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[lark5199]

Hi I'm a mom of a 15 year old daughter who has Sjogren's.  She was diagnosed when she was 6. She's been suffering tremendously with her Sjogren's.  Just wanted some insight for comforting her.  And also if someone knows a teenager who also has Sjogren's that she can relate to. 

[Scottietottie]

Hi Lark 

Welcome to Sjogren's world. I know we have had perents of Sjoggies as young as four. I believe one has a Facebook page about SjS. I'm sorry your daughter has a lifetime to live with this condition. I hope some of our younger members get in touch.

Take care - Scottie 

[MissyLouWho?]

Welcome!  I don't know any kids with SJS, but here are some things that will help her: 

Sleep with a humidifier on.  Humidity helps keep our nasal passages moist, and everything else including skin.

Good moisturizer after a bath or shower (and limit the time in there as hot water is drying) and chapstick.

I find either a saline gel or vaseline on a q tip can lubricate nasal passages well, especially during winter.

Nasal spray and GOOD eye drops.  The cheap ones tend to dry my eyes more than not using them at all.  And use them often!  I keep a bottle next to my bed, one in my bag, one in my car (although it's starting to warm up here so maybe not in my car much longer) so I always have one near me.

PACE YOURSELF.  All autoimmune diseases make it hard to push yourself or they unleash their fury!  She has to rest often, and not push herself too hard.  AI diseases are vengeful and will knock her down with a vengeance if she works herself to the bone.  My rheumy said it's best to keep busy, but lightly busy all day.  Light activity, rest a bit, light activity...etc.  No heavy exercise, staying up all night studying or talking on the phone...she needs adequate rest!

And this is for you~ if she seems forgetful or like she's ignoring what you say, unfortunately brain fog comes with the territory 

We'd love to help her any way we can!  We're a close 'family' and always comforting to each other. 

[Joe S.]

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[Meld256]

Hi Lark,

Welcome to the forum! 

I'm sorry that your young daughter has this health issue to deal with, but you've come to the right place for information, encouragement and support.
As said, we do have several very young members and a few parents of children with Sjogren's and hopefully they will respond. 

Please look around the site. There are loads of topics that might help you. Or ask anything and we'll try to help.  Again, welcome.
Melinda

[WildThing]

Welcome to the site...it shows you're a good parent by joining us and reaching out for as much help as you can.

[Patze]

Hi Lark,

Let me also welcome you to the SJS World and family!  Please do look around as there are tons of topics that you just might find interesting by using the search engine located in the upper right hand side of this page.  If you can't find what you're looking for, don't be shy and ask away as there might be someone about that can help you.

I too am sorry that your daughter has SJS, I know that its a tough road for adults and it must be doubly hard for children & teens.  Like Scottie mentioned, the youngest on the board was four years old, and we have a few older.  There are some teens and hopefully some of them will stop by to say hi too.

Again, welcome, and give that youngster a hug from me too.

Take care of yourself -

Patze

[lynnmarie219]

Just adding my hello and welcome to you and your daughter! If either of you have any questions...feel free to ask...there is always someone around willing to help out!

[susanep]

Welcome Lark and Daughter

I am glad  you both found us here to be of any help that we can. I am so sorry that your sweet daughter has to deal with this, but at least she has a good momma that is there for her.

The others have given good input, and it might help her to have some hard sugarless candy to suck on to keep some moisture in her mouth.

Her teachers should be made aware of all the things that can happen with her as she goes through her school day. As a retired teacher, I can tell you that they have to go by what you tell them, especially if you have a meeting about it, and have it wrote down in a plan, and with any doctor info too. But, momma also rules. (don't forget that)

Prayers for both of you!
God Bless
susanep

[gold55]

Hi Lark,
I am so very sorry that your dear daughter is diagnosed with SJS.  I will pray that she deals with a very minor course of the disease.  It is possible to have a mild case.
I think MissyLou put it all together....at least the tips I would have given you.  And yes, her school authorities should know so she can keep herself hydrated and well.

Keep us posted and give your little angel and kiss.  She will be OK because you love her

[Pisces24]

The best advice I can give you and her is:  Don't let this disease define you.
You are sooo much more than any disease or label someone may put on you. Do not let it drag you down so you feel that is all you are. You are still you, maybe with some limitations now" but still you and there is a heck of a lot of you.

No matter what 1) she is going to have to work through this in her mind on her own. Some of us go through the "seven stages of grief" part.  She can do it and reach the acceptance part where she can deal with it as part of her life and take an active role in her health  and 2) you will always be her mother. Came with the territory to worry and try to help her. Don't smother her but be there for her. At times she may not seem to appreciate it but she really does. It is important to be a priority to someone, "I got your back jack" and have soemone to listen and care. Very important.

I was an only child with parents disabled when I was 13, so my life was diff from alot of my peers. But I gained some smarts and better understanding along the way. I think I am a better person due to that.

[eye2dry]

Welome to the forum.

I am sorry your daughter has sjogrens, she is so young. I would like to know how the drs were able to diagnosis her, esp. at age 6 when it is so uncommon.

It's nice to see Joe back to welcoming new people to the forum....missed it.

eye2dry