Re: multiple conditions

[Guest guest]

There are a couple of people here with kids that have both JRA and Crohn's and of course having autoimmune diseases increases the likelihood of future family memebers having them too. It also seems common for kids with rheumatic diseases to have other conditions as well like allergies, and asthma which are of course, immune system issues.

Also medical anorrexia is pretty common in a lot of kids with JRA. Inability to gain weight ..... ... seen a lot of that at the JA camp....

Issadora

On Tue, May 6, 2008 at 12:50 PM, J. Cassady <j_cassady25@...> wrote:

Hello,I was wondering if anyone else is having problems with their kids presenting with multiple conditions going on. My 14 year old daughter was diagnosed with Poly JRA last March, but had issues for many years

prior to her diagnosis. It took me changing pediatricians before we were took seriously. She was tested for Crohn's Disease when she was around 7, and they said she didn't have it. Now she is diagnosed with the JRA and they

are checking her for Crohn's again. She is having problems all over again, but they are much worse this time. Her father passed away from complications of Crohn's in 2005 after many years of battling the

disease. I was diagnosed in 2003 with Lupus. I know I had it for many many years prior to diagnosis, but I had one major flare that actually got my doctors attention. So my poor daughter has auto-immune disorders

on both side of her family...unknown to us when we had her.She is going to the eye doctor Thursday to be checked for Uveitis and has an appointment set for June 3rd with the orthopedist due to issues with her spine.

She is so sad these days and can hardly eat. She is losing weight like crazy and doesn't really have much extra to lose. Has anyone else had any experience with JRA and Crohn's???Thanks,

mom to 14 Poly JRA -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

My son also deals with multiple conditions. Aside from his

enthesitis related arthritis he has scoliosis, kyphosis and pectus

carinatum. And he has painful pronating flat feet and an extra bone

in his each foot, all complicated by the arthritis inflammation in

the tendons in his feet. For all of these things he sees an

orthopedist. He also has digestive problems and sees a

gastroenterologist - he has had stomach erosions from the NSAID's

and he is being closely watched for Crohn's. He also has annual

checkups with an opthomologist to check for iritis/uveitis (never

had it, though) and with a cardiologist (they're watching him for

Marfan syndrome). Plus he sees a dermatologist for psoriasis, which

is part of his autoimmune condition. And he sees a psychologist and

a psychiatrist because he has problems with anxiety and panic

attacks, and now has anti-anxiety medication that he can take on bad

days.

The best thing we ever did was get my son into therapy with the

psychologist. He has a lot on his plate health-wise, and he feels

like 'damaged goods'. Being a teen is so hard anyway, and all the

health problems were sending him over the edge. He still struggles

with depression and anxiety but little by little he is starting to

overcome it.

If you can at all afford it I would consider getting your daughter

into therapy. It sounds like she is having a really hard time right

now and could use some help. Or maybe you could find another teen

in your area who is also dealing with autoimmune issues, and the two

could correspond or get together. I think if they realize they

aren't the only ones in their situation it makes it somewhat easier.

Keep us posted on how your daughter is doing. And give yourself

some TLC, too. It's so hard to watch our kids going through this,

isn't it?

>

> Hello,

>

> I was wondering if anyone else is having problems with their kids

> presenting with multiple conditions going on. My 14 year old

daughter

> was diagnosed with Poly JRA last March, but had issues for many

years

> prior to her diagnosis. It took me changing pediatricians before

we

> were took seriously.

>

> She was tested for Crohn's Disease when she was around 7, and they

> said she didn't have it. Now she is diagnosed with the JRA and

they

> are checking her for Crohn's again. She is having problems all

over

> again, but they are much worse this time. Her father passed away

from

> complications of Crohn's in 2005 after many years of battling the

> disease.

>

> I was diagnosed in 2003 with Lupus. I know I had it for many many

> years prior to diagnosis, but I had one major flare that actually

got

> my doctors attention. So my poor daughter has auto-immune

disorders

> on both side of her family...unknown to us when we had her.

>

> She is going to the eye doctor Thursday to be checked for Uveitis

and

> has an appointment set for June 3rd with the orthopedist due to

> issues with her spine.

