Re: Re: from - Sorry so LONG

July 13, 2004

, Get the second opinion. Your doctor is being too dismissive. Go

with your gut and keep fighting for your child. He shouldn't be in pain,

and all of the inflammation is damaging his joints. Keep a detailed diary.

Some of these kids are complicated, and the doctors just have to take the

time to figure them out. JRA kids do not, as a rule, have digestive

problems. And don't let the doctors tell you that a certain symptom isn't

jra. All of these kids can present so funny. I can't tell you how many

times that I have heard that, " the rash doesn't itch, " or " systemic jra

doesn't cause headaches. " Sorry, but we have had this disease for five

years, and I can tell you that n itches with the rash, and she gets

headaches with the flares. Your child needs more medication to control the

jra, move on to the next doctor. Good luck, (n, 15,systemic)

Re: from - Sorry so LONG

> Thank you for the answer- Let me tell you a little bit about what

> goes on with Seth. When he was very little he wouldn't crawl. When he

> began crawling he refused to move much and surely didn't want to

> walk. He just always seemed to be sick or in pain. When he was four I

> took him to his doctor and told him that his knees seemed to bother

> him terribly and they feel very funny when you hold them to feel them

> move. He then did a SED rate on him. Answer came back that Seth's Sed

> rate was VERY elevated in his opinion and he wanted to repeat it a

> few times over a month or so to see if it stays that way. It did. He

> then referred me to a local rheumy that had a waiting list 4 months

> long. I was called around Christmas that year and told that the

> Rheumy had bumped me for another few months. We waited and showed up

> in the spring. When I showed up they assumed I was the patient. I

> told them it was my son and was informed- we don't see children. As

> you can see RIGHT away I was ill. So off we go to Empory University

> in ATL. We got in in October. Emory has seen him exactly twice since

> then. All they do is look at his sed rate and ask me if he feels

> better. We went from try use motrin, to use this liquid Naprosyn to

> Try this tolectin. Nothing seems to relieve any pain for Seth. His

> ankles, knees, wrists, fingers, and jaws seem to bother him. He

> breaks bones VERY easily. He has broken three fingers this year by

> simply catching a ball or stubbing them. On top of that he has had

> several episodes where his breathing is VERY labored. Almost seems

> like an asthma attack- This has totally been dismissed on most

> occassions. His eyes are very sensitive. He had an eye checkup at the

> Dr. at Emorys recommendation at which time the doctor said no major

> problems, within 6 months that has changed and Seth now wears

> glasses. The eye dr says it is consistent with iritis (uveitis- not

> sure which word to use here). Seth's stomach was terribly hurt by the

> tolectin pills ground up that I was pumping into him. When I asked

> the Dr. about it, he basically told me all JRA kids have intestinal

> problems - some even need surgery and it was also dismissed.

> So here I have this child- my baby- whose joints hurt, is very

> fatigued, has trouble breathing the majority of the time- seems to

> coincide with flare-has bad eyes, painful stomach more days than not

> and just basically looks sick all of the time!

>

> I am so lost as his mother as to what to do. I hope Shands can help.

> I know this was long but since you asked I wanted to let you see what

> I deal with. Trust me I am in NO way whining I have read some

> incredible moms on here and know I can get advice to trust!

> Look forward to talking again

>

> > TANYA:

> > First of all, you are doing the right thing by getting another

> opinion if

> > you don't feel that your son is being cared for properly or that

> your

> > concerns are being investigated. I applaud you for seeking out

> another

> > opinion.Unfortunately, I don't have any experience with Shands.

> > One thing I did when we went out of state for another opinion, is

> give

> > the doctor a diary of my son's testing, medications, and symptoms.

> This

> > way they could quickly get a picture of what he had already had

> done and

> > what did and didn't work for him.

> > Can you tell us more about your son's symptoms and ongoing issues?

> There

> > are many parents here that have children with systemic JRA and they

> are a

> > wealth of knowledge. They can probably guide you in the kinds of

> > questions to ask.

> > and Rob 15 Spondy

> >

>

July 14, 2004

In a message dated 7/14/04 12:30:17 PM Eastern Daylight Time, MTepper@... writes:

Trouble breathing should not be taken lightly by these drs.

did get stomach pain from the NSAIDs we were trying, so once

diagnosed

Having just had my own breathing difficulty (post-op atelectasis), I can't believe a doctor or doctors would brush this off! I know I was scared that I might have a harder time breathing, let alone a child! I will never take breathing for granted again. Oops thundering out, should get off puter, but want to read my email. So if you all don't hear from me for a while it's because Patty didn't get off the puter and it blew up!

Take care.

Patty

July 14, 2004

...

Im glad you are going for a 2nd opinion... your son is NOT getting the treatment he should be from your surrent doctors. I cannot believe how laid back they sound and uncaring.

