Re: Nick's Appt.

July 7, 2006

Helen:

Height, well, that as you know was an issue with Rob. Although not

diagnosed with JRA until age 12, he had chronic asthma since the age of

1. On steroid inhalers all that time, and prednisone bursts that were

quickly tapered with severe asthma attacks. During those years, steroid

inhalers were not felt to have systemic effects, yet, now they know that

they do. Rob not only had growth delay but also osteopenia.

At any rate, I think that you can just encourage intake with Nick and

also hope and pray that his disease stays so controlled that the

prednisone can be tapered off. I'll keep that in my prayers!

It might also be time to check in with the endocrinologist.

Rob weathered 2 weeks without Enbrel (and as you know can never take

NSAIDS) pretty well. I think it was the iv solumedrol the oral surgeon

gave him and the prednisone burst the day before the wisdom tooth

extraction.

He's still feeling short of breath at rest despite starting back on

inhalers. Next stop is the cardiologist. Some kids with ankylosing

spondylitis have aortic involvement and other cardiac abnormalities so

the pediatrician wants him to be seen.

Helen, I don't remember if you had your other kids screened yet by

cardiology and what the results were? Forgive me for not remembering, can

you remind me of what happened, and also how often Nick will be

rechecked??

thanks

and Rob 17 Spondy

On Fri, 07 Jul 2006 20:12:01 -0000 " hburger64 " <hburger64@...>

writes:

Nick saw the rheumy today and was, for the most part a good visit.

Nicks joints look good, his hands are staying swelling free and hes

had an awesome month, not once complaining of any pains. hes also

not having to flex his hands and stretch them out all the time )))

The not so good part of the visit is the fact that Nick has not

grown or gained weight in 6 months. This has the rheumy concerned.

We will talk more about this at next months appt. I cannot believe

its the prednisone, hes on a low dose, but the doctor says there are

some studies that are saying even at low doses growth can be

affected. If its disease related now that all his joints are stable,

we should start to see some growth. he wants to see growth by next

appt.

So, in the mean time, does anyone have any ideas on how to pack on

height and weight on my little noodle!

hugs Helen and (8,systemic)

P.s Nick did so awesome with his remicade, it was a new nurse and

she was very impressed with how well he held still, took is pills

and was polite and nice to her.

" But as for me and my house, we will serve the Lord. "

24:15

July 7, 2006

-,

Nick also had chronic asthma, dx at 12 month. He was really sick up

to age 2 and then it got slowly better. He was often on prednisone

and also steriods in the nebulizer. Thankfully he outgrew the

asthma, but it makes you wonder about all those steriods at an early

age.

So far I have only had one son in to the cardiologist. My 14 yr old.

His echo came back perfectly normal. In fact Nicks aortic root is

the same size as s and is rapidly approaching 6ft and

120lbs ( my kids are skinny, unlike their mother!) So you can see

just how out of proportion Nicks is ( nick is 50 ins and 49lbs) both

of them are measuring at 26cm right now. Any change >5cm is

considered major.

It is on my to do list to get the other 2 in before schools back in

Sept. I dont have to do my daughter as shes adopted. Nick is due to

have his next echo in Oct, the cardiologist wants echos 1 year apart

to comapre them. We are hoping and praying for no change in Nicks,

but its possible that it could dilate more. If it is dilating, a lot

depends on how quickly it does. If it is dilating, Nick is looking

at blood pressure medications ( keeps excess pressure off the

weakened root)and anti-biotics for dental cleanings and work and if,

God forbid, it gets to around 50cm then they start talking about

surgery because the risk of an aortic rupture greatly increases.

Its scary and im dreading the oct appt already. I know ill be a bag

of nerves.

Im glad to read that Rob did ok off the enbrel, is he back on it

yet??

hugs Helen and (8,systemic)

-- In , snooksmama@... wrote:

>

> Helen:

> Height, well, that as you know was an issue with Rob. Although not

> diagnosed with JRA until age 12, he had chronic asthma since the

age of

> 1. On steroid inhalers all that time, and prednisone bursts that

were

> quickly tapered with severe asthma attacks. During those years,

steroid

> inhalers were not felt to have systemic effects, yet, now they

know that

> they do. Rob not only had growth delay but also osteopenia.

> At any rate, I think that you can just encourage intake with Nick

and

> also hope and pray that his disease stays so controlled that the

> prednisone can be tapered off. I'll keep that in my prayers!

> It might also be time to check in with the endocrinologist.

> Rob weathered 2 weeks without Enbrel (and as you know can never

take

> NSAIDS) pretty well. I think it was the iv solumedrol the oral

surgeon

> gave him and the prednisone burst the day before the wisdom tooth

> extraction.

> He's still feeling short of breath at rest despite starting back on

> inhalers. Next stop is the cardiologist. Some kids with ankylosing

> spondylitis have aortic involvement and other cardiac

abnormalities so

> the pediatrician wants him to be seen.

> Helen, I don't remember if you had your other kids screened yet by

> cardiology and what the results were? Forgive me for not

remembering, can

> you remind me of what happened, and also how often Nick will be

> rechecked??

> thanks

> and Rob 17 Spondy

>

> On Fri, 07 Jul 2006 20:12:01 -0000 " hburger64 " <hburger64@...>

> writes:

> Nick saw the rheumy today and was, for the most part a good visit.

> Nicks joints look good, his hands are staying swelling free and

hes

> had an awesome month, not once complaining of any pains. hes also

> not having to flex his hands and stretch them out all the

time )))

>

> The not so good part of the visit is the fact that Nick has not

> grown or gained weight in 6 months. This has the rheumy concerned.

> We will talk more about this at next months appt. I cannot believe

> its the prednisone, hes on a low dose, but the doctor says there

are

> some studies that are saying even at low doses growth can be

> affected. If its disease related now that all his joints are

stable,

> we should start to see some growth. he wants to see growth by next

> appt.

>

> So, in the mean time, does anyone have any ideas on how to pack on

> height and weight on my little noodle!

>

> hugs Helen and (8,systemic)

>

> P.s Nick did so awesome with his remicade, it was a new nurse and

> she was very impressed with how well he held still, took is pills

> and was polite and nice to her.

>

> " But as for me and my house, we will serve the Lord. "

> 24:15

>

July 7, 2006

Helen:

So glad to hear you had good news today!

I don't have any experience (THANK GOD) with the heart issues, but like

I can speak on the pred issue. My Hannah, age 9, has had moderate to severe

asthma since she was 8 weeks old. She has been on more pred than I can count,

sometimes at higher doses than they put me on! The ped has warned me from day

one that steroids at any dose can stunt growth. When he wanted her to start

Advair 4 years ago, he again warned me that this med is known to stunt growth.

I told him I would rather have a breathing, short daughter, than a tall dead

one! LOL

Hannah will be 10 in just 3 months (I can't believe it) and she is only 49

1/2 " tall and weighs only 58 pounds. Her height continues to creep up by only

about 1/2 - 3/4 " per year and her weight has virtually been the same for almost

3 years. She wears a size 7 girls clothes and only has a size 13 shoe. In

comparison, my son (who is 23 months older than her) grew about 5 1/2 inches

last year and wears a men's size 6 shoe.

The ped told me that eventually almost all the kids do catch up to where they

should be, but it takes much longer for some. Did they give you any

suggestions? Maybe check and see if you can have him see a dietitian. They are

talking about having Hannah see one, if they don't like her weight at her next

physical appt (which is in about 6 weeks). Let me know how Nick progresses and

what suggestions you get.

Beth (Hannah 9, hopefully getting a diagnosis soon)

hburger64 <hburger64@...> wrote: