Any parents supporting children recently diagnosed with Lupus?

[Scout68]

Hello, I am new in here though i have looked in in the recent past as the worried mum of a !5 year old daughter who was diagnosed in Sept 2014 with Mixed Connective Tissue Disease. She is now being treated for SLE. It has been a difficult year....is anyone else in a similar situation supporting a young person through this...or having themselves experienced this as a child???

[EOLHPC]

Hello scout & welcome

I'm glad you've found our wonderful forum

Over the years there have been other mothers caring for youngsters with immune dysfunction here...and I try to reply when they post

Forgive me, but I just replied to a somewhat similar ? from hunnybun here, so am going to sort of repeat some of that in this reply:

I'm 63 and was diagnosed quickly as an infant in the states. My mother & doctors kept the diagnosis secret (long story) while I was still living at home and in their care. I just thought I was more poorly than other kids. I managed to take 2 university degrees by conscientious lifestyle techniques (diet, exercise, meditation, pacing all activities & getting lots of sleep)

when I permanently moved to the uk at 21, the NHS took over my care unaware I'd been diagnosed with lupus all those years ago. I got married & had a successful career thanks to a wonderful husband & boss. The NHS did its best for me: diagnosing & treating lots of secondary immune dysfunction related conditions and saving my life in emergencies for nearly 40 years...but never spotting the lupus underlying almost all my health issues. Doctors just said all the persistent & recurring health issues were "normal", and mainly related to a fall from height onto my head at 7. My husband didn't swallow that theory. But I did.

By my early 50s, the cumulative multisystem debilitation, caused by lack of daily systemic Lupus meds for decades, was so obvious that I was referred to a brilliant lupus expert rheumatologist who figured my lupus out based on history & physical exam and started the treatment process right away. My blood results proved her right: these meet official immunologic diagnostic criteria, although I'm seroneg.

I'm now 6 years into the refinement of my diagnoses generally, and feeling less pain + more stamina & resilience than I have since my early 20s...all thanks to conscientious lifestyle management + my daily combined therapy oral lupus meds + great treatment plans from all my multisystem clinics including immunology. And my husband is delighted: he has been proven right...this has all been about a lot more than a fall from height into my head at 7 😉

I hope something in there helps

It will be great if you let us know how you & your daughter are getting on as the diagnostic & treatment process proceeds...there are others here with MCTD....many think it is vvvv similar to lupus

🍀🍀🍀🍀 coco

[Scout68 in reply to EOLHPC]

Hello and thankyou for sharing your interesting and convoluted journey with me.!

My daughter was diagnosed with MCTD aged 14, but now symptoms are suggesting SLE which is what she is being treated for.

I was very reluctant for her to take medications and am reassured to hear that meds have played a part for you in managing your disease and maintaining a happy and fulfilling life.

We are moving towards refining the medications which keep her well..without too many side effects...have a wonderful team in the rheumatology unit...and are appreciative of the support of this forum too.

Best Wishes to you, we will keep you posted

[EOLHPC in reply to Scout68]

😂 so right: convoluted is the word for it.

I totally wish you & your daughter weren't having to live this illness together...but, gosh, the way you're doing this together seems v special to me. If my poor mother had felt able to be open and proactive about my illness, maybe I'd have avoided quite so much cumulative damage.

Because our immune dysfunction is systemic, we tend to be seen in a number of different multisystem clinics. Coordinating all this is complicated & demanding. And it's unusual for our GPs to actually be able to keep track of everything involved. So we try our best to coordinate our own care...and to be our own patient advocates. When I meet a mother like you who is actively partnering their youngster, I think: this is THE way to go...and more power to you!

You've got great replies here...I hope you're feeling connected in a good way....and more confident about feeling your way forward

Take care 🍀🍀🍀🍀

[Scout68 in reply to EOLHPC]

Thankyou Barnclown, I am really appreciative of your positive feedback and am feeling comforted in this wise forum....it can be such an isolating experience!

I am sorry that your mother did not feel able to share your diagnosis with you...but I am pleased that you now have the knowledge of what it is that you need to battle, so are able to equip yourself accordingly!!!

We have been fortunate in following a pretty swift path to my daughters diagnosis. It was an unpleasant surprise, but we try to focus on managing the symptoms which seems less daunting! ...

The process is difficult...even knowing what is relevant to mention to the consultant as the symptoms are so diverse....I find that hard enough myself as an adult!

......I have received great support and advise in here...which will be hugely useful to me in supporting my daughter....Thankyou X

[EOLHPC in reply to Scout68]

Beautiful words...I think you are someone v special. You're quick on the uptake, I'm sure. And you'll gain confidence as the months pass.

My experience is that at first we continue to feel rather overcome by how much we don't know about lupus...but, in time, it dawns on us that (gosh) we actually are beginning to know quite a lot about our own particular version of lupus (in your case, your daughter's)

At that point really good doctors are v grateful & pleased...because collaboration between patient & doctor can become even more fruitful & efficient

🍀😘🍀😘

[Bronagh2015]

Hello and welcome, I'm sorry your daughter is going through such a difficult time, I would strongly recommend you contact Lupus UK, they will be able to forward you lots of information about young people and Lupus which will really help your daughter and yourself. Also they can see if there are any support groups in your area which she could attend or contact through a FB page. Hope this is of some help. Bronagh

[Scout68 in reply to Bronagh2015]

Thankyou Bronagh,

I have found Lupus UK publications really helpful, as like most people knew next to nothing able this disease until my daughter was diagnosed. I will look into your suggestion of finding a support group too!

[Magzy]

Hi, I am a mum of a 15yrs daughter. Diagnosed with SLE Sept 2016, we have been in n out of hospital ever since. It went to her brain, she having lots of flares, missing lots of school and has become very anxious and teary. She chose not to tell school friends altho her teachers needed to know, we have just got back from another week in hospital. Dr suggested sorting out phasing her back to school as feels this adds to her stress, therefore not helping with flares. I am trying to talk her into allowing an assembly at school so people are aware and can understand and help her instead of giving her grief calling her attention seeking etc... She worries that it would make things worse. It's been so hard for her and as her mum I just want her to be happy, accept her condition and help that's offered. Is your daughter the same age??, I wander how sue has dealt with school etc??. Sending you both Lots of hugs. We need them xx

[Scout68 in reply to Magzy]

Lots of hugs to you both too! ..and thank you for your reply.

I do hope that your daughter is feeling better since her stay in hospital?

It is such a difficult illness to understand, explain and to live with...but I would like to reassure you that my daughter, 15 months from diagnosis has accepted her illness and has found medications that work for her and make her life more manageable.

She did choose to tell her friends from the beginning which has been helpful as they are supportive and accept when she has to drop out of plans at short notice etc...I think it is so little known and understood.

Lupus UK has a really useful leaflet written for teachers which I chose to email direct to her subject teachers. The only teachers who have made my daughter upset have been the PE teachers, so I have arranged for her to no longer do PE!

I find taking her in at first break is helpful if she is tired and in pain. I think that seeing other people is helpful though I appreciate this is difficult if she is not feeling understood by her friends...has she a close friend that she could confide in?

I do hope that you have a good supportive team at your local hospital??? I have found that it has got easier accepting support and advice as time passes....at first just felt "What are we doing here??"...it wasn't supposed to be like this was it?..but our daughters will be happy and successful because they have us behind them!!

We find it helps to plan ahead a bit more than we used to..little things to look forward to when the going gets tough!....I am a single parent, and I must also say that this rotten illness has bought us very close!!

Thinking of you and sure we can support each other!!!xxxxx

[Scout68 in reply to Scout68]

Dear Magzy,

Just wanted to get back in touch and check that you and your daughter are ok?...I have been thinking of you both.XX

With hugs for you both, from the two of us.

XXXX

[SjogiBear]

Hi Scout 68

Sorry to hear that your daughter is struggling with SLE at the moment - it's really hard being a teenager these days without the added complication of a chronic disease.

