Author Topic: My 13 year old With SJS and diminishing WBC  (Read 6911 times)

6blessings

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Re: My 13 year old With SJS and diminishing WBC
« Reply #15 on: January 30, 2010, 07:03:38 AM »
Thank you all for your replies.  my daughters Doc calledyesterday. We are waiting on LUPUS labs tocome back still. Just incase thats it. As well as Holding her Methotrexate for a week and repeating labs next week. Then i guess we decide wich direction to go in. I appreciate all your support. This web site has been such a blessing. Everyone have a wonderful weekened.

6blessings; Julie

Patze

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Re: My 13 year old With SJS and diminishing WBC
« Reply #16 on: January 30, 2010, 10:09:43 AM »
Hi Julie,

I too am sorry that your daughter is having such a tough time (childhood is tough enough these days without throwing this mess into the mess too), and I sure hope that her doctors can figure this out soon!  I'll also keep her in my thoughts and prayers too. 

Hang in there, give her a hug from me too, and please keep us updated, okay?

Take care -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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Sero Negative Queen

lindaneall

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Re: My 13 year old With SJS and diminishing WBC
« Reply #17 on: January 30, 2010, 02:38:52 PM »

Hi Julie,

I am so very sorry that you and your daughter are going through this.  It is so sad how much you all are dealing with....and she is only 13!!

My thoughts and prayers are with you and your family as you go through this stressful time.  Please do keep us updated.

Sending great big hugs to both of you.

Linda

harrigan

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Re: My 13 year old With SJS and diminishing WBC
« Reply #18 on: January 31, 2010, 11:45:02 AM »
Hi Julie - I don't have any answers but just wanted you to feel a little less alone.  My daughter was diagnosed with an AI diseaes aged 11 and has been on CellCept since she was 12, 5 years ago.  There are always ups and downs, bad times and better ones and I do hope better times are just round the corner for Miranda.

It is really hard to have something that nobody else your age has.  Katharine has mucous membrane pemphigoid which is virtually unheard of in children so in that sense it is like Sjogrens.  When I became ill and was diagnosed myself last year, my admiration for her grew even greater as I suppose I had not always appreciated how completely draining and exhausting a systemic illness could be.  When you add in the side effects of immunosuppressants too, it makes life very challenging for young people.

Just wanted to say my thoughts are with you both - hang in there as I know how busy family life is (K is 4th of my 5) XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

6blessings

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Re: My 13 year old With SJS and diminishing WBC
« Reply #19 on: February 01, 2010, 06:15:06 PM »
Hello, everyone

Just wanted to let you all know that Miranda has became quite ill with a cold or sinus infection. Who really knows. I am waiting for the doc tocall back i amreally nervous for her since her counts are all ready so low right now.:( Ill keep in touch, . Ty all

6Blessings

Patze

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Re: My 13 year old With SJS and diminishing WBC
« Reply #20 on: February 01, 2010, 06:31:18 PM »
Hi Julie,

I'll keep Miranda in my thoughts and prayers for a speedy recovery.


Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

harlin

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Re: My 13 year old With SJS and diminishing WBC
« Reply #21 on: February 03, 2010, 07:33:00 AM »
Julie
thoughts and prayers for you and Miranda. Be sure to keep us posted. We are all very concerned.
hugs and prayers, harlin