This is a serious disease and needs to be treated as such. It sounds like Seth has soo much going on and naprosyn is NOT going to help him on its own.

I hope you get better answers from Shands......let us know how it goes...

Hugs Helen and (6,systemic)

you can read Nicks story at www.caringbridge.org/mn/nicholasb

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "tweeks5" <tweeks5@...> >Reply- > >Subject: Re: from - Sorry so LONG >Date: Tue, 13 Jul 2004 23:06:22 -0000 > >Thank you for the answer- Let me tell you a little bit about what >goes on with Seth. When he was very little he wouldn't crawl. When he >began crawling he refused to move much and surely didn't want to >walk. He just always seemed to be sick or in pain. When he was four I >took him to his doctor and told him that his knees seemed to bother >him terribly and they feel very funny when you hold them to feel them >move. He then did a SED rate on him. Answer came back that Seth's Sed >rate was VERY elevated in his opinion and he wanted to repeat it a >few times over a month or so to see if it stays that way. It did. He >then referred me to a local rheumy that had a waiting list 4 months >long. I was called around Christmas that year and told that the >Rheumy had bumped me for another few months. We waited and showed up >in the spring. When I showed up they assumed I was the patient. I >told them it was my son and was informed- we don't see children. As >you can see RIGHT away I was ill. So off we go to Empory University >in ATL. We got in in October. Emory has seen him exactly twice since >then. All they do is look at his sed rate and ask me if he feels >better. We went from try use motrin, to use this liquid Naprosyn to >Try this tolectin. Nothing seems to relieve any pain for Seth. His >ankles, knees, wrists, fingers, and jaws seem to bother him. He >breaks bones VERY easily. He has broken three fingers this year by >simply catching a ball or stubbing them. On top of that he has had >several episodes where his breathing is VERY labored. Almost seems >like an asthma attack- This has totally been dismissed on most >occassions. His eyes are very sensitive. He had an eye checkup at the >Dr. at Emorys recommendation at which time the doctor said no major >problems, within 6 months that has changed and Seth now wears >glasses. The eye dr says it is consistent with iritis (uveitis- not >sure which word to use here). Seth's stomach was terribly hurt by the >tolectin pills ground up that I was pumping into him. When I asked >the Dr. about it, he basically told me all JRA kids have intestinal >problems - some even need surgery and it was also dismissed. >So here I have this child- my baby- whose joints hurt, is very >fatigued, has trouble breathing the majority of the time- seems to >coincide with flare-has bad eyes, painful stomach more days than not >and just basically looks sick all of the time! > >I am so lost as his mother as to what to do. I hope Shands can help. >I know this was long but since you asked I wanted to let you see what >I deal with. Trust me I am in NO way whining I have read some >incredible moms on here and know I can get advice to trust! >Look forward to talking again > > > > > TANYA: > > First of all, you are doing the right thing by getting another >opinion if > > you don't feel that your son is being cared for properly or that >your > > concerns are being investigated. I applaud you for seeking out >another > > opinion.Unfortunately, I don't have any experience with Shands. > > One thing I did when we went out of state for another opinion, is >give > > the doctor a diary of my son's testing, medications, and symptoms. >This > > way they could quickly get a picture of what he had already had >done and > > what did and didn't work for him. > > Can you tell us more about your son's symptoms and ongoing issues? >There > > are many parents here that have children with systemic JRA and they >are a > > wealth of knowledge. They can probably guide you in the kinds of > > questions to ask. > > and Rob 15 Spondy > > > > MSN Life Events gives you the tips and tools to handle the turning points in your life.

July 14, 2004

Hi, . Hugs to you and your little one! I agree with everyone else

-Get him to another dr ASAP. I am surprised that a hospital attached to

a universtiy cannot give him better care. I hope the new hospital can

help. I always remember what Chris' ped rheumy said when he was first

diagnosed - pain is not normal, and our goal is to get rid of it however

possible. Not always an attainable goal for these kids, but its what we

shoot for. Trouble breathing should not be taken lightly by these drs.

did get stomach pain from the NSAIDs we were trying, so once

diagnosed he went right on Celebrex. No stomach problems for him since.

