Re: [jra]

[Guest guest]

Hi all,

Zhondrese is in the hospital due to seizure activity and trying to get meds

under control too. She has seizures while she's sleeping and the doctors

don't what's causing this too happen. Hope everyone has a Blessed

Thanksgiving.

Ywellen

[Guest guest]

Ywellen,

I hope Zhondrese will get better soon. I'm sure its hard just not knowing

what's causing the problem, but hopefully you'll get some answers soon,

leading to a speedy recovery You all will be in our thoughts and prayers.

[Guest guest]

Ywellen,

We will be praying for Zhondrese tonight. Our heart goes out to you.

[ & Skyler]

Re:

Hi all,

Zhondrese is in the hospital due to seizure activity and trying to get meds

under control too. She has seizures while she's sleeping and the doctors

don't what's causing this too happen. Hope everyone has a Blessed

Thanksgiving.

Ywellen

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[Guest guest]

Ywellen,

Sorry to hear about Zhondrese being in the hospital. I hope they are

able to get the seizures under control soon. Will keep you in our prayers.

Keep us posted.

Teri

[Guest guest]

Ywellen,

Hope they figure out why she's seizing. I know how scared you must be.

I'll keep you in my thoughts.

kat

[Guest guest]

Ywellen

I hope that she is OK Good Luck. SHU

[Guest guest]

Hi Ywellen,

Good to hear that things are beginning to settle down some, again. I

hope Zhondrese is feeling okay. Must have been a scary experience for

the family. I hope she'll continue to do well, even without the seizure

meds.

Aloha,

Georgina

sweetpea200001@... wrote:

>

> Hi all we are hoe from the hospital and Drese is doing fine.Her seizures are

> now under control. It's weird how she has seizure, because she have them

> while she's sleep and doesn't even make a noise nor movement. They took her

> off some of her seizure meds to see how she does. Thanks all for your concern

> and prayers.

> Ywellen/ Zhondrese

[Guest guest]

Hi all we are hoe from the hospital and Drese is doing fine.Her seizures are

now under control. It's weird how she has seizure, because she have them

while she's sleep and doesn't even make a noise nor movement. They took her

off some of her seizure meds to see how she does. Thanks all for your concern

and prayers.

Ywellen/ Zhondrese

[Guest guest]

Thanks for the update Ywellen. Glad to hear that Zhondrese is doing better.

Teri

[Guest guest]

Bonny

the adult rhuemys i have talked with tell me they dont see kids

and we only have 2 ped rhuemys here in ga

and i have been to both of them with melissa

i have talked with the ga chapter about this

and they are trying to get more drs into going

into ped rhuemys

theres some states who dont have ANY ped rhuemys

this is something we as parents need to stress to our

state or medical association

now my sisters doctor told me he would start seeing melissa

for all her ailments hes a old doctor and very good

the older doctors have been through it and know alot more than

the younger ones

Robbin

[Guest guest]

Dear Sharon, thanks for your reply about Meghan and her height. has

been on steroids since age 6. it has usually 12 mg or above until a year

ago...when they did a bone scan a few months ago they said his physical age

was 6 yrs old although his chronological age is 10 yr, its almost like

development stopped at age 6. The development of his teeth, according to our

Dentist, are also delayed...he still has many baby teeth compared to an

average 10 yr old..he also has some white spots on his front teeth that the

Dentist feels was due to high fevers he had with the systemic JRA. I wonder

if height is most affected in children with JRA compared to poly Jra.?? or if

all correalates with time spent on steroids ?? Jane

[Guest guest]

Hi,

Most of the JIA kids suffer stunted growth which can also cause problems

with their teeth. My son Damien (systemic since 9 months old) is 6 now and

very small for his age. Stopping prednisolone for a year or so had little

effect on this so I would suggest that the steriods are not necessarily to

blame for 's short stature - blame the JIA. Damien's adult teeth are

coming through now and I'm dreading any necessary dental work. Meghann would

appear to be an exception - I'm sure many of us would give anything for our

children to grow normally.

