Re: Scheduled to see a GI specialist??????

March 29, 2011

Well I am glad that your rheumy sent you to the GI Specialist and did not just

dump you. Take a deep breath and try to relax for the next two weeks. I do not

know what the GI doc can tell you but have heard many other kiddos that were

sent to the GI for something related to and similar in symptoms. Continue to

keep good documentation on when and where the fevers and rashes are. As you are

well aware, you are your childs best advocate. When we went down this path in

the beginning we had to rule out many many things. Others will chime in here to

share their input on the GI issues.

Veri & Jaye 17 poly

Scheduled to see a GI specialist??????

Well, we have gotten our appointment to see the ped GI that our rheumatologist

recommended. The appointment is in two weeks.

I do not understand why we are seeing GI. My son has all the signs of arthritis

(elevated ANA, elevated sed rate and CRP, anemia, monthly fevers with SEVERE

joint aches and pains and headache, and a newly diagnosed " lazy " eye). He has no

GI symptoms whatsoever. Our rheum says that " HE DOES NOT HAVE ARTHRITIS " and was

very stern in saying this. I do not understand why she is not even considering

it even with all of his symptoms. I definitely do not understand why she is

sending him to GI.

We are going ahead with the GI visit. However, after that if we still have no

answers, I am going to request a second opinion from another ped rheumatologist.

March 30, 2011

Your son sounds like he has arthritis written all over him! Still see the GI

maybe he/she might have a good opinion. Your chocie to see another rhuemy sounds

like a good one. ALWAYS and I repeat ALWAYS go with your gut your a mom,

99.9.%Of the time your gut is right. (even though kids hate to admit it)

Thoughts, prayers and best wishes,

Shea

On Mar 29, 2011, at 9:47 PM, " worriedandexhaustedmom "

<melindaparks@...> wrote:

> Well, we have gotten our appointment to see the ped GI that our rheumatologist

recommended. The appointment is in two weeks.

>

> I do not understand why we are seeing GI. My son has all the signs of

arthritis (elevated ANA, elevated sed rate and CRP, anemia, monthly fevers with

SEVERE joint aches and pains and headache, and a newly diagnosed " lazy " eye). He

has no GI symptoms whatsoever. Our rheum says that " HE DOES NOT HAVE ARTHRITIS "

and was very stern in saying this. I do not understand why she is not even

considering it even with all of his symptoms. I definitely do not understand why

she is sending him to GI.

>

> We are going ahead with the GI visit. However, after that if we still have no

answers, I am going to request a second opinion from another ped rheumatologist.

>

March 30, 2011

My son also was sent to a GI (although after his JA diagnosis) to rule out

Crohn's. My suggestion would be to go into the ped GI with an open mind, explain

your son's symptoms (if you have things written down, that really helps) and see

what he/she thinks. Perhaps this specialist will agree with the possibility of

arthritis or can figure out where the pain is coming from.

If it helps at all, many of us have gone through what you are experiencing.

Going to different drs, seeing your child not getting better, etc until finally

something clicks and the right dr can help. If your rheumy cannot help you to

understand why she is sending you to another specialist, there is a

communication problem, at the very least. Getting a second opinion may

definitely be in order. Did the rheumy give you any ideas as to what else could

be causing the pain, fevers, etc in your son? Keep us posted, Michele (

23, spondy)

From: [mailto: ] On Behalf Of

worriedandexhaustedmom

Sent: Tuesday, March 29, 2011 8:47 PM

Subject: Scheduled to see a GI specialist??????

Well, we have gotten our appointment to see the ped GI that our rheumatologist

recommended. The appointment is in two weeks.

I do not understand why we are seeing GI. My son has all the signs of arthritis

(elevated ANA, elevated sed rate and CRP, anemia, monthly fevers with SEVERE

joint aches and pains and headache, and a newly diagnosed " lazy " eye). He has no

GI symptoms whatsoever. Our rheum says that " HE DOES NOT HAVE ARTHRITIS " and was

very stern in saying this. I do not understand why she is not even considering

it even with all of his symptoms. I definitely do not understand why she is

sending him to GI.

We are going ahead with the GI visit. However, after that if we still have no

answers, I am going to request a second opinion from another ped rheumatologist.