Although I am now 50, I got ill back in my mid-teens as well. Although I had always been a sickly child when quite little (lots of problems with swollen glands and tonsillitis) I got really ill when I was 16. This first manifested itself as joint problems - pain and swelling with a fever and rash over parts of my body. In a matter of weeks this had turned into severe anaemia and my kidneys and liver eventually did fail and I spent a long time in hospital. Luckily, this acute part of the disease did resolve in time and after high doses of steroids and aspirin (this was back in the 80s). Like Coco, I went on to do well in my academic studies (I had to repeat a year at school) and my disease pretty much went into remission (with odd health problems along the way) until it ramped up again as I turned 40 (and I was diagnosed with sjogrens).

I think it would be a really good idea for your daughter to get to know other young people who cope with chronic illness - try to find positive examples if you can - Lupus UK might be able to give you some good advice here. When I was ill I was deemed an 'oddity' as all the people on the ward I was on were old people with rheumatism! I felt quite alone and never met any other people 'like me'. Things are better now with the Internet - see if there are any blogs she could read. I desperately wanted to be normal and hated being ill - it made me really angry which I suppose helped me focus on the battle. I can remember having my birthday in hopsital and I refused to acknowledge it and was quite a brat - the nurses produced a cake for me and I made them take it away! It did make me feel ugly and unattractive too so please do whatever you can to boost your daughter's self esteem.

I know I am old and ancient now but please do feel free to ask any other questions you might have whatever they may be! xxx

[Scout68 in reply to SjogiBear]

Hello Sjogibear!

Thankyou so much for taking the time to share your memories of being a teen with this illness ,and how it made you feel. You have created a very vivid image of yourself in a strop and refusing your cake!..very understandable!

My daughter was a very well child, rarely got sick atall....so all very unexpected! Raynauds was her initial symptom followed by a lot of joint pains,swelling etc...diagnosed with MCTD initially with RA symptoms predominantly. ..now being treated as SLE which symptoms most resemble.

Having always been pretty anti medication for anything...have had to change my views and be grateful that we are lucky enough to live in an age when we are fortunate to have access to them and the relief they bring! The medication journey has been arduous for her..with certain meds certainly not being right for her...but we seem to have almost sorted her unique "cocktail"...just need to get rid of her continual headaches and residual joint pains.

Thanks for letting me know how you felt as a teen on steroids...we are trying hard to eliminate them from her "cocktail"! This year she will have her prom and I will remember your comments when she reminds me that she will be needing a spray tan, nails, make up etc!!!...you will be her BFF!

It was so encouraging to hear that you are enjoying your life and have had a long period relatively symptom free...how have you managed that?

My daughter has many plans. She would like to travel, would love to have a family some day....and of course I want her to have a happy and fulfilled life, as it seems you have. Ancient? I think not...I am 48, we have many years yet!!!

I think it would be good for my daughter to get to know someone of a similar age with similar challenges...but being a teen am biding my time until she suggests it!!!!

XXX

[SjogiBear]

Hi Scout68

Just read through your reply - you sound like a brilliant Mum - your teen might grump and grouse at you at times but you will be appreciated in the long run (At least this is what I tell myself - my son has just turned 17 and my daughter 11 . . . I think we're approaching full hormones!)

I just wanted to add that like you I have always been unsure and suspicious of big pharma and drugs in general and even now I question everything. I do take the cocktail of drugs I have been given although sometimes I do want to conduct my own investigations before I will start something - I am also not keen to take something indefinitely unless I am confident that I can accept the risk (so for example I do take hydroxychloroquine, aspirin and carbocisteine at the moment but I have turned down immunosuppressants for now as at this particular stage I am at, I don't feel I actually need something that powerful - however, they were offered - this would have been different if they had been offered back in my teens when I was hit most severely.)

I am also very interested in 'functional medicine' and I do feel that we can help ourselves sometimes by following a particular diet or taking certain supplements - this might be worth investigating in addition to taking the usual drugs to see if it will help - for example, gluten aggravates everything for me and I am better not including it in my diet and I take high dose Omega 3 as I do find that helps with my skin and eye dryness. I also think that if we do certain things such as changing diet etc, it gives us back some sense of control. I try to limit too many artifical additives and chemicals too in body products and foods - we get an organic box - I have no evidence that this has improved my symptoms at all I'm afraid but it has probably helped my paranoia!

