Mom of newly diagnosed 10 year old son
Hi. My name is Beth and my 10 year old son was just diagnosed with SLE and lupus nephritis 1 month ago after being hospitalized for one week. He is currently on prednisone and monthly IV Cytoxan (he just had his second). I am so happy to have found this board and although I do not have lupus myself, I hope that you will allow me to post on my son's behalf. He is a very special little boy and my husband and I are trying to learn all we can in order to help him. I know that God is with us through this difficult time and has blessed us in numerous ways since his diagnosis. Finding this site is just one more blessing.
Welcome, KCsMom. I know it can't be easy for your family, but know that we are all here to support each other. We have some really great responders I've found this site to be incredibly useful and I'm sure you guys will too! You might also check out the Friends and Family board. It isn't always easy for me to read as the SLE patient, but it has been really useful for me to get a since of how my friends and family view things! Again, Welcome!
I am sorry to hear about your son but there will be a testimony at the end of this. There are many of us with lupus nephritis and still hanging in there just as he will. I know it must be harder as he is so young and trying to understand what is going on with him.
Welcome, welcome, KCsMom! We are happy to have you here.
What a lucky boy your son is to have a mom who cares so much to be getting support for him and herself. The true nature of love, that is.
I will be thinking of your son and hoping for a speedy recovery from this flare. I have had Lupus Nephritis as well (there are many of us on this board).
Hello and welcome to our family :lol:
I know it must be difficult to see your child have to deal with Lupus, especially at such a young age. Some general things that you should know are: Systemic lupus erythematosus, also known as SLE, or simply lupus, is a disease that is characterized by periodic episodes of inflammation of and damage to the joints, tendons, other connective tissues, and organs, (including the heart, lungs, blood vessels, brain, kidneys, and skin). The heart, lungs, kidneys, and brain are the organs most affected. Lupus affects each individual differently and the effects of the illness range from mild to severe. Lupus can even change in each inidvidual; the symptoms that a person suffers with today may disappear only to be replaced by new symptoms tomorrow. Lupus in children occurs most often at the age of 10 and older.
Caring for a child with lupus is one of the greatest challenges that your family can face. Now that he has been diagnosed, you are doing absolutely the right thing by learning as much as possible about the disease and the special needs of your son. You will also need to educate your son about his Lupus, educate his siblings, as well as his teachers, and your family friends.
Most children with lupus will do very well. The prognosis of lupus in a child depends on the severity of the internal organ involvement:
* Children with significant kidney or other internal organ disease require aggressive treatment. DO NOT BE AFRAID TO BE AGGRESSIVE AND PRO-ACTIVE WITH HIS DOCTORS! Ask questions and demand answers. Learn about all of his medications, their side-effects and why they are being prescribed. Ask about the expected outcomes if certain medications are prescribed.
* Any problems to be aware of.Even so, it is important that you and your son comply with your doctor's instructions.
* take medications as directed
* have his blood or urine tests when requested
* keep all scheduled doctor appointments
* following instructions about avoiding too much sun and making appropriate lifestyle changes.
Remember, however, that lupus is unpredictable and no one will be able to predict with certainty the long-term outcome for a specific child or how the disease will progress. Success in his treatment and management of Lupus will depend greatly on a combination of hard work on your parts as parents and his doctors and him, and good luck.
You stated that he is currently taking Prednisone & Cytoxan. Here is a bit of information about those drugs:
Cytotoxic drugs are immunosuppressants. Cytotoxic drugs are one alternative to high doses of corticosteroids (such as Prednisone). These drugs allow a dramatic reduction in the corticosteroid dosage, often to a level without obvious or severe side effects (weight gain, bloated face, acne, unwanted hair growth, and stretch marks). This is often a major medical and psychological benefit to children.
cytotoxic immunosuppressants carry several risks. *Short term, cytotoxic drugs carry the risk of damage to the bone marrow that can cause bleeding or make the child unable to fight off an infection. Careful monitoring usually reduces these risks. * Cytotoxic drugs may increase a child's risk of developing certain forms of cancer. * There is also evidence that cytotoxic drugs may interfere with the ability to have children in the future. However, many more people are greatly helped than hurt by these drugs.
Many of the symptoms of lupus result from inflammation in various tissues of the body. Cortisone, a steroid manufactured naturally by the body's adrenal glands, has been found to have a distinct anti-inflammatory effect. Cortisone medications made synthetically are among the most effective anti-inflammatory drugs known. Prednisone is the synthetic corticosteroid preparation most often used in the treatment of lupus.Prednisone is an extremely effective drug and may be necessary to control active lupus. Those individuals with organ-threatening disease (i.e., heart, lung, brain, kidney, liver) usually need steroids in order to prevent loss of function in the organ.Some of the more common side effects of steroids include changes in appearance such as acne, development of a round or moon-shaped face, and an increased appetite leading to weight gain. Steroids may also cause a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. The skin becomes more fragile, which leads to easy bruising.
One of the most difficult problems for every parent is how to let their children "grow up" without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, "as normal as possible." Every decision you face with your child (school trip permissions, friends, a sleep over, etc.), ask yourself, would you let them go if they didn't have lupus?
The only big exception is exposure to excessive sunlight, which is known in some instances to make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.
It is important to recognize that your child will have days when they are upset about having lupus- just as you are upset that they have it! They will be upset about the side effects of their medications and upset about the limitations placed on them because they have lupus. The fact that it's no one's fault doesn't make it better.
You must treat your child just like you would if they were angry about something else. Occasional problems are normal. If the problems become prolonged you may need professional help. No one has a single solution that will work for everyone.
It is important to remember that most children hate being sick. Often this hatred will be expressed as:
* hatred of the pills
* hatred of the blood tests
* hatred of the doctor's visits
* hatred of advice from parents
Make sure the child knows why they have to do unpleasant things. If you and your child can't work it out, get help!
I hope that this information has been a bit helpful. We are all here for you and your family and especially your son. Please come to us at anytime for any question, concern or just to vent or to find support and comfort. There will always be someone here to provide what you need!
I wish you the very best
Peace and Blessings
Thank you all so much!
I just want to thank all of you for your information and support. It means so much to be able to have people to talk to that have been through the same thing. I hope that I can offer some help in some way also
You are most welcome and I am sure that you will also provide valuable support as well!
Peace and Blessings
Welcome to the Forum! I'm SO glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
You are very brave and your son is very lucky to have such a wonderfully supportive and caring mother!
Keep well and God bless!
Please forgive me; for some reason, my response posted twice?! :? :shock:
:lol: No problem. Duplicate post has been taken care of (lol)