Tuesday, January 22, 2008 4:25 AM

Subject: new-advice needed please

hi, at easter last year my daughter, then 16 months old woke up with

her right knee swollen to twice the size of her left. i took her to

the gp, who immediateley referred us to the local hospital where they

started tests. They immediately warned us that they thought it could

be juvenile idiopathic arthritis but because she had recently had a

very bad cold they thought it was reactive. All tests were

inconclusive other than that she is ANA positive and had raised ESR.

We were then told to wait for 8 weeks to see if the swelling went down

on its own, for ages she was only on ibuprofen and it just wasnt

helping she was so stiff she couldnt walk for hours in the morning i

had to carry her about put her in hot baths etc till she could get

going eventually she was given naproxen. She limped heavily and could

not straighten her leg at all. In the meantime her ankles began to

look swollen too. It was 12 weeks later that we were finally referred

to a paediatric rheumatologist who said that she need steroid

injections directly into her joints. He concluded oligoarthritis. We

were then told that there was a 4 month waiting list for these

injections on the nhs which was just unbearable i couldnt let a child

that small be in that kind of pain for so long so we had to go private

at the cost of £2000 a time, which we cant afford but have no choice.

At the end of june she had the injections under general anaesthetic in

the 3 joints and for 4 months everything was fine, all joints returned

to normal almost instantly, she regained full mobility there was just

a bit of atrophy where the needle had gone in, but that was just

cosmetic and with swimming that was fine. In October her ankles and

one elbow became swollen, they injected into the joints again. Then

just 2 months later just before christmas her ankles swelled again,

doc thought it was tendonitis and we just rubbed nurofen gel in for a

while, but it got progressively worse until she was so swollen she

could barely walk. On Saturday she had her third set of injections in

10 months. I had a long chat with the paed rheum about what he wanted

to do going forward, how many times he would inject before he turned

to something else, was it safe to keep doing so etc. He said it was

fine he could keep injecting almost indefinitely and told me stories

about patients he had injected 27 times in 10 years and there were no

growth or bone density issues, but then said that if we were not being

treated privately but on the nhs they would have given her

methotrexate by now and gave me some leaflets to read. He came back

after he had done the injections and said make an appointment to see

me my gut says this isnt going to go away i think you should start her

on methotrexate. I was a bit taken aback because until i had asked him

what he wanted to do going forward he hadnt mentioned it and now all

of a sudden the prognosis which he had led us to believe was good had

disappeared. I am very confused and because of the nature of this

whole disease from the start where the diagnosis is one of exclusion

to the fact that no 2 children are the same make it impossible to make

an informed decision-she could have these injections and never need

them again, it might take another, 2, 3, 5 goes or this could go on

and on and get worse. I am really scared by the methotrexate, i hate

giving my kids meds of any kind and the fact that i have had to give

something as toxic as naproxen pained me, so the thought of

methotrexate is like introducing poison to a 2 year old. At present

she is on no meds in between steroid injections and we try to lead as

normal and joyful a life as possible between flare ups when things

just go rapidly downhill until she gets the injections and we're back

to normal again. Any advice anyone can give me would be greatly

appreciated, i have just dealt in facts here i know i dont need to go

into the shock, pain,tears and general horror of the whole experience

you can read that between the lines. My gut is to hold off on the

methotrexate and give it as a last resort. I want to try some natural

stuff too and try and boost her immune system, she loses so much

weight so rapidly when she is sick i spend 3 months building her up

for it to disappear in the space of a week. Up unil this started she

was a healthy happy textbook baby (unlike her older sister)ate slept

breatfed to 14 months, the only remarkable thing was when she

swallowed a 10p coin at a friends house and had to have it

sraightforwardly surgically removed. Any suggestions regarding

alternative therapies and what has helped any of you would be really

useful. I have to stay strong for my children but this has affected us

all terribly I torture myself with questions for which there are no

answers and cant help but think that something must be triggering

this. I also dont understand how her knee can be perfect after just

one steroid injection and yet the ankles just keep coming back. Thanks

for reading this i have gone on a bit! Milena

January 23, 2008

I'm another mom that hated the thought of giving my little girl

MTX... or really any of the other medications. Jordan, 5, started

having trouble in the fall of '04 when she was 2 1/2. We went about 6

months before she was diagnosed with JRA. She had all kinds of tests

run, x-rays, a MRI and finally surgery. She started on Naproxen, then

added Sulfasalazine. About 6 months after her official diagnosis the

uveitis showed up. She did the eye drops and went back for a check up

every few weeks. She'd be clear and we'd set and appt. up for a 3

month check up but she could only go about 6 weeks without a flare.

After a while the Naproxen was making her sick so we switched to

Relafen. She did OK on those for a while and then our insurance

switched and she went about 10 months without any medication or

seeing a Rhuemy. We were having trouble getting her in with a new

Rheumy because they kept saying they didn't have her records. She was

still able to get her eyes checked and she continued to have flares

in her eyes about every 6-8 weeks. She was finally seen and the Dr.

she saw pretty much blew us off. Her knee was huge, her eyes were

flaring but he felt she was doing ok. I called and told them she

needed to be seen again because she was not doing well. She was

hurting, limping and her eyes were bad. We got in with another Dr.

and she examined Jordan and told me because her eyes were so bad and

her knee was obviously flaring she wanted to start oral MTX, and

Prednisone asap. She gave us the Rx and I held onto it for about a

week before I filled it. I sat there fighting back tears when I gave

it to her. I hate giving my kids any medication as it is so giving

her what I felt was poison killed me. I was so afraid of what these

drugs would do to her. Much to my surprise Jordan did really well.

She was very tired for the first 2 weeks but after that she was back

to herself.

We went back for our 8 week check and her knee was still huge. Dr.

Brown said she felt an joint injection would help so I agreed. We set

up the injection for the following week. She had the injection and I

noticed that it was working within a week. About a month after the

injection there was almost no swelling. I though we were finally

getting this under control. Over the past week or 2 Jordan started

complaining that her knee was hurting. She was starting to swell

again too. We went back last Friday for our regular check and sure

enough Jordan's starting to flare. Instead of doing another joint

injection she upped her MTX and added Naproxen back to her meds.

Hopefully she won't have any tummy issues this time around. Jordan

asked if she was going to have to have another injection and Dr.

Brown said no because it's obvious she got little relief and that she

doesn't like to give the injections so close together. She also said

that after a while your body can become immune to the medication and

it won't work. We won't even consider doing another joint injection

until this summer or fall. I'd hate to keep putting her through all

that for little relief.

I still hate giving her all these medications but really what other

choice do I have? I couldn't live with myself if I denied her the

medication that would help her pain. I'm still praying that she'll go

into remission and she'll never have to take another medication but

in the mean time I'm doing everything I can to make her comfortable

and pain free. She does yoga, exercises, take hers vitamins and for

the most part is a typical 5 year old. She hates this disease but I

honestly believe it's made her as strong as she is.

Once you come to a decision on what to do as far as what medication

and treatments to do you'll feel better and more at peace. I was a

mess for the longest time because I didn't know what to do but I know

now we made the right decision. Her eyes are improving and she's only

had 1 eye exam show any inflammation since starting the MTX.

Hopefully she keeps improving.

Good luck.

Stacey,

Jordan Lynne, 5, Pauci & uveitis