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Forum Name: Pediatric Topics

Question: I need some advice on my daughter


 memorylane4ever - Thu Feb 12, 2004 3:23 am

:?: Well she is 11 years old, she was premature of 4 weeks, born with pneumonia, beta strep infection, and jaundiced. She stayed in the hospital for about a month and then came home. She was immediatly taken back into the hospital due to the same infections coming back, after that she suffered the normal ear infections, tonsilitis, bronchitis, she had her tonsils and adnoids removed at age 3, and tubes put in her ears at age 2, and then had her appendix removed at age 7 due to rupture. She contracted chicken pox 5x, and was sent for an immunology work up that came back normal thru CHildrens Hospital Dallas... Well since her appendectomy at age 7 she has seemed to grow well, been actually very healthy. She is now 11 and is 5'4", but this past year or so, she has had reoccurrent headaches, easy bruising, pale skin, joint aches in the knees, elbows, anckles, then about 2 months ago, she started having severe chest pain, and shortness of breath, so now we find that she has the beginning stages of hypertrophic cardiomyopathy... but as of today no blood flow problems have occured or valve problems with this... So I guess now I need to add this red rash she gets on her cheeks from time to time, her pediatrican before put her on some sort of medication (lotion) to apply to it oh about a year ago, but it has never worked... We even bought all the expensive clinque products to have her wash her face with thinking it was some sort of acne?? but it flares up from time to time becoming more frequent.. Now she has dropped over ten pounds in a 3 week period, she still eats all the time,, we have always referred to her as the bottomless pitt in the family,,, she is bruising easily, we went into the pediatrican last week who ordered a CBC, RF, and ANA on her,, CBC and RF are both normal,, we should have the results on the ANA back tomorrow, i expect that to be normal also... I have since September of 03' 37 documented times she has gone to her school nurse for all these syptoms plus low grade fevers, is there something else that could be done to show us what is going on??? I am getting worried about her,, she has always been very athletic, cheerleader, basketball, soccer, ect... She can't even run in gym due to her heart feeling like it is coming out of her chest, and joint and muscle pain... She gets these headaches and just crys all night long, or all day long..... She walks with a limp when her joints are hurting?? Could there be other tests that maybe we are not running to explain what is going on with her?? I could really use the help thank you for your time... Lynette (brittany's mom)
 Dr. Russell M - Fri Feb 13, 2004 10:04 am

User avatar Hi!

I hope your daughter's illnesses get better with time. From what I read in your thread, your daughter is getting a full workup, and the ANA would be a test to wait upon. Systemic lupus erythematosus is a diagnosis to be ruled out here.

I don't think I could be of any more help here.

Wishing her a quick recovery.

Warm regards,

-Bill
 memorylane4ever - Mon Feb 16, 2004 3:43 am

:cry: We got the ANA back on Valentines Day, it is Positive! I think that I was more in shock and well I still am.. My grandmother has SLE also I just found out this morning, from my mother. She died a couple of years after she found out. I guess now we are just trying to learn everything we can about this disease, I just don't understand really. I mean why me, why my children. I have lost one child at the age of 8months, and now britt is sick with this, and her baby brother has another auto immune disease, and I am sitting here crying and wondering why? Brittany is wanting to change doctors because she has no trust in her pediatrican at this point, she hurt Britt's feelings pretty bad this past week, bby the things she said to her, so now I am in contact with our sons endocrinologist by email to find out who we can go to for treatment, but Britt cried when we got the news, and now she doesn't want to talk about it at all. She doesn't want to even listen to any advice or anything on any of this. And I guess she is just stressed out, with this and the fact they found the heart problem not even a month ago... I just would love to have some input here on what I need to do, or can do for her?? Any response would be great. Thanks Lyn
 Dr. Russell M - Mon Feb 16, 2004 9:02 am

User avatar Hi!

I see that you are going through a hard time. I feel sorry about everything. If it is of any consolation, this life is limited, and any life compared to eternity would always remain negligible, be it someone who lived a 100 years or just a day. What is important is to cherish what we do have as life and live it as complete and as fruitful as we possibly can.

