Hallucinations

[Anjlyne]

Hi Guys, just wanted to asked about your opinion. My sister is only 14 and was diagnosed with lupus 2weeks ago. Now she's having hallucinations and couldn't sleep. Do you have any experience on this? Appreciate your feedback

[Hidden]

Hi,

Has she been prescribed prednisolone?

It could be medication or disease related, do you have a contact number for the hospital? You really need to discuss it with her Consultant.

[Anjlyne in reply to Hidden]

Yes she's taking high dose of prednisolone

[Hidden in reply to Anjlyne]

That is probably the prime suspect here but you can’t assume that. I would get in touch with the Consultant as hallucinations can be very distressing and have the potential to cause harm to patients. It’s worrying especially as your sister is so young. I don’t wish to worry you but better to be safe. No Consultant will mind you getting in touch for this type of situation.

[AgedCrone in reply to Hidden]

Definitely get medical advice..Pred sends me round the bend.

My Consultant said I must never take it again....there are other steroids that can be prescribed.

[Anjlyne in reply to AgedCrone]

Hi, we rush her to the hospital last may 22 and she was adviced to be on methylprednisone for 3 consecutive days, she finishes her 2nd round. Still no improvement, she's doesn't sleep, sometimes she talks by herself and never answers right to questions.

[AgedCrone in reply to Anjlyne]

is she being treated by paediatricians.....steroid drug doses are very different for children....& altho she is 14 she is still considered a child where drugs are concerned. It must be so worrying for you.

Before taking the steroids did she tend to chatter to herself, like some youngsters do? She might just be doing that in a more exaggerated way because she is stressed?

I know I talked to myself - when I reacted badly to Prednisolone ....which I don’t normally do, & it really stressed me out....because I couldn’t figure out what was happening to me.

Luckily I managed to reach my Consultant & he said it was a rare reaction that would wear off ...which it did. But of course being much older - there was probably an underlying understanding to cope that a child wouldn’t have.

But do keep consulting her doctors...the poor girl must be really scared.....& to see your little sister so upset must be horrible for you.

I certainly hope things improve quickly.

[Anjlyne in reply to AgedCrone]

Yes she's under pedia and yes she chartters exaggeratedly. Even up to this point, she'll take her last metheylpred I'm really praying and hoping that she'll improve after this. And I'm so thankful and appreciating your time, I have no one to tell

[whisperit]

Hello Anjlyne

It's not uncommon for children and teens to experience disorientating thoughts or sensations when they are very stressed and not sleeping (adults too, but not so much). Sometimes those signs of stress can be mistaken for symptoms of neurological or psychiatric problems. In other words, it's always scary, but not always serious.

Likewise, is it possible she is having some difficulties with a new medication? Temporary sleep problems would not be unusual, but hallucinations and sensory distortions might be a real concern.

My first suggestion would be to give your GP or rheumatology nurse a call (if you have them). They may be able to provide some reassurance over the phone. Do keep a record to see if there's a pattern to these symptoms, and do lots of anxiety management stuff (relaxing activities, calm breathing, self-soothing - but avoid meditation, as that can sometimes get 'trippy').

If these problems are more extreme than you feel able to handle, or if they persist, go to the GP in any case; having a record and tried anxiety management should help them assess the situation properly.

Naturally, if you feel at any point the situation is out of control or your sister isn't safe, don't hesitate to call the doctor x

[KellyInTexas]

I hope her doctor ( Rheumatoligist/ GP depending on which country you are in) was called right away and she’s been urgent referred to a pediatric neurologist who is familiar with lupus.

I’m in no position to speculate, but I am aware that there are medication interactions , as well as neurological manifestations in lupus with some patients. ( a lupus psychosis it is called.)

It’s very frightening... but with proper management can resolve.

It’s also a clue as to the extent and type of lupus she has. It helps drive treatments and success. Early intervention will prevent damage.

What a lucky little sister she is to have a big sister like you looking out for her. ❤️

You rock!

[KayHimm]

I am sure this is frightening for both of you. You do need to be in touch with her rheumatologist right away. As Tynemouth says, it can be related to the medication. I was with a hospitalized child on high dose prednisone who thought bugs were crawling on him. In his case, they thought his change in mental functioning was caused by the prednisone.

There may be a variety of causes. The one thing we know is that this is concerning and her doctors will want to know right away.

Hoping this will get resolved.

[eekt]

Very wise replies already, but one other thought that hydroxychloroquine can cause psychological/psychiatric/neurological side effects in some people (most benefit greatly from it), and this can happen within a couple of weeks (speaking from experience here), so if your sister has been prescribed HCQ, worth checking out all the other potential side effects to see if there might be others...the American site drugs.com* lists more side effects than the patient info in the pack, including: '

•feeling, seeing, or hearing things that are not there'

All the best, what a wonderful sister you are xxx

*drugs.com/sfx/hydroxychloro...

[Lupiknits]

Just one other med which gave me hallucinations - gabapentin. I already have bi polar disorder so they would never give me pred, unless in hospital.

You are a very good sister x

[whitegato777]

Yes high cortisol and lack of sleep can do that