View Full Version : My daughter... :(
03-31-2011, 09:01 AM
Starting in Feb. my daughter, Kayla started experiencing pain in both hips, extreme fatigue... We took her to the Dr. & they ran some tests and the Dr said she thinks Kayla has arthritis or lupus and we should take her to a specialist. We have an appt. with a specialist, but in the meantime she is having pains elsewhere now too.... Hips, ankle, knees, thighs, arms. On top of the pain Kayla said her head feels foggy & she is just exhausted! I called the Dr. & told her of Kayla's new symptoms, so she prescribed her Naproxin. She's only been taking it 2 days now. She just turned 15 on this week.
Is it normal to wait to see a specialist for 2-3 months?
What can we do in the meantime?
Will Naproxin help?
This is all so overwhelming... I just need someone to talk to. Thanks for listening (reading)!
Oh I am so sorry to hear what is going on with you! My daughter has her own Rheumy because she has had knee, hip and back problems since she was about 6 or 7. They really began paying attention to her once I had my diagnosis. She has been given 25 mgs of ammitriptyline to take at night. It helps her sleep and is good for chronic pain.
It often takes a really long time to get in but I have learned a trick that helps. Call the doctors office and ask to go on the waiting list to be called if/when someone cancels. I have gotten in as quickly as 1 day but usually that week.
I know it is hard to tell a 15 year old (that is how old my daughter is) but until she gets to the doctor you might want to have her stay out of the sun and if they have florescent lighting in school have her ware sunscreen of at least 50. Many of us become sensitive to UV rays and it is something that can be done before going to the doctor.
I know this is a really hard time but we are here for you! Please feel free to post at anytime!
03-31-2011, 09:34 AM
Hello Kayla's mom,
Welcome to our lovely large family of the WHL and it's nice to have you with us, there's so many threads for you to venture through incase Kayla does have Lupus or Arthritis as you'll learn what symptoms occur.
Well to wait 2-3mths to see a specialist and i'm hoping it's a rheumatologist she's seeing so bloods will be done to determine what your daughter's actually got but if she as got Lupus which you don't know yet, it makes bloods fluctuate where it can give negative readings where it could be positive, it messes with the bloods sometimes to get actual positive readings. I have to wait 6mths to see my rheumo specialist and i don't think much of him but they're not all the same but if i need help in the meantime i see the sister.
What your daughter's going through is exactley what i experience hip pain which spreads down the legs and if you sit to much you go into a locking position it's so uncomfortable besides other joint pain and yes it makes your fatigue go very low, i've had to learn to space myself so i still get rest.
Refering Naproxin i've never tryed the drug but someone in due course will answer you about that and i really wish your daughter all the best and at 15 she's so young.
~Hugs Terri~ xxx
03-31-2011, 10:19 AM
Welcome Kayla's Mom!
Like Mari and Terri already said - it's not out of the norm to have to wait so long. The first rheumy I went to had a 3 month wait and that was even after I had already been to the ER and they recommended a specialist. It's good that your pediatrician is so on top of things and is willing to work with you and your daughter on treatments in the meantime. I know it's all new and scary and confusing and hopefully your specialist will be able to squeeze you in sooner off the waitlist. You have come to a good place. Take a look at the different boards on here and you will have a better idea of some of the tests the specialist may run and what the tests are looking for. You will also see that there are some other teens here dealing with the same issues as your daughter is now. She's going to need you in her corner. If you take a look at Ritzbit's threads you will see how AI problems really can affect the teenage social and academic life and how important a good parental support system is.
03-31-2011, 10:56 AM
Hi Kayla's Mom;
I, too, am sorry to hear that your daughter is suffering and that it could possibly be Lupus. You've been given some good advice by our members here and please do read through the stickys and the forums here. You will learn a lot and find the answers to some of your questions. However, if you have any other questions, please know that we are here to help you in any way that we can.
Do try to ensure that your daughter avoids the sun as much as possible and, as was suggested, wear sunscreen if her classrooms have fluorescent lighting. Also, while it is important that she maintain a regular exercise program, it is just as important that she take recuperative rest periods and that she not over do any physical activity and that she avoid stressful situations as much as possible.
