Re: New here son just dx with SO JRA

[Guest guest]

Amy,

I read your blog and am so sorry that you are going through this. Nothing about

this is easy. My daughter does not have SO JRA, she has Polyarticular JIA and so

has not had the rashes and fevers related to this. Any way you go it is not a

fun road to travel. We have so many moms on this whos kids are systemic and so

they will chime in and give you support. My daughter was sick for most of the

first 18 months of her life. One day after her first birthday she was admitted

to the hospital because she was lethargic and no one could keep her awake,

really scary. Three months later she was back in the hospital for rotovirus, she

had been sick for three weeks in and out of the doctors office everyother day

and not one doctor could figure out what was wrong. So we left the family

practice and found a pediatrician. Then at age five she was diagnosed with a

seizuer and then asthma and migrains followed by the time she was eight. So when

she started haveing the swollen joints for no reason and they started testing

for all sorts of things I was pretty scared. At first I thought, I do not have

the energy for this, I was a single mom and her father was totally non

supportive and thought I was crazy and over reacting, I mean after all these

doctors appointments cost money and he tought he might have to pay for them.

Fortunatly, I did not know all the things they were testing for until the

results of much of it came back negative and so by then it was ruled out. It is

not easy to watch your child in pain and not be able to help. It is not easy to

see that they can not get up and do the things they are used to doing. It hurts

to watch them sit and watch as the world moves on with out them. We got our

diagnosis fairly quick compared to some, it took two weeks for " likely JIA " ,

from the pediatrician, then another two weeks for a " probable JIA " from the

rheumatologist and then another month for a " Pauciarticular JIA " diagnosis and

then a month later a change for the final " Polyarticular JIA " diagnosis. Most of

Jayes joints have been involved at one time or another but mainly she has

the ankles, feet, hands and knees that cause the most problem. My daughter takes

methotrexate, meloxicam & hydroxichloroquine for the arthritis. She is also on

folic acid and prevacid for her stomach and then on seizure meds as well. Her

meds do not have her arthritis into a medicated remission but we are much better

then we were a year ago. She was diagnosed at age 11 and is now 16 almost 17,

wow, she is growing up. I pray that things will get better for you and Avery

soon. I think being in a childrens hospital is best so that you have access to

the specialists you need. And sorry you had to add another ologist to your list

of " friends " . Until we headed down this road I had no idea how many different

" ologists " there are out there. I have often wondered why the pediatrician is

not a pediologist. As I said others will chime in and give you support, let us

know how things go and I hope you get to take Avery home soon.

Veri & Jaye 16 poly

New here son just dx with SO JRA

My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

are still in the hospital and have started anakinra shots. He's had 3 so far and

the first one really made improvement. He still had a fever spike but not quite

as bad. The second one still showed improvement but not as drastic and more low

grade fever. His spike didn't happen until later but right after the second

shot. After the second one he got a rash which has gotten progressively worse.

It's not like any of the rashes we've had over the past couple of weeks. I would

be happy to reshare my story but I have blogged it and am about to pass out from

exhaustion so I thought I'd just share the link to that. Avery also had down

syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I a m used to advocating for my son so this is not new to

me. Here is a link to my blog, I am linking to the fist post about his illness.

You can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

Amy

[Guest guest]

Veri thank you so much for you kind words of support. I hate that had to

go through so much so young. I am sure you and everyone here understands the

helplessness I feel. It helps knowing I don't have to explain it to you, that

you get it.. I love the pediologist! lol

Amy mom to Avery 17 so jra

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Fri, September 24, 2010 4:45:24 AM

Subject: Re: New here son just dx with SO JRA

Amy,

I read your blog and am so sorry that you are going through this. Nothing about

this is easy. My daughter does not have SO JRA, she has Polyarticular JIA and so

has not had the rashes and fevers related to this. Any way you go it is not a

fun road to travel. We have so many moms on this whos kids are systemic and so

they will chime in and give you support. My daughter was sick for most of the

first 18 months of her life. One day after her first birthday she was admitted

to the hospital because she was lethargic and no one could keep her awake,

really scary. Three months later she was back in the hospital for rotovirus, she

had been sick for three weeks in and out of the doctors office everyother day

and not one doctor could figure out what was wrong. So we left the family

practice and found a pediatrician. Then at age five she was diagnosed with a

seizuer and then asthma and migrains followed by the time she was eight. So when

she started haveing the swollen joints for no reason and they started testing

for all sorts of things I was pretty scared. At first I thought, I do not have

the energy for this, I was a single mom and her father was totally non

supportive and thought I was crazy and over reacting, I mean after all these

doctors appointments cost money and he tought he might have to pay for them.

Fortunatly, I did not know all the things they were testing for until the

results of much of it came back negative and so by then it was ruled out. It is

not easy to watch your child in pain and not be able to help. It is not easy to

see that they can not get up and do the things they are used to doing. It hurts

to watch them sit and watch as the world moves on with out them. We got our

diagnosis fairly quick compared to some, it took two weeks for " likely JIA " ,

from the pediatrician, then another two weeks for a " probable JIA " from the

rheumatologist and then another month for a " Pauciarticular JIA " diagnosis and

then a month later a change for the final " Polyarticular JIA " diagnosis. Most of

Jayes joints have been involved at one time or another but mainly she has

the ankles, feet, hands and knees that cause the most problem. My daughter takes

methotrexate, meloxicam & hydroxichloroquine for the arthritis. She is also on

folic acid and prevacid for her stomach and then on seizure meds as well. Her

meds do not have her arthritis into a medicated remission but we are much better

then we were a year ago. She was diagnosed at age 11 and is now 16 almost 17,

wow, she is growing up. I pray that things will get better for you and Avery

soon. I think being in a childrens hospital is best so that you have access to

the specialists you need. And sorry you had to add another ologist to your list

of " friends " . Until we headed down this road I had no idea how many different

" ologists " there are out there. I have often wondered why the pediatrician is

not a pediologist. As I said others will chime in and give you support, let us

know how things go and I hope you get to take Avery home soon.

