Dont you just love GP`s ? Took my 15 year old ..recently diagnosed with Lupus for an emergency appt yesterday , so didn`t see our usual Dr, Ellie is having hellish trouble with joint pain & lethargy, (been referred to Childrens Hospital in Newcastle Upon Tyne.. from the Rheumatology dept at Middlesborough..due to high white cell count ?!? ) Anyway this GP ,last night said she MUST get out of bed & ensure she goes to school in the mornings as `lying in bed all day really wont help` I asked how any people with Lupus had she ever met...no reply. Left before I really lost it.
So we await a `emergency ` appt to Newcastle. Sorry not a question as such I know just had to `bawl` to someone...she now feels even guiltier than she allready did about missing so much school...who incidenally have been superb. Any other younger sufferers with any advice?
xx
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Northerner123
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I was misdiagnosed as a young teen with chronic fatigue syndrome - they didn't even test me for Lupus at all. They said it was all in my head! I ended up missing so much school that the school asked me to leave, I was then sent to a part time unit for naughty kids and truants, there was only the chance of being entered into the lowest GCSEs despite me being academically gifted (and the kids were scary!)... it was horrible! I ended up skipping my GCSEs - I did them later as an adult after I had three children, and then I did A level maths, and I'm now doing a degree (2nd year, age 25)
It's important to concentrate on the specialists appointment and keeping that good relationship with school - sod the GPs!! I'm pretty angry with mine too at the moment, they seem so incredibly clueless regarding autoimmune conditions. Just make sure your daughter gets the meds she needs from the specialist and hopefully she can get back to school and start living life again it's good that it's an emergency appointment!
Hello. I'm not a young sufferer but I'm impressed..Good on you for questioning the GP, and what a great question. I completely flummoxed the last emergency Dr who came out to me!
You could always try A&E, and a week day would mean Ellie's rhuemy ( or any rhuemy if she doesn't have one yet) could be informed...just an idea!
I'm glad to hear school is being OK, is Ellie doing her GCSE's? Bless her, 15 is young to have the pressure of school work and no energy. School may be willing to have work sent home if that's appropriate for Ellie.
My current GP is great - on the ball, but its the nurses and even the junior docs at the local hospital who seem to be a problem. When we took her to the paed ward a couple of years ago a doctor said that she couldn't have Lupus as its not known in children of parents who have Lupus. It was only a consultant who came along that said she was confirmed Lupus. It certainly has been a battle and then she has A Levls and she gets so stressed and then this gets me down and then I don't feel well etc. Thankful for this site!!!
My daughter was diagnosed last year at 19. she had to drop out of uni. All I can say is make sure she feels well enough to attend school. She knows her own body and if she is too tired to attend then she should stay in bed. Doctors don't know everything!
I hope she gets the right medication soon. Good luck
I have had lupus for 20 years plus. As a young adult it was confusing and difficult to express what I was experiencing as it was new to me and communication skills were not yet fully formed.
I would encourage Ellie to express within a journal format (keep a record dates/ symptoms/etc). Find her own words to express the sensations/feelings of her lupus experience. If she is artistic draw it. I used to draw an elephant sitting on top of me and a snake coiled around my throat as one of my symptoms. It can be very cathartic giving the patient perceived control over the uncontrollable. This self monitoring can help her (and you) to accurately inform others / medical professionals what she endures. Helping them to pin point / identify the problem zone to further assist her gaining the proper protocol / treatment / Rx what ever necessary to calm the flare up and return confidence to her well being.
It can be sorted. It can ... with her (and your) patience to explain details and with the medical professionals willingness to listen thereby decipher what she (and you) have revealed to them. The path to better management begins with communication.
Best advice to your daughter : Never stop attempting to communicate. Find a Specialist who will LISTEN.
On that note ... when in need best to use your (daughter's) SPECIALIST (who hopefully is stellar & with full knowledge of lupus potential/probably issues - if not, get a different Specialist).
GPs are fine for the average lot; but patients with lupus are unique with unique symptoms / side effects / over the top flare ups et al. Lupus can go from bad to severe to fatal in a blink. A lupus flare up ignored can be deadly. There is NO GUILT to be had. Ellie you have lupus, it is a bother, but it is no fault of yours. It just is. Deal with your symptoms one by one. Rest when you must. Get through school at YOUR PACE. There are no hard and fast rules here. You are unique. You are NOT just your lupus. Do NOT allow one b*rk of a Doctor get you down feeling low. Rest recharge reboot move on.
You know your daughter ... is she slumming about in bed avoiding school ??? Certainly not. She has lupus. Rest sometimes is the only, if not the best, option.
The GP you encountered was not only un-informed; but dangerously giving bad (possibly fatal to your daughter) advise. Most negligent on the GPs part. Can you say malpractice? What ever happened to 'first do no harm'?
Just because a person has on a 'white coat' does not mean they are omnipotent. Doctors are not different than any other profession - there are good/brilliant and bad/incompetent. Doctors work for you - not the other way around. Always remember that.
You are a stellar mum. Keep standing up for your daughter until she can stand up for herself. By your example she will be stronger.
Lupus will be lupus. I hope Ellie (and you) can develop management coping skills to best cope with her symptoms, Rxs, and treatments to come.
Please take care both of you. If Ellie wishes to chatter with me I am a good listener. This is what this blog is all about ... sharing helping supporting caring enduring.
nouska, i gotta say: thank you from bottom of my heart for your reply! i've been coping with lupus since i was an infant (diagnosed then and when i was a teen, but my mother never told me, and i left home at 21 for another country (the uk) with no med notes etc so over here the nhs has been treating me without figuring out lupus has been underlying my 101 probs until last year as i turned 58).
reading your reply feels like meeting the mother i wish i'd had (my 90 yr old mother & i are pretty much ok now, but it hasn't been easy getting here...i am also a DES daughter which could be why i have lupus possibly so of course she feels bad about that too) and basically i feel as if i've spent the past year since my lupus diagnosis learning more about how to mother myself....and your reply is brilliant advice to me, as both a lupus patient and an adult responsible for looking after myself. many thanks: i am going to print your reply out and keep it where i can read it over at regular intervals!
What an uncaring GP!! They have no idea! I had similar with a paediatrician 2 years ago with my son who is now 17. I ended up home educating him so we went by how he felt. He has now gone on to college and is studying for his "A" levels. He is going to do them over 3 years, 2 at a time for less pressure. What I learnt from home educating is life is not a rush. He hasn't got a diagnosis yet - positive ANA 3 times so far. The paediatrician said he was overweight, so he lost 3 stone!! We thought that was a bit far-fetched at the time as the pains were severe. He is slim and guess what the pains and positive ANA are still here. He too gets pains and days when he is totally wiped out and sleeps for 14 hours. Those days he doesn't go into college-it just isn't possible. As I have lupus I totally understand!! He is now waiting for a Rheumy appointment at the end of the month. I hope Ellie gets the right meds soon. Take care x
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it's good that it's an emergency appointment!
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