My daughter with lupas

[selinamcnair]

Hi my daughter was diagnosed with lupas last year can anyone help she has these symptoms that the specialist is baffled with after going to toilet as she walks away her bladder emptys and this is very stressful for her she's 14 and is really down also she cant stop eating even when her stomach is sore please help!

[Freckle1000]

Hi.

I don't know whether this will be relevant to your daughter, but when I was fifteen I was placed on high dose prednisolone. 60mg.

The drug triggered some kind of brain switch that made me litetally unable to stop eating. Its really hard to describe the psychological state, but it was way more than just being hungry, it was a biologically driven fixation.

Once the prednisolone was reduced, the problem went away.

I'm 49 now and know a bit about the psychological effects of prednisolone. Feel free to ask me about the stuff if you need.

[selinamcnair in reply to Freckle1000]

Hi shes on hydracloraquine I cant spell it any way there 200mg daily they scanned her organs and cant see what's making this happen! The urinating on herself happens alot they advised her to use pads which is embarrassing for her and the eating gets to the point shes crying saying shes still starving

[MargaretGail]

I have to be honest I'm currently on 30mg of prednisolone and all I can think about is eating As for the bladder she needs a different specialist for that.

[selinamcnair in reply to MargaretGail]

The specialist has tested her alot ill ask her at another appointment as this is stressful for her its stopping her enjoying her life

[johare]

A few things to ask; what medication is your daughter on? You say when she goes to the toilet her bladder is empty but then spoke of over eating. Does she have bladder symptoms as well? Has your daughter considering her age, had trouble accepting her diagnosis. I have worked with many young esters who find accepting a longterm diagnosis difficult and turn to food for comfort. They truly feel hungry.

[selinamcnair in reply to johare]

Hydrocoloquine 200mg daily she gets really stressed about the eating she says it feels like her stomach is going to explode and shes still hungry this was happening before we went to hospital and the bladder problems she had scans which revealed nothing told her to use pads I'm upset as I am not getting answers shes now depressed because of these symptoms

[johare in reply to selinamcnair]

With the bladder problems; if the scan is clear and there are no signs of infections, does she drink a good amount during the day? Many younger children with bladder issues need to train their bladder to hold urine. They find that they do not fill it enough during the day, with water, (not fizzy drinks or sugary drinks or tea/coffee which has a diuretic) before they go to the toilet, so the bladder shrinks and doesn't hold enough. It can lead to dribbling, nigh time wetting etc. The hospital can do bladder stress tests to see why it is not holding urine.Thirst can also, strangely make you feel hungry by mistake. hope this helps. there are enuresis clinic. they mainly do night wetting but also manage young people with day wetting or dribbling.

[selinamcnair in reply to johare]

Thank u ill say this to specialist it started last year she got told to sit on toilet other way round and after urinating told to wait 5mins and empty again she has done this as asked but its not worked

[johare in reply to selinamcnair]

Hi sorry for my waffle. Past life as a school nurse kicking in. Yep they are probably trying to train her to use her sphincter better to control the flow. Also some bladders lean back slightly and don't empty fully so the position you're in when going allows better flow. Having a full bowel or just before or during a period can also make a difference as they can put pressure on the bladder.

[selinamcnair in reply to johare]

The eating started to become really bad before we got to hospital she hates the eating she cry's all the time and gets very angry as she says shes starving all the time I'm going to speak to specialist again and see if they can find out what the problem is as I watch her shes slim and I cant believe the amount of food shes consuming

[johare]

I would assume that the consultant has checked her thyroid levels as many people with autoimmune conditions find they have hypothyroidism. However, this is usually checked. There are many endocrine conditions that can cause excessive eating with little weight gain but I would have thought that the blood panels would have shown these. Maybe a food diary would help as the dr may need to see the input. However, they always need to be careful of making a bigger issue of her diet than necessary. good luck keep us posted.

[selinamcnair in reply to johare]

Hi yes they had her in hospital for a week and monitored her eating so they were really surprised she ate so much they said her thyroid is fine so and did a brain scan after the eating diary but nothing to say what's happening

[Freckle1000]

Maybe just tripple check that the Lupus is absolutely & properly under control and all conceivable broad range tests are done. Including antiphospholipid tests etc.

Being a cellular level illness, it might be effecting parts of her system that scans just can't pick up on ? eg. MRIs won't show this kind of minor infiltration.

I've just been through a short sharp burst of a mix of high dose immunosuppressants that was long overdue and am amazed at the return of some neurological/psychological

function that I had pretty much given up on.

Prior to this I had an MRI that showed a healthy brain.

I really hope you can find an answer soon.

x.