Veri & Jaye 16 poly

New here son just dx with SO JRA

My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

are still in the hospital and have started anakinra shots. He's had 3 so far and

the first one really made improvement. He still had a fever spike but not quite

as bad. The second one still showed improvement but not as drastic and more low

grade fever. His spike didn't happen until later but right after the second

shot. After the second one he got a rash which has gotten progressively worse.

It's not like any of the rashes we've had over the past couple of weeks. I would

be happy to reshare my story but I have blogged it and am about to pass out from

exhaustion so I thought I'd just share the link to that. Avery also had down

syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I a m used to advocating for my son so this is not new to

me. Here is a link to my blog, I am linking to the fist post about his illness.

You can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

Amy

[Guest guest]

HI Amy,

I read your blog. I am no doctor, but I do have 11 years experience with

systemic jra. Is he seeing a pediatric rheumatologist.? I think it is nuts

that he is suffering so much. I would be telling the docs I want prednisone.

It is a steroid. Yes, it is a love-hate drug, but many, many times it is the

only thing that will work at first to get rid of the fevers and the rash.

n's rash always changed. Don't freak out too much with the rash. n

had it for six straight years. It is an indicator though that the disease

process is active. n's is worse when she is tired, hot, or the disease is

more active.

You do need to take care of yourself. Yes, I have had n in the hospital

and I know how it is. You at least have to get the minimum amount of sleep.

And if you can, try to keep eating, and make it healthy eating.

Amy, the beginning is the worst. It will get better. They have to find the

cocktail that works for your son. I will tell you about n to give you

hope. Now n has never been in remission. Not one day. She grew to a

normal height, went to school, did high jump in high school, she skis,

snowboards, and goes to college 700 miles away. There is light at the end of

the tunnel. Don't accept such debilitating pain in your son. Pain meds is not

the way to go with this disease. You have to stop the fevers first off. Then

things will improve. Take care and I will send prayers your way today.

(n, 21, systemic)

On Sep 22, 2010, at 10:23 PM, Amy wrote:

> My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

are still in the hospital and have started anakinra shots. He's had 3 so far and

the first one really made improvement. He still had a fever spike but not quite

as bad. The second one still showed improvement but not as drastic and more low

grade fever. His spike didn't happen until later but right after the second

shot. After the second one he got a rash which has gotten progressively worse.

It's not like any of the rashes we've had over the past couple of weeks. I would

be happy to reshare my story but I have blogged it and am about to pass out from

exhaustion so I thought I'd just share the link to that. Avery also had down

syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I am used to advocating for my son so this is not new to me.

Here is a link to my blog, I am linking to the fist post about his illness. You

can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

>

> If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

>

> Amy

>

>

[Guest guest]

Hi Amy,

I'm so sorry that your son is going through this. My daughter is systemic as

well, and was diagnosed 11 months ago in the hospital, with a situation that

sounds eerily similar to yours. I agree with - why no prednisone?? And,

I also love hearing about 's daughter n, because it gives me so much

hope. I never thought I would agree that the worst of this is in the beginning.

I thought I was going to die from anxiety, fear and grief in the beginning of

this journey. But some things are getting better. You are in a good place

being in a children's hospital. Hang in there, keep us posted. I am praying

for you and your son.

nn (, 9, systemic)

>

> > My name is Amy and my son Avery who just turned 17 was just dx with SO jra.

We are still in the hospital and have started anakinra shots. He's had 3 so far

and the first one really made improvement. He still had a fever spike but not

quite as bad. The second one still showed improvement but not as drastic and

more low grade fever. His spike didn't happen until later but right after the

second shot. After the second one he got a rash which has gotten progressively

worse. It's not like any of the rashes we've had over the past couple of weeks.

I would be happy to reshare my story but I have blogged it and am about to pass

out from exhaustion so I thought I'd just share the link to that. Avery also had

down syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I am used to advocating for my son so this is not new to me.

Here is a link to my blog, I am linking to the fist post about his illness. You

can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> >

> > If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

> >

> > Amy

> >

> >

>

>

>

>

[Guest guest]

Amy,

I posted a response earlier but somehow it didn't get through onto the board. I

want you to know that you are not alone. I know those feelings of anxiety,

fear, grief, and not knowing whether one can continue. When my daughter had

acute onset of systemic JIA (11 months ago) I thought at times that I might die

from the emotional trauma of it all. I never thought that I would agree with

the moms who told me that there was a light at the end of the tunnel, or that

things would get better. But some things are a little bit better now. My

daughter is going to start kineret (anakinra) in a couple of days. We are

trying to get her off of prednisone. I was wondering, as questioned, why

Avery is not on prednisone? Have the doctors mentioned that to you? Perhaps

they thought the anakinra would do the trick and they wouldn't need to do

prednisone, but it can bring very immediate relief. It can really help with the

systemic rash, if that is what Avery is dealing with. Then later the prednisone

can be withdrawn once another drug is taking effect.

I have you and Avery in my thoughts and prayers.

nn (, 9, systemic)

>

> My name is Amy and my son Avery who just turned 17 was just dx with SO jra.