I am glad you are getting to another dr. Once he is being treated

properly, I would send those original drs a letter about what meds he is

on and how he is doing. Just to show them that they should not leave a

child in pain, they should be figuring out how to get rid of it! Good

luck to you, Michele ( 17, pauci & spondy)

Re: from - Sorry so LONG

Thank you for the answer- Let me tell you a little bit about what

goes on with Seth. When he was very little he wouldn't crawl. When he

began crawling he refused to move much and surely didn't want to

walk. He just always seemed to be sick or in pain. When he was four I

took him to his doctor and told him that his knees seemed to bother

him terribly and they feel very funny when you hold them to feel them

move. He then did a SED rate on him. Answer came back that Seth's Sed

rate was VERY elevated in his opinion and he wanted to repeat it a

few times over a month or so to see if it stays that way. It did. He

then referred me to a local rheumy that had a waiting list 4 months

long. I was called around Christmas that year and told that the

Rheumy had bumped me for another few months. We waited and showed up

in the spring. When I showed up they assumed I was the patient. I

told them it was my son and was informed- we don't see children. As

you can see RIGHT away I was ill. So off we go to Empory University

in ATL. We got in in October. Emory has seen him exactly twice since

then. All they do is look at his sed rate and ask me if he feels

better. We went from try use motrin, to use this liquid Naprosyn to

Try this tolectin. Nothing seems to relieve any pain for Seth. His

ankles, knees, wrists, fingers, and jaws seem to bother him. He

breaks bones VERY easily. He has broken three fingers this year by

simply catching a ball or stubbing them. On top of that he has had

several episodes where his breathing is VERY labored. Almost seems

like an asthma attack- This has totally been dismissed on most

occassions. His eyes are very sensitive. He had an eye checkup at the

Dr. at Emorys recommendation at which time the doctor said no major

problems, within 6 months that has changed and Seth now wears

glasses. The eye dr says it is consistent with iritis (uveitis- not

sure which word to use here). Seth's stomach was terribly hurt by the

tolectin pills ground up that I was pumping into him. When I asked

the Dr. about it, he basically told me all JRA kids have intestinal

problems - some even need surgery and it was also dismissed.

So here I have this child- my baby- whose joints hurt, is very

fatigued, has trouble breathing the majority of the time- seems to

coincide with flare-has bad eyes, painful stomach more days than not

and just basically looks sick all of the time!

I am so lost as his mother as to what to do. I hope Shands can help.

I know this was long but since you asked I wanted to let you see what

I deal with. Trust me I am in NO way whining I have read some

incredible moms on here and know I can get advice to trust! Look forward

to talking again

> TANYA:

> First of all, you are doing the right thing by getting another

opinion if

> you don't feel that your son is being cared for properly or that

your

> concerns are being investigated. I applaud you for seeking out

another

> opinion.Unfortunately, I don't have any experience with Shands. One

> thing I did when we went out of state for another opinion, is

give

> the doctor a diary of my son's testing, medications, and symptoms.

This

> way they could quickly get a picture of what he had already had

done and

> what did and didn't work for him.

> Can you tell us more about your son's symptoms and ongoing issues?

There

> are many parents here that have children with systemic JRA and they

are a

> wealth of knowledge. They can probably guide you in the kinds of

> questions to ask. and Rob 15 Spondy

>

July 25, 2004

Hi ,

You've gotten some wonderful advice so far, in the replies that you've

received. And you can hopefully sense that all of us here can understand

and relate well to your concerns, and feel compassionate about what

you're going through. Many of us have gone through a similar scenario.

Some of us were lucky enough to not have to wait quite so long, or to

travel so far, to finally find a doctor who was able to treat our child

in a way that brought about positive health improvements.

As you can tell from reading the posts here in this group, for any

length of time, there's an inherent conflict that exists within

pediatric rheumatology. On the one hand, we are scared about the

consequences of using strong drugs and the possibility of our children

having adverse reactions to them. We don't want to overmedicate. On the

other hand, we realize that JRA is sometimes a very serious and

destructive disease, one that can cause irreparable physical (and

emotional?) harm to our children. We want to prevent that harm and seek

out the safest means of treating and controlling the disease.

Some doctors are very aggressive and others use a milder approach in

their treatments. They see our children for a very brief and limited

time, to evaluate their joints and get a recent history, and they look

over the lab results and try to figure out a plan of action. You, as the

child's parent, have a lot more information to go on. You know the full

history of symptoms and see the patterns over a longer period of time.

If your child's doctor is not taking your valid concerns seriously, then

definitely find another one who will. If you have problems with your

son's care or treatment plan, be sure to let the doctors know what you

are unhappy about and what you expect. Ask if they believe your

expectations are reasonable, given the circumstances. Continue to

educate yourself about JRA, and the ways it is treated. You can be your

child's greatest advocate. Let the doctors know that you feel his

disease is too aggressive to be treated so mildly. Your son's level of

pain is affecting his daily living and you want him to have more and

better improvement. Sometimes it's just not possible, at the moment, but

when there are obviously many avenues yet to be tried, it doesn't make

sense to settle and see your son suffer. Trust yourself and your

feelings. You know best. Find a doctor you can work with.

Let us know how it goes, okay?

Take Care,

Georgina

tweeks5 wrote: