Re: Helen from

[Guest guest]

Helen:

Ok, I had just remembered that I only heard about one of your son's

having the echo. I'm glad that they are keeping a close eye on Nick. Did

you know aortic dilatation is a symptom of ankylosing spondylitis? Did

they mention that, or I'm guessing that they really feel it is more

congenital, since you are having the other kids tested (duh on my part!)

Rob is on an ace inhibitor to keep his blood pressure lower because of

the kidney disease....so maybe if he has aortic dilatation we can cover 2

birds with one stone??

Does Nick have any symptoms of the aortic problem??

I also remember when Rob was 50 inches and 50 lbs, but I think that was

when he was about 11 or 12. I hadn't realized that Nick had severe asthma

too, they sound so much alike!

I'm so sorry that you have such a long wait until October. I know it must

be terribly hard to have that hanging over your head. Our special kids

seem to jump from one issue to the next...honestly, I was having panic

attacks last year and ended up going on Zoloft which has helped

immensely. I'm finally able to take things (more or less) one day at a

time.

Relying on God so much these days! As it should be...

Helen, you have a lot on your plate and are such a busy woman. I'm glad

that you are getting to go to the conference, and hope that you all have

a wonderful, safe trip. Sorry I don't post as much any more, sometimes I

feel I have little to add and life just gets so complicated most days!

Take care,

and Rob 17 Spondy

PS Rob stopped growth hormone in January, and last week he measured 5'9

1/2 " and 147 lbs! He looks great.

I think that the growth hormone jump started his natural production and

he is still growing, off the shots.

On Fri, 07 Jul 2006 21:22:38 -0000 " hburger64 " <hburger64@...>

writes:

-,

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

>

>