We are still in the hospital and have started anakinra shots. He's had 3 so far

and the first one really made improvement. He still had a fever spike but not

quite as bad. The second one still showed improvement but not as drastic and

more low grade fever. His spike didn't happen until later but right after the

second shot. After the second one he got a rash which has gotten progressively

worse. It's not like any of the rashes we've had over the past couple of weeks.

I would be happy to reshare my story but I have blogged it and am about to pass

out from exhaustion so I thought I'd just share the link to that. Avery also

had down syndrome so I kinda thought we'd gotten our share early on. lol He has

done amazingly these past couple weeks but is getting really tire of it. He has

a hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I am used to advocating for my son so this is not new to

me. Here is a link to my blog, I am linking to the fist post about his illness.

You can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

>

> If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never

sure what they mean.

>

> Amy

>

[Guest guest]

thank you so much. They started the prednisone today. Yes we now have

a pediatric rheumotologist. Avery was started on Anakinra and although he only

took it 3 days it stopped the fever spikes and pain. For a day he was like

himself. After the second dose he got another rash and it progressed. Last

night they feared it was a drug reaction and stopped the anakinra and all the

symptoms came crashing back. The high fever, the shakes, his hands swelled and

the pain. On top of the horrible pain from the rash. We had to give him

morphine last night. So we are hoping the prednisone works quickly to give him

some relief. You're daughter sounds wonderful, it is so nice to hear about her

living her life. I know this disease can be so debilitating. We were all

packed and ready to go home from the hospital yesterday when this happened. I'm

pretty glad we stayed. lol

________________________________

From: Price <bc.price@...>

Sent: Fri, September 24, 2010 8:56:35 AM

Subject: Re: New here son just dx with SO JRA

HI Amy,

I read your blog. I am no doctor, but I do have 11 years experience with

systemic jra. Is he seeing a pediatric rheumatologist.? I think it is nuts

that he is suffering so much. I would be telling the docs I want prednisone.

It is a steroid. Yes, it is a love-hate drug, but many, many times it is the

only thing that will work at first to get rid of the fevers and the rash.

n's rash always changed. Don't freak out too much with the rash. n

had it for six straight years. It is an indicator though that the disease

process is active. n's is worse when she is tired, hot, or the disease is

more active.

You do need to take care of yourself. Yes, I have had n in the hospital

and I know how it is. You at least have to get the minimum amount of sleep.

And if you can, try to keep eating, and make it healthy eating.

Amy, the beginning is the worst. It will get better. They have to find the

cocktail that works for your son. I will tell you about n to give you

hope. Now n has never been in remission. Not one day. She grew to a

normal height, went to school, did high jump in high school, she skis,

snowboards, and goes to college 700 miles away. There is light at the end of

the tunnel. Don't accept such debilitating pain in your son. Pain meds is not

the way to go with this disease. You have to stop the fevers first off. Then

things will improve. Take care and I will send prayers your way today.

(n, 21, systemic)

On Sep 22, 2010, at 10:23 PM, Amy wrote:

> My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

>are still in the hospital and have started anakinra shots. He's had 3 so far

and

>the first one really made improvement. He still had a fever spike but not quite

>as bad. The second one still showed improvement but not as drastic and more low

>grade fever. His spike didn't happen until later but right after the second

>shot. After the second one he got a rash which has gotten progressively worse.

>It's not like any of the rashes we've had over the past couple of weeks. I

would

>be happy to reshare my story but I have blogged it and am about to pass out

from

>exhaustion so I thought I'd just share the link to that. Avery also had down

>syndrome so I kinda thought we'd gotten our share early on. lol He has done

>amazingly these past couple weeks but is getting really tire of it. He has a

>hard time communicating his feelings and tends to just tell the dr's he's fine

>when he can't walk. I am used to advocating for my son so this is not new to

me.

>Here is a link to my blog, I am linking to the fist post about his illness. You

>can find the continuations on the side of the page.

>http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

>

> If you made it to the end of my mutterings thank you. This is all so new and

>scary to us. The fevers freak me out and so do the rashes, since I am never

sure

>what they mean.

>

>

> Amy

>

>

[Guest guest]

Amy,

I am glad that they started the prednisone today and you should see good results

quickly wiht that. We do not like the pred because we know what the long term

effect can be but when Jaye is on it she feels wonderful. Last year about

this time we had to put her on a high dose for a while and after 24 hours she

said she was feeling much better, after 48 hours she said she felt pretty good,

and then before 72 hours she said she felt wonderful and had forgotten it was

possible to feel so good. So we know that if she was on it all the time she

would probably be doing better but we also know that we do not want it long

term unless we have no other option. I had heard many moms discuss their love

hate relationship with prednisone and did not really understand it til last year

when she was on it again. I hope that you have a good rheumy that will listen

to you and be patient with Avery. Most pediatric rheumatologists are wonderful

with our kids. I think our rheumy will continue to see Jaye until she

turns 21, I do not want to change before then. We love him and he knows her, it

is like our neurologist when we have to leave him I think we will go through a

grieving process. But we have more then four years to prepare for that. I pray

that today will be a wonderful day for you and Avery and that you will get to go

home soon. It is just so hard to be away from home for so long and you have

another child at home waiting for you I think you had said. Good luck and keep

us informed, we do care.

Veri & Jaye 16 poly

Re: New here son just dx with SO JRA

HI Amy,

I read your blog. I am no doctor, but I do have 11 years experience with

systemic jra. Is he seeing a pediatric rheumatologist.? I think it is nuts

that he is suffering so much. I would be telling the docs I want prednisone.

