RE: Re: Question... anyone's child have T1 diabetes..... and jra/jia?

[Guest guest]

- my son has pain in the same places as your daughter. The rheumy's often

thought he had psoriatic arthritis but did not have the nail ridges or

psoriasis, so he has the diagnosis of spondyloarthropy/spondylitis. They labeled

him both ways.

While there is no blood test for arthritis, they can check and see if she is

HLAB 27 positive/negative. My son is neg, but still has the diagnosis based on

the symptoms he has. If you are positive, there is an increased chance of organ

involvement.

Sorry about the diabetes diagnosis added for your daughter. I know that my son's

rheumy said that our kids have hyper immune systems which means that the

likelihood of having more than one auto immune disease is pretty high. Michele

( 23, spondy)

From: [mailto: ] On Behalf Of

Sent: Wednesday, April 06, 2011 9:10 PM

Subject: Re: Question... anyone's child have T1 diabetes..... and jra/jia?

Audra,

She is 8 now, and has had psoriasis since she was three,a year later she started

developing nail psoriasis.... right now it has effected all of her finger nails

and seven of her toe nails. She has been complaining of joint pain in the same

areas for two years and achillies heal pain. She has also been complaining of

pain in areas where the tendons meet. I didn't know that they could have pain

there until I read it on a post while googling. While her psoriasis is under

control with topicals..... the only thing she has gotten is naprosyn for the

pain. She has stiffness in the morning with her right knee. She has limped going

to school and coming home after school. She has had pain in her fingers and the

ring finger on her right hand has gotten red, hot and painful but never swollen.

Naprosyn took care of the pain, but the heat and redness never went away until

the next day. She also has hypothyroidism..... after the diagnosis of diabetes

two weeks ago, I just can't see this not happening.

She has p on her whole scalp, ears, eyes, left knee, inverse, guttate on her

back, although it's not bad on her back but they itche her like crazy (not that

the rest doesn't but she just makes me scratch her back all the time). I don't

want to be right, I just want to be ready.

> >

> > My daughter was diagnosed almost two weeks ago with type1 and while were

being hospitalized, I asked them to run tests for psoriatic arthritis.... they

ran two or three tests,and the rheumatic was negative, but the sed rate one was

a little high.. the doc making rounds at that time said it could be due to the

diabetes on coming. Wondering if that was true, and should I see get another

test run, or if what he was telling me is bunk.... I don't know what they would

do for her, but I surely don't want it would get worse.

> >

> > Any help would be appreciated...... thank you!

> >

> >

> >

>

[Guest guest]

When was first having issues (his first complaint was pain in his ankle),

he was 13 and it took about 7 months of seeing orthopedic specialists before we

went to a ped rheumy who diagnosed him with JA on his first visit. As he

continued seeing her, about 6 months into it, he was diagnosed with spondy. He

had started playing baseball again and was complaining of hip pain, in addition

to the pain he had in his feet and ankles. When the rheumy examined him she

detected swelling in his pelvic rim, not his hips. This with his inability to

touch his toes (which I had not noticed before) and the pain and swelling in his

Achilles tendon (not only the ankles where we thought it was) gave him the

spondylitis diagnosis. At first he was put on sulfasalazine (he had been on

Celebrex since the original visit) as this is what was commonly used first for

spondylitis type symptoms. He maxed out on that (3000 mgs) and it did not help

at all. This is when he was put on MTX. It worked quickly for him. He was

around 15 by this time and really growing, so his doses had to be increased. He

was gradually taken off the Celebrex. Around the time he was 18- 19 he was

beginning to lower the dose of MTX with success and his second rheumy (his first

one had moved) was also moving on and was to transition to an adult

rheumy. He did not want to at that time and with his insurance ending (he left

college and this was before the Illinois law which now covers children until

their 26th bday in school or not) he decided he did not want to see a dr

anymore. He did finally go to a rheumy about 2 years ago when he had insurance

again, and the rheumy wanted him back on MTX (at least to start) but has

decided not to use meds at this time. He is currently not seeing the rheumy,

although he still has symptoms and we know he should go back. I think for him he

was so tired of drs and hospitals that he just doesn't want to deal with it

right now. We do talk about it however and I encourage him to go to the rheumy.

Yes, he does still have swelling, although not quite like he did at first. We

used to say he had marshmallow ankles. I did not detect the swelling in his

lower back. He has had random swelling in his feet, toes, hands and fingers over

the years. Tendons can become inflamed just as a joint can. Chris' issues are

mainly with his tendons. You could check and see if your daughter can touch her

toes easily. It is actually a test the drs do at an appointment. I know I was

surprised when could not, but then how often do you notice such things as

your kids get older? He still has days of morning stiffness and days when his

hands and back are sore. I can tell by the way he walks if he is not having a

good day. Changes of season, when his allergies act up, are when he is at his

worst. When he was on the Methotrexate he was well controlled and mostly pain

free.

