Hi. My name is Micki. I'm actually here on behalf of my daughter. She's 13 and was diagnosed with Sjogrens several months ago. Her main symptoms are fatigue and roaming joint pain. It's tough to be in middle school with these problems. Her siblings think she's faking exhaustion or queasy stomach to get out of work. Half of her friends at school are skeptical about the whole illness thing.
She started Plaquenil 2 months ago and just increased from 1 to 1.5 pills. Side effects include headache and stomach feels off. I am hoping these are temporary and we'll be able to get to 2 pills in a while.
Thanks,
Micki
Hi Micki - welcome! :)
It's tough for a 13 yr. old to be diagnosed with Sjogren's. The most important thing is that your daughter diligently treat her symptoms as best she can. Make sure she takes the Plaquenil with food. Some people eat yogurt too.
Does she have dry eyes and dry mouth? Being diagnosed with Sjogren's she will have to keep a watch on her teeth. Bacteria can really do a number on your teeth when you have a dry mouth.
Has she had her thyroid checked? When that is out of whack, it can cause a lot of fatigue.
Maybe since Venus Williams was recently diagnosed with Sjogrens, your daughter can use her as an example to her classmates, friends.
There is a wealth of information here on this site. If you any specific questions - feel free to ask away. You can put words in the search box to the top right of this page and it will take you to previous threads about that subject.
We have a young lady, who is 17 yrs. old on the forum. We had a gal that is now probably 6 or 7, but she doesn't come here any more.
I'm sorry your daughter has this disease, but glad that you are being pro-active to find out information about it.
Bucky
Wow mom2many,
13 and Sjogren's?
Ok, that is way too much.
She needs lots of TLC. I can't quite imagine this scenario.
Please keep us posted, mom.
We all send our love to both of you.
Hugs.
Elaine
Welcome Micki!
So sorry to hear that your young daughter has been diagnosed with sjogrens but on a good note its positive that they found it early and can treat her symptoms now instead of having her go on and on without any answers. It's also good to hear that you are willing to find out information on her behalf and act as an advocate for her.
There is a lot of information and support here and if you have a question on something that you don't see here on the boards....just ask...someone is always around to try to help out! We are a pretty friendly bunch here... ;)
Welcome to the site. I am so sorry to hear about your daughter. I know that it can attack at any age. There are supplement that can help. Middle school can be very hard on children that have health challenges. Please support her all that you can. Understand that you hear less than half of what she encounters in school. There are numerous consessions that the teachers will have to make for her and she will have some that do not believe in auto immune diseases, just as there are many doctors that do not believe in auto immune diseases.
Sorry to hear about your daughter.
When I first started taking plaquenil the pharmacist told me the side effect of an upset stomach should wear off the longer I was on it. He did suggest starting at a lower dose for a week of so and then working up to the prescribed amount.
Best wishes
Tracy
What can you say thirteen years old, I am so sorry to hear of someone so young with this terrible condition. I really feel for your daughter and family.
Welcome to the both of you.
Cheryl
Hi Micki
I'm so sorry to hear that your daughter's been diagnosed with Sjogren's. Many of us aren't diagnosed until our 40s but looking back we wonder whether the undiagnosed symptoms we had from childhood or teenage were actually Sjogren's itself. So in some ways it could be good news that she's got an early diagnosis. I'm sure it doesn't feel like that to her, or to you.
I'd echo the advice the others have given about taking Plaquenil with food, especially yogurt. Plaquenil is very bitter - you discover this the first time you have nausea after taking one! - and hard on your digestive system. But it's a very good disease modifying drug. Do let us know how she's getting on with it. It usually takes at least 3-4 months before it has an effect on the exhaustion.
You can also use us as a sounding board when other medications are suggested. Many people here take steroids - Prednisolone/Prednisone - and different types of pain medication. These all help but also have side effects which we have a lot of experience of so we're always happy to share our wisdom!
