I really need some advice about my daughter......

[purple-lou]

My daughter is 12.She has a long history of joint pain and swelling.We have never had much joy from the hospital.She has had so many lots of blood taken that she now has a severe needle phobia.She has learnt to live with pain in her hips and back.

Recently,she has had really bad problems with her left foot and right hand.Her foot is swollen, mainly on her toes and they are sometimes black, red or blue. They are very painful. Sometimes the pain spreads to her ankle.

Her fingers are swollen on the joints.

I took her to our gp, who immediatly sent us to a and e. This is where the problems started.She refused to have bloods taken and was very upset. She is a very shy girl and hates to draw attention to herself. Seeing her cry made me realise how hard things were for her.

She was referred to paediatrics. On the day of the appointment, she refused to go. I tried everything, but she wouldnt go. She was so frightened.

Today, I had a call from the hospital saying they were concerned that she hadnt attended and that a different doctor had looked at her xray that was done in a and e. They expressed concern, stating that " lines on the bone were a concern". She is now completely beside herself because she has to go to the hospital tomorrow [ Saturday].She is refusing to go. I dont know what to do.I cant force her to go, but I know that she has to.

She also has had a rash on her face recently and is off school every term with overwhelming fatigue and flu like symptoms.

I have Lupus and her brother has R.A.

Has anyone got any ideas?

Thankyou for reading this xxx

[Danielle2419]

Im 18 and was young myself getting diagnosed, i dont have a daughter but when i was going through lupus it was hard for all to see my mum, my fiance and others i no. You no when i was diagnosed they was taking repeat bloods i used to get sick i would hide in the hospital shower and say i was taking a shower or bath. I tell you something though getting a daignosis is the end of it in my eyes its a solution to the problem that wont get rid of it but will control it. You no getting her to the hospital is of general importance if shes showing the symptoms of lupus. As a mum yourself forcing her to go is of great importance she may hate you but forgive when she finds how easy her life will be in the long run trust me i wish i could talk and prompt her to go but i guess thats to you. Im shy myself utterly shy and have been though alot but suffering for a long eriod of time then getting the diagnosis was a relief in its self and iv come out on top

I have Lupus, Antiphospholipid syndrome, Anemia, Rhuematoid A., Low vitamin D its hard but i was told by my family gp after the diagnosis not prompting to get a say and seeing my cause would of cost me my life i was full blown in protein leaking from my kidneys, blood clot forming on the lungs, UTI and chest infection. Please make her go she has to!!!!!

Danielle :~

[purple-lou in reply to Danielle2419]

Thanks for your advice. Xx

[Nightjar]

Just to say I'm thinking of you and hope your daughter will manage and be OK with it all. Beaming love and good thoughts for her and all around her, including you. <3 xxx

[purple-lou in reply to Nightjar]

Thankyou xx

[hessy]

Hope you manage todays appt. Went through exactly the same with my daughter, only a few of us will understand this situation,its so hard. Hessy

[purple-lou in reply to hessy]

Thankyou. It is hard to make people understand xx

[Britchick42]

HI , Im really sorry about your daughter. It seems to be quite a problem world wide where theres always so many issues before diagnosis happens.

Firstly you have to find away to get yoru daughter there. You have to be cruel to be kind . Can you promise her a treat afterwards ? Late nights every weekend for a month or anything you can devise that would fit for your family. Can you explain to her that they have finally found something and this time they can give her a diagnosis and medication so that things will turn around for her ? This whole issue is brutal for us as parents and it is heartbreaking but somehwere deep down inside you have to do this, and get really strict with her.

I know i sound harsh , but i have been through it and then some. I have lived abroad for a bit and came back to Great Ormond street and then they tried to fob me off saying shes a bit plump and probably has irritable bowel as well as recurrent ovarian cysts, So we wasted all our savings on flying back to the UK to get that . WE did discover that she has Anti phospho lipid syndrome , but i didnt give up she got a lot worse with back pain stomach pain hip pain . I then foudn ou about a German paediatric rheumatologist who wrapped up 2 years of heart ache and misery in one appointment. She told us her suspsicions did a load of ultra sounds to every joint, then organised an MRI scan . It showed my daughter 13 had sacroilitis and subchondral erosions in her iliac because the inflamatory process was allowed to go on so long !!! My daughter has a strong pain tolerance but when it comes to blood draws ..... she is a different person! Turns out all these issues were the result of Juvenile spondarthritis ! She has been on salazopyrine for 6 weeks stepping up the dose, and finally her crp is dropping her Esr is dropping and all her bloods are slowly moving where as before they were rising btu they couldnt see why . Juevenile spond arthritis is an auto immune disorder , i myself have SLE Sjorgrens, Hashimotos and osteo , so things can turn up that are in the auto immune family.

I wish you and your daughter the very best, as tiring as it becomes you must get her there by nice or nasty means ... not too nasty lol just be strict what about you can arrange for them to put some emla on before get them to write youa script and get it before you leave the house you apply it at home and then when you arrive theres less waiting around and less time for the anxiety to kick in .

Hope this isnt too long i just thought if i show you the whole picture it may give you hope ...

[purple-lou in reply to Britchick42]

Thankyou for your advice xx

[helenfirebird]

I really feel for you. My daughter, who is also 12, is having blood tests on Monday for constant pains, viruses, joint problems and fatigue (although no where near as severe as your daughter) and one test is ANA as I am a Lupus sufferer and have my suspicions that she may have similar problems. I really hope you can get her to the hospital, for both your sakes. And I will try and be here if you need to share to someone with a similar problem.

[purple-lou in reply to helenfirebird]

Thankyou for your kind words xx

[letslaugh63 in reply to purple-lou]

Hi purple-lou can't begin to imagine what your going through but thinking of you and your daughter x

[purple-lou in reply to letslaugh63]

Thankyou xx

[nicky1234]

hi purple-lou

i had the same the problems with daughter, i had to bribe with mars bars and a can of pepsi

it did not always work. she was terrified of needles

what the problem was she did not want to know she had an illness, as that then meant she was gonna be ill and it was real if she was then given a name for it.

this went on till she was about 20, then she decieded of her own her back to visit the doc

first test they did cause i have lupus was test her

it came back possitive. now i have problems getting her to take the meds she dont live at home now she is 25.

she is a strong charator and i really had to step up and tell her she is going the doc/hosi.

when in the hosi they got the neddle out she would say child abuse the nurses/docs really had a hard time with her, it may have took over an hour for them talking to her for her to have that needle but 8 times out 10 she would have it in the end.

ps now she dont like needles but she dont demand a lollypop of them.

she just gets it over with now.

you have to tell your daughter if every thing else fails, that she is going to appointment.

not nasty just firm. and tell the nurse etc that daughter is scared of the needles.

good luck hun.