SLE is a disease without any predictable course. Each individual with the disease would have different manifestations. Some may manifest with acute life-threatening disease, some may come with many years of symptoms. But early diagnosis and careful treatment tailored to individuals have improved the prognosis from what was once perceived as an often fatal disease. This is a multisystem disease, and any organ of the body may get affected by it. Majority (some statistics say 90%, others 95%, and some quote 98-100%) of children diagnosed with the disease live beyond 5 years. The commonest cause of death are infections, kidney disease, and brain affected by SLE.

In SLE, it is very important to have careful and frequent clinical and laboratory evaluation to tailor medicines to suit the individual, and to provide prompt recognition and treatment of disease flare (increase). This is the cornerstone of treatment. Monitoring is lifelong. A rheumatologist would be the specialist you can depend on in the long run. Other specialists come in depending on the organ affected.

Steroids, among other medications, may become part of life for Brittany. A diet with no added salt, low fat, and calcium rich should be brought into routine. Medicines used for SLE may have adverse effects. These adverse effects may be perceived as more severe than the disease iteself for the patient. Brittany, the family, and the physician should expect issues like depression and non-compliance with treatment to arise during the course of therapy.

Like any other grave disease of such nature, one must always keep openness, honesty, and hope as among the best friends to be trusted. Brittany should be encouraged to talk, be spoken to with openness and honesty, and be listened to with empathy. It is a common fallacy by the patient's care-givers to hide the true nature of the patient's disease for fear of hurting the patient's feelings. But the truth is the care-giver is usually in fear of hurting one's own feelings to see their loved one hurt. Whatever hope we intend to give should be realistic, and not false. Giving false hopes would only pave way for a heavier crash later on in life, when it would be too late.

Encourage Brittany to have a normal lifestyle. Exercise is important to maintain a normal bone density and appropriate weight. Sunlight is better avoided. Stress and fatigue may cause a flare.

Similarly, like other diseases with no cure at site, patients often tend to move their trust upon alternative medicines, hoping to somehow get cure. Though alternative medicine is not discouraged, it can have effect on the medicines used by allopathy (modern medicine) to treat SLE. So, one has to be careful before embarking on that route.

Remember, the CORNERSTONE of SLE management is frequent re-evaluation and prompt medical treatment of flares.

I think this should suffice for a start. I am sure Brittany's doctor would detail things out for the family.

Wishing her a quality life,

I remain.

With warm regards,

-bill
 Dr. Yasser Mokhtar - Mon Feb 16, 2004 12:52 pm

User avatar Dear Memorylane4ever,

This is the website of the systemic lupus erythematosus foundation.

Click here

You might want to take a look at it and see if it contains anything that could help your daughter and yourself understand and cope with systemic lupus erythematosus in a better way.

Your daughter also could get to know other patients of her own age (to know that she is not the only one her age to have this disease) and try to see how they coped with their disease and the things that they have been through and their experience.

Thank you very much for using our website http://doctorslounge.com and i hope that this information helped.

Yasser Mokhtar, M.D.
 ckbruce - Tue Feb 22, 2005 11:15 pm

I just wanted to let you know that I am 24 and was diagnosed with lupus (sle) 6, almost 7 years ago. It has been a long journey. I thought I could give you just a few words of advice though nothing helps more than informing yourself.

I finished my junior year in highschool and over the summer spent almost every day at the pool. It relaxed me, plus I had no energy and could barely do anything other than lay around. Towards the end of the summer, my family was concerned because I would fall asleep in the middle of conversations, even in the middle of the floor. Not only was I falling asleep easily but I was aching all over and when I would shop with my mom (one of my favorite past times) I would have to stop and sit on the floor, I just couldn't go on. Luckily for me, they found out from the very first blood test that I either had lupus or Rheumatoid Arthritis. I went to a specialist who actually diagnosed me as having hashimoto's thyroiditis which did not set well with us. My mother contacted the Lupus Foundation of America and asked for the best doctor in our area. They were very helpful and I was seen right away. The diagnosis was made, I have systemic lupus eurythematosis.

Now this is obviously a very long story, so I will just give you a couple key points which I would have liked to know in the beginning.

Number one, don't have your daughter take every drug that is thrown to her. My doctor had me on 27 pills a day in the beginning and to this day my stomach has never been the same. Not only are nausea and vomiting a part of my daily life, but for almost 2 years I was unable to take anything at all other than liquids or shots. This meant I had no treatment for the disease itself for almost 2 years. I did take methotrexate injections, which never helped and also liquid vioxx which I found extremely helpful for almost 2 years and then one day it no longer worked for me. After I found another doctor, we found out that one of the meds I was on was valium, but because I was getting the generic brand, I never realized it. Now did I really need valium? I don't think I did.

