Hi... and needing some advice for 10 year old daughter
Hi~ (sorry if this is the wrong place to post this message!)
I'm new here (just registered).
I'm needing some advice regarding my 10 year old daughter who has been having a lot of lupus/connective tissue disease symptoms for the past few months and joint pains and chronice diarrhea before this. At first she developed petechia, so she was examined by a paediatrician who ordered a FBC and did autoimmune blood tests because I was insistent. The ANA came back positive (1:640)- I only found this out because I rang the ward as she was having a really bad headache and nothing was helping. I was told by another doctor that if I was really worried about her headache that I should bring her in to Accident and Emergency. I did and she was referred to paediatrics later that day. The doctor took a history and said he would ring me the following morning to let me know about a follow-up appointment with a consultant. I was told in the morning that it would be 2-4 weeks wait.
However, last Saturday my daughter developed a classic malar rash. I took her to the out of hours GP who referred her to the same ward. They are now taking it a lot more seriously and are fitting her in tomorrow... but I'm concerned that I will be told to bring her back for tests, or some other reason will be given which will delay a diagnoses and consequent treatment further. I'm worried about what all this is doing to her internally; she really isn't well and has spent all day today in bed. She finds it hard to breathe in deeply without it hurting her.
Any advice input you could give would be greatly appreciated.
Thank you and God bless~
I hate that you are in need of us but I am glad that you found us. Sadly your story is one we hear way too often. So many people go months or years without diagnoses because of what you are going though. Your daughter is very lucky to have you as an advocate.
The first thing that I would do is put together a history of symptoms and what she has gone through. If you do not have copies of all of her blood results then I would get them. For future reference you need to get everything that your doctor has on her. Once you have the list of tests I suggest that you put a page together of all of the results that are not normal (not just the number of hers results but the range of normal as well because ever lab uses different criteria). These two papers, the one page history and the blood results you need to make several copies of and take them with you whenever you go to a doctor. Don't give that to the nurse. If you do it just gets lost in the file. Hold on to them and hand them directly to the doctor when he/she comes in.
Keep doing what you are doing! You are being an advocate for your daughter and that is exactly what she needs! Just remember that we are here for you as you travel down this difficult road. I hop
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What is lupus?
Lupus is a chronic disease that can have a serious and widespread effect on the body including the skin, joints, muscles, and other organs. However, in many cases, lupus is a mild disease that can be successfully controlled with regular medical care. About 1.5 million Americans have lupus, and about 90 percent of people with lupus are women, according to the Lupus Foundation of America (Source: LFA).
Lupus is an autoimmune disease. Normally, your immune system can tell the difference between your own tissues and foreign invaders, such as bacteria or viruses. The immune system produces antibodies that target bacteria, viruses, and other abnormal substances for destruction. But in an autoimmune disease, the body’s immune system mistakes healthy tissues and organs as dangerous invaders in the body and attacks them. This results in chronic inflammation that can eventually damage and destroy the affected tissues and organs.
There are four types of lupus. They include:
•Discoid lupus erythematosus affects the skin. Discoid lupus is also known as cutaneous lupus.
•Drug-induced lupus erythematosus occurs as a side effect of some drugs, such as beta blockers, which are commonly used to treat heart disease and hypertension.
•Neonatal lupus erythematosus is a rare form of lupus in newborn babies whose mothers have lupus, which can cause problems at birth or a serious heart defect in rare cases.
•Systemic lupus erythematosus causes inflammation in multiple organs and body systems.
The onset of lupus often occurs in young adulthood through middle age. Common lupus symptoms include joint pain; extreme fatigue; headaches; swelling of the legs, feet, hands and face; hair loss; and a butterfly-shaped rash across the bridge of the nose. However, in many cases, lupus is a mild disease characterized by periodic episodes of some of these symptoms. Seeking regular medical care and following your treatment plan may help reduce the risk of serious complications of lupus.