It is a steroid. Yes, it is a love-hate drug, but many, many times it is the

only thing that will work at first to get rid of the fevers and the rash.

n's rash always changed. Don't freak out too much with the rash. n

had it for six straight years. It is an indicator though that the disease

process is active. n's is worse when she is tired, hot, or the disease is

more active.

You do need to take care of yourself. Yes, I have had n in the hospital

and I know how it is. You at least have to get the minimum amount of sleep.

And if you can, try to keep eating, and make it healthy eating.

Amy, the beginning is the worst. It will get better. They have to find the

cocktail that works for your son. I will tell you about n to give you

hope. Now n has never been in remission. Not one day. She grew to a

normal height, went to school, did high jump in high school, she skis,

snowboards, and goes to college 700 miles away. There is light at the end of

the tunnel. Don't accept such debilitating pain in your son. Pain meds is not

the way to go with this disease. You have to stop the fevers first off. Then

things will improve. Take care and I will send prayers your way today.

(n, 21, systemic)

On Sep 22, 2010, at 10:23 PM, Amy wrote:

> My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

>are still in the hospital and have started anakinra shots. He's had 3 so far

and

>the first one really made improvement. He still had a fever spike but not quite

>as bad. The second one still showed improvement but not as drastic and more low

>grade fever. His spike didn't happen until later but right after the second

>shot. After the second one he got a rash which has gotten progressively worse.

>It's not like any of the rashes we've had over the past couple of weeks. I

would

>be happy to reshare my story but I have blogged it and am about to pass out

from

>exhaustion so I thought I'd just share the link to that. Avery also had down

>syndrome so I kinda thought we'd gotten our share early on. lol He has done

>amazingly these past couple weeks but is getting really tire of it. He has a

>hard time communicating his feelings and tends to just tell the dr's he's fine

>when he can't walk. I am used to advocating for my son so this is not new to

me.

>Here is a link to my blog, I am linking to the fist post about his illness. You

>can find the continuations on the side of the page.

>http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

>

> If you made it to the end of my mutterings thank you. This is all so new and

>scary to us. The fevers freak me out and so do the rashes, since I am never

sure

>what they mean.

>

>

> Amy

>

>

[Guest guest]

Hi Amy,

We all get it here. We are all parents with sick children. Enough said.

I am so happy he was started on prednisone. Do I like the drug? No, but there

are times we have used it with n. It seems to be the only drug that will

stop the fever, organ involvement, and rashes. Then he will be slowly weaned

off of it, as another med ramps up in his system. I wonder if they will try

methotrexate on him? Most of the systemics are on that with some other type of

biological such as enbrel or kineret. Weaning a systemic off of steroids is

half art and half science. I was told that 100 ped rheumys were asked at the

last CARRA meeting how they prescribed prednisone. There were 75 different

answers. I do give n a calcium supplement whenever she is on prednisone.

She likes Viactiv. Also, I don't know if your ped rheumy has mentioned vitamin

D yet, but ours is a firm believer in it and tells the parents how much each

child should take a day.

When he gets out of the hospital, I will tell you the tidbits I have learned

about prednisone thru the years. (n, 21, systemic)

On Sep 24, 2010, at 3:30 PM, Amy Spurger wrote:

> thank you so much. They started the prednisone today. Yes we now have

> a pediatric rheumotologist. Avery was started on Anakinra and although he only

> took it 3 days it stopped the fever spikes and pain. For a day he was like

> himself. After the second dose he got another rash and it progressed. Last

> night they feared it was a drug reaction and stopped the anakinra and all the

> symptoms came crashing back. The high fever, the shakes, his hands swelled and

> the pain. On top of the horrible pain from the rash. We had to give him

> morphine last night. So we are hoping the prednisone works quickly to give him

> some relief. You're daughter sounds wonderful, it is so nice to hear about her

> living her life. I know this disease can be so debilitating. We were all

> packed and ready to go home from the hospital yesterday when this happened.

I'm

> pretty glad we stayed. lol

>

>

> ________________________________

> From: Price <bc.price@...>

>

> Sent: Fri, September 24, 2010 8:56:35 AM

> Subject: Re: New here son just dx with SO JRA

>

> HI Amy,

>

> I read your blog. I am no doctor, but I do have 11 years experience with

> systemic jra. Is he seeing a pediatric rheumatologist.? I think it is nuts

> that he is suffering so much. I would be telling the docs I want prednisone.

> It is a steroid. Yes, it is a love-hate drug, but many, many times it is the

> only thing that will work at first to get rid of the fevers and the rash.

>

> n's rash always changed. Don't freak out too much with the rash. n

> had it for six straight years. It is an indicator though that the disease

> process is active. n's is worse when she is tired, hot, or the disease is

> more active.

>

> You do need to take care of yourself. Yes, I have had n in the hospital

> and I know how it is. You at least have to get the minimum amount of sleep.

> And if you can, try to keep eating, and make it healthy eating.

>

> Amy, the beginning is the worst. It will get better. They have to find the

> cocktail that works for your son. I will tell you about n to give you

> hope. Now n has never been in remission. Not one day. She grew to a

> normal height, went to school, did high jump in high school, she skis,

> snowboards, and goes to college 700 miles away. There is light at the end of

> the tunnel. Don't accept such debilitating pain in your son. Pain meds is not

> the way to go with this disease. You have to stop the fevers first off. Then

> things will improve. Take care and I will send prayers your way today.

> (n, 21, systemic)

>

> On Sep 22, 2010, at 10:23 PM, Amy wrote:

>

> > My name is Amy and my son Avery who just turned 17 was just dx with SO jra.

