More opinions?

[Guest guest]

Again, I need to hear the opinions of the real experts before I decide how soon

to revisit the rheumatologist for Henry.

I had posted that he was having an awful time once the cold weather hit. I did

call and talk to the doctor's nurse, and we started on 375 mg of Naproxen twice

a day. After a couple of weeks, we really saw some improvement to his physical

issues, which hugely impacted his attitude!

He still struggles with fatigue, but is able to recognize it better now. Just

being able to say " I'm sooo tired, " has helped him start to manage it himself.

He still needs to get to bed around 8:30 to 8:45 and get around 11 hrs to have a

decent day. Frustrating at 11 yrs old. We still have days where he may get 11-12

hours of sleep and still need a 2-3 hr nap.

The deep cold weather we have had the past month has clearly affected him, but

having a mattress warmer now, and warm shower every morning (whether he thinks

he needs it or not!), really has helped overall.

I have a few things that I see that I would like some advice on what to look

for. Its hard to know whether I am worrying because I am mom, or if these things

are related to the JIA.

He has always had issues with writing. I have always assumed this was related to

his giftedness; writing issues are common. Their brains work far faster than

their hands ever can. Henry has been able to type faster than his dad since he

was 5. He is homeschooled, so I have always given him the option of typing his

answers to questions. Handwriting practice has always been part of schoolwork,

but separate from other subjects.

He now says his hands get tired. In the past, he would just fight any writing by

hand. We have really notice the past 6 months just how often he does this

strange stretching movement with his fingers. It is similar to how I

unconsciously warm up my stiff hands in the mornings. It is pretty much all day.

In the summer when we asked him about this, he claimed it was dry skin, and only

when he played video games. It is obious that it is more often and not limited

to playing games. It does increase, though, when he does a lot of writing,

typing, cutting vegetables, etc.

He has also had complaints about his back and neck hurting. For his back and

legs, he uses a large balance ball to do schoolwork, and the movement and change

of posture really help. I am the most concerned about the neck. He will make a

quick movement and wince, sometimes cry out, in pain and grab his neck.

Sometimes it is worse than others. I just don't think that at 11, he should be

affected by sudden movement like that.

How does one go about distinguishing what is a gifted quirk, with writing, and

what is JIA? How do I determine what is going on with his neck, if anything?

In general he is doing so much better, and I am not in a hurry to make any

changes. I do worry that we might not see damage being done, just because we

don't know what we are seeing. I wonder if we should just wait and see how he

does since the weather should be improving.

I appreciate having the advice and experience of you all here. It has really

helped me immensely.

Thanks!

Kim

[Guest guest]

Kim,

Naproxen helps with swelling and pain but does not prevent joint damage. In my

opinion I would be making another appt with the rheumy. I would also make an

appt with an Occupational Therapist--they can help him with the hand issues. It

appears to me that it is time to move towards adding methotrexate to the mix and

possibly something else. You can't undo joint damage so the sooner you get it

under control the better. As for the fatigue that is part of the disease

especially when it is not controlled.

Hope he finds better days ahead really soon!

e, mom to 'joe 24 poly+

From: kimberlykomp@... <kimberlykomp@...>

Subject: More opinions?

Date: Monday, February 21, 2011, 9:46 AM

 

Again, I need to hear the opinions of the real experts before I decide how soon

to revisit the rheumatologist for Henry.

I had posted that he was having an awful time once the cold weather hit. I did

call and talk to the doctor's nurse, and we started on 375 mg of Naproxen twice

a day. After a couple of weeks, we really saw some improvement to his physical

issues, which hugely impacted his attitude!

He still struggles with fatigue, but is able to recognize it better now. Just

being able to say " I'm sooo tired, " has helped him start to manage it himself.

He still needs to get to bed around 8:30 to 8:45 and get around 11 hrs to have a

decent day. Frustrating at 11 yrs old. We still have days where he may get 11-12

hours of sleep and still need a 2-3 hr nap.

The deep cold weather we have had the past month has clearly affected him, but

having a mattress warmer now, and warm shower every morning (whether he thinks

he needs it or not!), really has helped overall.

I have a few things that I see that I would like some advice on what to look

for. Its hard to know whether I am worrying because I am mom, or if these things

are related to the JIA.

He has always had issues with writing. I have always assumed this was related to

his giftedness; writing issues are common. Their brains work far faster than

their hands ever can. Henry has been able to type faster than his dad since he

was 5. He is homeschooled, so I have always given him the option of typing his

answers to questions. Handwriting practice has always been part of schoolwork,

but separate from other subjects.

He now says his hands get tired. In the past, he would just fight any writing by

hand. We have really notice the past 6 months just how often he does this

strange stretching movement with his fingers. It is similar to how I

unconsciously warm up my stiff hands in the mornings. It is pretty much all day.