>

> She is so sad these days and can hardly eat. She is losing weight

> like crazy and doesn't really have much extra to lose.

>

> Has anyone else had any experience with JRA and Crohn's???

>

> Thanks,

> mom to 14 Poly JRA

>

[Guest guest]

I guess I can add in a detail or two here as well. I have JRA and Fibromyalgia. My JRA has always been atypical but was the best-fit at the time. However, I have had a few other doctos suspect other rheumatic diseases but I neever quite fit those either and currently have insurance issues so can't get some of the tests I need to check out my lungs and stuff.

That is interesting about the Enthesitis Arthritis. I bet a lot of his symtpoms are related to that... I also have pretty bad flat feet as well and wear AFO's (Ankle foot orthosis) to help me with walking. I have limited dorsal flexion as a result of them and/or the arthritis. I have scoliosis too. I have had inflammed tendons... archillies tendonitis and more recently tenosynoviis in my thumb areas along with hypermobility. I have had asthma since I was two as well as multuple types of allergies. I had allergy shots for a lon while and eventually my allergies calmed down some but they are still there. I have polycystic ovary syndrome and was diagnosed with that at around 10 as well as a host of other wird endocrine stuff like i produce a little to much cortisol and have some mild anchanthosis nigeriens (doscoloriation around my neck and other areas), i have this lovely buffalo hump and a propensity for having cusshings syndrome which is why I got that. At least thaqt is what my pediatric endocronologist told us long ago.

I tend to have pretty persistant anemia and chronic inflammation markers in my blood no matter what is done. My lungs are questionable.. for years they said I had asthma but than when I started getting frequent pulmonary function test by respirtory therapists, they picked up a different consistent pattern in my lungs... did further testing and said that I have a lowered lung capacity. They suspected pulmonary fibrosis due to having chronic inflammatory condition most of my life but they needed to do a CAT scan to confirm it. I was part of a research study latter and they found the same thing and suspected the same thing but due to insurance issues, I wasn't able to get the CT scan to confirm it plus they can't really do anything about it anyways even if I do have it. They blamed it on my arthritis but it doesn't seem to be a common effect of JRA.

Anyways, I think you will find that a lot of kids are outside the box when it comes to these diseases. BTW_ I have a friend with Marfans and he has a host of odds and end problems as well including asthma and allergies too along with the heart, eye, connective tissue issues and major chronic pain. He's tall as heck and skinny with the extra long wing span and so on. He has several members in his family who all have it. His brother died from the heart issue common with it.

Issadora

On Wed, May 7, 2008 at 12:03 AM, enriquus <enriquus@...> wrote:

My son also deals with multiple conditions. Aside from his enthesitis related arthritis he has scoliosis, kyphosis and pectus carinatum. And he has painful pronating flat feet and an extra bone in his each foot, all complicated by the arthritis inflammation in

the tendons in his feet. For all of these things he sees an orthopedist. He also has digestive problems and sees a gastroenterologist - he has had stomach erosions from the NSAID's and he is being closely watched for Crohn's. He also has annual

checkups with an opthomologist to check for iritis/uveitis (never had it, though) and with a cardiologist (they're watching him for Marfan syndrome). Plus he sees a dermatologist for psoriasis, which is part of his autoimmune condition. And he sees a psychologist and

a psychiatrist because he has problems with anxiety and panic attacks, and now has anti-anxiety medication that he can take on bad days. The best thing we ever did was get my son into therapy with the

psychologist. He has a lot on his plate health-wise, and he feels like 'damaged goods'. Being a teen is so hard anyway, and all the health problems were sending him over the edge. He still struggles with depression and anxiety but little by little he is starting to

overcome it. If you can at all afford it I would consider getting your daughter into therapy. It sounds like she is having a really hard time right now and could use some help. Or maybe you could find another teen

in your area who is also dealing with autoimmune issues, and the two could correspond or get together. I think if they realize they aren't the only ones in their situation it makes it somewhat easier.Keep us posted on how your daughter is doing. And give yourself

some TLC, too. It's so hard to watch our kids going through this, isn't it?>> Hello,> > I was wondering if anyone else is having problems with their kids > presenting with multiple conditions going on. My 14 year old daughter

