Need some reassurance

[carol55]

I've written several months ago regarding my 26 year old daughter being dx'd officially in February of this year.  Reading this site has given me some comfort but there are days I
worry about her future. Seeing that some other young women dealing with this has made me feel we're not alone.  She did have blood work done a little over a week ago and I am on pins and needles waiting to hear the results.  I really don't know what the doctor is checking.  Her last tests were in March and the doctor wanted to recheck again I guess to see if everythings stable? My worry is what to expect , what is she looking for?  I know I shouldn't worry but it is so hard.  Any reassurance out there?

[Pooh]

Hi Carol,
Boy, isn't motherhood just about the hardest job in the world?  Being a mother of 4 myself (all grown and their own) I can appreciate your concern for your daughter.  I have a daughter with severe health problems and I know the worry it causes.

I wish I knew what the specific tests that your daughter had done.  I'm sure one of our medical savey moderators or members will give you some idea of what to expect. 

Mostly I just wanted to let you know that you are not alone in your worries.  We Mom's have to stick together.  Good luck and I hope the tests show where she is on her journey and what can be done to slow the progression. 

Take care and please let us know how she is doing and you also.  {{{{{{{{hugs}}}}}}}}

Hugs and God Bless,
Pooh

[Linda196]

Carol, without knowing which blood tests were done, it's difficult to know what the doctor is looking for. If your daughter is taking medication, they could be doing tests to see how effective the drugs are, or if there's any side effects from the drugs. If she isn't taking meds, they could be checking the ESR or CRP to see if the inflammation in her system is increasing, decreasing, or staying the same. If she had any test results at diagnosis that suggested involvement of kidney, liver, thyroid, or vitamin levels, they could be rechecking those.

Generally, when a person has a chronic illness, their doctor should monitor their blood work at specific intervals, so please try to think of these tests as routine maintenance.

Of course you worry, and as a mother, there's no way I'd even try to tell you not to...it's part of our job after all!

[Debora]

Hi Carol

I agree with Linda, I have to have blood work done every 6 weeks just to check up and monitor things because of the meds I take. 

I have paperwork to have the hepatic function panel and CBC blood tests done.  I always wonder about the results and can't wait to find out. 
I'm 48 and my Mom is 66, she will tell the person taking my blood out how to do it and be careful because I usually have problems with brusing!

Let us know the results please!
Debora

[Skylar]

Hi Carol, while a diagnosis of SjS isn't pleasant, you can take some comfort in knowing that she will receive appropriate treatment. Most of us have had SjS for many years, but were only diagnosed later in life - after much damage has already occurred. It is a chronic disease which she will learn to live with and sites like this forum can help her and you with support and information about OTC products etc. She is very lucky to have a Mom who is concerned and wants to learn all she can about the disease.

Skylar

[carol55]

Thank you so much for your replies.  It is truly comforting to know there are so many caring people that you can turn to.  My daughter has been on the Plaquinal for two months.  I do know some of the blood work was a CBC, CMP and urinalysis.  Its just nerve racking waiting to see if there are any changes and what, if there are, would they mean.  On the upside she really does not seem to be doing badly, just some shoulder joint pain, dry mouth and eyes. At least  that's what she tells me.  I guess I should be glad it was found very early as she only had noticeable symptoms and only slight at that, for about a year. Hers started with a badly swollen lymph node in the back of her neck that eventually cleared up with some antibiotics after a few months.  We only thought it was an infection of some sort.  But her sed rate kept going up and after testing was found to have Sjorgens.  Thank goodness I found this site.  I refer back to it quite often.  It does make me feel better to know so many of you are living great lives despite your illness, that there is hope of some normalcy- Carol