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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Margaret

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Posted 21 August 2007 - 02:43 PM

Hi Everyone,

Gareth had another good doctor visit today....with his psych doctor. He was totally shocked at the 'new Gareth' compared to the 'totally withdrawn' kid he saw last May. I told him he has been on Plaquenil since June 1. He was so excited about Gareth that he went and got the other psych doctor....the one who specializes in autoimmune depression/anxiety disorders....who told me about the correlation between the two last spring.

Anyways.....what do you all say when you have been on meds and you are doing fine now? Do I still put down on medical papers that Gareth has UCTD/prob Sclero: do I say UCTD/prob Sclero but in remission: do I not mention it at all if he isn't showing any symptoms at all? Just curious since we will be filling out school forms all next week.

Take care, Everyone.
Margaret

#2 Shelley Ensz

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Posted 21 August 2007 - 06:45 PM

Hi Margaret,

That's great that Gareth is doing so much better!

Since he seems to be improving due to responding to treatment for UCTD, and is on medication for it, I'd say that you could consider listing it as "UCTD, currently under control with Plaquenil."

That would alert them to the fact that he is on plaquenil, and that other complications could conceivably arise. You could perhaps drop the "prob. scleroderma" for the time being. Maybe the plaquenil is nipping that in the bud.

Keep in mind they may very well have no idea what UCTD is, and they are even less likely to have heard of scleroderma. So you may want to spell out Undifferentiated Connective Tissue Disease and add "autoimmune disease/arthritis" or just go for "autoimmune disease/arthritis" in the first place.

That basic information would be good and would hopefully alert healthcare workers to consider many possibilities (and not only scleroderma). I'd also be interested to hear what others might suggest.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 peanut

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Posted 21 August 2007 - 10:12 PM

Margaret,
I'm glad to hear Gareth is doing so well. Hooray!

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 RememberingToSmile

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Posted 22 August 2007 - 12:12 AM

Good news about the doctor visit - you must be relieved with the great progress (!)


What is the purpose of the form? Is it to (1) use in case of emergency, (2) alert teachers to potential special medical needs in the class (3) something more...?

I would write "chronic autoimmune condition" and there is probably space to list meds for emergency personnel (hopefully never needed, but kids fall and break toes, etc....). Then have a one-on-one with the teacher and school nurse to explain as you feel comfortable.

I was told a rule of thumb for declaring "remission" is a year symptom free or under consistent control. Others have said there is no remission, just "effectively controlled" I like the idea of remission.


How do others define remission?

-RTS

#5 Clementine

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Posted 22 August 2007 - 02:11 AM

Margaret,
Yay for Gareth AND you, for taking such great care of him, making sure he gets the proper care and loving him like you do. You are a great Mom and you should be proud. :) I am always thinking of Gareth and was delighted to hear the news.

To be in remission, would that mean you cannot even have a Raynauds flare?
I am so annoyed with it. I currently take Procardia XL twice daily and yesterday it was 97 here, so I had the AC on 82 with ceiling fans on low (my dogs get hot, so it was for them) and I had to wear my fuzzy slippers and my hands were tingly and white...ok, off the subject.

I think what Janey and Smiley Girl :) have given you some good answers!
xo,
Jennifer

#6 Sheryl

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Posted 22 August 2007 - 04:20 AM

Jennifer, I think you will still have your Raynaud's. It just means that whatever was flaring up in your system at the time and you were given something to take away that pain that the problem was now in remission. If you had a GI flare a kidney flare or what ever it calms down or goes away it is considered remission. The Raynaud's will also flare or be worse at times. But, I never heard of it going away forever. Someone wiser may have a better answer. Sheryl
Strength and Warmth,
Sheryl

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#7 Sweet

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Posted 22 August 2007 - 05:18 AM

Hi Margaret,

My first thought is why would the school even need to know. My inclination would be to wait and talk with whichever teacher he is assigned, and explain to her only just so that she understands if he's tired etc.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Margaret

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Posted 22 August 2007 - 02:41 PM

<<UCTD, currently under control with Plaquenil." >>

Hi Everyone,

Unfortunately, on school forms, they always have you list current medical conditions and medications. I like Shelley's idea. I have already talked to his main teacher and she knows someone whose husband has sclero. Totally surprised me!!! She did say we will keep in touch and go on a 'day by day' basis. I know it hasn't been a year.....only 2 1/2 months on Plaquenil. He has been very fatigued and lethargic since Monday. We moved part of our belongings into an apartment at State College and Gareth helped all day. I think he is 'paying' for it.

Thank you all for your suggestions.
Take care, Everyone.
Margaret