> was diagnosed with Poly JRA last March, but had issues for many years > prior to her diagnosis. It took me changing pediatricians before we > were took seriously. > > She was tested for Crohn's Disease when she was around 7, and they

> said she didn't have it. Now she is diagnosed with the JRA and they > are checking her for Crohn's again. She is having problems all over > again, but they are much worse this time. Her father passed away

from > complications of Crohn's in 2005 after many years of battling the > disease. > > I was diagnosed in 2003 with Lupus. I know I had it for many many > years prior to diagnosis, but I had one major flare that actually

got > my doctors attention. So my poor daughter has auto-immune disorders > on both side of her family...unknown to us when we had her.> > She is going to the eye doctor Thursday to be checked for Uveitis

and > has an appointment set for June 3rd with the orthopedist due to > issues with her spine.> > She is so sad these days and can hardly eat. She is losing weight > like crazy and doesn't really have much extra to lose.

> > Has anyone else had any experience with JRA and Crohn's???> > Thanks,> mom to 14 Poly JRA>

-- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

Hi, I think most kids with autoimmune disease tend to end up with more than one. My rheumatologist says that once the immune system freaks, it's possible that it will freak again. I was diagnosed with juvenile ankylosing spondylitis and my doctors believe I have chrons as well but there is always random debate about that. I am so sorry for everything that and you have had to deal with. I lost my mom about a year ago and it was incredibly difficult I felt like losing a parent at 22 was so unfair, I cannot even fathom how hard it would be to be as young as she was. My thoughts are with you both! Hopefully you get some answers!With Love, (JAS, 23)"J. Cassady" <j_cassady25@...> wrote: Hello, I was wondering if anyone else is having problems with their kids presenting with multiple conditions going on. My 14 year old daughter was diagnosed with Poly JRA last March, but had issues for many years prior to her diagnosis. It took me changing pediatricians before we were took seriously. She was tested for Crohn's Disease when she was around 7, and they said she didn't have it. Now she is diagnosed with the JRA and they are checking her for Crohn's again. She is having problems all over again, but they are much worse this time. Her father passed away from complications of Crohn's in 2005 after many years of battling the disease. I was diagnosed in 2003 with Lupus. I know I had it for many many years prior

to diagnosis, but I had one major flare that actually got my doctors attention. So my poor daughter has auto-immune disorders on both side of her family...unknown to us when we had her. She is going to the eye doctor Thursday to be checked for Uveitis and has an appointment set for June 3rd with the orthopedist due to issues with her spine. She is so sad these days and can hardly eat. She is losing weight like crazy and doesn't really have much extra to lose. Has anyone else had any experience with JRA and Crohn's??? Thanks, mom to 14 Poly JRA Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi :

I am mom to Hannah, 11 with multiple health issues. Hannah was born with asthma (had her first attack at 8 weeks old). She then developed severe reflux. She has had chronic joint pain for many years and has never been truly diagnosed, just unspecified arthritis. She is also very hypermobile in many of her joints, which I think is hampering our diagnosis. She also suffers from regular, severe migraines and has immune deficiencies along with allergies. There is also many issues on both sides of our family that are not in her favor, yet my 13 year old son is overall very healthy.

Beth & Hannah, 11, unspecified arthritis w/hypermobility; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

multiple conditions

Hello,I was wondering if anyone else is having problems with their kids presenting with multiple conditions going on. My 14 year old daughter was diagnosed with Poly JRA last March, but had issues for many years prior to her diagnosis. It took me changing pediatricians before we were took seriously. She was tested for Crohn's Disease when she was around 7, and they said she didn't have it. Now she is diagnosed with the JRA and they are checking her for Crohn's again. She is having problems all over again, but they are much worse this time. Her father passed away from complications of Crohn's in 2005 after many years of battling the disease. I was diagnosed in 2003 with Lupus. I know I had it for many many years prior to diagnosis, but I had one major flare that actually got my doctors attention. So my poor daughter has auto-immune disorders on both side of her family...unknown to

us when we had her.She is going to the eye doctor Thursday to be checked for Uveitis and has an appointment set for June 3rd with the orthopedist due to issues with her spine.She is so sad these days and can hardly eat. She is losing weight like crazy and doesn't really have much extra to lose. Has anyone else had any experience with JRA and Crohn's???Thanks, mom to 14 Poly JRA