March 30, 2011

My husband has ulcerative colitis. This disease causes inflammation in the

large intestine that causes many ulcers to form in the lining of the large

intestine. That causes bloody diarrhea and pain. It comes in flares and

remissions. The difference between UC and crohn's is that crohns can be

anywhere from the mouth to the anus, and eat through the whole wall of the

intestine, not just the lining.

UC is an autoimmune disease, like crohn's. Many autoimmune disease can affect

the sed. rate and CRP. They are also on a similar " gene-line " .

Both UC and crohns cause an arthritis like condition in the joints. I have

talked to crohns patients that were diagnosed because their " eye looked funny at

the opthamologist and he sent them to GI " . My friend at work with crohns

complains of her hands, way more than her tummy problems. My dh has a really

tough time with his joints and is very limited on the meds that he takes because

of his intestine.

The original rheumy had my son scoped when he was being diagnosed. It was

because of his father's gi disease, he had NO symptoms either. The rheumy said

that he could be developing the joint symptoms, before the GI symptoms.

So, I am not sure what the rheumy is looking at, but at least he is sending you

somewhere. We had an orthopedist just tell us to go to the ER, he didn't know

what to do. We have also had a rheumy tell us to come back in 6 weeks, sorry

she is in pain. Kid couldn't walk.

Maybe the GI can at least rule out the GI stuff, and you can move on to your

second opinion. My best advice is to get a good pediatrician who will help out

in the meanwhile, and help get referrals. The ped. rheumys here take forever to

get an appointment. In fact, you may want to go ahead and get an appointment,

whether the GI checks out or not. That way you won't be waiting forever. He

obviously has SOMETHING!

You are doing a great job, Mom. Keep up the work.

Audra

14 poly 07

Peyton 13 poly 08

>

> Well, we have gotten our appointment to see the ped GI that our rheumatologist

recommended. The appointment is in two weeks.

>

> I do not understand why we are seeing GI. My son has all the signs of

arthritis (elevated ANA, elevated sed rate and CRP, anemia,

March 30, 2011

Michele,

The rheumy basically just came in and examined my son. She looked at his

joints, his fingers, arms, legs, toes, etc. She said, " He does not have

arthritis because his joints look good " . She did say that the fevers and

symptoms had been going on long enough (1 1/2 years) to warrant further

laboratory testing that other doctors said were too expensive and did not want

to confront the insurance company about.

The next day, the rheumy called me and said that his sed rate and CRP were

elevated and that these measured the amount of inflammation in the body. She

wanted us to see a GI specialist to rule out GI inflammation. The other labs

were fine except we are still waiting for the results of the genetic panel.

Those results will not be back for another 4 to 6 weeks.

I just find it hard to believe that there is anything GI going on because he has

no GI symptoms whatsoever. I also do not understand why the rheumy was so quick

to dismiss him having arthritis because I have talked to so many parents that

say that there child did not exhibit outward joint signs of the disease either

at first.

This is not the diagnosis I am hoping for. I do not want my child to be

diagnosed with JRA. However, this has been going on for 1 1/2 years and if this

is the problem, I know that early diagnosis and treatment of this disease

greatly improves the outcome later down the road.

I know that all of you have gone through this, seeing so many doctors and

waiting for a diagnosis. I appreciate all of your comments and insight.

Thanks,

Melinda

>

> My son also was sent to a GI (although after his JA diagnosis) to rule out

Crohn's. My suggestion would be to go into the ped GI with an open mind, explain

your son's symptoms (if you have things written down, that really helps) and see

what he/she thinks. Perhaps this specialist will agree with the possibility of

arthritis or can figure out where the pain is coming from.

> If it helps at all, many of us have gone through what you are experiencing.

Going to different drs, seeing your child not getting better, etc until finally

something clicks and the right dr can help. If your rheumy cannot help you to

understand why she is sending you to another specialist, there is a

communication problem, at the very least. Getting a second opinion may

definitely be in order. Did the rheumy give you any ideas as to what else could

be causing the pain, fevers, etc in your son? Keep us posted, Michele (

23, spondy)

>

> From: [mailto: ] On Behalf Of

worriedandexhaustedmom

> Sent: Tuesday, March 29, 2011 8:47 PM

>

> Subject: Scheduled to see a GI specialist??????

