Hadley

[Guest guest]

Hadley,

was diagnosed just a year and a half ago just before she turned 12. She has only had the one bad flare and after eight months things were finally getting better and then by a year after her diagnosis she has done well with no real problems. She has occasional stiffness and occassional minor swelling but she will not complain. I notice her limping sometimes but she tells me there is no pain. She was on celebrex & plaquinil but now is not on anything. We have been one of the very lucky ones on this site. I pray daily for her to be pain free and for this to go away. I know God has blessed us this far and if this returns we will again depend on God and our good friends on this site to get us through.

Veri

Re: Update on Jaye

WOW! I know it's "cautious elation" for you right now but your story

gives us so much hope for a better future for ou Isabelle. I am

newer to the group so forgive me for asking, but when was your

daughter's onset? What treatments and for how long, if you don't

mind. thanks, Hadley

>

> Just a note to let you all know that we are "cured". Well that is

not quite what the rheumy said but as far as Jaye is concerned

that is what she heard. The rheumy said for us to just check in with

the ped. if she begins having more problems that there is no more

need to see her. She said there is a very good chance that

Jaye will never have problems with her JRA again. We are going to go

with that.

> Although I have read enough of the posts here to know that it

certainly can come back and I will be on the watch for that to happen

if or when it does. The rheumy did give a bit better check

then the last time we saw her, this time we were with her for about 8

minutes. Last time we got 5 of her precious minutes for the

appointment. But that is ok, we have an awesome pediatrician and he

will do what we need for now and if this arises again I will be

looking for a new rheumy for certain. She pretty much dismissed us

yesterday when she told us she did not expect to see us again and to

just let the ped take care of future problems.

>

> Veri & Jaye 13 poly but doing so very well

>

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[Guest guest]

Hi Hadley:

Glad I could help. Please let me know what you find out as my son has very

similar episodes to Isabelle. I'm sorry to hear your son may have asthma. If I

can be of any help there either, please let me know. Hannah was born with

asthma so I've been dealing with that for many years too. What kids meds do

they have him on? Are you taking him to a specialist or this all through your

ped? It is very scary watching your child struggle to breathe. Hannah has

turned blue on us twice and I hope to God it never happens again! Not a pretty

look on a child.

Sending prayers & happy thoughts,

Beth :-)

Beth, question about GERD...

>

> Something weird is going on with Isabelle and I was wondering if

you

> could give me a little insight. Isabelle has been throwing up the

last

> couple weeks at odd times and especially during meals, or upon

waking

> in the morning. She had GERD as a baby until about 5 months old and

it

> was EXTREME. I stayed home most of the time because she would

> projectile vomit several feet and I had to bring changes of

clothing

> for both of us. It was several times a day and I did all the things

> they tell you to do (hold her upright after eating, cut out dairy

in my

> diet while breastfeeding, she slept on an incline pillow thing...).

I

> am wondering now if GERD can go away and then return later?

>

> Did Hannah always have GERD or did it show up after her arthritis?

Are

> you giving her a prescription for that as well as other meds? She

also

> suddenly has dark circles that won't seem to go away no matter how

much

> sleep she gets. Very strange. I will set up an appt. with her Ped

but

> wanted to get your 2 cents too.

>

> thanks, Hadley

>

>

>

>

>

[Guest guest]

Beth,

I will definitely keep you posted on the GI appt. This doctor is

very well known which is great in one respect, because he is a

true " expert " but the wait to get an appt. is a huge downside. This

was the same for Isabelle's first Rheumy too. I am considering

trying to get her into a less popular but good GI doc...

As for , he has had lung issues since babyhood too but no one

thought asthma yet. He had Pneumonia at 5 months completely

unexpectedly. Had a cold, then a cough and suddenly the cough

sounded " crackly " and I took him to the ER. X-rays comfirmed

Pneumonia. Luckily I knew that weird sound from when my older

daughter, Katharine, had it in the 1st grade. Also has allergies but

nothing as severe as what is showing now.

They have him on Singulair, Veramyst, Zyrtec daily, and Albuterol

liqid if he has any signs that he needs it. I am also doing saline

nasal cleansing a couple times per day which he absolutely hates

(only 17 mos. old). Have a follow-up in a couple weeks to see how

all these are working...hopefully well. He is coughing at night less

and sleeping more, thank the Lord .

Sounds like you have dealt with SO MUCH. I have four kids, 15

(n), 13 (Katharine), and of course Isabelle, and . I

feel like there is " always something " we are working on health wise.

A lot of allergies and then the JRA. Am still hopeful that

doesn't progress to asthma but we will see...

thanks again! -Hadley

> >

> > Hi Hadley:

> > I will answer this for you in 2 parts. First Hannah developed

GERD

> about 2 years ago. She was having extreme asthma that we just could

> not get under control. She was on high doses of pred for more than

> 30 days along with several antibiotics and breathing treatments

every

> day. I suspected she had this before that, but that really seemed

to

> set it off. That is also the time her joint pain intensified (after

> coming off pred). We tried every OTC med that was approved for kids

> and nothing worked. We then switched her to Nexium which did

wonders

> for her. Due to cost we recently switched her to a brand new med

out

> on the market called Zegerid, which is generic prilosec and

basically

> baking soda. That was just over a month ago and so far so good. She

> does have to avoid certain foods even on the med, but she knows

what

> to eat and what to avoid. I would keep a food journal when this

> happens and see if you can find a food trigger.

> >

> > Secondly, my son (age 13) also had reflux as a baby. Exactly as

> you described. His too settled down for a while (we used to joke

> that he could vomit on command since it was so often). It reared

its

> ugly head a few years ago and I put him on Zantac. We never found a

> food trigger for him, its just him. He has been greatly improved

> ever since. So yes, I think it can settle down (not go away) and

> then become more severe again.

> >

> > I would ask your ped. Not sure what is ok for someone as young as

> Isabelle. You may have to get a prescription for something liquid.

> >

> > I hope I helped and did not confuse you more.

> >

> > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

> >

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

> >

> >

> > Beth, question about GERD...

> >

> > Something weird is going on with Isabelle and I was wondering if

> you

> > could give me a little insight. Isabelle has been throwing up the

> last

> > couple weeks at odd times and especially during meals, or upon

> waking

> > in the morning. She had GERD as a baby until about 5 months old

and

> it

> > was EXTREME. I stayed home most of the time because she would

> > projectile vomit several feet and I had to bring changes of

> clothing

> > for both of us. It was several times a day and I did all the

things

> > they tell you to do (hold her upright after eating, cut out dairy

> in my

> > diet while breastfeeding, she slept on an incline pillow

thing...).

> I

> > am wondering now if GERD can go away and then return later?

> >

> > Did Hannah always have GERD or did it show up after her

arthritis?

> Are

> > you giving her a prescription for that as well as other meds? She

> also

> > suddenly has dark circles that won't seem to go away no matter

how

> much

> > sleep she gets. Very strange. I will set up an appt. with her Ped

> but

> > wanted to get your 2 cents too.

> >

> > thanks, Hadley

> >

> >

> >

> >

> >