[Guest guest]

Hi, . Welcome to the group. (Just

have to say, both of you and your daughter have two of my favorite names –

I have a daughter named and one named ! LOL) Anyway, I am sorry

your daughter is having these issues. My son was tested for Crohn’s

because of his weight and because he has a form of arthritis called

spondylitis. It is common for the two to present together. Luckily he does not

have it, but again it can happen. You might want to check out the website www.spondylitis.org for info on the

disease. Your daughter may actually have spondy, especially if she is having

issues with the spine.

My son also goes through periods where he

does not eat much. He is 6’4” and weighs about 155. So he is tall

and very thin. He will go for periods where he eats a ton of food and does not

gain weight, and then will just lose his appetite and not eat much at all for a

few days. He just does not feel like eating. I am not sure if it related to his

arthritis, I just assume it is. is just starting back with a rheumy after

going 2 years with no doctor (by his choice) so we are kind of back to the

beginning in a lot of ways. I know how you feel when they are so thin and just

don’t seem to eat enough. Sometimes the kids benefit from seeing a

therapist to help work through their issues with having a chronic illness.

went for a while and it did help him. With all that your daughter has

been through, it might help.

I am glad your concerns are being taken

seriously. You are being a great advocate for your daughter in working through

the puzzle of symptoms. This list can provide lots of info and support. Please

let us know how your daughter is doing, and ask any questions you may have.

Someone has probably been through it before too.

Michele ( 20, spondy)

From: [mailto: ] On Behalf Of J. Cassady

Sent: Tuesday, May 06, 2008 2:50

PM

Subject: multiple conditions

Hello,

I was wondering if anyone else is having problems with their kids

presenting with multiple conditions going on. My 14 year old daughter

was diagnosed with Poly JRA last March, but had issues for many years

prior to her diagnosis. It took me changing pediatricians before we

were took seriously.

She was tested for Crohn's Disease when she was around 7, and they

said she didn't have it. Now she is diagnosed with the JRA and they

are checking her for Crohn's again. She is having problems all over

again, but they are much worse this time. Her father passed away from

complications of Crohn's in 2005 after many years of battling the

disease.

I was diagnosed in 2003 with Lupus. I know I had it for many many

years prior to diagnosis, but I had one major flare that actually got

my doctors attention. So my poor daughter has auto-immune disorders

on both side of her family...unknown to us when we had her.

She is going to the eye doctor Thursday to be checked for Uveitis and

has an appointment set for June 3rd with the orthopedist due to

issues with her spine.

She is so sad these days and can hardly eat. She is losing weight

like crazy and doesn't really have much extra to lose.

Has anyone else had any experience with JRA and Crohn's???

Thanks,

mom to 14 Poly JRA

[Guest guest]

I just wanted to thank you all for all the support and wonderful

advice you have given me. It is so wonderful to know there are others

going through the same thing we are.

We feel so alone. We don't know anyone around here (we're in Texas,

just outside of Austin) that have any auto-immune disorders that are

anywhere close to age. I know a lady that is in her 40's, but

she was diagnosed only a year ago so she doesn't know what it's like

to grow up being so different.

I wish all you the best.

Hugs,

mom to 14 Poly JRA

>

> Hello,

>

> I was wondering if anyone else is having problems with their kids

> presenting with multiple conditions going on. My 14 year old

daughter

> was diagnosed with Poly JRA last March, but had issues for many

years

> prior to her diagnosis. It took me changing pediatricians before we

> were took seriously.

>

> She was tested for Crohn's Disease when she was around 7, and they

> said she didn't have it. Now she is diagnosed with the JRA and they

> are checking her for Crohn's again. She is having problems all over

> again, but they are much worse this time. Her father passed away

from

> complications of Crohn's in 2005 after many years of battling the

> disease.