We

> >are still in the hospital and have started anakinra shots. He's had 3 so far

and

> >the first one really made improvement. He still had a fever spike but not

quite

> >as bad. The second one still showed improvement but not as drastic and more

low

> >grade fever. His spike didn't happen until later but right after the second

> >shot. After the second one he got a rash which has gotten progressively

worse.

> >It's not like any of the rashes we've had over the past couple of weeks. I

would

> >be happy to reshare my story but I have blogged it and am about to pass out

from

> >exhaustion so I thought I'd just share the link to that. Avery also had down

> >syndrome so I kinda thought we'd gotten our share early on. lol He has done

> >amazingly these past couple weeks but is getting really tire of it. He has a

> >hard time communicating his feelings and tends to just tell the dr's he's

fine

> >when he can't walk. I am used to advocating for my son so this is not new to

me.

> >Here is a link to my blog, I am linking to the fist post about his illness.

You

> >can find the continuations on the side of the page.

> >http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> >

> > If you made it to the end of my mutterings thank you. This is all so new and

> >scary to us. The fevers freak me out and so do the rashes, since I am never

sure

> >what they mean.

> >

> >

> > Amy

> >

> >

>

>

[Guest guest]

Hi, Amy and welcome to the list. I was just reading your blog and see that Avery

came home last night. I hope he continues to improve, please keep us up to date

on how things are going. You have found a valuable resource here with this list,

feel free to ask any questions as you continue on your JA journey, Michele

( 23, spondy)

From: [mailto: ] On Behalf Of

Amy

Sent: Thursday, September 23, 2010 12:24 AM

Subject: New here son just dx with SO JRA

My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

are still in the hospital and have started anakinra shots. He's had 3 so far and

the first one really made improvement. He still had a fever spike but not quite

as bad. The second one still showed improvement but not as drastic and more low

grade fever. His spike didn't happen until later but right after the second

shot. After the second one he got a rash which has gotten progressively worse.

It's not like any of the rashes we've had over the past couple of weeks. I would

be happy to reshare my story but I have blogged it and am about to pass out from

exhaustion so I thought I'd just share the link to that. Avery also had down

syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I am used to advocating for my son so this is not new to me.

Here is a link to my blog, I am linking to the fist post about his illness. You

can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

Amy

[Guest guest]

Thank you Michele! We did come home. I was just catching up on my email and

was going to send an update. I have already found this list valuable.

Amy - Avery 17 so jra

________________________________

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

" " < >

Sent: Tue, September 28, 2010 1:54:32 PM

Subject: RE: New here son just dx with SO JRA

Hi, Amy and welcome to the list. I was just reading your blog and see that Avery

came home last night. I hope he continues to improve, please keep us up to date

on how things are going. You have found a valuable resource here with this list,

feel free to ask any questions as you continue on your JA journey, Michele

( 23, spondy)

From: [mailto: ] On Behalf Of

Amy

Sent: Thursday, September 23, 2010 12:24 AM

Subject: New here son just dx with SO JRA

My name is Amy and my son Avery who just turned 17 was just dx with SO jra. We

are still in the hospital and have started anakinra shots. He's had 3 so far and

the first one really made improvement. He still had a fever spike but not quite

as bad. The second one still showed improvement but not as drastic and more low

grade fever. His spike didn't happen until later but right after the second

shot. After the second one he got a rash which has gotten progressively worse.

It's not like any of the rashes we've had over the past couple of weeks. I would

be happy to reshare my story but I have blogged it and am about to pass out from

exhaustion so I thought I'd just share the link to that. Avery also had down

syndrome so I kinda thought we'd gotten our share early on. lol He has done

amazingly these past couple weeks but is getting really tire of it. He has a

hard time communicating his feelings and tends to just tell the dr's he's fine

when he can't walk. I am used to advocating for my son so this is not new to me.

Here is a link to my blog, I am linking to the fist post about his illness. You

can find the continuations on the side of the page.

http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

If you made it to the end of my mutterings thank you. This is all so new and

scary to us. The fevers freak me out and so do the rashes, since I am never sure

what they mean.

Amy

[Guest guest]

has been systemic onset since a couple months before his 3rd bday.He first

got a viral infection with his highest fever ever 103 and a concave rash under

his eye. Two weeks later he wrecked on his little bike and came in running and

crying that his scab on his elbow broke open and blood was running down his arm.