In the summer when we asked him about this, he claimed it was dry skin, and only

when he played video games. It is obious that it is more often and not limited

to playing games. It does increase, though, when he does a lot of writing,

typing, cutting vegetables, etc.

He has also had complaints about his back and neck hurting. For his back and

legs, he uses a large balance ball to do schoolwork, and the movement and change

of posture really help. I am the most concerned about the neck. He will make a

quick movement and wince, sometimes cry out, in pain and grab his neck.

Sometimes it is worse than others. I just don't think that at 11, he should be

affected by sudden movement like that.

How does one go about distinguishing what is a gifted quirk, with writing, and

what is JIA? How do I determine what is going on with his neck, if anything?

In general he is doing so much better, and I am not in a hurry to make any

changes. I do worry that we might not see damage being done, just because we

don't know what we are seeing. I wonder if we should just wait and see how he

does since the weather should be improving.

I appreciate having the advice and experience of you all here. It has really

helped me immensely.

Thanks!

Kim

[Guest guest]

Kim,

Sorry to hear that you are having to deal with these issues. Most all of what

you have talked about sounds very familiar to me. The hand stretches, the

movements making him hurt, the fatigue and need of so much sleep. My daugther's

handwriting is terrible. When she was little she was very precised and careful.

When she started school she learned to print and was careful to hold the pencil

just right. I am not sure when it happened but at some point she started holding

the pencil different. I can not write the way she holds her pencil. She had so

many different things that caused her aches and pains, she was tired and I never

knew what was going on. I have always taken her to the doctor on a regular

basis and so most of her struggles are documented, but the pediatrician missed

the boat as well. Since she was on medication for her seizure disorder they

figured that was causing. the fatigue and the aches and pains had to be due to

growing pains and/or being an active child that over did. At the age of 11 she

was diagnosed with JRA and we have continued to struggle but at least we know

what we are dealing with. I say all this to tell you to schedule an appointment

and address all those issues with your rheumy. Keep notes and take them with you

to the appointment. If he has active arthritis, then he needs more then

naproxin. Don't just keep wondering what to do, just do it. You have to have a

peace of mind and until you have addressed these issues then you will not have

it. I wish I had been more active and known what I was dealing with so much

sooner. Now, we address those issues on a regular basis. My daughter is on

quite a few meds but is doing pretty good now. She tends to get sick more often

but the pain is gone for the most part I think and she deals pretty well with

the fatigue. Another thing, you said your son is 11 is he having a growth

spurt? Add that too the JRA and you will have major fatigue. I hope things are

better soon and that you get some answers.

Veri & Jaye 17 poly

More opinions?

Again, I need to hear the opinions of the real experts before I decide how soon

to revisit the rheumatologist for Henry.

I had posted that he was having an awful time once the cold weather hit. I did

call and talk to the doctor's nurse, and we started on 375 mg of Naproxen twice

a day. After a couple of weeks, we really saw some improvement to his physical

issues, which hugely impacted his attitude!

He still struggles with fatigue, but is able to recognize it better now. Just

being able to say " I'm sooo tired, " has helped him start to manage it himself.

He still needs to get to bed around 8:30 to 8:45 and get around 11 hrs to have a

decent day. Frustrating at 11 yrs old. We still have days where he may get 11-12

hours of sleep and still need a 2-3 hr nap.

The deep cold weather we have had the past month has clearly affected him, but

having a mattress warmer now, and warm shower every morning (whether he thinks

he needs it or not!), really has helped overall.

I have a few things that I see that I would like some advice on what to look

for. Its hard to know whether I am worrying because I am mom, or if these things

are related to the JIA.

He has always had issues with writing. I have always assumed this was related to

his giftedness; writing issues are common. Their brains work far faster than

their hands ever can. Henry has been able to type faster than his dad since he

was 5. He is homeschooled, so I have always given him the option of typing his

answers to questions. Handwriting practice has always been part of schoolwork,

but separate from other subjects.

He now says his hands get tired. In the past, he would just fight any writing by

hand. We have really notice the past 6 months just how often he does this

strange stretching movement with his fingers. It is similar to how I

unconsciously warm up my stiff hands in the mornings. It is pretty much all day.

In the summer when we asked him about this, he claimed it was dry skin, and only

when he played video games. It is obious that it is more often and not limited

to playing games. It does increase, though, when he does a lot of writing,

typing, cutting vegetables, etc.

He has also had complaints about his back and neck hurting. For his back and

legs, he uses a large balance ball to do schoolwork, and the movement and change

of posture really help. I am the most concerned about the neck. He will make a

quick movement and wince, sometimes cry out, in pain and grab his neck.

Sometimes it is worse than others. I just don't think that at 11, he should be

affected by sudden movement like that.

How does one go about distinguishing what is a gifted quirk, with writing, and

what is JIA? How do I determine what is going on with his neck, if anything?