How are you feeling yourself? Other parents and partners post here and it's a good place to share worries, and good times too! Many of us are parents so we can empathise with you. Dismissing her symptoms could be a way of her siblings pretending this isn't happening as they find it just too hard to bear. Maybe they could post on the site and share their questions and concerns? Her teachers might welcome some information too.
Welcome to you all - Chickpea
Thirteen is a tough enough age without having to battle with Sjogrens also.
One thing about us Sjoggies is that we learn to listen to our bodies better. I believe we are more health conscience on the foods we eat, etc.
Looking waaay back (LOL ;)) I probably had some form of Sjogrens back at that age. I really didn't think about it then though. My periods were irregular and I never seemed to put on much weight. (My dad became disabled when I was 13 too. ) Age 21 I got diagnosed with Hashimotos (underactive thyroid) so I went through a year of getting that regulated and it helped. Then about 10 yrs ago I started to have a lot of teeth cavity problems, numerous sinus infections and my bloodwork got "wonky". I was finally diagnosed with Sjogrens.
Just be supportive for her, be there when she wants to talk and accept that she has Sjogrens. It is soooo nice to be understood and not having others think we are lazy or depressed. Just remember that SJS is unique to each person and we tend to have different ranges of symptoms and intensity. She will face that with other people and most of us still face that. It is nice to have Venus Williams to point to as now it is a "celibrity disease" and maybe just maybe others will be understanding.
Come on the boards yourself or your daughter anytime - to ask questions, talk or just to vent. We have chat sessions too you are welcome to come in on.We all undersand and are not judgemental. We've all gone or are going through the same things she is.
PS: Thanks for understanding your daughter and trying to find some answers.
Becky,
When she was diagnosed, she didn't even know she had dry eyes. I think that's because she's had it for a while and thinks its normal. Or maybe just it's not a serious symptom at the moment. I got her Bioten toothpaste and mouthwash and mouthspray for at school. The taste is the big complaint, but she does use it.
I don't think we've checked thryoid. I'll check at our next appt.
I'll check out the search box with questions.
I'm glad we were able to diagnose this early.
Micki
Elaine
I agree that having Sjogren's at 13 is really sucky. I'm glad it is relatively mild. I give her as much TLC as I can. She lives with me and 5 of her siblings. And I'm dealing with Ankylosing spondylitis and the stupid re-emergence of lymphoma.
We've got a support network and that helps a lot.
Micki
Thanks for the welcome!
My daughter is lucky because I started having similar symptoms at the same age, but it wasn't until I was almost 16 that I was initially diagnosed with JRA. AI diseases run in the family, so I am sensitive to the symptoms.
Seems like a nice place here. My daughter thinks I'm nuts with all my message boards, but finding people with a specific thing in common is difficult to find IRL and wonderful that I meet so many online.
Micki
Joe, thanks for the welcome. My parents were very proactive for me in high school when I had a bad arthritis flare for a year. My teachers were all sympathetic and made sure that absences didn't count against my grade, even for Orchestra. I need to make sure my daughter gets the same.
Micki
Tracy, Thanks for the reminder about the plaquenil. She said she had oatmeal with it today. But sometimes on school mornings, she doesn't eat but takes her medication anyway. I try to have something she can grab and go.
Cheryl-Thanks for the welcome.
Pices24- Thanks for the welcome. Often dd will come to me with a complaint and I say, "Sorry, that's the Sjogren's" She's a very social and active person and this is really cramping her style!
Micki
Hi mom2many,
Welcome! (and what a great screen name :)) Micki.
I think it's wonderful that your daughter has you as an advocate for her! Dealing with JRA has obviously made you sympathize with issues both physically and socially that she will deal with .
And, even though 13 sounds so very young, as said before, many of us can look back and think we may have had health issues back that far. It sounds very positive that she has a diagnosis and is being treated.
Please let your daughter know there's a bunch of people at SW that wish her the best! :D 8)
Melinda