That night he complained of his lft ankle hurting.The next morning he went to

get out of bed and could not bare weight on his his lft leg and had a strange

looking rash on his lft thigh.Took him to the ped and he thought the rash was

contact from the wet grass and his ankle would be ok.He juggled 3 samples of

childrens Ibuprofen and gave it to us. All seemed fine,this was an a MON. Waited

until Friday when things seemed to be getting better.Took him to preschool and

they said he was compaining about his head hurting. did not talk much and

had speach problems.Turned out head was hand and his wrist was swollen.Took him

to the ped on Sat and had it x rayed nothing showed up but by this time the

screaming started and he felt hot turned out over 104 hot.Then every day it got

worse and worse.More joints involved but in less then 1 week our ped thought he

had SoJRA and made a referal.19 days after the bike wreck we were in high panic

mode and made an apointmet with a ped in Nashville that has connections with

Vanderbuilt childrens Hospital.By this time he was contracted in a fetal

position and his whole body was covered in hives and 5 welts on his back.It was

all over his face and when we carried him in other moms and dads stared and

moved their children away.The ped started to cry and excused herself to call

rheumatology at Vanderbilt and got in the next day.21 days after the very

first symptom.I realy thought my baby was dying.They gave him a tentative

diagnosis odf SoJRA and started high dose pred and maxed out his Ibuprofen. We

had to wait 3 more weeks to start MTX just in case but he was realy

obvious.Biologicals were new at the time so wound up maxed on 25mg MTX sub

q and 200mg Plaquenil along with maxed out on IBuprofen and still couldn't get

close to comming of the pred. It did help everything but his resistant ankle

that got drained and injected twice within three months.Oh by the way he was 6

months systemic free but 9 months on the waiting list for Enbrel. Our dear

moderator Georgina posted a ling on the Enbrel registry in 2002. I called,

was accepted and thats when the miricle happened.He was 4 at the time.He has

been playing baseball since 6,played football last yr and is trying out for his

middle school next yr. He has been in his second medicated remission for almost

4 yrs.Off of MTX for 9 months and could have come off the Enbral in August but

put him in a research study at Cincinatti Childrens for the withdrawl of TNF's

so it will be FEb.

There is hope and it is not impossible for these precious children to do

everything their friends do and more. Be agressive and stay on top of labs and

such.Whan started Enbrel it was his 3rd DMARD in combination plus the

NSAID and pred.

It can and will get better,just give it time,which is the hardest.

Becki and 12 systemic onset but no systemic since 2002

________________________________

From: nn <rosannwinn@...>

Sent: Fri, September 24, 2010 10:22:34 AM

Subject: Re: New here son just dx with SO JRA

Hi Amy,

I'm so sorry that your son is going through this. My daughter is systemic as

well, and was diagnosed 11 months ago in the hospital, with a situation that

sounds eerily similar to yours. I agree with - why no prednisone?? And,

I also love hearing about 's daughter n, because it gives me so much

hope. I never thought I would agree that the worst of this is in the beginning.

I thought I was going to die from anxiety, fear and grief in the beginning of

this journey. But some things are getting better. You are in a good place

being in a children's hospital. Hang in there, keep us posted. I am praying

for you and your son.

nn (, 9, systemic)

>

> > My name is Amy and my son Avery who just turned 17 was just dx with SO jra.

>We are still in the hospital and have started anakinra shots. He's had 3 so far

>and the first one really made improvement. He still had a fever spike but not

>quite as bad. The second one still showed improvement but not as drastic and

>more low grade fever. His spike didn't happen until later but right after the

>second shot. After the second one he got a rash which has gotten progressively

>worse. It's not like any of the rashes we've had over the past couple of weeks.

>I would be happy to reshare my story but I have blogged it and am about to pass

>out from exhaustion so I thought I'd just share the link to that. Avery also

had

>down syndrome so I kinda thought we'd gotten our share early on. lol He has

done

>amazingly these past couple weeks but is getting really tire of it. He has a

>hard time communicating his feelings and tends to just tell the dr's he's fine

>when he can't walk. I am used to advocating for my son so this is not new to

me.

>Here is a link to my blog, I am linking to the fist post about his illness. You

>can find the continuations on the side of the page.

>http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> >

> > If you made it to the end of my mutterings thank you. This is all so new and

>scary to us. The fevers freak me out and so do the rashes, since I am never

sure

>what they mean.

>

> >

> > Amy

> >

> >

>

>

>

>

[Guest guest]

Becki thank you so much for sharing your story with me. I feel lucky Avery was

in the hospital during the onset of this, I guess if that is even possible. We

were lucky to have Rheumatoid consulting in his second week of symptoms and

first few days of hospitalization. He can't take NSAID's because of kidney

damage that started with these symptoms. His Dr's are the one's who discovered

the link with IL1 and really believe in the biologics, unfortunately he was

allergic to the first one. Right now he is only on 60 mg of prednisone, coming

off 3 days of pulse. If we can keep him at 60 for 4 weeks, we can get him into

a study for the next biologic. But she did tell me that his disease will tell

us what to do and if he is too sick for the study then we will use whatever we

need to.

Amy - Avery 17 systemic

________________________________

From: Becki Larson <sojramom@...>

Sent: Sat, October 2, 2010 10:26:36 PM

Subject: Re: New here son just dx with SO JRA

has been systemic onset since a couple months before his 3rd bday.He first

got a viral infection with his highest fever ever 103 and a concave rash under

his eye. Two weeks later he wrecked on his little bike and came in running and

crying that his scab on his elbow broke open and blood was running down his arm.

