Re: Doctors appointments yesterday

[Guest guest]

Hi Melinda.

I'm glad to hear that you had your appointments yesterday, but am sorry that you

didn't get more conclusive information from them.

FWIW, my son had all the signs of JRA in his bloodwork and NO signs of anything

in his joints (which, honestly I am counting as a blessing right now). Other

than having all the bloodwork be out of whack (I need to look up what his SED

rates were when he was in the hospital), he looked and acted like any normal 13

month old (well 13 months at the time). His ped. rheum was still convinced it

was/is JRA and started him on treatments. The last thing he wanted was for it

to start moving in to his joints. So, honestly, I think your mommy instinct is

spot on. You'd never know to look at how he gets around that he was working on

JRA - he walks, is starting to climb, crawled, everything. My husband and I are

wondering if maybe he had a slight irritation in his joints as he started

walking the week before his first birthday (around 10/22) and then pretty much

stopped until a week after he got home from the hospital (he was hospitalized on

11/24 and came home on 11/31). But in his defense he was also running high

fevers, not eating and feeling cruddy. So even the rheum just thinks he was too

sick to feel like doing any walking.

So honestly, I think (and I really thought my ped rheum said this happens too)

that a patient can present with all the bloodwork signs of JRA and not have any

affected joints yet, especially in systemic.

Can you get a second opinion from another ped. rheum after the GI appointment?

Hugs - it is so hard working to get the little ones diagnosed some times...

Sharon (, 16 months old, systemic)

>

> We had our visits with the infectious disease and rheumatologist yesterday.

The rheumatologist called this morning and said that some of the labs had come

back and that he did have low iron (which we alreaady knew) and that his sed

rate and CRP levels were elevated which did mean he did have inflammation in his

body. We are still waiting for some of the labs to return this afternoon and

are still waiting for the results of the genetic disease panel which will take 4

to 6 weeks to return.

>

> She wants us to see a pediatric GI doctor because of the elevated sed rate and

CRP to rule out GI inflammation.

>

> Through my research, I have gathered that these levels are high with arthritis

also but the rheum doctor says that he does not have arthritis because on her

exam she said his joints and body looked perfect. I still have my own gut

feeling that all of his problems and symptoms are due to arthritis. His

symptoms match arthritis perfectly. But who am I to say, I am just his mother.

>

> We are waiting for the other labs results and waiting to get in to see a GI

doctor.

>

> Thanks for listening,

> Melinda

>

[Guest guest]

Sharon,

I think we will see the GI doctor and wait for all the labs work to come back

(some results will take 4 to 6 weeks). After that, if the GI doctor has nothing

to offer and we still have no definitive answers regarding the labs, I think I

will request a second opinion from another ped rheumatologist.

My son has monthly fevers with severe joint aches and pains and headache that

last 3 to 4 days. These episodes come every 4 to 5 weeks. During these

episodes, he has no other symptoms other than the fever and aches and pains. He

also has anemia and just diagnosed 2 weeks ago with a lazy eye that we had no

idea about and we are now having to patch his eye every day.

What symptoms did your son present with to let you know something was wrong?

Thanks,

Melinda

> >

> > We had our visits with the infectious disease and rheumatologist yesterday.

The rheumatologist called this morning and said that some of the labs had come

back and that he did have low iron (which we alreaady knew) and that his sed

rate and CRP levels were elevated which did mean he did have inflammation in his

body. We are still waiting for some of the labs to return this afternoon and

are still waiting for the results of the genetic disease panel which will take 4

to 6 weeks to return.

> >

> > She wants us to see a pediatric GI doctor because of the elevated sed rate

and CRP to rule out GI inflammation.

> >

> > Through my research, I have gathered that these levels are high with

arthritis also but the rheum doctor says that he does not have arthritis because

on her exam she said his joints and body looked perfect. I still have my own

gut feeling that all of his problems and symptoms are due to arthritis. His

symptoms match arthritis perfectly. But who am I to say, I am just his mother.

> >

> > We are waiting for the other labs results and waiting to get in to see a GI

doctor.

> >

> > Thanks for listening,

> > Melinda

> >

>

[Guest guest]

Sometimes GI problems go along with arthritis. So it is possible to have both.

