ARGH!!! What can I do? (VENT VENT VENT)!!!!!! | Lupus Forums at The Lupus Site
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ARGH!!! What can I do? (VENT VENT VENT)!!!!!!

Discussion in 'Chit Chat' started by wahine, Sep 27, 2010.

  1. wahine

    wahine Registered

    My 16 year old daughter is literally falling apart in front of me:(. She is a beautiful teenage girl who's hair is slowly thinning away, weight is piling on, bags under her eyes from the insomnia and behaviour that is becoming more and more outrageous.

    What am I supposed to do? Is it the meds? or is it the Lupus?

    Any mum's out there who can help me? Anyone out there who can help me?
     
  2. cally

    cally Registered

    Hello,

    Firstly I'm really sorry that you and your daughter are having to go through this. Behaviour changes can be one of the most upsetting problems that come with SLE, for me it is my low mood that really affects those around me. When I am at my worst I really am best left alone, I can be the most horrible person. Is your daughter on steroids? This could be one explanation for her mood and weight gain. If not it is probably the pain causing her to be more inactive than normal. It is really hard but why not when she is in a good mood and not too sore suggest a walk? Even if it is just to the shops, it will help her get out of the house and keep moving. You should speak to her rheumy about the loss of hair, there are sometimes things that can be done to minimise this.


    It may be really hard but if you haven't already tried, your daughter may just need a shoulder to cry on. Living with a chronic illness- as I'm sure you know is very very difficult.

    Take care, Cally xx
     
  3. debatat

    debatat Moderator

    Hi, as a parent myself I understand how distressing it is to watch your child suffer. When is your next review with the doc? Usually once treatment has commenced the hairloss slows down. Could there be another reason for this? Insomnia is horrible and can affect a persons behaviour let alone a person on meds with a chronic illness. I do think it is maybe time to address these concerns with your daughter and her doc. There are so many meds available, it is a shame for someone to suffer distressing symptoms needlessly. I wish you well, I know it must be very difficult for you.
     
  4. oesa

    oesa Lisa_S

    Hi Wahine - sending hugs your way.

    Steroids make me act quite outrageously, in a very manic way. If your daughter is on high doses, that may be the cause of the behaviour. I don't know if she's seeing a counsellor, but that might be a good step - even if it is the meds causing the behaviour, she'll need some coping strategies (I stopped carrying my credit cards at one point to control some of my more impulsive behaviour...)

    I was diagnosed when I was 14, and I know that my personality and physical changes were really hard for my parents to watch - I'm pretty sure I had CNS involvement (but was never tested) as I went from a straight A student to someone who needed 10 seconds to process a simple question like my mom asking me what I'd like for lunch. That went away once the meds started to work. I also gained a ton of weight from the prednisone, and lost a good portion of my long, thick brown hair - I ended up cutting it short and getting a perm, which I TOTALLY DO NOT recommend - the chemicals irritated my skin, and the 80s were a bad decade for perms... Cutting it short worked though - it was easier to add volume with various products, and luckily spiky hair was "in" then (seems to be somewhat trendy now too, if she's into a certain look...).

    On the inmsomnia front - that could also be from steroids. Your GP or Rheumy should know that it's a problem, and they could likely prescribe something to help.

    If your daughter's behaviour is really concerning you, I'd make a phone call to your rheumy before your next appointment - both lupus and various meds can cause various kinds of psychiatric symptoms, and if it were me, I'd want some reassurance that it was nothing to be concerned about. (or some help if it is...)

    Hoping she (and you) feel better soon!

    Lisa
     
  5. KarolH

    KarolH Registered

    Hello and sorry your having such a tough go of things with your daughter.
    The others have given great advice here and it may be the steriods coupled with illness and being a teenager too.
    I would call the doctor immediately. Clearly your concerned so maybe the doctor can enlighten you some.
    Good luck and keep us posted.
     
  6. keebler

    keebler Moderator

    Hi Wahine,:hug:

    We want only the best for our children and it gets so frustrating and we feel so helpless when we cant make it go away.
    I am so sorry that you are having to deal with this.:(

    It can be a vicious cycle when we are in pain. Pain = lack of sleep= exhaustion= more pain. Your daughter needs to break that cycle. It is hard to do and I think you need to contact her rhumey.

