12 year old with lupus and auto immune hepatitis

My 12 year old daughter was diagnosed with auto immune hepa*** brought on by lupus in early August.  She's on prednisone down to 30mg from 60mg and on azathioprine (Imuran) 50mg/day.  I've been told that the most important things are to stay out of the sun and to get enough rest.  Also that she should avoid as much stress as possible.  Can anyone concur?  She's still reeling from the news and now is having to not participate in social activities that require being outside or exertion, i.e. beach parties, sleepovers, baseball games in the middle of the day.  As a parent, I have to hold her back and it's a terrible struggle, but I know that she can get sick.  To make it worse, we live in South Florida where the sun shines almost everyday of the year! Any words of wisdom regarding sun exposure, rest, and how to help her cope with this psychologically???

Hi!

I am a nurse and teach 11th/12th graders, so I have an idea of what you are both going through. In fact, one of my students recently lost her older sister to lupus nephritis. Harsh reality that unfortunately your daughter will have to eventually come to terms with. And accepting what you already know: that what she chooses to do now, will directly impact her level of health and wellness 20 years down the road.  Generally, tweens and teenagers dont "see' that far ahead, and they only hear two things.... what they want to do and No! (what their parents and teachers are telling them to do). Then they react to that. Try giving your daughter options, because rest, and diet and balance are going to be vital to living with lupus. Instead of telling her No, you can't do that, or go there..... Sit down with LOTS of information about lupus and AI hepatitis, (knowledge is empowering) be willing to help compromise, and decide together with her dr. what she CAN do. Bargain, if she does this, she can't do that, if she does that this weekend, she cant do that, next weekend. Staying as well as possible is all about balance, and tweens and teens aren't  balanced on a GOOD day. So hang in there, the teen years will indeed be challenging. Set cufews and respect her input. Decide together, she knows how tired she feels, on a time to be home, and a time withh lights out and computer and phone OFF! If you think 9pm, and she thinks 11pm, make a real written contract for 10pm, and reward her compliance more than punish her non compliance. Sun exposure is a big bad, and one of the toughest things I have had to accept and I wish I could move to Florida. Sunscreen and barrier fabric jackets, and pants, while pricey, are stylish and very effective. There are many companies making them, I like the coolibar catalog. In fact, so stylish in the exercise garb way that her peers won't even realize she is wearing barrier clothing. With practice, she can stand in the shade and her groupie will naturally "migrate' with her. Use her teachers and friends as a resource, get her teachers and friends on board with things they can do to help and support your daughter. And with many things, remember, we really can't make a teenager do anything they don't want to...............So, 'give in' sometimes, and bargain for compromise that is healthier for her, ask her what she is willing to do to be allowed to participate, but maximize her rest and nutrition. Like, if she goes out for pizza, will she drink a fruit smoothie before she goes..... How would you eat an elephant???? One bite at a time. Hang in there mom! Don't beat yourself up on this, you can't take good care of her if you don't take good care of yourself.

hugs,

suetoo 

Im sorry to hear about your daughter's diagnosis. I'm not sure about the imuran with liver disease, my mom couldn't tolerate it. I have advanced liver disease, though not end stage that I know of, I haven't really been good lately bout my checkups. They thought I had AIH and I think that I do, as prednisone really helps my liver.

Porphyria (sun sensitivity) is actually a liver condition where the liver cannot produce needed substances to deal with the sunlight. Drugs like plaquenil exacerbate this, and you can end up with dark patches on your face that aren't real attractive, as well as the other lousy side effects. Nausea is common. Certain drugs make it worse. I have found that my liver doesn't metabolize the drugs that are restricted for patients with porphyria. you may notice patterns to what she can tolerate in terms of medication when her liver is irritated so checking out that site sort of gives you an idea of what drugs might make sensitivity to sun worse. And most of those drugs are hard on the liver.

