Introduction

[cargio]

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:) Hello,

I am a single parent of a nine year old daughter that has juvenile idiopathic arthritis. Now our doctor has called us to tell us that she is considered a probable lupus patient and has given me a list of syptoms to look for. I guess she has 3 out of the 11 criteria and if she develops a fourth symptom then she will be considered to have lupus.

This is all new to me and very overwhelming. I am looking for another mother of a younger child diagnosed with lupus to talk to. I have questions like, "What do you do in the summer to keep your child safe from the sun?" and "If she breaks out with the butterfly rash - how long will it stick around before it disappears?"

I'm frightened for my daughter but trying very hard to just focus on the present. We are putting our faith in God to help her.

Is there any advice for a mom just learning how to care for her ill daughter?

Carrie

[halfpintfl]

:wave: Hi, a warm welcome to you and to this board. As you scroll down on
the message boards, there is a section called" Family and Friends" and I
would hope that you could get a lot of help there.
As far as your dr. handing you a list, and saying that if your daughter has one more of these symptoms, then she is considered to have lupus, I will be very
honest with you, I have never heard of someone being diagnosed like that. But,
remember that I am no expert either. Maybe he has more lab tests on her than
you have mentioned or something, I am just confused as to how he made that
diagnosis.
I know that if you keep a watch on this post, there will be ladies that will come along that have more knowledge than I do, and will be of more help.

be well and keep posting :nurse: ;)

[StevieM]

Hi Carrie,

I am sorry to hear that your daughter is being considered a probable lupus patient, but I am equally pleased to hear that her doctors are at least on the ball enough to have noticed the signs.

My daughter was diagnosed with JIA at the age of 8, as time went by she gradually showed more signs of lupus....however, her doctors all dismissed lupus as a possible cause! She is now 10yrs old and in the middle of lots of appointments and treatments as she has been diagnosed with SLE, lupus nephritis, raynaud's and APS.

If you want to know more details about what happened to us, look for posts on this section about Robyn, or feel free to ask :)

I would just like to say " I understand totally how you feel".


Please feel free to email or pm me via the site, with any questions you may have.....or just post again and I will reply.

Take care,

Stevie

[Lily]

Hi and a big welcome to you and your daughter!

I'm sorry to hear of her problems and the possibility of Lupus. StevieM is right in that it sounds like her doctor is on the ball and at least is following her closely. That's very important when Lupus is suspected, especially in the young, because things change constantly with them and over time they do often develop new symptoms.

I'm sure that her doctor has run many tests on her before he mentioned the possibility of Lupus, he must have good reason to suspect it. I would however try and find out just what tests he's run and perhaps we can help you understand them better. We arent doctors, just patients who are familiar with Lupus and it's many faces. Here you will find a great support network to help you through this worrying time.

Meanwhile I'm glad you found us and you are in the right forum, we have several mothers here who post enquiring about their children. And you are not alone in your concerns and your hunt for knowledge.

I hope you enjoy the boards and I know you will gain much support and knowledge here.

love
Lily

[cargio]

Thank you all for your responses. It is so comforting to know that there are people out there able to hear me. I'm in the process of getting a second opinion but we've had this scare before (when she was three). They dismissed it then because of her age but told us that we would have to keep an eye on her as she grows.

Thank you again for the comforting words. I will keep in touch and I'll try out the "family and friends" section.

God bless,
Carrie

[Clare.T]

Welcome

I am sorry to hear about your daughter. I hope you can inform yourself about lupus and how it is diagnosed since information really is power.
I hope your doctors will communicate better with you and you can talk more easily with them.
You will be able to see if the right tests have been done for example and be pro-active on her behalf.

Have all the blood tests been done and are there any antibodies specific to lupus ? Urine tests ?
I imagine that when there is a connective tissue disease already present it could be hard to tell one from the other if there is nothing specific, but the skin could be a very strong indication of trouble brewing if not already diagnosable.

Some doctors will treat when there are only very strong suspicions using Plaquenil in the hope of easing symptoms and to get the disease fast under control.


Kidney disease is more common in childhood lupus but children respond speedily to treatment. Of course, as with adults the sooner it's treated the better.


This pediatric section was established to deal with the special issues of lupus in childhood so that parents could find each other more easily.

Let us know how you get on and the best of luck

:luck: :luck:

Clare