Sorry so long. Hope this helps somewhat! Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Sent: Thursday, April 07, 2011 10:01 AM

Subject: Re: Question... anyone's child have T1 diabetes..... and jra/jia?

Micele,

What are they doing for his condition? Does he have any swelling? The one ped

rheumy we saw did diagnose her with JIA, but just so she could justify the

naprosyn and until she saw more symtpoms..... did you have a hard time with

getting diagnosed?

> > >

> > > My daughter was diagnosed almost two weeks ago with type1 and while were

being hospitalized, I asked them to run tests for psoriatic arthritis.... they

ran two or three tests,and the rheumatic was negative, but the sed rate one was

a little high.. the doc making rounds at that time said it could be due to the

diabetes on coming. Wondering if that was true, and should I see get another

test run, or if what he was telling me is bunk.... I don't know what they would

do for her, but I surely don't want it would get worse.

> > >

> > > Any help would be appreciated...... thank you!

> > >

> > >

> > >

> >

>

>

>

>

[Guest guest]

There may not be noticeable swelling. Let me go back to when this all started -

sorry if I type too much info . See if this gives you any ideas.

has had allergies since he was born, numerous ear infections, developed

asthma when he was 5. Just before he turned 13 he had pain in his ankle. It was

so bad he could not run and walked with a limp. We suspected an injury, even

though at first there was no noticeable swelling. We tried different things with

two different orthopedic surgeons. Eventually the idea of arthritis arose,

especially since he had pain when he woke in the morning. It wasn't like resting

it made it better. The ped rheumy diagnosed him based on the symptoms he had -

ankle pain and morning pain and stiffness. The blood tests really didn't add

much. He is rheumatoid factor negative, ANA positive. Not an unusual finding for

kids with JA. The ped rheumy did find inflammation when she put her hands on him

and examined his whole body. Even though those areas did not look swollen to

see. His ankles and toes were the only thing I can truly remember having much

puffiness and that is not all the time. But does he still have a form of JA?

Yes. He had/has pain when he should not have, stiffness like an old man when he

was/is young, and could not move like a teenager/young adult should be able to.

I am not one to think that only an NSAID like naprosyn will work for this

disease. It only helps reduce the pain and inflammation. It does not take care

of the underlying issue and thus allows the disease to continue to attack the

fluid in the joints and tendons. Have the drs talked about adding a biologic for

her psoriasis? That would also help the arthritis symptoms she seems to be

having. Forgive me if you have answered this before, but is your daughter being

seen by a pediatric rheumatologist? If you can get her to one attached to a

children's hospital or university I think you can get a more thorough exam. You

mention the dr is looking for more symptoms - what exactly is she looking for?

What does she blame the pain on, if not from some form of arthritis?

About the MRI, had one once when he had sprained his ankle. This was a few

years after his diagnosis and it was taking very long to heal. A ped orthopedic

surgeon ordered one. Nothing showed up; it was determined that the arthritis was

causing his body to take longer to heal. Some kids here on the list have had

MRI's. Perhaps someone can post about their experience.

Sorry again if too much info - I just find it sometimes helps to hear what

someone has gone through in the hopes that one little detail might help.

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Sent: Thursday, April 07, 2011 1:47 PM

Subject: Re: Question... anyone's child have T1 diabetes..... and jra/jia?

Michele,

Had they ever mentioned to you that there may not be any swelling? And have they

ever done MRI's to check for inflammation that can't be seen by x-rays? The not

seeing the swelling was the main reason why the one ped she saw wouldn't

diagnose her with anything else but JIA... but even a phone conversation she

said she just doesn't think that she has any kind of arthritis....

> > > >

> > > > My daughter was diagnosed almost two weeks ago with type1 and while were

being hospitalized, I asked them to run tests for psoriatic arthritis.... they

ran two or three tests,and the rheumatic was negative, but the sed rate one was

a little high.. the doc making rounds at that time said it could be due to the

diabetes on coming. Wondering if that was true, and should I see get another

test run, or if what he was telling me is bunk.... I don't know what they would

do for her, but I surely don't want it would get worse.

> > > >

> > > > Any help would be appreciated...... thank you!

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

[Guest guest]

I think she is wanting to see swelling or hear me say she has stiffness which

she doesnt. Our rheumy is a PED at our childrens hospital.

Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

Michele,

Had they ever mentioned to you that there may not be any swelling? And have

they ever done MRI's to check for inflammation that can't be seen by x-rays? The

not seeing the swelling was the main reason why the one ped she saw wouldn't

diagnose her with anything else but JIA... but even a phone conversation she

said she just doesn't think that she has any kind of arthritis...