I think having a prom to look forward to will give your daughter something nice to focus on. I can remember that being on pred made me feel so bloated - I had the classic 'moon face' for ages. Has she got some good friends who can help her too?

Apparently my parents were told that I shouldn't have children (!!!!) back in the day but they didn't pass this information on to me at all. I had no problems having my son although I did get pre-eclampsia which I think can be typical and had him very slightly early. Afterwards I had two miscarriages in close succession and then had great problems getting pregnant again - I on;y managed to get pregnant once more when I had my daughter - I was supported by the Recurrent Miscarriage Clinic at St Mary's Hospital as they discovered that this was all connected with my lupus and I also had antiphospholipid antibody syndrome - this is treatable and they can often help maintain a pregnancy - I only needed to take aspirin and went on to have a full-term pregnancy, again with pre-eclampsia though. So your daughter should be able to go on and do whatever she wants to in life - I studied modern languages myself and did live in Germany for a year and studied a summer in what was still then the Soviet Union so travel is perfectly possible too

BTW I think it was just down to chance that I had a long time without symptoms - my disease obviously flares up around times of hormonal upheaval i.e. puberty and perimenopause!

Take care xxx

[Scout68 in reply to SjogiBear]

Hi Sjogibear,

Thankyou so much for your reply....it is so helpful to hear of your journey and experiences. We have much in common, not least the houseful of hormones!!!...my son has just turned 18 and my daughter will be 16 next week!!

On a positive note...we have the prom dress! I did not relish the prospect , but we had a lovely time choosing it, and it now hangs with pride in her room as a daily reminder of good things to come!

Thankyou for sharing your experiences of studying and having children. My daughter has actually just had the APS blood test, as she has been suffering with constant headaches day and night. Fortunately that came back Normal. She has had to stop several medications to try and eliminate them as a cause of her headaches...Naproxen , Azathioprine and Nifedipine all stopped...and still her headache persists.

I notice that you are taking Hydroxychloroquine Sulphate and wondered if a change in the brand prescribed might be the cause?...long shot I know! She has an MRI scan head booked for 1 March, typically right in the middle of her gcse mock exams...clutching at straws maybe, but worth a try.

Quinoric is the brand that she has been recently taking..have you had that brand?

I am interested in the complimentary diet regime that you find helps..think this is something we still need to explore.

I hope that you are keeping well.

Take care too XX

[SjogiBear in reply to Scout68]

Just really quickly as we've just got back from a trip to parents (hard work!) and I'm really pleased to hear about the prom dress

Quinoric has a very bad reputation amongst those of us who take hydroxy - it can cause a lot of side effects and Lupus UK tend to suggest people try other brands. Plaquenil which was the original brand is no longer made but the same pharmaceutical company makes a very similar generic under the Zentiva label. Blackrock pharmaceuticals hydroxy is also considered to be OK by most people. If you put 'Quinoric' into the search box you will see lots of comments about it. I'm not sure about headaches being especially problematic with it but I do think it features on the side effects list. One other thing also to consider is that lupus itself is often associated with persistent headache:

lupusuk.org.uk/medical/nurs...

Hope all goes well with the MRI - never had one of those but know it can be quite scary. I would think it would be worth trying a different brand of hydroxy though - I don't know if you've got a good pharmacy who will get in different brands. I know Boots can be difficult - they would only supply Quinoric when I asked but luckily I have a friend in a local pharmacy and she gets in Zentiva for me. Have you got a rheumatology helpline at your hospital who you can also ring for advice - or speak to the consultant's secretary. x

[Scout68 in reply to SjogiBear]

Thankyou Sjogibear,

I have spoken to the pharmacist and my daughter is now taking the Blackrock brand. No change to her headache though as yet. I have read all the Quinoric links and not heard from anyone else, so am thinking that the Quinoric is not likely the cause.

She is not looking forward to the scan, especially as it is right in the midst of her mock GCSEs...

I have read the Lupus Uk info sheet and am beginning to think that the constant headache is sadly going to be a symptom of her illness .

Half term just beginning here, so at least she can catch up on sleep!

I really appreciate your advise,

Best Wishes XX