[pannk5]

Hi! My 13 year old daughter was diagnosed yesterday by the rheum. Needless to say I am totally heart broken. Right before Thanksgiving she woke up with the malar rash. Since we are new to town we went to a recommended pediatrician who right away asked me if she had ever complained of pain in her joints.. I WANTED TO DIE!!! :sad: My daughter had been complaining off and on about pain in her knee or her elbow for about 6 months. Because it was infrequent and had always heard of 'growing pains' I hadn't taken her to the doc to have it checked. The pedi ran some tests and the day before Thanksgiving she called me to her office and told me about the ANA tests and referred us to a Rhuem.

We just moved from Miami and the closest pedi rheum is in Miami about 2 hours away (go figure) I am really happy with the doctor although both times we have been we have waited for 5 hours to see the doc [w/ an appointment]. Needless to say when the doc told us yesterday, my husband, daughter & I were shocked. My daughter wants to have nothing to do with it and doesn't want to know anything about it. She is very smart [in the gifted program at school] and is opting out. I feel that we should not dig our head in the sand and should try to get as much info as possible.

Does anybody have any suggestions as to how to help my daughter understand and cope? I'd love to hear others stories so I could help her.

Please help & God Bless all.

 

[Joandublin]

Hi there and welcome to the Forum but Im sorry about what brings you here.

Please dont be hard on yourself about not getting those joint pains checked out. I think if we were all to get every pain investigated we would be soon labelled as hypochondriacs so please be reassured that you have done nothing wrong :hug: Its actually very unlikely that your daughter would have been tested for Lupus in any event based on joint pains alone so put any 'guilty' feelings out of your head. Lupus is a very complicated disease and it can take a lot of expertise and detective work to diagnose it.

I am sure you and your family are still in shock at hearing the diagnosis. It probably feels like someone has landed a bomb into the middle of your world :hugbetter: Your daughter's reaction is not uncommon. Many people will immediately go into denial and even though your daughter sounds like a very bright, mature 13 year old, she is still a young girl and is not able to take in the diagnosis just yet. No 13 year old wants to hear that they have a chronic illness which will need treatment and monitoring throughout their life. Goodness, its hard enough to take it in when you're diagnosed like me in middle age!

The thing about Lupus is that it affects people differently. The important thing for you, as her mother, is to know how it is affecting your daughter and to inform yourself about the disease and the treatments. I would give her some time to process the news and in the meantime arm yourself with knowledge. Please dont scare yourself senseless as there is a lot of outdated information on the net. This is a very reputable site with accurate information and very good support. Stick around here and ask any questions you like.

Have the doctors mentioned starting any treatment for her? We can help you understand the various medications and how they work. There are some younger people here who have Lupus but they dont usually post as frequently as the adults. Having said that, they provide a unique viewpoint into the illness and how it affects younger people so you could check out the Under 20's forum.

The other advice I would give you is to make sure you get copies of her bloodwork so that you can learn more about how the disease is affecting her and how treatments are working.

Give your daughter some time. She is very young and may not want to know the ins and outs of this disease. She probably just wants to feel well again and you can help her by absorbing the information yourself at this stage.

Please stay in touch and we will help you in any way we can.

Take good care
Joan:rose:

 

[LolaLola]

Hello, Joan has really said it all. I don't know if I can be any help but I have Lupus and also have a Daughter with Lupus, so perhaps I can see it a bit from both sides. Both my Children had various quite significant health problems always. They have both come through pretty well except that my Son, now 21 has never chosen to really understand the details of his problems, always preferring to hide them except from people he knows really, really well. Until recently he has not even been to see a Doc. by himself as he always wants me to relate the medical history.
My Daughter is 17 and had other problems from the time she was small, including a deformed renal tract and a recently discovered heart murmur. I thought she was heading toward a Lupus diagnosis so it was not a huge shock to me. She was very ill and unhappy at that time, but within less than a year of diagnosis she is more than able to discuss her symptoms with Doctors and is very knowledgeable about Lupus. I did not push her to read any leaflets or anything, but one day in a clinic about six months after diagnosis she picked up the leaflets for herself.

She has spoken a little to some of the younger members here, all of whom are delightful, but generally she does not involve herself too much in forums etc.

