Author Topic: A 12 year old Girl with Sjogrens Help Anyone ?  (Read 3445 times)

6blessings

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A 12 year old Girl with Sjogrens Help Anyone ?
« on: July 20, 2009, 10:41:25 AM »
 Hi Everyone,
 
 I am Mirandas mom have not been on in a while been extremely busy. I have researched until i am cross sided. Miranda has so many different manifestations i am starting to wonder if there is things that need further investigation.  FOR Example: She had a CT with Contrast a year ago absolutley normal. I keep all her records. Now her most recent in June showed. GET THIS ! Ill- defined lesions on the thyroid, Lymphnoid tissue prominintly in the hlium, A 7 mm mass is the upper left lobe of her lung. Mesentrid nodes in the abdomen as well. Recently her nose is swelling closed her perotids are swelling again and she is already taking 15 mg methotrexate, plaquinel, naproxen, folic acid, for a year now. What next? I just am not at ease i am starting to loose sleep again. I just feel like somethings missing. Not to mention she already had lesion with epitheal cells surgically removed of her tongue. I am a busy lady. I still have questions that are not quite being answered. I feel like its one big mystery diagnosis. It has turned out to be a little complex. I sometimes wonder if i have came across things in my research that her doctors are not even aware of. Like a study that indicated a prediction of a sjogrens patient developing lymphoma is a High level of IgG and polyclonal infiltration both of which miranda has already proven. Has anyone had a pet scan or is it even worth the radiation risk? I trust her doctors she is at one of the best hospitals in the world. However where does one find the healthy balance of a physicians knowledge and a mothers intuition? Thanks so much. Blessings to all:).

Mirandas Mom
6 blessings

Bernice

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #1 on: July 20, 2009, 11:58:22 AM »
i AM SO VERY, VERY SORRY YOU ARE HAVING TO GO THROUGH THIS, IT'S ONE THING FOR OURSELVES TO BE ILL, BUT IT GET'S TAKEN TO A WHOLE NOTHA LEVEL WHEN IT'S ONE OF OUR KIDS!

i KNOW YOU WANT & NEED TO HEAR FROM THOSE WITH SOME MEDICAL ADVISE, I AM NOT THAT ONE, SO I'LL END NOW. JUST WANTED TO OFFER A LITTLE SUPPORT!

GOD'S BLESSINGS ON MIRANDA, YOU AND YOUR FAMILY. MAY YOU HAVE THE PEACE AND STRENGTH TO ENDURE ALL THAT NEEDS TO BE DONE TO HEAL MIRANDA AND RESTORE HER BACK TO GOOD HEALTH AND MAY YOUR DOCTORS MINDS AND HANDS BE GUILDED BY THE ALMIGHTY ONE WHO ALONE HAS ALL WISDOM AND KNOWLEDGE!

PEACE & BE BLESSED!
Bernice

harrigan

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #2 on: July 20, 2009, 12:44:00 PM »
6blessings - I'm not able to answer the medical queries either, but just wanted to say you and Miranda are in my thoughts as you go through this.  My daughter (16 now) was diagnosed with an AI disease when she was 12 and has been on immunosuppresants since.  There have been several occasions where I knwe things were not right and the only advice I can give is to just ASK.  Don't move out of the clinic till you have said all your fears and have a contact number to call if other things occur to you at home.

Wish we were neighbours, I'm sure we'd have a lot to share.  XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

lighthouse33

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #3 on: July 20, 2009, 01:06:36 PM »
I was talking with a lady last week whose daughter has been without a diagnosis since 1999.  Started out when she was a child.  Now she is an adult.  She has a little bit of this, a little bit of that.  Been tested for Sjogren's etc.  I feel really bad for her.  I asked her what they did when she had a flare.  She said they put her in the hospital and give her steroids.  Think I've read that sometimes it takes 20 years for the bloodwork to show up positive for an AI. 
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Dolly Dimples

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #4 on: July 21, 2009, 09:05:19 AM »
  Hi Mirandas Mom,
                           I have  came into this tread a little late, but wanted to add that we have Jonnell who is Jennas Mom, on this site . 
   Her daughter is only about 4/5 or so, and has numerous problems too.
 
  Just thought she might be the person to contact and have some chats with..

 Ive  not seen Jonnell online for a while , but I think this is due to Jenna being on school holidays, and Jonnell was worried how to keep Jenna happy and amused over the hols.. Why not find her profile and drop her a line..

     She always offers to chat with anyone who has these kind of worries with little ones , so I know she would be happy for you to do this.

  She might also see this thread and come into it herself..
   Meanwhile I send my best wishes to you and your daughter, and pray that she will find peace and answers to her problems..
                                                 Blessings to you both,  Dolly x
 

6blessings

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #5 on: July 21, 2009, 07:26:24 PM »
Thank You all for your response. My prayer are with each and everyone of you. I aqm not sure how to use this site to its full capability. I need to get it dont pat so i can respond as quickly as you all have and be a blessing to someone. I think what is important for my daughter at this time is to let her be as normal as possible. Seeing how this is going to be a long haul for her. I hope i eventually find peace of mind and some kind of comfort zone with this. We are of to the nascar race 400 in indy i hope to get some of this off her mind for a while. Hope you all have a goodnight. 

Blessings; Julie Mirandas  mom.

jonnell

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #6 on: July 22, 2009, 06:49:02 AM »
Hi Mirandas mom this is Jennas mom,  First let me say you and your daughter are in my thoughts and prayers and let me send you a big hug from Jenna and me.  Jenna will be 5 in August and has been diagnosed with sjs thru blood and saliva tests.  There is so little information on sjs in children I feel your frustration.  I would be willing to answer any question you may have and if you have facebook look me up  Jonnell Labas I have a little sjs site on there of about 120 people I would love for you to join.   Also you can send me a message if you would like.    Hugs and Kissess   Jonnell and Jenna

jonnell

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Re: A 12 year old Girl with Sjogrens Help Anyone ?
« Reply #7 on: July 22, 2009, 06:51:28 AM »
Also please watch your daughter in the heat,  heat and sun are Jennas number 1 culprit for a flare thats why ive been really busy trying to keep her busy indoors or in her pool where she can cool off.