12 year old with lupus and auto immune hepatitis

What makes your lupus flare?
sunshine, uv exposure - 27.3%
over exertion - 0.0%
lack of sleep - 27.3%
stress - 45.5%
excessive heat - 0.0%
excessive cold - 0.0%

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New Member

Date Joined Sep 2009
Total Posts : 1
   Posted 9/25/2009 12:24 PM (GMT -6)   
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???

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Date Joined May 2005
Total Posts : 6941
   Posted 9/25/2009 12:43 PM (GMT -6)   
All of the above listed can, and do, make my lupus flare.

Re: Sun exposure. There are lots of special fabrics, clothing, and sun lotions that help, as do umbrella's and shade. Beach parties are probably out, but I see no reason why sleepovers & baseball games can't be handled somehow.

Make sure she is sleeping well at night, not tossing & turning with insomnia or even 'the wiggles'. Make sure she is eating good healthy food at regular times. These 2 plus some regular exercise are the cornerstones of keeping stress at bay.

I know you want to hold her back from everything, as she can get sick, but....try things slowly and one at a time. You and your daughter will learn what her personal 'triggers' are -- lupus is different for everyone. Maybe a midday baseball game can be replaced by an evening league, that sort of thing. You don't want to be too sheltering and hold her back - then she might become weaker and more succeptable.

Welcome to HW, I'm sure others will come along & post soon.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 9/26/2009 7:59 AM (GMT -6)   
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.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/26/2009 8:08 AM (GMT -6)   
I'm sorry about your daughter's diagnosis. You've gotten great information. There should be ways for her to still do most things she wants to do swith the UV protective clothing and umbrellas. etc,. Even with that, it is probably best is she is not outside when the sun is strongest if possible ( 10am-2pm). The other really important thing is to make sure she doesn't get too fatigued. Your daughter might not need reminding to take her medication, but my son (who is 12) has juvenile arthritis and every morning and every night I have to remind him to take his meds. You would think he would know by now since he's been taking meds for years, but I think that sometimes kids don't think about this.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/27/2009 9:19 PM (GMT -6)   
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.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

New Member

Date Joined Sep 2009
Total Posts : 1
   Posted 9/28/2009 3:24 AM (GMT -6)   
Dear Worried Mom,
I am so sorry for your daughter's illness, and for your worry.  I understand.  Although I was not diagnosed as early as your daughter, I was however diagnosed very young and I did also have lupus symptoms around your daughter's age.  I have become well after 2.5 years of chemotherapy (cytoxan) for kidney involvement from my lupus.  The kidney disease was WHO class IV.  I adopted a special diet, one in which I reduced sugar and the glycemic load placed on my body by high glycemic foods.  These foods spike inflammation when they spike our blood sugar.  More inflammation only makes the disease worse, as we are already dealing with an underlying level of inflammation in our cells.  I also recommend deep breathing to calm the immune system and counseling.  Maybe seeing a pastor or something.  That really helped me deal with my emotions and helped reduce my stress.  Plus I sing - I encourage you to encourage your daughter to do what she loves most in life.  I also started very mild exercise - pilates.  This was gentle on my joints and also helped me lose weight.  Eventually I was strong enough to do some dancing for aerobic exercise, and I regularly lift weight.  My physical strength has helped strengthen my mind and attitude.  So I hope she can also participate in fitness.  Best, Regan

Regular Member

Date Joined May 2008
Total Posts : 57
   Posted 9/28/2009 5:13 PM (GMT -6)   
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.

16 years old. SLE dx. 2008. Medications: Prednisone 10mg. Plaquinel 300mg. Methotrexate 12mg a week. Folic Acid. Calcium. Vitamin D.

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 9/28/2009 10:47 PM (GMT -6)   
In regard to sun sensitivity some lupus patients are sensitive and some are not. I am not and have enjoyed my outdoor activities with no effect whatsoever.  Every case is different.  Has she had a reaction to the sun or are you just asking her to take precautions?
As for what she can do physically that is something dictated by each individual case.  Some are quite disabled and others lead normal lives.  She should be cautious until she knows what she can do or not do....that is difficult for an adult let alone a 12 year old.  Having lupus might mean your daughter will have a different life but it does not mean she cannot have a fulfilling life once the disease is under control.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

Regular Member

Date Joined Nov 2007
Total Posts : 450
   Posted 9/29/2009 4:01 AM (GMT -6)   
scool  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 rolleyes   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.
--------------------------------------BLESSING TO ALL-----------------------------------------------------------------------------------------------june-------------------------------------------------------------------

Regular Member

Date Joined Sep 2009
Total Posts : 31
   Posted 10/6/2009 6:52 AM (GMT -6)   
Dear mom,what an overwhelming task you have,but you are at the right place for good advice.I lived on the beach all my young life,Calif.,then Naples Fla. Then as an adult Clearwater beach Fl. Never thought anything could make me leave the beach. Even after dx. of lupus could go to beach in limited amounts.Now not at all.But I'm almost 56yrs.old.Started walking beach at sunset,even swimming,Actually very romantic with husband.My children are grown,but my oldest has mild c.p. and A.I. issues,and loved the beach.We finally moved to Dunedin Fl.Still miss beach like crazy,comprises.Husband gets down and spends day once a week,and when he comes home I just smell him(little weird).Lupus is about comprimises,many of them,each and every day.You sound like a great mom.God Bless,Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 10/6/2009 10:34 AM (GMT -6)   
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.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 10/6/2009 5:35 PM (GMT -6)   
So sorry about your daughter's diagnosis. Stress can definately bring on a flare. Our
nervous system goes into overdrive when we are stressed out. The adrenal gland will
start pumping adrenaline and cortisol into our bloodstream with the end result being
decreased blood flow to our muscles. Our muscles then tighten up and cause pain.

I am not sun sensitive, but a change in weather can throw me into a flare. Lack of sleep overdoing it and stressing are also the big culprits that cause flares for me.

Your daughter will learn to pace herself and listen to her body. She will learn to rest
when needed. Keeping active and maintaining a social life will help her cope and give her
a distraction from her illness. She will learn moderation.

I wish the best for her!


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

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