That night he complained of his lft ankle hurting.The next morning he went to

get out of bed and could not bare weight on his his lft leg and had a strange

looking rash on his lft thigh.Took him to the ped and he thought the rash was

contact from the wet grass and his ankle would be ok.He juggled 3 samples of

childrens Ibuprofen and gave it to us. All seemed fine,this was an a MON. Waited

until Friday when things seemed to be getting better.Took him to preschool and

they said he was compaining about his head hurting. did not talk much and

had speach problems.Turned out head was hand and his wrist was swollen.Took him

to the ped on Sat and had it x rayed nothing showed up but by this time the

screaming started and he felt hot turned out over 104 hot.Then every day it got

worse and worse.More joints involved but in less then 1 week our ped thought he

had SoJRA and made a referal.19 days after the bike wreck we were in high panic

mode and made an apointmet with a ped in Nashville that has connections with

Vanderbuilt childrens Hospital.By this time he was contracted in a fetal

position and his whole body was covered in hives and 5 welts on his back.It was

all over his face and when we carried him in other moms and dads stared and

moved their children away.The ped started to cry and excused herself to call

rheumatology at Vanderbilt and got in the next day.21 days after the very

first symptom.I realy thought my baby was dying.They gave him a tentative

diagnosis odf SoJRA and started high dose pred and maxed out his Ibuprofen. We

had to wait 3 more weeks to start MTX just in case but he was realy

obvious.Biologicals were new at the time so wound up maxed on 25mg MTX sub

q and 200mg Plaquenil along with maxed out on IBuprofen and still couldn't get

close to comming of the pred. It did help everything but his resistant ankle

that got drained and injected twice within three months.Oh by the way he was 6

months systemic free but 9 months on the waiting list for Enbrel. Our dear

moderator Georgina posted a ling on the Enbrel registry in 2002. I called,

was accepted and thats when the miricle happened.He was 4 at the time.He has

been playing baseball since 6,played football last yr and is trying out for his

middle school next yr. He has been in his second medicated remission for almost

4 yrs.Off of MTX for 9 months and could have come off the Enbral in August but

put him in a research study at Cincinatti Childrens for the withdrawl of TNF's

so it will be FEb.

There is hope and it is not impossible for these precious children to do

everything their friends do and more. Be agressive and stay on top of labs and

such.Whan started Enbrel it was his 3rd DMARD in combination plus the

NSAID and pred.

It can and will get better,just give it time,which is the hardest.

Becki and 12 systemic onset but no systemic since 2002

________________________________

From: nn <rosannwinn@...>

Sent: Fri, September 24, 2010 10:22:34 AM

Subject: Re: New here son just dx with SO JRA

Hi Amy,

I'm so sorry that your son is going through this. My daughter is systemic as

well, and was diagnosed 11 months ago in the hospital, with a situation that

sounds eerily similar to yours. I agree with - why no prednisone?? And,

I also love hearing about 's daughter n, because it gives me so much

hope. I never thought I would agree that the worst of this is in the beginning.

I thought I was going to die from anxiety, fear and grief in the beginning of

this journey. But some things are getting better. You are in a good place

being in a children's hospital. Hang in there, keep us posted. I am praying

for you and your son.

nn (, 9, systemic)

>

> > My name is Amy and my son Avery who just turned 17 was just dx with SO jra.

>We are still in the hospital and have started anakinra shots. He's had 3 so far

>and the first one really made improvement. He still had a fever spike but not

>quite as bad. The second one still showed improvement but not as drastic and

>more low grade fever. His spike didn't happen until later but right after the

>second shot. After the second one he got a rash which has gotten progressively

>worse. It's not like any of the rashes we've had over the past couple of weeks.

>I would be happy to reshare my story but I have blogged it and am about to pass

>out from exhaustion so I thought I'd just share the link to that. Avery also

had

>

>down syndrome so I kinda thought we'd gotten our share early on. lol He has

done

>

>amazingly these past couple weeks but is getting really tire of it. He has a

>hard time communicating his feelings and tends to just tell the dr's he's fine

>when he can't walk. I am used to advocating for my son so this is not new to

me.

>

>Here is a link to my blog, I am linking to the fist post about his illness. You

>can find the continuations on the side of the page.

>http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> >

> > If you made it to the end of my mutterings thank you. This is all so new and

>scary to us. The fevers freak me out and so do the rashes, since I am never

sure

>

>what they mean.

>

> >

> > Amy

> >

> >

>

>

>

>

[Guest guest]

Amy,

Just out of curiousity do you know how long the doctors at Avery's hospital have

been using kineret or another biologic as a first line with systemics who are in

the hospital at onset? Is he at Texas ish ? Is that a Children's

hospital? I'm keeping my fingers crossed that Avery will maintain well at the

60mg so he can enter the study!

Thanks,

nn

> >

> > > My name is Amy and my son Avery who just turned 17 was just dx with SO

jra.

> >We are still in the hospital and have started anakinra shots. He's had 3 so

far

>

> >and the first one really made improvement. He still had a fever spike but not

> >quite as bad. The second one still showed improvement but not as drastic and

> >more low grade fever. His spike didn't happen until later but right after the

> >second shot. After the second one he got a rash which has gotten

progressively

> >worse. It's not like any of the rashes we've had over the past couple of

weeks.

>

> >I would be happy to reshare my story but I have blogged it and am about to

pass

>

> >out from exhaustion so I thought I'd just share the link to that. Avery also

had

> >

> >down syndrome so I kinda thought we'd gotten our share early on. lol He has

done

> >

> >amazingly these past couple weeks but is getting really tire of it. He has a

> >hard time communicating his feelings and tends to just tell the dr's he's

fine

> >when he can't walk. I am used to advocating for my son so this is not new to

me.

> >

> >Here is a link to my blog, I am linking to the fist post about his illness.

You

>

> >can find the continuations on the side of the page.

> >http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> > >

> > > If you made it to the end of my mutterings thank you. This is all so new

and

>

> >scary to us. The fevers freak me out and so do the rashes, since I am never

sure

> >

> >what they mean.

> >

> > >

> > > Amy

> > >

> > >

> >

> >

> >

> >

[Guest guest]

The director of the department saw us Friday in the hospital and she told me

they have been using them for 7 years and her team did the research that found

the link with IL1. He has been in Children's in Dallas but will be seen in

clinic at ish Rite and if he has to be admitted again on Wednesday it will

be there. I can tell he is not feeling any where as good today as he has been

after the pulse. He is having joint pain and isn't wanting to walk any more

again. He will not tell me if he hurts and doesn't complain so it makes it

hard. He is talking really funny and moving his mouth odd. We keep asking him

if it hurts but it's not normal for him. I did tell my husband that when they

put him on the iv morphine for the rash he spoke so clearly. He can't take

nsaids and the Tylenol doesn't help so I am at a loss. I also think he has an

ulcer, they started him on nexium and tums but he is still having break through

pain.

