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Hello to all,
My 13 yo daughter has been diagnosed with mctd. Her problems started about 4 months ago and it's been a rough time for her. She's seen several doctors, several ER visits for pain and just last week we were lucky enough to find a rheumy who seems to be interested in helping her. She is on Plaquenil and just started relafen today - how long will it take for her to show improvement? She is in too much pain to go to school and she misses her friends because she doesn't feel well enough to hang out. Her friends don't understand they keep asking her what is wrong. Her rhemy and pcp want her to see a psych to help her through this - I am trying to find one. It seems like there are many people that do not understand these diseases - I don't want her to end up with someone who thinks this is all in her head. Any suggestions would be welcome.
Lacey's mom
 

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Welcome to the forum !

I am sorry about your daughter's diagnosis but at least you have some answers and she is getting treatment. It is very difficult for the youngsters to cope with chronic disease and getting some help for her emotionally is a good idea. I am not sure why she would need a psychiatrist as such though.
Maybe you could find somebody suitable through a pediatric hospital in your area. They often have specialist psychologists.
You will have the chance to talk with the person first to get an idea of their attitudes. We have a pediatric section here where you might get some ideas and we also have some teen age members. They cope remarkably well despite the considerable difficulties with their peers and the effect the disease has on their social life and the restrictions it often causes.
At some stage you will need to decide on a strategy to tell her friends what's going on and inform the school. Other kids are often very understanding and supportive and will keep in touch if encouraged. Calling it a "sort of arthritis" is the simplest explanation, usually understandable by all.

The Plaquenil takes a few months to fully kick in and a various NSAIDs may need to be tried meanwhile to find what works best for her. There is also the option of a short course of Prednisone to quickly reduce inflammation and make it possible for her to get back to school

Please make sure urine has been tested and start learning about these diseases yourself by getting test results. We will help you all we can. There's a enormous amount of information out there that can be overwhelming but a wealth of experience and good quality 'predigested' useful information here.

MCTD is a distinct diagnosis and isn't usually spoken of as the precursor of lupus. It refers to an overlap condition that has some symptoms of lupus, scleroderma and polymyositis. Symptoms of one disease or another may predominate or come to predominate but it might stay much the same.
Strictly speaking there will be high levels of an autoantibody called anti RNP and of ANA antibodies.
It is a relatively rare condition with no special support group and we have a few members here with it.

We'll help you all we can to come to terms with it so just ask for any further help.

Good Luck

Clare
 

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Hello, I have Lupus and am Mum to Immi,17 years old with Lupus. If we can help please let us know.
Immi is lucky she has several good friends who understand and her best friend also has health problems. Immi did have spells without good friends but I wanted you to know it can work out well.
X Lola
 

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Hi,

My daughter has Lupus and is now 18. She is slowly being transfered to adult care from a sick childrens hospital as once you are 18 you are told old for this hospital.

This hospital has many specialties involved in her lupus care, dietitian,social-worker, psyc., nurse there for adolencent issues, Rheumie nurse that we can call at any time etc. A child that is dealing with a life altering illness can use these specialties to help them deal with the many questions and problems that arise.

It was her Rhemie psyc. has been a great help, and actually was the one who alerted the Rhemies of her symptoms she was having(Lupus was attacking her brain).
This psyc. was instrumental because my daughters blood work wasn't showing how serious her lupus was.

My advice would be find a childrens hospital that has a department of Rhem. and get her referred. In our home town she was initially wrongly diagnosed by a adult Rhemie.

Sharon
 
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