Regards,

Oliver

Re:

Dear Sharon, thanks for your reply about Meghan and her height. has

been on steroids since age 6. it has usually 12 mg or above until a year

ago...when they did a bone scan a few months ago they said his physical age

was 6 yrs old although his chronological age is 10 yr, its almost like

development stopped at age 6. The development of his teeth, according to our

Dentist, are also delayed...he still has many baby teeth compared to an

average 10 yr old..he also has some white spots on his front teeth that the

Dentist feels was due to high fevers he had with the systemic JRA. I wonder

if height is most affected in children with JRA compared to poly Jra.?? or

if

all correalates with time spent on steroids ?? Jane

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[Guest guest]

Hi Jane,

I'm not 100% sure about this, but I think your observation is right on target.

Seems to me like it's usually children with systemic JRA who have

delayed/stunted growth issues. Then again, they seem to be the only ones treated

for extended periods of time with steroids.

Take care,

Georgina

Re:

Dear Sharon, thanks for your reply about Meghan and her height. has

been on steroids since age 6. it has usually 12 mg or above until a year

ago...when they did a bone scan a few months ago they said his physical age

was 6 yrs old although his chronological age is 10 yr, its almost like

development stopped at age 6. The development of his teeth, according to our

Dentist, are also delayed...he still has many baby teeth compared to an

average 10 yr old..he also has some white spots on his front teeth that the

Dentist feels was due to high fevers he had with the systemic JRA. I wonder

if height is most affected in children with JRA compared to poly Jra.?? or if

all correalates with time spent on steroids ?? Jane

[Guest guest]

Hi Oliver,

Yes, I've heard the same thing. That even when off the steroids completely for a

period, growth is still slow to occur in many children. Not sure if you saw it

or not but I recently posted an article explaining that a combination therapy of

indomethacin and hydroxychloroquine (Plaquinel), in a rodent model, produced

stunted growth patterns. My son takes both of those meds. Not sure if that has

contributed but it may have. As well as the steroids. So the inherent

inflammatory process of JRA itself may be responsible or it may be due to side

effects on a child's developing body of some of the many drugs used to treat it.

Normal growth used to be something that we just took for granted and never

hardly thought about ... until the phrase short-stature came up when we had our

first meeting with an endocrinologist. Now it's become a part of our vocabulary.

Oh, that just reminded me. Was watching Politically Incorrect with Bill Mahr on

TV last night and one of the guests was a former Dept. of Labor Exec. Wish I

could remember his name. He is of very short stature. Joked that all of his

children are taller than him already. He's written a book called, Short People.

I'm going to look for it.

Oliver, don't worry yourself too much (yet) with the prospect of Damien needing

to have lots of corrective dental work. It may all work out. hasn't had

any trouble with his permanent teeth coming in awkwardly. That was something I

was very concerned about when he started losing his primary teeth. If he was

having slowed growth, where and how would all those larger teeth fit in? He also

has not had any staining/white spots. He has very beautiful, and apparently

quite strong, teeth. Lucky, I guess. Just earlier this week I attended a dental

health alliance meeting. We (and many others) have had some difficulty securing

a dentist willing to accept his medicaid dental coverage. The conclusion reached

is that, at least for the time being, we and others in the same predicament

(children eligible for Medicaid) will have to fly off of our island, across the

ocean, and over to the big city ~Honolulu~ in order to be examined or treated by

a dentist. If had more pressing dental health needs, associated with his

JRA or not, that would be a major complication for us. Hopefully we'll be able

to make some needed changes in the dental health delivery system that's

currently in place here, so that access to services will be easier to come by

for those children who need it.

Take care,

Georgina

Hi,

Most of the JIA kids suffer stunted growth which can also cause problems

with their teeth. My son Damien (systemic since 9 months old) is 6 now and

very small for his age. Stopping prednisolone for a year or so had little

effect on this so I would suggest that the steriods are not necessarily to

blame for 's short stature - blame the JIA. Damien's adult teeth are

coming through now and I'm dreading any necessary dental work. Meghann would

appear to be an exception - I'm sure many of us would give anything for our

children to grow normally.