With reference to Naproxen (aka:Aleve)- Naproxen belongs to a class of drugs called Nonsteroidial anti-inflammatory drugs[/URL] (NSAIDs). Other members of this class of drugs includes: Ibuprofen (Motrin), Indomethacin (http://www.medicinenet.com/script/main/art.asp?articlekey=9520) (Indocin), Nabumentone[URL="http://www.medicinenet.com/script/main/art.asp?articlekey=822"] (Relafen) and several others. These drugs are used for the management of mild to moderate pain, fever, and inflammation that are common symptoms of Lupus. They work by reducing the levels of prostaglandins, the chemicals that are responsible for pain, fever, and inflammation. Naproxen blocks the enzyme that makes prostaglandins (cyclooxygenase), resulting in lower concentrations of prostaglandins. As a consequence, inflammation, pain and fever are reduced.
Often, doctors will prescribe one of the NSAIDs with another type of anti-inflammatory drug known as corticosteroids (such as Prednisone). Your Pediatrician will probably want to wait until you see the rheumatologist before discussing the use of this drug if your rheumatologist feels that it is necessary.
I hope that the Naproxen does provide some relief to your daughter until she is able to see the rheumatologist. In the meantime, please come to us with any questions that you may have or if you just need to talk. We are here to help you!
Peace and Blessings
03-31-2011, 01:00 PM
I'm sorry to hear that your daughter is going through all of this! I was 15 going on 16 when I was diagnosed and I know how hard it is. I also take Naproxen and its helped me for the most part when I've needed it for joint pain. I would also suggest asking to be put on a waiting list so that you can hopefully get in sooner. I hope that they find out what is causing her so many problems! Your daughter is lucky to have a mom who is looking into all of these things with her! Tell her if she ever needs to talk I am more than willing. I know how frustrating being sick and being in high school can be. I have been really sick lately and it has been hard because Im just trying to finish my senior year.
04-02-2011, 08:10 AM
Hello Kayla's Mom,
I do hope your daughter is keeping ok to the best of her ability plus the member's and threads have helped in alot of ways for when Kayla see's the specialist.
~Hugs Terri~ xxx
04-02-2011, 09:46 PM
Hi Kayla's Mom,
Welcome to WHL. I also have a daughter named Kayla!
I waited six months to see my second rheumy, but she was worth the wait!
Follow the advice that the others have given, and learn as much as you can about autoimmune diseases.
Help Kayla to understand it all and both of you should ask lots of questions when you see the doc.
Good luck to both of you.
04-04-2011, 09:03 AM
Thanks for the advice. I did ask that the Dr. to put us on the waiting list. I just wanted to know that that was a normal waiting period, it seems like such an awfully long time. It's so weird how all of this can happen so suddenly.
04-04-2011, 09:11 AM
Thanks for the advice. I did ask that the Dr. to put us on the waiting list. I just wanted to know that that was a normal waiting period, it seems like such an awfully long time. It's so weird how all of this can happen so suddenly.Hello Kayla's Mom,
The waiting time your having to wait is quite good i wished i had that, it's every 6mths for me but some member's do see their specialist's even quicker, i do surpose it's who your seeing.
I really do understand about how you feel with it happening quickly because i just went in life putting up with ailments and within 3yrs alot as hit me so quickly and it is so unbelieveable.
~Hugs Terri ~ xxx
04-04-2011, 09:12 AM
Thanks ritzbit. I will let her know that if she needs to talk to other teens that can relate she can come on here.
04-04-2011, 12:21 PM
Not a problem =) Is she going to a Children's hospital? I'm lucky and live very very close to one and thats where I still go. It took a little while to get in the first time but after that it wasn't a problem getting an appointment and they work around when my mom can take me.
04-13-2011, 10:04 AM
Yes, she is going to a Children's Hospital, it's about a 3 hour drive away, but I hear it's phenomenal! June can't come quick enough.
04-13-2011, 11:47 AM
Im lucky I only 20 min from the one in Cincinnati. I hope you can manage to get an appointment sooner!