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Steroids

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Hi everyone,

Boy is this list quite. I am happy to say that the flu has flown by our

house. It took about 8-10 days to get outta here but it's pretty much gone.

Spencer is feeling much better but mom here is still dragging her feet quite

a bit.

I remember that I was going to post some side effects of chronic steroid

use. I can't find the email that Spencer's doctor wrote that contained a

lot of information on steroids, but these are the big things that I

remember.

1. Stunt in growth

2. Cataracts

3. Hip and joint problems (Mainly hip)

4. Thin and brittle bones

5. Hypoglycemia

6. Pituitary glad shutting almost completely down

7. In the event of any type of trauma (Even high fever 103 or so and above,

surgery, accident, broken bones etc) Double or triple the amount of steroids

are needed to be given in order for the body to function without serious

harm. This presents a problem if the child is in an accident and one of the

parents are not around or the parents are also involved. I would recommend

either a medical band or paper in the car and house letting whom ever know

how much and for how long the person has been on steroids.

8. Steroid weight, (Spencer never seems to gain weight from this)bloated

stomach and cheeks

9. Increase in appetite

10. Terrible problem in healing from surgeries and broken bones

Spencer has experienced all except cataracts, increase in appetite but we

still need to get his eyes checked.

When on steroids chronically (our) doctor recommends a yearly check up with

an eye doctor and orthopedic doc for evaluation of the bones.

I am sure there are a lot more that I missed, but these are some of the

bigger more often seen side effects of steroids.

Anyone add some that I haven't listed......

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One other thought is bugging me to share with you. Of course, steroids

will eliminate the symptoms but can't be used in high doses long term. If

Dan's symptoms can be controlled on intermittent steroids (several times a

year), then this may be an alternative for him. If he can be rendered

asymptomatic on very small doses (<10mg a day) this also might be an

alternative.

However, if it turns out that he can't make it without the steroids, it

looks like his only option would be where we are. I dont think he's tried

an elemental diet (as opposed to an elimination diet) yet has he? How does

he feel about being tube fed? Are his symptoms severe enough (in his mind)

to justify this?

He might find (as we have after the fact) that it is a relief to be able to

not be hungry and not have to hurt -- It would also be interesting to hear

his comments on the list from him. i would appreciate the opportunity to

speak to him about his symptoms with IEE -- I dont think I've ever spoken to

anyone else with my disease (or the similar strictures it sounds like we

have) that was above the age of 10.

Steph.

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Judy,

My feet just grew after I had Spencer!!! Weird eh?

Re: [eosinophilic gastroenteritis] Steroids

Interesting... I wonder if it will turn out that this treatment is more

effective only for the younger patients with IEE?

Fortunately, prednisone therapy works. I am VERY impressed that Dan is so

BIG. Obviously, his disease did not keep him from GROWING!!! LOL My oldest

would give his eye teeth to be that tall and big! My husband is over 6' and

over 200 lb and I think would have liked to have been closer to that

size; we have often wondered if his small stature is the result of his IEE.

Good luck. He'll feel better on the prednisone.

Steph.

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