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My daughter has a rash on her nose and forehead

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Posted 6/28/2009 6:02 AM (GMT 0)

My daughter who is 9 developed a rash on her forehead and nose when we were in AZ in March. It went away when we got back home but now over the last month the rash has come back. She has been positive twice for ANA, has had joint pain in knee's, elbow's, and ankle's. It cont during the day. Doc says growing pains in regards to the joint. I have to take her in for the rash soon. Not sure what to do. She gets bad ulcers in her mouth. She has autoimmune croup and is treated with prednisone high doses at least twice a year for several years. She get fatigued and is so achy in the AM and cant function unless she takes a bath in the morning. I think I have everything down. Im so stressed!!! Lupus is so prevalent in my family. Many other autoimmune too.  I have it bad. My son has thrombocytopenia as does my mother. My grandmother had RA and thrombocytopenia. My great grandmother had MS. Three cousins with lupus. One has died 5 years ago and she was diagnosed at the age of 10. She lived till 56 years. Just need an ear to listen. I dont want her to have this. I dont want to see her suffer as I have. Although she suffers alot now. Its so hard!!! cry   What should I do if the doctor just pats our heads and sends us on our way again? When we go in with the joint pain, of course its better that day and her assessment is normal. I know that her rash wont go away because its been there nonstop and gets worse in the sun. So it will be prevelant. Any thoughts from anyone would be appreciated.

Posted 6/28/2009 3:43 PM (GMT 0)
Mypearl,

I'd run right to another doctor. If your child has a positive ANA, malar rash, mouth ulcers, fatigue, AND joint pain, I'd run away from a doctor who "pats your heads" and tells you she's only having growing pains. She needs to be evaluated by a rheumatologist who specializes in lupus or other autoimmune diseases. And with the strong family history, it's even more important that she get an early diagnosis.

You know as well as anyone that an early diagnosis is important so that she can receive the care she needs in order to (a) make her feel better, and (b) stop the progression of the disease.

The first thing you can do is keep her out of the sun. I know it's hard to explain that to a 9 year old, but she needs to put on sunblock first thing in the morning and stay out of the sun.

I'm so glad that you found this forum. There are other folks here with children with autoimmune disease and I hope they'll be helpful. We're a small family of people of different ages and a variety of autoimmune diseases and we provide support, information, and resources to each other. And it sounds like you need a little bit of all three.

You have my sympathy. My grandkids are her age and I can't imagine the nightmare of learning that one of them has lupus. Hang in there friend, and keep coming back. And kudos for being a good advocate for your daughter.

((((Hugs))))

Pat
Posted 6/28/2009 5:40 PM (GMT 0)

Patty gave you great advice.  It seems this doctor isn't listening or just doesn't know enough.  I would add that you should take a picture of your daughter's rash in case it should fade before she see's the doc (this one, or the next one).  Same goes for mouth sores if you can manage it.  Itemize her symptoms and the family history on paper - give one to the doctor - and then request a referral to a rheumatologist for her, based on what you know personally about the disease and what you've seen your daughter deal with, and include the family history.  

Most doctors are reluctant to deny a referral when the patient requests it - especially with an arsenal of very good reasons for it.  It might get you in sooner than starting over from scratch - but do what you have to do. 

I wish you the best and hope you and your daughter get answers and treatment very soon!

Lucy

Posted 6/28/2009 7:28 PM (GMT 0)
mypearl, that's what happened in my case.  I was patted on the head and told to stop making up stories.  Because of that wretched doctor I suffered needlessly for a decade and the disease was allowed to fester and get so much worse than it needed to get.  I agree with Pat and Lucy.  Ditch this doctor and keep going until you find one that truly listens.  Good luck, we're here for you.
Posted 6/29/2009 2:31 AM (GMT 0)
I agree with the above advice. Taking your daughter toa dermatologist for the rash might get you more action. Sometimes they are more willing to do the necessary tests and exams. They also can give you creams to rule out something like roseacea which can get worse in the sun. Some people think roseacea is a benign condition, but it can be horrible, it is an infection.

I am getting sent back to a dermatologist by an endocrinologist who doesn't believe after several docs and exams that I have true hyperpigment. So I will have to go through biopsies and all. My adrenal bloodwork is mildly low, not low enough to cause the disfigurement they believe. But they are all men. My dermatogist is cool and will treat me if the endos won't after testing. Bloodwork is not the be all end all, espeically if you have multiple health problems, they balance things out, and if your metabolism is slow, the blood looks better than it is.

