Worried about my grandaughter

[Cookyboy1]

Thank you for replying. My granddaughter is 17 years old.

She’s from the age of 12 had periods of blackouts she has been diagnosed with cold urticaria three years ago but seems to be appearing as solar urticaria to.

She suffers with daily migraines and fatigue. She has a degenerative spine and has had occasions and severe asthma.

She’s had recent blood tests that show her white blood count is low and that her central Hemoglobin is low to. The ANCA bloods were taken and results as above. My daughter has had little help from her gp so is at a loss really any advice would be much appreciated. She’s just been put on steroids to improve her breathing, but is suffering with severe cramping of the stomach.

The bloods are all we have to go by at the minute.

Thank you again

[Spanielmadlady]

Hi.ive on steroids for my breathing for over 6 years.they can irritate the stomach and are best taken with food.im also prescribed lansoprazole to protect my stomach.bone protection is recommended if steroids are prescribed for longer than 3 months but not sure if this applies to younger patients.

I cant help regarding bloods but gps arnt very good at dealing with complex AI issues. Can you push addenbrooks for a full blood panel inc DS-DNA ANA immunoglobulins and compliments ? Is there any other consultant you can ask to be referred onto like rheumatology? I wish you luck and send big hugs 🤗 x

[Barnclown]

Hello cookboy: am glad you found us. I have been in care at Addenbrooke’s for over a decade and my lead joint clinics are immunology & rheumatology (both clinics have been consistently wonderful to me, & ,if anything, immunology is even more attentive that rheumatology). My other lead clinic there is gastroenterology, and I also attend several other clinics including neurosurgery first my degenerative spine conditions. I need the sort of tertiary care only such an institution can give, Cambridge University Addenbrooke’s Hospital is world leading , & not with out the usual probs of big historic institutions, but my feeling is that we are all lucky to be in care there - especially at a time like this

My feeling is that you can rely on Addenbrooke’s immunology to press ahead with the investigative work your daughter most needs in order to pursue convincing diagnosis & effective treatment & succeed in stabilising her condition as much as poss over time. I’m sure immunology will be running all the right blood tests including immunoglobulin panels, as they did & still do for me, but this does take time, because the science in cases like ours is very complicated - eg in my case, this took 5 years of close testing & monitoring by immunology....and because my illnesses overlap the expertise of rheumatology & immunology, these clinics do liaise as needed (often with my own active personal involvement) eg it was my lupus-expert rheumy who first referred me to immunology directly.

So, it’s really good you are supporting your granddaughter, and getting involved enough to understand as much of the detail involved in these investigations as possible. I’m 66 and my primary immune dysfunction & connective tissue disorder illnesses are infant onset...so I know how very much family support helps + how very much the active involvement of family in clinical matters counts...this activism can make all the difference, both for patient & medical team!

Hope you’ve asked for the specialist immunology nurse helpline contact details...they have always been very helpful to me, but I’m not sure which immunology team your daughter is under.

Hope you’ll keep us posted 🍀❤️🍀❤️ Coco

[Barnclown in reply to Barnclown]

PS forgot to check: hope her clinic has helped your granddaughter set up Addenbrooke’s Patient Portal (MyChart) access...cause you can also use this to contact her clinics, see her test results, keep track of appts etc etc) - Addenbrooke’s is one of the few UK hospitals with a Patient Portal. MyChart isn’t perfect (it’s not long been set up @ Addenbrooke’s...so there are inevitable ‘teething probs’ 😉)

[Jumper99]

Addenbrookes have a great reputation so I would expect them to know what they are doing.

But because so often Antiphospholipid Syndrome is missed or forgotten about I am going to mention it in view of the daily migraine and fatigue and even the degenerative spine.