Regards,

Oliver

[Guest guest]

Georgina,

Thanks for the details. Damien only took hydroyychloroquine for a very short

while and it had no apparent effect on the JIA so it was discontinued a long

time ago. I'm glad that Josh's teeth are fine although the thought of a

flight just to go to the Dentists seems rather inconvenient to put it

mildly. Damien has been to our normal dentist once and when he saw the

instruments he freaked out completely! I believe that the hospital will be

dealing with his teeth from now on.

We recently had a winter holiday in the Canary Islands (just off the coast

of Morocco) and Damien was in fine form. I was amazed to see him on the

beach running around in the surf all day long, building castles and making

friends. Tired me out just watching him! Just goes to show that the disease

can be controlled and we can all lead a more normal life.

Hope all are well,

Oliver

Re:

Hi Oliver,

Yes, I've heard the same thing. That even when off the steroids completely

for a period, growth is still slow to occur in many children. Not sure if

you saw it or not but I recently posted an article explaining that a

combination therapy of indomethacin and hydroxychloroquine (Plaquinel), in a

rodent model, produced stunted growth patterns. My son takes both of those

meds. Not sure if that has contributed but it may have. As well as the

steroids. So the inherent inflammatory process of JRA itself may be

responsible or it may be due to side effects on a child's developing body of

some of the many drugs used to treat it. Normal growth used to be something

that we just took for granted and never hardly thought about ... until the

phrase short-stature came up when we had our first meeting with an

endocrinologist. Now it's become a part of our vocabulary. Oh, that just

reminded me. Was watching Politically Incorrect with Bill Mahr on TV last

night and one of the guests was a former Dept. of Labor Exec. Wish I could

remember his name. He is of very short stature. Joked that all of his

children are taller than him already. He's written a book called, Short

People. I'm going to look for it.

Oliver, don't worry yourself too much (yet) with the prospect of Damien

needing to have lots of corrective dental work. It may all work out.

hasn't had any trouble with his permanent teeth coming in awkwardly. That

was something I was very concerned about when he started losing his primary

teeth. If he was having slowed growth, where and how would all those larger

teeth fit in? He also has not had any staining/white spots. He has very

beautiful, and apparently quite strong, teeth. Lucky, I guess. Just earlier

this week I attended a dental health alliance meeting. We (and many others)

have had some difficulty securing a dentist willing to accept his medicaid

dental coverage. The conclusion reached is that, at least for the time

being, we and others in the same predicament (children eligible for

Medicaid) will have to fly off of our island, across the ocean, and over to

the big city ~Honolulu~ in order to be examined or treated by a dentist. If

had more pressing dental health needs, associated with his JRA or

not, that would be a major complication for us. Hopefully we'll be able to

make some needed changes in the dental health delivery system that's

currently in place here, so that access to services will be easier to come

by for those children who need it.

Take care,

Georgina

Hi,

Most of the JIA kids suffer stunted growth which can also cause problems

with their teeth. My son Damien (systemic since 9 months old) is 6 now and

very small for his age. Stopping prednisolone for a year or so had little

effect on this so I would suggest that the steriods are not necessarily to

blame for 's short stature - blame the JIA. Damien's adult teeth are

coming through now and I'm dreading any necessary dental work. Meghann

would

appear to be an exception - I'm sure many of us would give anything for

our

children to grow normally.

Regards,

Oliver

[Guest guest]

On the steriod issue, I read an article, was it here? It said it took

~ 2 years to get growth back after stopping Prednisone. It

also said that girls usually get 100% back, boys only 80%.

Kind of odd, I will try to find the article. Jana

[Guest guest]

Hello Georgina,

In reading your response to Oliver you had mentioned that your son did not

have any " staining/white spots on his teeth " . Does that have anything to do

with JRA? I ask that because 's two front teeth are that way and the

Dentist just said " sometimes that happens to kids " . At that time

was not diagnosed with JRA in fact showed no signs (about a year ago). Just

curious...

