Should I insist on a referral to investigate sle?

Will try to cut this short. My son was born with what the health visitor described as "baby acne" (apparently common amongst boys). It became infected and needed antibiotic ointment. He was always sicky. Had a huge inflamed belly button which eventually went down. At 1yr old he developed a rash on one cheek that spread to the other cheek and the chemist said it wad slapped cheek syndrome however it did spread slightly over his nose too. A while after that he developed leg pains that would come and go and were mostly at night so I left it and just massaged him regularly assuming it was growing pains. At age 3 his health went downhill. He developed quite serious asthma, had regular steroids, allergies, eczema and was always ill and his leg pains seemed worse. I noticed his foot turned in and he appeared lazy. He had a swollen lymphnode which didn't go away so it was surgically removed and analysed and blood tests which showed low iron levels, low c4 and a slightly positive ANA.

The doc said this was typical of lupus and tried to refer him to a reumatologist. But the referral was turned down due to not enough evidence to suggest lupus!

Since the iron supplements he has improved but still gets leg pains and the orthotics have confirmed he stands with pes planus. (Internal hip rotation and leg, creating an in-toeing gait and weakness in one leg). I have had fatigue, and breathing problems all my life and now have Raynauds Syndrome but clear blood tests. His new doctor said his latest blood tests were nothing to worry about and that she is not concerned so I'm guessing he is now going to be discharged but I am concerned that whatever caused his iron deficiancy is still there! Should I insist on a referral to a specialist?

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  • How old is your son now? I think it is always worth seeking answers if you have symptoms that aren't explained. If he manages to get a diagnosis, they may be able to treat him better and provide a better quality of life. Depending on his age and whereabouts in the country you are, I may be able to recommend the best specialists to see.

  • Hi Paul, I live in Barnet, Hertfordshire and saw an apparently disinterested/minimising consultant at Barnet hospital. Would it be possible for you to recommend a good rheumatologist as I plan to seek second opinion in respect of positive test for lupus.

    Many thanks.

  • I would recommend getting referred to one of the lupus centres in London if you're able to travel there? Both St Thomas' and UCLH have great lupus clinics. UCLH may have a slightly shorter waiting list though.

  • Fabulous. Thank you very much.

  • Hi Paul and thank you for the reply.

    My son has just turned 5.

    We saw a new paediatrician yesterday who said that the latest blood test showed up just slightly abnormal in that his c3 levels were slightly low but it appears he is no longer iron deficiant and his ANA is no longer showing up positive (I'm assuming), and (I'm assuming) his c4 levels are nolonger low as she said the rest of the blood results were better than they had been since he has had iron supplements. And so she has discharged him. Even though he still has leg problems and there was no explanation as to why he became anaemic and very ill in the first place because he eats very healthily. Loves greens and red meat etc.

    I'm now concerned that whatever caused his anaemia leg pains, headaches, sickness etc etc will come back and he will become anaemic again because it doesn't seem like the underlying cause has been dealt with or investigated enough.

  • Where abouts in the country to do you live? Feel free to send me a private message or email me at paul@lupusuk.org.uk if you prefer.

  • Thank you paul.

    We live in Warwickshire. But I would travel anywhere to get him better. Have thought about trying to get copies of all of his blood tests along with his orthotics report and getting a second opinion. Just don't know where to begin. I can't just leave it though havinv read how serious the condition can be for young children. I have read that it can be life threatening so don not understand why they have been so quick to discharge him.

  • OK. I would probably say that the best place for somebody of his age would be Alder Hey Children's Hospital in Liverpool. They have a lupus clinic led by Prof Michael Beresford. I know it is quite a long way to travel, but there isn't really anybody with more expertise on juvenile lupus in the UK. It is important that your son has an explanation for his symptoms, especially if it is lupus and it is important that he is monitored and treated correctly.

  • Hi - I just want to say as another mum I wouldn't be able to rest either. I would certainly ask for all copies of blood test results to make comparable's, this will at least build up a picture. The Drs usually charge me £1.20 per copy they may or may not do this in your area - but just so your prepared. Do your research from home and you can ask for a private referral and still get looped back into the NHS - which is what I have done. As for blood tests - mine aren't showing much at all - I have bilateral arthralgia, levido reticularis, I've had bakers cyst rupture twice in one year, hair loss, visual migraines, night sweats, ulcers, and ended up in hospital in April - I have the same symptoms as everyone here pretty much and neurological ones too, I'm on the meds for lupus already, I'm finally being referred to St Thomas and I will keep going because nobody would make this stuff up!! So I guess what I'm saying is believe in yourself and follow your heart, as for blood tests etc - Pah!!! I do still sometimes have self doubt, but have visual symptoms and take photos and keep a diary of everything. I wish you every luck, my family are the centre of my world so I know how you must be feeling - we as adults have found the ongoing battle of diagnosis a struggle, but as parents we have to fight for our kids also. Stay strong - sending well wishes xx Jo

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