Well, I hope you get your child to a better doc and I agree I would avoid the sun in any case. I really mesed myself up this weekend getting too much sun. I hope she feels better and gets a good dx soon.
Posted 6/29/2009 5:02 PM (GMT 0)
I agree also. A dermatologist is the doctor to look into this. I think they are really gung ho about trying to find out what is going on with your skin, I love the enthusiasm. I think they may get tired of acne and eczema all day that figuring out auto immune problems makes their day :)

I have mine on my regular rotation and see him every 3 months. I also have SCLE and sleroderma limited to my skin.
Posted 6/30/2009 2:14 AM (GMT 0)

Im sorry I have not responded yet. I was staying out of town for my rheumy apt that I do every 2 months. We went to the zoo for 2 hours and I had on a long white shirt and spf 55 (highest spf I have right now). Despite all that, I ended up with a worse major rash on arms and malor on face mad I know I shouldnt have been there and I knew I was going to suffer but I needed to do this for my kids. Unfortunately my daughters rash got worse and spread slighly to the sides of nose along with the forehead and nose. She slept all the way home (3 hours) today.

Thank you all so much for responding. I have taken pictures of her fingers when they hurt, took a picture in march when we got back from AZ this is when the rash began and Im going to take another today. Im also going to let the doctor know what my daughter said to me when she takes the prednisone. She says "mom I need to take my prednisone now. You know what mom it tastes so bad but it makes me feel soooooo goooood!" cry   she said this in february and it litteraly (sp) made me cry. Last night she asked me "mom do you think Im allergic to the son?" What do you say to a little girl like this?

Thank you Patty. I know that early intervention could save her organs and I think it really scares me. I will have a hard time with keeping her out of the son but if she gets confirmed I know she will follow through with it if she knows it will make her feel better. Ill help her understand that when she is out what precautions to take. The sad thing is that she is a summer girl. Loves the heat and loves the sun. My boys are opposite they love the winter.

Patty, Lucy, Ginny, cured, and dbab thank you so much for responding and for the advice. I am going to print those pictures off and show him. I hope they show up ok. I think that would be a good idea to send her to a dermatologist first. I hadn't thought of doing that and would at least be a good starting point beings she's had the rash for a while. I just hope he does something this time. Im taking her dad with me to see her doc and Im taking the list of her complaints including the fact that she doesnt feel good every morning and can only get moving better after having a very warm morning bath. Again, I really appreciate everyone thank you.
Posted 6/30/2009 2:22 AM (GMT 0)
The prednisone can taste pretty awful if you can't get it swallowed quickly enough. Try putting it in a spoonful of yogurt or pudding in a flavor she likes -- then after she swallows it she gets to eat more to help get rid of the taste!

It's a trick I use if I have a sore throat or a dry mouth that I think might make the meds hard to swallow.
Posted 7/30/2009 3:00 AM (GMT 0)
Well took my daughter in to the doc and of course the malar rash was not visable but the rash on her forehead and nose was. She had the joint aches and told him of the other symptoms were she has 6 of the 11 criteria including the positive ana twice. He agreed she had arthralgia and said well we would not treat her until she had 7 of the 11 criteria. WHAT? I dont get it. She has pain. I dont want her to have damage to her organs like her mother. He said we'll monitor her but he didnt do labs. Im thinking I need to take her to another doc. My husbands better insurance kicks in on aug 1 and its pretty good. Its a ppo now where I would not need referrals. Any suggestions on what to do? Take her to a rheumy or another pcp? I also have 2 pics of two different fingers that showed redness and swelling. Also a pic of her malor rash.
thanks
Posted 7/30/2009 4:46 AM (GMT 0)
I highly recommend finding a lupus-aware rheumy that takes your new improved insurance. You find those docs by first checking out www.lupus.org and putting your zipcode in the chapter locator. Once you find the closest chapter to you, either call them or check their web page and see which drs are working with them. Those are the drs who know what lupus looks like (as well as other autoimmune disorders) and they'll get right to the root of the problem.

Additionally, if you read the sticky (2ond post on the main lupus page), you'll find tips on what to take to the rheumy and what to expect from the first visit.

Get closeup pictures!
Hope you some better help soon,
Posted 7/30/2009 2:18 PM (GMT 0)
WOW.. my pearl... this has brought back some memories for me... My youngest for two years complained of her knees hurting.. I took her to two DR... and they did tests and said... growing pains... I knew it wad going to be RA but they said no... she finally did outgrow it... I never remember them telling me anything about an ANA test at that time but now that I have Lupus.. it makes me wonder if this was going on with her back then.....

I hope your DD can feel better soon... Do you have a Children's Hospital near you? All the best to you both...
Posted 8/16/2009 4:21 AM (GMT 0)
Thank you so much everyone for the advice. So her update is that at her young age she is now going through puberty. I think that can explain why now more symptoms are showing up. I will get more pics Lynnwood and I'll check out that site. Im now trying to find a female pediatrician. There is one Ill be calling this next week. She also specializes in autoimmune diseases. Hopefully She is accepting new patients. Im also going to check out the new site. Thanks all.
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