Dee Dee

[Guest guest]

Hi Jana,

I don't recall reading that. If you do find the article, please do post it for

us. You know I'm always interested in reading about the effects of and issues

regarding children needing long-term prednisone therapy. I'm sure many of us

are. Very interesting. Personally, I don't think I am in contact with anyone

whose child has the systemic form of JRA and who needed to take prednisone for

an extended period of time and who has managed to be off/stay off steroids for a

period of two years. Anybody like that here?

Thanks,

Georgina

On the steriod issue, I read an article, was it here? It said it took

~ 2 years to get growth back after stopping Prednisone. It

also said that girls usually get 100% back, boys only 80%.

Kind of odd, I will try to find the article. Jana

[Guest guest]

Hi Dee Dee,

I've heard some other parents talk about this kind of tooth staining, in their

children with JRA. I think it's commonly a result of meds or fevers. Or, like

others have said, maybe it's totally unrelated and some are just more

susceptible to it? Not sure. Sorry : (

Aloha,

Georgina

Hello Georgina,

In reading your response to Oliver you had mentioned that your son did not

have any " staining/white spots on his teeth " . Does that have anything to do

with JRA? I ask that because 's two front teeth are that way and the

Dentist just said " sometimes that happens to kids " . At that time

was not diagnosed with JRA in fact showed no signs (about a year ago). Just

curious...

Dee Dee

[Guest guest]

I think it is a great idea! Jana

[Guest guest]

To all those who say they have side affects from methotrexate what doses are

you on? I'm currently having 15mg injections every Friday and dont seem to

notice any particular side affects.

Vicky

[Guest guest]

Vicki,

My daughter is on 25 mg sub-cutaneous once a week. Since switching from the

oral dose, the only side effects she notices are a bad aftertaste (go figure)

and still occasional stomach pain. However the pain is nothing like she had

with the oral doses. FYI she is also on 200 mg celebrex, folic acid, and

prednisone. The prednisone is dropping and currently is 12.5/7.5 every other

day.

Christy

[Guest guest]

Thanks for replying Christy

[Guest guest]

Hi Amy,

We have used the parrafin treatments on Holly's hand and she loves them,

i had a homemade one at home, is was kind of a pain, but now you can buy them

anywhere. TTYL AJ

[Guest guest]

Hi

It is unlikely, though not impossible, that the fever was a reaction to the

methotrexate. I would think it more likely was caused by a virus. At the

same time, I'd certainly call the doctor and let him have some input.

My daughter, now 9, has been on methotrexate for more than 6 years now. The

most frequent problem we had was nausea and vomiting, now a non-issue as we

switched to injections over a year ago. We have also had trouble with

elevated liver enzymes a few times. Once it was bad enough that we had to

pull her off methotrexate for a few weeks--- awful for her, as it meant

going on steroids again in order to walk. The other times we have just

lowered the methotrexate dose and things have returned to normal. Regular

lab work is required for kids on methotrexate, as that is how you monitor

for some of the side effects. When 's enzymes begin to climb we go to

more frequent labs. You nephew's rheumatologist will advise his parents on

the frequency blood work is to be done.

Your nephew is lucky to have such a caring aunt!

Liz

> hi, my name is , I am the aunt of a 9yr old boy with JRA. I have

> emailed the forum before.....

> I am writing today to get information from family members of children with

> JRA who have been on Methotrexate.....My nephew was just put on this

> medication this week. He had his first dose yesterday morning. Last night

my

> sister had to take him to the hospital because his fever spiked to 104+,

he

> said his chest hurt and couldn't breath right, and his whole body ached to

> the point where he wouldn't let anyone touch him because he hurt so much,

he

> complained about his back the most which hasn't happened before.

> Does anyone have any information about the side affects of this medication

> or has anyone experienced this before. Are there any major concerns we

> should have? Anything will be helpful......Thank you for all your help

>

> A very concerned aunt,

>

>

>

> L. s

> SQA Project Coordinator

> jstevens@... <mailto:jstevens@...>

>

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