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Hi ,

We are sure that 's problem IS reflux. We just don't seem to be able

to get a handle on it.

has always had lung problems of some sort. He was hospitalized

frequently as an infant for bronchiolitis and/or aspiration pnuemonitis.

He's had a ton of problems with adalektisus (sp??) He has always had a

problem with retracting to some degree. His respirations usually sit

somewhere in the 50-60 bpm range.

He had a severe case of RSV when he was 11.5 months of age. It resulted in a

5.5 week hospital stay, 4.5 in the PICU, and 3.5 weeks on a vent. He has

been diagnosed with asthma, RAD, and has severe scarring of the lungs due to

all his problems early in life.

We have been controlling his breathing problems this winter with a regimen

of Pulmicort 2xdaily, Singulair daily, and Zopenex added as needed. It

worked well for most of the season, but about 3 months ago, he started with

this cough, and we just haven't been able to get rid of it.

We are currently attempting to control his reflux with a combination of

Prevacid and Zantac. We're going to ask Dr H for other ideas when we see her

at the convention. She has already recommended having his fundo redone, or

running a GJ, but that isn't possible right now.

I just thought I would see if anyone else had any other suggestions, or

ideas for different meds, that we haven't yet tried. It's really frustrating

when everything you try doesn't work!

Can't wait to meet you in person!!

Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

PS - Funny aside here. I was supposed to be named Lynn, but when I

was born weighing 8# 4oz, my mom changed my first name to . In her

mind's eye, a was a very small, petite, fragile-looking little

girl, and I was anything but! LOL Did she get it right????

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  • 3 months later...

Hi ,

I work in NYC and live a little bit north of it. If you email me

privately, I will send you my home and office telephone numbers. If

you need anything while you are here, please feel free to call me.

Judith, Steve, (RSS) and (non rSS) 4 1/2 year old twins

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  • 3 years later...
Guest guest

I dont think I have a joint left that isnt in pain on a daily basis.

they have me on several different pain meds and nothing makes the pain

go away altogether

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Hi Matt. My joints kill me too. What kind of pain meds are/were you on, if you don't mind me asking.

Debbie T.

Co-Moderator

Subject: To To: Neurosarcoidosis Date: Saturday, July 12, 2008, 2:16 PM

I dont think I have a joint left that isnt in pain on a daily basis.they have me on several different pain meds and nothing makes the paingo away altogether

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May I ask what Dr is prescribing the medication orthopedic or rheumatologist and what medications are they using.

What medications has anyone found effected for the joints especially the ankles?

How about aqua therapy?

Thanks

out of Lurking

What about any of the over the counter lubricants?

I dont think I have a joint left that isnt in pain on a daily basis.they have me on several different pain meds and nothing makes the paingo away altogetherGet the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!

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what is this horrible ankle and feet pain, i take

lyrica, pain pills, stick my feet in cold water, i

need help to. is this sarc

--- FluckigerS@... wrote:

> May I ask what Dr is prescribing the medication

> orthopedic or rheumatologist

> and what medications are they using.

>

> What medications has anyone found effected for the

> joints especially the

> ankles?

>

> How about aqua therapy?

>

> Thanks

>

> out of Lurking

>

> What about any of the over the counter lubricants?

>

>

> In a message dated 7/12/2008 1:30:57 P.M. Central

> Daylight Time,

> chapmac206@... writes:

>

> I dont think I have a joint left that isnt in pain

> on a daily basis.

> they have me on several different pain meds and

> nothing makes the pain

> go away altogether

>

>

>

>

> **************Get the scoop on last night's hottest

> shows and the live music

> scene in your area - Check out TourTracker.com!

>

>

(http://www.tourtracker.com?NCID=aolmus00050000000112)

>

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Guest guest

,

The ankle joint pain is because we get the granulomas in the joints. It really loves our extremities, so feet, ankles, and hands, fingers, wrists are all sarcoid-induced arthritis points. Also, for those of us that have spent years on high dose steroids, those are places where the osteo-arthritis likes to set in also. So you cna have multiple inflammation issues going on there.

I've done all the anti-inflammatories, and Motrin 800mg 2-3 x a day has helped. I'm also on Plaquenil, Methotrexate and Remicade. It wasn't until they tryed to take these away that I knew how mcuh they were helping.

What I've found that works the best for me is to stay hydrated-- (you all know my mantra) and also I take MSM powder (I get mine from PUREMSM.COM) and I add a tbsp to 1/4 cup of water, stir and chug it down, then drink a glass of water to get the taste out of my mouth- (it's not bad, but you can add it to other drinks if need be) and within minutes the pain in my joints thru my whole body is much better.

MSM is a natural mineral that we engineered out of our soils, and when food is processed-- it loses whatever minute amount that would have been there.

It is water soluble, so you can't get too much. It has no drug interactions, and I've never had anyone tell me they are allergic to it. Like I say, it is a natural mineral that we should have in our diets. I don't bother with the glucosamine chondritin-- it doesn't seem to make any difference-- but the MSM sure does.

If you can ice your joints (a frozen bag of peas or corn does great,as it molds around the joint and can be refrozen--mark the bag non-edible) and put it on the bad joint for 15 min or so-- and that sucks the inflammation out--- then as the joint warms back up, you get increased blood circulation to it-- which means higher oxygen levels to the joint, and that helps with healing.

This time of year when we are dealing with summer heat-- it is easy to end up dehydrated, and if you don't have enough fluids in your body, then the body stores extra in your joints, and that ends up as swollen joints. Just like when our hands swell if we got into the potato chips or during those " fluid retention" days.

You know when you are getting enough fluids when your body stops storing the fluids in your extremities - but expect some extra swelling at first, as the signal that you are getting enough has to take over from the starvation signals it's been getting.

Stay away from caffeine, alcholol, and sodas-- these all dehydrate. Herbal teas are great, along with water, juices that don't have high fructose corn syrup--(add high blood sugar and the neuropathy parties hardy) and you'll be in good shape.

sincerely,

Tracie

NS Co-owner/moderator

Re: To

what is this horrible ankle and feet pain, i takelyrica, pain pills, stick my feet in cold water, ineed help to. is this sarc--- FluckigerS (AT) aol (DOT) com wrote:> May I ask what Dr is prescribing the medication> orthopedic or rheumatologist > and what medications are they using.> > What medications has anyone found effected for the> joints especially the > ankles?> > How about aqua therapy?> > Thanks > > out of Lurking > > What about any of the over the counter lubricants?> > > In a message dated 7/12/2008 1:30:57 P.M. Central> Daylight Time, > chapmac206 (AT) yahoo (DOT) com writes:>

> I dont think I have a joint left that isnt in pain> on a daily basis.> they have me on several different pain meds and> nothing makes the pain> go away altogether> > > > > ************ **Get the scoop on last night's hottest> shows and the live music > scene in your area - Check out TourTracker. com! > >(http://www.tourtrac ker.com?NCID= aolmus0005000000 0112)>

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Hi,

My pain is my ankles right now. For a long time, I couldn't move my shoulders and then one day the pain disappeared. I think it moves around in my body, nevery few months, I( feel it somewhere else. It might sound crazy, but the pain is real!

Pomy

To: Neurosarcoidosis From: chapmac206@...Date: Sat, 12 Jul 2008 18:16:18 +0000Subject: To

I dont think I have a joint left that isnt in pain on a daily basis.they have me on several different pain meds and nothing makes the paingo away altogether Discover the new Windows Vista Learn more!

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