6 year old daughter...possible Lupus

[Worriedmumst]

Morning, we are currently under a paediatrian who has just reffered us to an immunologist, my daughter has been ill on and off for the past 18 months..we seem to go round in a cycle of her seeming rundown it's usually starts with mouth uclers and temperature which lead on to her being so tired that she literally sleeps days away, she complains of abdo pain and headaches during this period and sore legs, but it never progresses into an infection or anything she just has they symptoms. If we dip her urine there is always protein and high WBC but they never grow if we send it away! this all last for about 5 weeks or more then she will perk back up for her to go back down hill a few months later. It's has got where it's affecting my other children as we are unable to go on days out and she will just be to tired to do anything and her school attendance has dropped dramatically! Blood test have been done that showed ANA negative but this one was done when she was having a good spell, we had some others done recently that showed ESR - 32 CRP- 31 her LDH was high and her PCV, MCV and MCH are low we are just waiting for more results to come back! I'm really hoping it's nothing but really want to get to the bottom of what's going on...any thoughts would be gratefully appreciated

[Barnclown]

Hello worriedmum & welcome

Am v glad you've found our forum...it has helped me hugely since 6 years ago when my gp first referred me to secondary care for rheumatology investigations into immune dysfunction & connective tissue disorders

I am 63 now and it has turned out that my lupus was actually diagnosed when I was an infant. My childhood signs & symptoms were similar to those you're describing....but, among other issues, I was also highly reactive to light & surrounding temperatures, plant & insect toxins. We think that in childhood my lupus was probably of the relapsing & remitting type. This made it easier for my mother & doctors to avoid telling me I had lupus. I moved to the uk @ 21 in the mid 1970s and the NHS did its best to care for me through emergencies & secondary diagnoses, but never spotted the systemic illness underlying most everything until I was in my mid 50s with signs & symptoms unmistakable. Meanwhile I led a mostly happy & fulfilling personal & professional life despite constantly being relatively poorly compared to my family, friends & colleagues. 🤗 Really, Truly! And if the NHS had been aware of my lupus diagnosis in the 1970s, life probably could've gone even better despite lupus

For sure, each person's version of immune dysfunction & connective tissue disorder is very individual. And the diagnosis + treatment process often takes time & patience. It's a collaboration between you & your doctors. Your involvement in your daughter's case will be invaluable. Referral to immunology is great: my immunology clinic chief works closely with my rheumatology connective tissue clinic chief to help me to better quality of life. 6 years into the diagnosis & treatment process, am feeling more stamina, resilience & comprehension and less pain than I've had since my 20s

Have you visited the Lupus UK website...it is full of excellent info...the downloadable publications are excellent. Here is the link:

lupusuk.org.uk/publications/

Many of us here find our blood test results have tended to be somewhat less helpful to the diagnosis process than clinical examination of our signs & symptoms + details of our medical history....yes, certain blood test results are needed to meet immunologic diagnostic criteria, but clinical criteria are crucial too...and some of this can be historical. There is such a thing as "incomplete lupus", as well as Mixed Connective Tissue Disorder & Undifferentiated Connective Tissue Disorder, which are vvvvv like lupus. And there are unusual cases like mine in which early onset Primary Immunodeficiency is simultaneous with early onset autoimmune conditions

if I were to suggest anything in terms of prep for your immunology consultation, it would be to:

- list any infections, their severity, persistence & recurrence + which treatments were & weren't effective

- list signs & symptoms' severity, persistence & recurrence by body system (skin, mouth, ENT, joints, muscles etc etc) + which treatments were & weren't effective including self-help

- list immediate family immune dysfunction & connective tissue disorder diagnoses

Whatever diagnosis you achieve, treatments are becoming increasingly effective. Also these conditions are becoming much better understood. And public awareness is increasing. So all of this is especially good for younger patients

Am sure you'll get great replies here. Please let us know how you & your daughter get on

Wishing you every best wish

🍀🍀🍀🍀 coco

PS do take good photos of any visual signs & symptoms, and bring these to consultations 😉

[Hidden]

Hi,

Has anyone ruled out periodic fever syndromes?

This is a good link, if you are in England then the centre mentioned in the article can be helpful. There is a paediatric Rheumatologist at Great Ormand Street Hospital called Prof Paul Brogan ( and his team ) who are used to investigating these types of symptoms as well.

amyloidosis.org.uk/fever-sy...

With the mouth ulcers Behcets syndrome should be considered as well. The most important thing diagnosis wise is seeing the most experienced Consultant you can.

[Hidden in reply to Hidden]

The link to Prof Brogan

gosh.nhs.uk/medical-informa...

[Chanpreet_Walia LUPUS UK]

Hi Worriedmumst,

As we are not medically qualified, it is not possible for us to comment on your daughter’s blood results. However, we do offer a free information pack that contains factsheets, guides and a list of helplines and LUPUS UK contacts which I hope will be of help to you: lupusuk.org.uk/request-info...

Please keep us updated, wishing you and your daughter all the best.