In general he is doing so much better, and I am not in a hurry to make any

changes. I do worry that we might not see damage being done, just because we

don't know what we are seeing. I wonder if we should just wait and see how he

does since the weather should be improving.

I appreciate having the advice and experience of you all here. It has really

helped me immensely.

Thanks!

Kim

[Guest guest]

Hi... is only 7 but he has had 'fine motor delays' and other developmental

delays since he was a toddler. His handwriting has suffered terribly.

is now in weekly OT, as prescribed by his rheumy, and the progree he has

made is utterly amazing. We now realize that many of his other issues are

directly related to his JIA...but we just didn't realize it since he was dxed

until he was 5.5 years old.

Sent from my iPhone

[Guest guest]

I did it again...sent before I was done...sorry.

Anyway, until was dxed with poly and had been on both Enbrel and

methotrexate for a while...we didn't realize how impacted he truly was. His

toes, both knees, both hips, both shoulders, both elbows and possibly some

fingers are all involved...no wonder he seemed developmentally delayed!

Personally, I would have Henry seen by the rheumy...to this mom it sounds like

he needs to go to the next level of treatment. Of course only the rheumy can

determine that but I would get him seen asap.

My son has some other issues and is also adopted from a Russian baby home

(orphanage) so we attributed many of his struggles to that. But in reality, most

of his issues and struggles can be directly linked to his JIA...something that

never crossed our minds during the 5 years he struggled before his diagnosis

almost two years ago. All that to say, I would rule out the JIA before

attributing any of the quirks you mentioned to being gifted. has some

quirks as well but many of them have disappeared as his treatment has been so

successful.

All the best,

& , 7, poly...SPD...nystagmus....

Sent from my iPhone

[Guest guest]

Many of Henry's issues do sound JA related. When the rheumy checks him, he can

feel for the inflammation. It does sound like his neck and back are having

issues. Those are very definite " hot spots " for spondylitis. Adding a DMARD can

fight the degeneration you cannot see happening. It cannot repair what is

already damage, but drugs like that can slow down or stop anything further from

happening. My son does have many of the same issues with his hands as you are

describing.

Being tired is part of this disease, especially when someone is flaring. The

body is fighting itself and that is very tiring on your system.

Sounds like getting Henry in sooner rather than later would really be a step in

the right direction. Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

kimberlykomp@...

Sent: Monday, February 21, 2011 11:47 AM

Subject: More opinions?

Again, I need to hear the opinions of the real experts before I decide how soon

to revisit the rheumatologist for Henry.

I had posted that he was having an awful time once the cold weather hit. I did

call and talk to the doctor's nurse, and we started on 375 mg of Naproxen twice

a day. After a couple of weeks, we really saw some improvement to his physical

issues, which hugely impacted his attitude!

He still struggles with fatigue, but is able to recognize it better now. Just

being able to say " I'm sooo tired, " has helped him start to manage it himself.

He still needs to get to bed around 8:30 to 8:45 and get around 11 hrs to have a

decent day. Frustrating at 11 yrs old. We still have days where he may get 11-12

hours of sleep and still need a 2-3 hr nap.

The deep cold weather we have had the past month has clearly affected him, but

having a mattress warmer now, and warm shower every morning (whether he thinks

he needs it or not!), really has helped overall.

I have a few things that I see that I would like some advice on what to look

for. Its hard to know whether I am worrying because I am mom, or if these things

are related to the JIA.

He has always had issues with writing. I have always assumed this was related to

his giftedness; writing issues are common. Their brains work far faster than

their hands ever can. Henry has been able to type faster than his dad since he

was 5. He is homeschooled, so I have always given him the option of typing his

answers to questions. Handwriting practice has always been part of schoolwork,

but separate from other subjects.

He now says his hands get tired. In the past, he would just fight any writing by

hand. We have really notice the past 6 months just how often he does this

strange stretching movement with his fingers. It is similar to how I

unconsciously warm up my stiff hands in the mornings. It is pretty much all day.

In the summer when we asked him about this, he claimed it was dry skin, and only

when he played video games. It is obious that it is more often and not limited

to playing games. It does increase, though, when he does a lot of writing,

typing, cutting vegetables, etc.

He has also had complaints about his back and neck hurting. For his back and

legs, he uses a large balance ball to do schoolwork, and the movement and change

of posture really help. I am the most concerned about the neck. He will make a

quick movement and wince, sometimes cry out, in pain and grab his neck.

Sometimes it is worse than others. I just don't think that at 11, he should be

affected by sudden movement like that.

How does one go about distinguishing what is a gifted quirk, with writing, and

what is JIA? How do I determine what is going on with his neck, if anything?

In general he is doing so much better, and I am not in a hurry to make any

changes. I do worry that we might not see damage being done, just because we

don't know what we are seeing. I wonder if we should just wait and see how he

does since the weather should be improving.

I appreciate having the advice and experience of you all here. It has really

helped me immensely.

Thanks!

Kim