Your daughter has a couple years to cope and deal with the disease before highschool starts. I see that as a good thing, obviously the fact that she has lupus is horrible but with highschool being such an important part of a teenager's life, it is good that she has time to get in under control and find meds that help her. I missed 75% of my senior year and missed out on so much. No one understood what was happening, and either did I, so I wasn't much help. My mother made sure all of my doctor's notes were on file and the school worked with us with home tutoring and I was still able to graduate. That is one definite thing I recommend, keep everyone informed. That way there are no assumptions. Everyone knows. When it is out in the open, people cope better with it as well.

Inform both yourself and your daughter. Make sure your family is informed, but make sure you read up to date information. In the beginning I bought a book that told me never to have children because I would die and that only 60% of lupus patients live past 10 years. Totally not true today, maybe when the book was written but not anymore. That is so important to get up to date information. And there aren't that many books out there that are up to date.

I now am on 24 hour release morphine for my arthritis. This sounds scary I know, but my advice is to not let your daughter be in pain. For 5 years I just accepted that I would also have to live with the pain that was ruining my life. NSAIDS haven't worked for me, COX-2 Inhibitors haven't, steroids haven't, plaquenil hasn't, nothing curbed the pain (except for the vioxx for that time) other than morphine. How did I get it? I went to a pain specialist and said "listen, my life is suffering, my marriage is suffering, my job is suffering, not just me. I can't take it anymore." And that was that, I was given morphine. Actually called Avinza. Now don't get me wrong, the pain isn't gone, but I can sleep through the night and even exercise some, but it is the best pain relief I have ever had. So don't let your daughter live in pain, if the meds she is given don't help, keep searching till you find one that does.

I know I have gone on forever, but I could tell you so much. The last advice I will give you is regarding the malar rash (the butterfly rash across the nose and cheeks). Mine has been very bad, I have always been described as "red." This was very hard in high school, it looked like acne and believe me acne makes it worse as you get older. About 6 months ago (after trying everything, even the topical steroids) I broke down and ordered Pro Activ. I am sure you have seen it, it is almost 50.00 a month and Vanessa Williams endorses it. Now this is alot of money but I just had nothing left to try. After 4 weeks my rash was lighter and the acne was gone. I use it once a day because the twice a day was actually making it worse, but my face hasn't looked better since before my diagnosis. I will never stop using it though I discovered 2 months down the road that it bleaches everything it comes in contact with. Even my pillowcase. So be prepared with a white pillow case and a white towel. Even these will turn orange.

If your daughter is photosensitive they will tell her to stay out of the sun. This was the hardest part for me in the beginning, but I am not that good about it. I don't cover up, I wear hats and sunscreen if I am in direct sun, but I will still go to the pool. But as an adult I have made that choice. I actually had my wedding in Jamaica on the beach at sunset, my doctor didn't forbid it and it was the best time of my life.

Take everything in and then do research of your own. I have run across horrible doctors who know nothing about lupus and I have found great doctors. Just follow your instinct as well as your daughter's. You have to. Because this is a chronic illness, you want remission, that is your goal. Although I have yet to acheive remission, many other's have. Don't lose hope. I actually lead a very normal life, just with pain and alot of meds and some other complications but if you saw me you would never guess.

My husband wanted me to add that my mother was a little lax with me because of my diagnosis and it being senior year. She let me have alot of freedom that actually wasn't good to have at that point. It could last a few months or a few years but your daughter will be angry and hurt. Understand but don't let that make you parent differently. I went a little wild and did because of my freedom. This was my way of rebelling against the disease but it did me no good, only harm. So keep that in mind.

I wish you luck, patience and strength. Both your daughter and your family will need it. You will be going through this with her for years and you must be there for her but not act like she is dying. My advice anyway.

I hope you don't think I have crossed the line, I just wanted you to hear it from someone who has been there recently and am still living with it day in and day out. I so wished I had some advice from someone other than doctors back then.

One last thing, please don't take your daughter to Lupus seminars, my mom took me and they did much more harm than good. All you see is people in wheelchairs and walkers, suffering, not life and laughter, she doesn't need to see it. I didn't and I still don't.

Thanks for listening,
CKBruce

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