I just posted this morning for the first time on the Newbies board and some of the responses there have made me question a few things. My fifteen year old daughter recently had a positive ANA and SSA. She also has hypotonia (low muscle tone) and Ehlers Danlos syndrome. She has had terrible problems with her teeth for her entire life, and cognitive issues as well. Her dentist noted that she had reduced salivary flow years ago. She has been in quite a bit of pain since Sunday, and her pediatric rheumatologist won't pursue any treatment except motrin, tylenol and warm baths until he has the results from her Schirmer's test and salivary biopsy. It is so hard to watch her suffer and have no idea of what else I can do to help her.
If Sjogren's isn't something commonly seen in children, am I wrong in thinking that someone in pediatrics might not be the best person to treat her? I'm super new to this and don't know how often it is diagnosed in children. My gut instinct is to find her a specialist that deals with Sjogren's on a more frequent basis. We are within 2 hours drive of University of Florida, where some Sjogren's research has been done. I plan on calling them on Monday. Thoughts?
Hi ECats,
I wish I knew exactly what to tell you, but as a Mom myself, I can only tell you what I would do. I would call the UofF on Monday and see what they say. Then I would look for another rheumy. At 15, your daughter is almost an adult and should be treated for her pain. With the positive ANA and SSA, plus the dentists report on low salvia and the other problems that she must deal with, I think it's time to find another doctor.
I watch my own daughter suffer from fibro and spinal pain, along with polymyositis and other things. I know I would go to the ends of the earth if I had to, to get her relief. I thank God every night she has a good team of doctors and she is now able to lead a comfortable life.
I wish you and your daughter all the luck in the world in finding relief from the pain and discomfort.
Pooh
Hi Again ECats,
I cant tell you what you to do, but I guess my opinion is to make sure you are dealing with a rheumy who has had experience in treating sjogrens. If your daughters current rheumy does not deal with it on a regular basis and is not willing to treat her and you live within 2 hours of a major University and/or Medical Center.....you will most certainly find someone there to fit your needs. I also drive about 2 hours to see 3 of my specialists...to me its worth it!
Good luck to you and please keep us posted!
Hi Ecats,
I know from my own personal experience that Medical Universities seem to be more on top of things when it comes to Sjogrens. I would go with what your maternal instincts tell you to do. Good Luck in finding answers and I hope she gets excellent help soon.
Take Care!
Vicky
www.sjogrensandme.blogspot.com
Thanks for your responses and kind words. I spoke with UF this morning, they don't see anyone under the age of 17 in their rheumatology department. They couldn't really tell me if their pediatric dept. has seen Sjogren's patients or not. If she has to see someone in pediatrics, for now we will just stick with the one she is currently seeing.
Hi Ecats :)
As children can get arthritis at any age - I would have thought that there are definitely paediatric rhematologists out there. Maybe if you got to see one - they could point you in the direction of a sjoggie specialist.
Take care - Scottie :)
Pediatric Rheumatologists might have some experience with secondary sjogrens as that can occur with their Juvenile Arthritis and SLE patients. I would ask your current rheumy if he has treated kids with sjogren's before. Have they ruled out other autoimmune disorders (JA, SLE etc...).
If you are still waiting for her follow up visit after the testing and her pain is getting worse, you might call and ask about something different for pain until your appointment. It isn't unusual to hold off on starting the bigger meds (plaquenil, methotrexate, prednisone etc..) until test results are in so they can have a better idea what is going on, but they should treat her pain so be sure to let them know it is getting worse and ask for a different NSAID/pain med.
It has to be so hard watching your daughter hurting so much! Gentle hugs to both of you. Hope you hear back from her Dr. soon!
Nancy