Hi Terry and Tgal,
Thanks so much for your advice and support. Thanks, also, for the reminder about writing the list of symptoms. As it takes so long for a diagnoses, the much needed treatment is delayed and this is my main concern with my daughter.
It's encouraging to know that there is a supportive online community, though, and I'm glad I've found you!
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I'm glad me and tgal was able to help and keeping records like tgal (Mari) said goes a long way besides.
I just hope that when blood tests are done that something shows to what's causing your daughter to feel so ill and you've come to the right place for support and venturing through the threads you'll learn so much from member's.
Any time you need to chat or vent just come on as there's always someone on 24/7.
Hugs Terry xxx
Last edited by Peridot20_Gem; 07-04-2011 at 05:32 PM.
Welcome to the forums Unfortunately, i'm undiagnosed as well, so I can't really help too much with the medical stuff, but I would also really recommend writing down any questions or concerns that you have. Don't hesitate to make sure that the doctor knows that this is serious and you need to get something done about it. I know that when dealing with doctors, i've been too timid and let one of my doctors give up and just tell me it was stress and not a big deal - when I was too sick to even function very well.
Fortunately, you don't seem like you'll have that problem, since you did insist to check for autoimmune, which was very smart of you.
Also, try to be as straightforward and insistent as possible. I know that this sounds bad, but sometimes it's like if you give them any leeway or any chance to misunderstand you or shrug you off, they'll take it.
On top of keeping a record of symptoms or a list, try to pick out which symptoms are the worst or affecting her the most. Sometimes keeping a list of all the symptoms she's ever had, even barely, can be a hindrance and lead some people to think that you're complaining instead of trying to give an accurate account.
Sorry I can't help much, I'm sorry to hear about your daughter, but it's a good thing she's got someone like you to be there with her and make sure everything goes smoothly.
i hurts us as parents to see our children suffer.
i have 2 children who also have health issues.
the people before me have given some good advice.
keep your lists, and photos (of the problems).
please remember that a doctor has trained for years to be where he is.
sometimes a little diplomacy goes a long way.
be assertive though, youare there to make sure your daughter gets the care she needs.
i will be thinking of you, and waiting to hear how things progress.
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Thanks again! Terry, it's good that there is a place like this where people can come and vent anytime.
Elo, it must be hard to be undiagnosed and still feel as awful as I'm sure you must at times.
I was sorry to hear that you had 2 of yours not well, Steve.
Today wasn't that bad; they have done further blood test such as anti dsDNA and anti sm and some others specific for Lupus. I will know the results in about a week's time.
My daughter has been given an appt for 2 weeks' time to see a consultant, it will be brought forward if any of the results are positive. Including the repeat of the ANA.
I think it's fair enough as I want to be double sure myself before starting her on lifetime treatment of steroids etc... I just see her so unwell and wish they would get to the bottom of it soon...
Hope you're not having too bad a day today... there really needs to be a lot more acknowlegement and awareness of this disease... not many people seem to know what it is... even my mum (who's an SRN) has asked a work collegue for advice as her knowledge was fairly limited!
I've vented away loads of times mate while tears have been falling and the love and support is unbelieveable, you'll find that out more in time to come.
I am pleased they've done furthur tests on your daughter to see what's showing and if she is Lupus related the right meds and amounts can help her and your right this disease is'nt recognised enough and what makes we all so angry we can suffer badly but to outsiders who have'nt got a clue we look ok and healthy...this issue as been disgussed so many times.
I'm just pleased your daughter's day and your own as been abit better.
Love Terry xxx
the best possible outcome for your daughter, is full remmission without steroids.
it is possible.
the next best is where i am at now, lupus being controlled by drugs (not steroids).
i need my drugs every day, or i will go backwards really fast.
a lot of people survive very well without steroids.
i know this is a fear for a young developing body.
steroids may be needed only when her lupus is flaring, or it may be a daily requirement.
lupus treats us all as inderviduals, we are all effected differently, and react differently to the same medication.
i hope the tests come back in your favour. and the lupus is easily controlled.
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