Amy - Avery 17 systemic

________________________________

From: nn <rosannwinn@...>

Sent: Sun, October 3, 2010 2:46:23 PM

Subject: Re: New here son just dx with SO JRA

Amy,

Just out of curiousity do you know how long the doctors at Avery's hospital have

been using kineret or another biologic as a first line with systemics who are in

the hospital at onset? Is he at Texas ish ? Is that a Children's

hospital? I'm keeping my fingers crossed that Avery will maintain well at the

60mg so he can enter the study!

Thanks,

nn

> >

> > > My name is Amy and my son Avery who just turned 17 was just dx with SO

jra.

>

> >We are still in the hospital and have started anakinra shots. He's had 3 so

>far

>

>

> >and the first one really made improvement. He still had a fever spike but not

> >quite as bad. The second one still showed improvement but not as drastic and

> >more low grade fever. His spike didn't happen until later but right after the

> >second shot. After the second one he got a rash which has gotten

progressively

>

> >worse. It's not like any of the rashes we've had over the past couple of

>weeks.

>

>

> >I would be happy to reshare my story but I have blogged it and am about to

>pass

>

>

> >out from exhaustion so I thought I'd just share the link to that. Avery also

>had

>

> >

> >down syndrome so I kinda thought we'd gotten our share early on. lol He has

>done

>

> >

> >amazingly these past couple weeks but is getting really tire of it. He has a

> >hard time communicating his feelings and tends to just tell the dr's he's

fine

>

> >when he can't walk. I am used to advocating for my son so this is not new to

>me.

>

> >

> >Here is a link to my blog, I am linking to the fist post about his illness.

>You

>

>

> >can find the continuations on the side of the page.

> >http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> > >

> > > If you made it to the end of my mutterings thank you. This is all so new

>and

>

>

> >scary to us. The fevers freak me out and so do the rashes, since I am never

>sure

>

> >

> >what they mean.

> >

> > >

> > > Amy

> > >

> > >

> >

> >

> >

> >

[Guest guest]

If you think he has an ulcer, please look into it. These meds, as you know, can

so affect the stomach and you would not want to miss anything. There have been

children who have issues and if they are not looked into, it can lead to awful

consequences. Many of the kids here take something like Tagament or Prevacid

automatically with the meds they are on. If you think there is an issue, I would

have it checked out.

As to the mouth issue, sometimes the TMJ becomes inflamed or the jaw area.

Perhaps that is why he is talking funny. Keep us updated, Michele ( 23,

spondy)

From: [mailto: ] On Behalf Of

Amy Spurger

Sent: Sunday, October 03, 2010 6:10 PM

Subject: Re: New here son just dx with SO JRA

The director of the department saw us Friday in the hospital and she told me

they have been using them for 7 years and her team did the research that found

the link with IL1. He has been in Children's in Dallas but will be seen in

clinic at ish Rite and if he has to be admitted again on Wednesday it will

be there. I can tell he is not feeling any where as good today as he has been

after the pulse. He is having joint pain and isn't wanting to walk any more

again. He will not tell me if he hurts and doesn't complain so it makes it

hard. He is talking really funny and moving his mouth odd. We keep asking him

if it hurts but it's not normal for him. I did tell my husband that when they

put him on the iv morphine for the rash he spoke so clearly. He can't take

nsaids and the Tylenol doesn't help so I am at a loss. I also think he has an

ulcer, they started him on nexium and tums but he is still having break through

pain.

Amy - Avery 17 systemic

________________________________

From: nn <rosannwinn@...<mailto:rosannwinn%40gmail.com>>

<mailto: %40>

Sent: Sun, October 3, 2010 2:46:23 PM

Subject: Re: New here son just dx with SO JRA

Amy,

Just out of curiousity do you know how long the doctors at Avery's hospital have

been using kineret or another biologic as a first line with systemics who are in

the hospital at onset? Is he at Texas ish ? Is that a Children's

hospital? I'm keeping my fingers crossed that Avery will maintain well at the

60mg so he can enter the study!

Thanks,

nn

> >

> > > My name is Amy and my son Avery who just turned 17 was just dx with SO

jra.

>

> >We are still in the hospital and have started anakinra shots. He's had 3 so

>far

>

>

> >and the first one really made improvement. He still had a fever spike but not

> >quite as bad. The second one still showed improvement but not as drastic and

> >more low grade fever. His spike didn't happen until later but right after the

> >second shot. After the second one he got a rash which has gotten

progressively

>

> >worse. It's not like any of the rashes we've had over the past couple of

>weeks.

>

>

> >I would be happy to reshare my story but I have blogged it and am about to

>pass

>

>

> >out from exhaustion so I thought I'd just share the link to that. Avery also

>had

>

> >

> >down syndrome so I kinda thought we'd gotten our share early on. lol He has

>done

>

> >

> >amazingly these past couple weeks but is getting really tire of it. He has a

> >hard time communicating his feelings and tends to just tell the dr's he's

fine

>

> >when he can't walk. I am used to advocating for my son so this is not new to

>me.

>

> >

> >Here is a link to my blog, I am linking to the fist post about his illness.

>You

>

>

> >can find the continuations on the side of the page.

> >http://mom2anz.blogspot.com/2010/09/its-party-when-dad-goes-to-work.html

> > >

> > > If you made it to the end of my mutterings thank you. This is all so new

>and

>

>

> >scary to us. The fevers freak me out and so do the rashes, since I am never

>sure

>

> >

> >what they mean.

> >

> > >

> > > Amy

> > >

> > >

> >

> >

> >

> >