Make sure your daughter has consults routinely as needed with a real hepatologist, not a gi guy or other type of doctor, but a liver specialist (hepatologist). Both you and she will benefit greatly from it, even if its once a year. The best hepatogists are at transplant centers, and since AIH is relatively rare, it would be good to maybe see someone at a big center.

I have a terrible time staying out of the sun. Having aquariums has given me the feeling of outdoors and sunlight without the sunlight. I have wood blinds and curtains. I do things at night. Heavy duty spray sunscreen certainly helps, as does covering up. It will depend on what she can maybe tolerate, as hippi, sue and lucy say. My liver swells when I get too much sun and it is unpleasant. I still get too much though ad my skin is a mess.

IMKindly runs a site that has a part dedcated to autoimmune hep and people there have it and theres lots of good information there. Its a good place to go. PM me if you can't find IMKINDLY and LIVER FAILURE on google. You have to register, but after that its easy and well worth it. They have staging docs, and treatment and types of AIH and all. PM me if you have trouble finding it.

Diet is important for liver and all illness I think. A hepatologist can likely recommend dietary changes that might make a big difference in dealing with AIH, I don't know but I'd at least ask what to avoid.

I'm sorry you and your daughter have to deal with this. Liver disease is really a pain, then the other on top. The fatigue can be really bad. But from what I understand, and I may be wrong, the AIH can go into long periods of remission and docs are pretty good at gettingthe flares under control.

I will keep her inmy thoughts and prayers.

AIH mom, I know exactly how your daughter feels, its not fun at all. I have SLE lupus and I am now 16. I was diagnosed with lupus at 14. For the first year of my diagnosis I completely avoided the sun, which was not fun at all. The next year I came to realize that I am stuck with this disease for now, and my only hope is to fight it the best I can. I do avoid the sun, but that does not mean I can't go outside. I recommend looking online for sun protected hats, and a long sleeve shirt. (try to seek shade, I too live somewhere with lots of sun, Las Vegas.) Over the summer I was able to go to Disney land, and the beach without getting sick because I was careful. If you have her pick out a hat, make sure she likes it, cause the first time I went out, I ended up taking it off because I cared what I looked like which was a bad choice. Make sure she wears sun screen as well! Like you also said, make sure she is not stressed out. If I stress out too much in school, or am too tired I end up taking a day off. Another good idea is to e-mail all of her teachers, so they cut her some slack. I'm really sorry for the dx. and hope everything works out. Another idea for stress is for her to stay active when she is feeling okay. It took me awhile to get where I am but I play basketball just about everyday, and that is where I forget about everything. Basketball might be a little extreme though.. but bike riding at dusk is great! Hope I helped! I know it can be very confusing, and hard to find people her age with the disease.

Samantha

 Wow ,I am really getting educated this morning. I came on the forum , so i could find out what Lupus is all about. My sister has Lupus but never talks about it, and since she lives in another state I rarely see her any more" I saw her last in August for my brothers funeral. He had pupu;;; as a child and it affected his kidneys. He was a twin which would have made ideal for a transplant. They could'nt do it ,because he had had a heart attack severl years back. He's certainly in a better place know. Except leaving me with no one to talk to about my disease ,which I am wondering why I haven't been given anything for, besides My BP meds. spiranolactone. I am currently on a liver transplant list. I have cryptogenic liver disease, which is Who Knows   I am they tell me ESLD , no one has told me to be out of the sun in fact i was told I needed vitamin D. I don't have all of the side effects that other people have, only brain fog when my body can't detox.ammonia build up. I do take med. for that.

which is probably the reason they don't give me other meds. My last check they said I was worse off on the arthritis area. Oh I also don't sleep , that's why I am up till the sun comes up.  Looking out the window I see a gorgeou, orange, three quartes of a moon setting. One thing to be thankful for. So so sorry to hear that such young children have to deal with.

 

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Sunblock, sunblock, and more sunblock. Your daughter is at the age where the way she looks and what she wears is very important to her. But if you can force her to put on sunblock every morning until it becomes a habit, that alone will help her. It's not enough, but it might be the easiest change for her to make. Good luck.