>

> Well, we have gotten our appointment to see the ped GI that our rheumatologist

recommended. The appointment is in two weeks.

>

> I do not understand why we are seeing GI. My son has all the signs of

arthritis (elevated ANA, elevated sed rate and CRP, anemia, monthly fevers with

SEVERE joint aches and pains and headache, and a newly diagnosed " lazy " eye). He

has no GI symptoms whatsoever. Our rheum says that " HE DOES NOT HAVE ARTHRITIS "

and was very stern in saying this. I do not understand why she is not even

considering it even with all of his symptoms. I definitely do not understand why

she is sending him to GI.

>

> We are going ahead with the GI visit. However, after that if we still have no

answers, I am going to request a second opinion from another ped rheumatologist.

>

March 30, 2011

I agree with the others who said try to breathe....go into the GI with an open

mind and see what he/she has to say.

My daughter was DX with poly JIA at 18 months, her DX is now Crohn's ... and

they are quite sure the arthritis is Crohn's related. She presented with NO GI

symptoms at 18 months...only later, just before 3 years of age, did those crop

up.

Initially she was DX by Gastro as Ulcerative Colitis, but since then, the

disease has affected more of her intestinal tract, and she also developed mouth

ulcers, a fistula and a stricture....so NOW we know it's Crohn's. She is 6.

Hang in there.

Kathy

mom of , 6

Crohn's

poly JIA

Uveitis

and Luke, 9 - gifted, ADHD and a general handful

> >

> > My son also was sent to a GI (although after his JA diagnosis) to rule out

Crohn's. My suggestion would be to go into the ped GI with an open mind, explain

your son's symptoms (if you have things written down, that really helps) and see

what he/she thinks. Perhaps this specialist will agree with the possibility of

arthritis or can figure out where the pain is coming from.

> > If it helps at all, many of us have gone through what you are experiencing.

Going to different drs, seeing your child not getting better, etc until finally

something clicks and the right dr can help. If your rheumy cannot help you to

understand why she is sending you to another specialist, there is a

communication problem, at the very least. Getting a second opinion may

definitely be in order. Did the rheumy give you any ideas as to what else could

be causing the pain, fevers, etc in your son? Keep us posted, Michele (

23, spondy)

> >

> > From: [mailto: ] On Behalf

Of worriedandexhaustedmom

> > Sent: Tuesday, March 29, 2011 8:47 PM

> >

> > Subject: Scheduled to see a GI specialist??????

> >

> > Well, we have gotten our appointment to see the ped GI that our

rheumatologist recommended. The appointment is in two weeks.

> >

> > I do not understand why we are seeing GI. My son has all the signs of

arthritis (elevated ANA, elevated sed rate and CRP, anemia, monthly fevers with

SEVERE joint aches and pains and headache, and a newly diagnosed " lazy " eye). He

has no GI symptoms whatsoever. Our rheum says that " HE DOES NOT HAVE ARTHRITIS "

and was very stern in saying this. I do not understand why she is not even

considering it even with all of his symptoms. I definitely do not understand why

she is sending him to GI.

> >

> > We are going ahead with the GI visit. However, after that if we still have

no answers, I am going to request a second opinion from another ped

rheumatologist.

> >

March 30, 2011

At least the rheumy did the testing - it is my pet peeve when the insurance is

given as a reason not to treat. Really - a child in pain? Do you not think the

parents want to help their child no matter what? Sorry - I'm venting now!! LOL

Anyway, you are so right - no one wants this diagnosis. I remember when Chris

was first diagnosed. I sat on the phone in disbelief talking with the ped

rheumy. When we were at the first visit she said he had arthritis, and we talked

and then had blood work done. I was very new to all this, and figured the dr

would say after getting the results she was wrong and the blood work showed he

was fine and his pain was from something like a sprain or a fracture. However

when I called for the results and she began to explain about treatment, I could

not believe it. I remember clearly the dr saying " Didn't I tell you he had

arthritis when you were here? " and I said " yes, but I did not believe it

really " . She spoke with me on that phone for almost half an hour that day. That

said, getting a diagnosis gives you some direction and that is what you are

looking for. Something to go on, something to make your child better. A year and

a half is so long to not have answers. You are doing all the right things, as

you know. Keep fighting and you will get something! Hugs, Michele ( 23,