>

> I was diagnosed in 2003 with Lupus. I know I had it for many many

> years prior to diagnosis, but I had one major flare that actually

got

> my doctors attention. So my poor daughter has auto-immune disorders

> on both side of her family...unknown to us when we had her.

>

> She is going to the eye doctor Thursday to be checked for Uveitis

and

> has an appointment set for June 3rd with the orthopedist due to

> issues with her spine.

>

> She is so sad these days and can hardly eat. She is losing weight

> like crazy and doesn't really have much extra to lose.

>

> Has anyone else had any experience with JRA and Crohn's???

>

> Thanks,

> mom to 14 Poly JRA

>

[Guest guest]

, I have heard that kids with JRA can get Chron's and vice versus. However, if they have Chron's first they with classify them as only having Chron's. Weird. Our daughter has JRA, Uveitis, Chronic Sinusitis, and VUR (kidney reflux). Our almost three year old probably has Chron's and so far the baby is doing well. I believe it is extremely common to have mulitple "issues" with JRA. I would suspect that is because JRA is an auto-immune diesease and if you have a compromised immune system you are going to have many more immune related issues.... Not sure if this helps or not, but good luck!

Alia and Caroline, age 6, poly and uveitis

multiple conditions

Hello,

I was wondering if anyone else is having problems with their kids

presenting with multiple conditions going on. My 14 year old daughter

was diagnosed with Poly JRA last March, but had issues for many years

prior to her diagnosis. It took me changing pediatricians before we

were took seriously.

She was tested for Crohn's Disease when she was around 7, and they

said she didn't have it. Now she is diagnosed with the JRA and they

are checking her for Crohn's again. She is having problems all over

again, but they are much worse this time. Her father passed away from

complications of Crohn's in 2005 after many years of battling the

disease.

I was diagnosed in 2003 with Lupus. I know I had it for many many

years prior to diagnosis, but I had one major flare that actually got

my doctors attention. So my poor daughter has auto-immune disorders

on both side of her family...unknown to us when we had her.

She is going to the eye doctor Thursday to be checked for Uveitis and

has an appointment set for June 3rd with the orthopedist due to

issues with her spine.

She is so sad these days and can hardly eat. She is losing weight

like crazy and doesn't really have much extra to lose.

Has anyone else had any experience with JRA and Crohn's???

Thanks,

mom to 14 Poly JRA

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

My sister has chron's disease and arthritis problems. It isn't

uncommon for autoimmune diseases to have a secondary disease such as

asthma, chron's, fibromyalgia, lupus, hypothryoid etc..

I hope that starts feeling better soon. It's so difficult to

watch you kids suffer.

sonia (aundrea 12 fibromyalgia)-

-- In , " J. Cassady " <j_cassady25@...> wrote:

>

> Hello,

>

> I was wondering if anyone else is having problems with their kids

> presenting with multiple conditions going on. My 14 year old

daughter

> was diagnosed with Poly JRA last March, but had issues for many

years

> prior to her diagnosis. It took me changing pediatricians before we

> were took seriously.

>

> She was tested for Crohn's Disease when she was around 7, and they

> said she didn't have it. Now she is diagnosed with the JRA and they

> are checking her for Crohn's again. She is having problems all over

> again, but they are much worse this time. Her father passed away

from

> complications of Crohn's in 2005 after many years of battling the

> disease.

>

> I was diagnosed in 2003 with Lupus. I know I had it for many many

> years prior to diagnosis, but I had one major flare that actually

got

> my doctors attention. So my poor daughter has auto-immune disorders

> on both side of her family...unknown to us when we had her.

>

> She is going to the eye doctor Thursday to be checked for Uveitis

and

> has an appointment set for June 3rd with the orthopedist due to

> issues with her spine.

>

> She is so sad these days and can hardly eat. She is losing weight

> like crazy and doesn't really have much extra to lose.

>

> Has anyone else had any experience with JRA and Crohn's???

>

> Thanks,

> mom to 14 Poly JRA

>