    What meds are she on? Maybe a few changes or adding meds to help her might help.
    Let alone being 16 and having to deal with all of this. It can get depressing for us. The age 16 they have so much energy, doing tons of activities. Your daughter is probably feeling left out of all the activities her friends are doing and don't forget to include boys into the factor.

    Please let us know how you and her are doing.
    Love & :grouphug2:
    Lyn
     
  7. wahine

    wahine Registered

    Thank you all for your kind words and advice. I have trolled the internet looking for support for my daughter (and selfishly myself). Here in New Zealand there really is not much support for younger Lupus patients so Niquisha has no one to bounce of. I have approached the supports services here but she is resisitant to speak to anyone older than 20 because she feels that they dont know what she is going through. The young ladies that I have managed to track down are all very unwell and non compliant with there current treatment regime. A couple of whom are already in Renal failure and on dialysis as a result of this. It really scares me and I dont want to see my daughter go down this route. It is hard to cope with such an unpredictable and debilitating ilness, as well as the normal teenage stressors like school, friends and trying to live a normal social life.

    She has just seen her Rheumy (and a new one at that) who has looked through her notes. We are going through the New Zealand Public health service for her medical care so the Doctors change regularly, so you have to repeat your story blah blah blah....Its hard to establish a good relationship with your physician when they keep changing.

    Niquisha suffers from Migraines (CT and MRI showed some minimal changes in her Mid Brain Area), Hairloss (Rheumy attributes this to the Lupus), Achy Joints, Pleuritic like chest pain, Insomnia (also very vivid nightmares), Weight Gain and she can be rather vague at times.
    Our Rheumy wants to take her off the Steroids all together. Her current med regime is as follows.
    100mg Azathioprine
    400mg Plaquenil
    10mg Prednisone
    40-60mg Nortriptillyne (for Headaches)
    And Antihistamines to for her skin itches and sensitivity.

    Oesa, I was looking on her facebook page the other day and she had posted up that she was deciding wether to stay long or go short. I let you know what she decides.

    I will encourage my daughter to get on here and post in the young peoples page.

    Again, thank you very much for your support...
     
  8. Pink Pearl

    Pink Pearl Registered

    Hi, and sorry this is happening to your lovely daughter.
    For me, steroids are a toxic drug and I am not able to deal with them well. I think there is a combo of insomnia caused by lupus flares and medications. Also the migraines can be exacerbating the nightmares. The games that this disease can play on the brain is incredible. If the Nortriptylline is not helping her headaches and not helping her to rest, you may ask about switching to one of the other tri-cyclic drugs. I do much better on amitriptyline than I did on the Nor... For a few of us, plaquenil can actually activate the migraines, and I am one. So, if all else fails, look there.

    In my experience, going totally off steroids is an ideal goal, but not reached permanently by many of us. I maintain at a minimal dose and that works to help me skip flares like I used to do.

    Also, once the medications are stabilized and your daughter's health improves or stabilizes, you may find that she does not need all the drugs......but may too. Until her health stabilizes, you are on such a teter-totter. Her doctor needs to know all this is going on. If you don't have an appt soon, then I would think a phone call is in order to get this dealt with.

    Good luck to you and her.
    Sally
     
  9. wahine

    wahine Registered

    Well what a whirlwind time we have had.

    Niquisha (or squishy as I call her), has been feeling a little bit down and out lately. I took her to get her bloods done and boy what a mixed bag turned up.

    Low Iron, High Platelets (too high), Half of the white cells are low the other High, Sodium low, Potassium high, ESR high, CRP borderline, Clotting time high....GRRRR I cant make sense of it all.

    Drs are no help. Im starting to lose faith in them. Is this normal?
     
  10. StevieM

    StevieM Registered

    Sorry to hear about your daughter having problems like this, my 16 year old daughter was diagnosed with SLE 6 years ago so I totally understand how frustrating this whole thing is. Sorry I can't say much here but my daughter doesn't like me posting about her...but I would be happy to chat to you via email or in chat.
     

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