[selinamcnair in reply to Freckle1000]

Thank u ill write that down for when I see specialist as this isn't dribbling its full,bladder coming away

[willowwag]

HI selina, im so sorry to hear that your daughter is suffering also with lupus its a hard enough without her having the urine problems as well at her young age. Have you been to see a urologist yet. Sometimes our bladders aren't full and you feel the urge to use the loo constantly this also leads to what is called a slow flow, to test this you sit on a special loo in hospital and they measure your flow the speed. sometimes if you flow is very slow when you finish your body thinks you have completely finished peeing but then as you get up it starts again. when we were babies we trained our bodies to know when we had finished peeing and to be able to know when we need to go, but medication and illness such as lupus affects messages being passed. if your daughter is found to have a slow flow a small tube can be inserted to widen the urethra to make the flow faster it stretches it and isn't painfull, this aids to stop the trickling afterwards. good luck and i hope you both stay strong. Thinking of you both.

[selinamcnair in reply to willowwag]

Thank u willowwag they did tell her to sit other way on toilet and wait 5mins after finishing to see if more comes out she does this but it is happening again I need to speak with,specialist again thanks

[nanleighh]

Have they tested her for diabetes? Excessive hunger and thirst and having to go to the bathroom frequently are symptoms of this.

[selinamcnair in reply to nanleighh]

Hi nanleighh thank u for replying I'm not sure if they have tested her but I will say at our next appointment my father had type 2 diabetes thank u

[Paul_Howard Partner LUPUS UK]

Has your daughter been seen by a lupus specialist? If not, perhaps you could seek a referral for a second opinion? If you are anywhere near London, UCLH has an adolescent lupus clinic led by Dr Ioannou.

[selinamcnair in reply to Paul_Howard]

Hi Paul thanks for replying yes she has a lupas specialist but they confuse me everytime we go

[Paul_Howard Partner LUPUS UK in reply to selinamcnair]

What do you get confused by? Do they use too many medical terms? Do you think you could discuss this with them or ask them more questions during the appointment so that you come away feeling less confused next time?

[willowwag]

Hi selina, I think what Paul said above is the answer if you find it all a little bit baffling I know I did, do you someone who could go with you a partner or another family member who knows how the problems that you daughter has. If you do take them with you if your daughter doesn't mind. With me my hubby always comes and Im so grateful as sometimes I don't register whats being said and i find it nerve-racking saying all the things thats going on. He will take over some of the conversation and always ask right so what does this mean. etc and how should that work..he will say to them can you explain in less medical terms. This i find really helps and I forget half the time whats been said so he can remind me to....sending you and your daughter hugs tell her she's really brave coping and she's got a wonderfull mum looking out for her x good luck keep up posted.

[selinamcnair in reply to willowwag]

Thank u I'm going to right all this information down and ask at out next appointment I will take a friend to help this is a great idea thank u for listening I just feel so useless sometimes as i don't know really how to help my daughter they said I'm doing a great job but i cant answer her questions its very stressful xxxx

[willowwag]

your doing a great job, helping her and trying to sort it for her. I think maybe its going to be a case that you learn together on this one ,and then support her with it all. I can imagine that its very stressful. All we want to do for our children is protect, love and care for them, and when we don't have the answers to the questions theres only one thing to....and that is stand for your daughter and get the answers and the care she needs. Don't ever feel alone. I am sure I can say for us all on here your never alone with Lupus uk and all of us here. Weather its to just air a concern, a fear or just to have a chat and reply. Everyone is here for everyone so please don't feel useless or alone, your doing one of the most important jobs ever and thats looking after your daughter. Keep that chin up high chick.

[selinamcnair in reply to willowwag]

Thank u for ur message its made me feel alot better I'm glad I joined group xxxx

[willowwag]

Im glad you joined to I know this group has given me so much support and hope it will to. Hope your feeling a little bit better today about it all. Best wishes to you and your daughter.

[selinamcnair in reply to willowwag]

Thank u xxx

[laheaford]

My daughter had a problem controlling her bladder which with this is Lupus related. They treat her with Tolterodine which she is on a high dose and this helps. She still has accidents now and again but not that often. It is upsetting this started with my daughter when she was 15 year old.

[selinamcnair in reply to laheaford]

Laheaford thanks ill mention this at her appointment shes so stressed about this it started at 13yrs and its constant ill mention this to specialist thank u sorry to hear ur daughter is the same its hard xxxx

[laheaford in reply to selinamcnair]

It's very hard at such a young age. When my daughter had loss of bladder control she would be wet through (all her clothes wet through) this would happen when walking through the town centre on many occasions. These drugs how ever have helped. She still has slight loss now and again but nothing like it was. They did have to put her on a high dose but for now it works. It's such a hard thing to see your baby go though. This has been the hardest couple of years ever. Just when we think we are winning something more happens. Take care xx

[selinamcnair in reply to laheaford]

Thank u we see her lupas specialist next week and ive wrote down all the advice so fingers crossed that we get some help thank u for ur message its really hard xxxx