> > > >

> > > > My daughter was diagnosed almost two weeks ago with type1 and while

were being hospitalized, I asked them to run tests for psoriatic arthritis....

they ran two or three tests,and the rheumatic was negative, but the sed rate one

was a little high.. the doc making rounds at that time said it could be due to

the diabetes on coming. Wondering if that was true, and should I see get another

test run, or if what he was telling me is bunk.... I don't know what they would

do for her, but I surely don't want it would get worse.

> > > >

> > > > Any help would be appreciated...... thank you!

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

[Guest guest]

- Sorry, I was answering the questions from . I kind of hijacked her

response to Audra originally. I should have stated that more clearly when I

typed my response. had stated originally that her daughter had stiffness

in the morning. Sorry your daughter is also having issues and not really a

diagnosis. Michele

From: [mailto: ] On Behalf Of

jacobson

Sent: Thursday, April 07, 2011 3:42 PM

Subject: RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

I think she is wanting to see swelling or hear me say she has stiffness which

she doesnt. Our rheumy is a PED at our childrens hospital.

Re: Question... anyone's child have T1 diabetes..... and jra/jia?

Michele,

Had they ever mentioned to you that there may not be any swelling? And have they

ever done MRI's to check for inflammation that can't be seen by x-rays? The not

seeing the swelling was the main reason why the one ped she saw wouldn't

diagnose her with anything else but JIA... but even a phone conversation she

said she just doesn't think that she has any kind of arthritis...

> > > >

> > > > My daughter was diagnosed almost two weeks ago with type1 and while were

being hospitalized, I asked them to run tests for psoriatic arthritis.... they

ran two or three tests,and the rheumatic was negative, but the sed rate one was

a little high.. the doc making rounds at that time said it could be due to the

diabetes on coming. Wondering if that was true, and should I see get another

test run, or if what he was telling me is bunk.... I don't know what they would

do for her, but I surely don't want it would get worse.

> > > >

> > > > Any help would be appreciated...... thank you!

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

[Guest guest]

I realized after i typed it that this wasnt for me!! Sorry. I probably dont even

need to be here. There are never answers for my daughter. She has tummy issues

to and a gtube with no real diagnosis there either. It sucks.

RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

There may not be noticeable swelling. Let me go back to when this all started -

sorry if I type too much info . See if this gives y

[The entire original message is not included]

[Guest guest]

If you can get any info or ideas on your daughter's treatment from anything we

post, then you need to be here. There are many kids here with GI issues as

well. Many types of arthritis conditions are linked to GI issues. So the pain

she is having could be related.

It is so frustrating when your child is hurting and the people you turn to for

answers, like drs, cannot seem to give you any direction. There are some here on

the list whose kids went years without a proper diagnosis. We are a good group

to bounce ideas and frustrations off, Hugs, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

jacobson

Sent: Thursday, April 07, 2011 4:04 PM

Subject: RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

I realized after i typed it that this wasnt for me!! Sorry. I probably dont even

need to be here. There are never answers for my daughter. She has tummy issues

to and a gtube with no real diagnosis there either. It sucks.

RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

There may not be noticeable swelling. Let me go back to when this all started -

sorry if I type too much info . See if this gives y

[The entire original message is not included]

[Guest guest]

Thanks. Its just been so hard and im to the end of the rope. All I can do is

just cry. I hate all that she goes through. We are going 2 hours away tomorrow

to meet with a GI and I pray for some kind of plan of action.

RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

I realized after i typed it that this wasnt for me!! Sorry. I probably dont

even need to be here. There are never answers for my daughter. She has tummy

issues to and a gtube with no real diagnosis there either. It sucks.

-----Original Message-----

From: Tepper, Michele

<MTepper@...<mailto:MTepper%40ftportfolios.com>>

Sent: Thursday, April 07, 2011 3:48 PM

<mailto: %40> <

[The entire original message is not included]

[Guest guest]

I'll be praying along with you! Please be sure to let us know how the

appointment goes when you can, Michele

From: [mailto: ] On Behalf Of

jacobson

Sent: Thursday, April 07, 2011 4:22 PM

Subject: RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

Thanks. Its just been so hard and im to the end of the rope. All I can do is

just cry. I hate all that she goes through. We are going 2 hours away tomorrow

to meet with a GI and I pray for some kind of plan of action.

RE: Re: Question... anyone's child have T1 diabetes..... and

jra/jia?

I realized after i typed it that this wasnt for me!! Sorry. I probably dont even

need to be here. There are never answers for my daughter. She has tummy issues

to and a gtube with no real diagnosis there either. It sucks.

-----Original Message-----

From: Tepper, Michele

<MTepper@...<mailto:MTepper%40ftportfolios.com><mailto:MTepper%40ft\

portfolios.com>>

Sent: Thursday, April 07, 2011 3:48 PM

To:

<mailto: %40><mailto: %40ya\

hoogroups.com> <

[The entire original message is not included]