It is also possible to have the fevers first then the joint issues, just as in

psoriatic arthritis where you have the skin issues first then the joint issues

can follow.

This is a case where you wish there was a blood test for JIA - which there is

not unfortunately. Trust your instinct. In your first post you stated he is

having morning joint pain and stiffness - that is a huge indicator of some form

of arthritis caused by the immune system. Did the dr put her hands on him and

actually check all the joints? I have to assume she did. If I were you, I would

go to the GI dr to make sure there is nothing going on there. My son was tested

for Crohn's after his diagnosis because that can go along with the type of

arthritis he has. So going to a GI dr is not unusual. I would also look into a

second opinion with a ped rheumy. If you are not comfortable with that, push

this rheumy. Ask her what could possibly be causing his pain, if not some type

of arthritis? No child should have to live in pain and you are the only advocate

your child has. If this dr cannot give you any answers, then find a dr who can

help. There are so many types of arthritis out there - it does not only affect

the joints. My son has inflammation in his tendons in various parts of his body

- not just in the joints. It is the inflammation of the tendons that cause him

pain.

Please feel free to ask any questions you have and someone here can surely give

you some good info. Hugs, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

worriedandexhaustedmom

Sent: Tuesday, March 22, 2011 9:08 AM

Subject: Doctors appointments yesterday

We had our visits with the infectious disease and rheumatologist yesterday. The

rheumatologist called this morning and said that some of the labs had come back

and that he did have low iron (which we alreaady knew) and that his sed rate and

CRP levels were elevated which did mean he did have inflammation in his body. We

are still waiting for some of the labs to return this afternoon and are still

waiting for the results of the genetic disease panel which will take 4 to 6

weeks to return.

She wants us to see a pediatric GI doctor because of the elevated sed rate and

CRP to rule out GI inflammation.

Through my research, I have gathered that these levels are high with arthritis

also but the rheum doctor says that he does not have arthritis because on her

exam she said his joints and body looked perfect. I still have my own gut

feeling that all of his problems and symptoms are due to arthritis. His symptoms

match arthritis perfectly. But who am I to say, I am just his mother.

We are waiting for the other labs results and waiting to get in to see a GI

doctor.

Thanks for listening,

Melinda

[Guest guest]

Melinda,

My son had GI problems ruled out first as well. He didn't have any GI symptoms,

but since my husband has ulcerative colitis, the doctor wanted to make sure. My

husband has joint pain with his colitis, so it is possible.

Another thing that I have been thinking about. I wonder if you need to see a

neurologist with those headaches of his. If they are coincidental, then maybe a

neuro could help get them under control.

I am so sorry that he is in such pain. Did the rheum. give him something for

the pain and stiffness? Just thought about that.

By the way, being " just a mom " to a child is the most important job in the

world. You carried or chose that baby. You love him more than anyone in the

world. You know him better than any doctor could. You are his advocate. He

can't fight for himself, but you are his fighter.

I never pictured myself having to fight for my kids. I trusted the medical

profession. It is my profession. But we have been through " growing pains " ,

" hamstring injury " , and plenty of " I don't knows " . I just wish it was like

this, I don't know, BUT let me help you find someone who will, AND let me see

what I can do to help in the meanwhile. There are very few of those guys around.

Keep your chin up!

Audra

14 poly 07

Peyton 12 poly 08

>

> We had our visits with the infectious disease and rheumatologist yesterday.

The rheumatologist called this morning and said that some of the labs had come

back and that he did have low iron (which we alreaady knew) and that his sed

rate and CRP levels were elevated which did mean he did have inflammation in his

body. We are still waiting for some of the labs to return this afternoon and

are still waiting for the results of the genetic disease panel which will take 4

to 6 weeks to return.

>

> She wants us to see a pediatric GI doctor because of the elevated sed rate and

CRP to rule out GI inflammation.

>

> Through my research, I have gathered that these levels are high with arthritis

also but the rheum doctor says that he does not have arthritis because on her

exam she said his joints and body looked perfect. I still have my own gut

feeling that all of his problems and symptoms are due to arthritis. His

symptoms match arthritis perfectly. But who am I to say, I am just his mother.

>

> We are waiting for the other labs results and waiting to get in to see a GI

doctor.

>

> Thanks for listening,

> Melinda

>