If I can be any help at all please get in touch. For what it is worth, I used to wonder how things would turn out for my Son as he was too ill for school for years on end. He is now doing a job he loves and is good at, sometimes all the worry is unnecessary.
x Lola

 

[pannk5]

Hello LolaLola & Joandublin, I appreciate your responses. I thank you very much for your support. :bigsmile:. I guess the thing that was eating me up more than anything was thinking that I had waited to long.

Luckily the rheum had said that all her function tests came back normal with the expection of her liver. Her kidneys are doing fine but her liver functions are high. He already had her on meloxicam from the first appointment and he now started plaquenil. Since she is very tired and can really only function half day at school, he suggested I see how the plaquenil works and if she doesn't feel better than in 2 weeks start a small dose of prednisone. Is there a direct relation with Lupus & Krones? He had a G.I. check her out and it is testing for Krones disease. She has never had a stomach issues except now when he examined her belly she had a pain in her lower right quadtrent.

Also, I wanted an opinion on getting the wristbands & bumperstickers. Is it too much in your face? I am blessed to have a very close relationship with her but sometimes I know that she accepts things just because she thinks it will make me happy. When I asked her she said it was fine and seemed to like the idea but before I order it does it seem too much? Since I am new at this I don't want to be obsessive.

Thank you ladies again for all your support & ideas. I wish you all the best.

Natalie :wink2:

 

[Joandublin]

Hi again Natalie

Just a thought... Was the blood test that showed elevated liver function taken sometime after she was put on Meloxicam? If so the drug itself could well be the reason why her liver enzymes are raised. Meloxicam belongs to a group of drugs called Non Steroid Anti Inflammatory Drugs (NSAID's) and they are known to sometimes raise liver enzymes so it just might be that the drug itself is causing the liver issues. If thats the case her doctor can take her off the drug and her liver function should return to normal. There are lots of different NSAID's out there on the market to try and some may suit her better than others.

Also if he has only recently started her on Plaquenil Im surprised that he expects her to feel better within a few weeks. Plaquenil normally takes between three and six months to take effect - sometimes longer than that. However if she is put on low dose prednisone this should have the effect of making her feel better fairly quickly. Prednisone is a more powerful anti inflammatory drug but should be used sparingly because of its long term effects on bone density.

Its difficult to say if there is a link between Lupus and Crohn's disease. Nobody knows for sure what causes Crohn's though it was thought to be an autoimmune disorder until recently some studies showed that this might not be the case. However one thing is sure - Crohns is an inflammatory condition and Lupus causes inflammation. I guess its safe to assume that there could well be a connection between the two. In any event, anti inflammatories should help her if she has Crohn's.

As far as creating awareness of Lupus through the stickers and wristbands, etc - personally I think if she likes the idea then go for it. You can never have too much awareness of this disease!

Any more questions just ask away

Luv n stuff
Joan:rose:

 

[Maia]

Crohn's does seem fairly unlikely under the circumstances... usually it causes intestinal symptoms, pain without pressure, and weight loss. I would not worry too much about it at least.

I would just let your daughter talk and learn about lupus at her own pace as much as possible. Thirteen is awfully young to have to take on something like this! In your shoes, I would probably carry the weight on my shoulders until she was more ready to take any responsibility/learning/managing it on herself.

Plaquenil shouldn't be expected to work in such a short period of time, but perhaps he just wants to help her get back to school full time sooner rather than later.

It is rather shocking that she was diagnosed so fast too. It usually does not happen that fast based on symptoms of mild joint pain, fatigue, and a red facial rash. So you got her into the doctor plenty early in my opinion! Did they also test for other viruses/causes of these symptoms such as CMV, parvovirus, mono, etc.? These things can cause long term fatigue and joint pain, one can cause the red face, and can affect liver function, and even the ANA test can be temporarily positive from them. I would certainly want other possible causes that are *less* serious to be effectively ruled out if she was my daughter...

As for the bracelets, you can go ahead and order them and then see if she wears it. That may give you the best idea as to if she really wants to "advertise" her condition with bumper stickers and wristbands. I am guessing the $$ will help to support a lupus cause so no harm done by merely ordering them...

Best wishes to you and your daughter - I hope she improves soon with treatment. And you've done a fine job Mom! Clearly a very caring and concerned mom so she has a lot going for her there already.