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jordiesmom
06-11-2007, 10:26 AM
Hi all I am the mom to a 2yo girl. We are going for testing for lupus at the rumeitolgist. I will give a little history. She was born at 35 weeks due to to much amnio fluid and a infection that I had. She was fairley healthy for the first year, but was dx with a motor delay. She did not walk till she was 20 months old and wast in pt to help with that. We have had a mri to rule out nerological reasons and she is fine. This summer she went out into the sun for 10 min and got a VERY bad reaction. She had a rash on her legs, arms and face that and got very tired and week. She also has had issues with fatigue and sweeling in her feet and knees many times. She will also have a fever for no reason and it will then just go away.

I have looked up as much as I can, but I am nervous. I find that people with the condition are more helpful than info sites. Any information would be useful.
Have any of you been dx as a child?
Does that mean it wold be worse?

What can I do to help her now

lvarma
06-12-2007, 12:48 PM
hi,
I don't have any answers for you, but I just wanted to let you know that I am thinking of your daughter, and I am praying that she will be okay.

Please keep us posted on her diagnosis.........



lisa

Oluwa
06-12-2007, 01:48 PM
Hi Jordie's Mom,

I can only imagine how hard it must be on you, feeling helpless for your baby. I don't have any answers either, sigh.

My conclusion is perhaps earlier diagnose is better. I will never know if I would have faired better knowing earlier as my symptoms are not severe today. But early treatment is better. It would have saved me countless hours of wondering, what is wrong with me, feeling I was crazy, lazy, all in my mind...and etc...miles of road covered, going to and fro to the doctors. Unnecessary xrays, bone scans. A myraid of symptoms, but none all at once left me on that roller coaster.

Here I am today, 46 and doing alright.

Saysusie has a wealth of information, she will be back on the 18th from her post.

My current rheumatologist wrote out two prescriptions. One for Plaquenil and the other was:

Diet, eat well. (No sugar, or subsitutes. Splenda, okay)
Exercise.
Stress, minimal.
Sleep. Get enough.

I would omit any preservatives, sugars...eat whole foods, no alfalfa sprouts, avoid red meats. Play. Use sunscreen at least 30spf. I use 70.

And seek a second opinion. I know it is a tiny bit of info, but I hope it helps, a bit. I feel much better since taking Plaquenil and my malar rash is disappearing. I still have the pink red sunburn look which I cover with make-up. All but one bump has disappeared. For some, the red left completely.

When I was young, I believe my symptoms started out with hives and unexplained rashes. I remember having them when I was 10. I became allergic to metals by my teens. Pierced ears. Then the fatigue settled not so nicely, nor welcoming in my 20's...unresolved body aches was added in my 30's...followed by joint pain, direct muscle pain, malar rash and GERD. There are so many symptoms but these are my major ones. I also have Sjogrens Syndrome.

I dose with Ultracet for the pain and use OTC allergy medicine to stop the itching from it.

It is so hard to know the outcome, as Lupus is different in all of us and so is the treatment.

Keep us posted about Jordie's health and your thoughts, emotions.
Keep well, to you both..
Oluwa

Lis_B
06-13-2007, 09:10 AM
God Bless....I will keep your daughter and your family in my prayers.

akcdoas
06-15-2007, 08:41 AM
My son was born with Discoid Lupus. He is 5 years old now. I know if he goes in the sun for 10 minutes without a hat and sunscreen, he will break out. If you took your daughter to a Dermatologist they could give you answers on the rash. The best advice I could give you on any skin issues is DON'T go to your Pediatrician, go to a Dermatologist

Kelly

IloveHistory
06-15-2007, 01:02 PM
Hi Jordiesmom!

Welcome to the Forum! I'm really 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 and your daughter are in my prayers...

Keep well and God bless!

Saysusie
06-18-2007, 07:32 AM
The prognosis of lupus in childhood depends greatly on the severity of the internal organ involvement. Like with adults, if lupus is diagnosed early, treatment can begin and your child can do just fine. Children with significant kidney or other internal organ disease will require aggressive treatment. Even if this is the case, the child can do well with Lupus. Children with mild rash and arthritis may be easily controlled.
However, lupus is unpredictable for adults and children, and no one will be able to predict with certainty the long-term outcome for any one specific child. Success in the level of health and quality of life for any child with Lupus will depend upon a combination of careful health care, hard work, appropriate lifestyle changes and knowledge!
The severity of your child's lupus will be determined by many factors, most of which will be beyond your control. But, as I mentioned, there are some very important factors that you can control. Finding a good rheumatologist and following his/her instructions - making sure that your child takes her medications as directed, having blood or urine tests when requested, keeping all doctor appointments, and being very careful about avoiding too much sun.
Children have special needs and it is important that those caring for the child, i.e., parents and medical professionals, understand these needs. It is very important you, as her parents, understand about lupus, know the reasons for the prescribed medications and their side-effects (Treatment for childhood lupus is dependent on the degree of severity of the disease. The most important subject for most parents of children with lupus is dealing with the side effects of these drugs), and know what problems to promptly report to your daughter's team of doctors (pediatricians, rheumatologists, dermatologists etc.) If you have questions, please come here and we will do all that we can to answer them for you. Also, do not be afraid to ask her doctors, to stand up to them and to insist that they take your daughter's health care and your concern seriously. Be PRO-ACTIVE in your daughter's health care! A good working relationship with your daughter's doctors is one of the most important factors in the successful treatment of this disease.
If your daughter is diagnosed with Lupus, and since she is very young, she is going to rely on youto “fix everything” and have little sense of responsibility for her own self-care. While she should know that she has lupus, you don't need to spend a lot of time trying to explain it to her. Instead, she will need to understand that lupus is a disease, and that it's not her fault.. she will need to know that she didn't get lupus from doing something wrong, that it is not something she caught from someone, and that she cannot "give" lupus to anyone else. She will need to understand the need to take her prescribed medicine and to avoid too much sun.

Here is a website by mothers who have children with or suspected of having Lupus:
www.kidlupus.org
Here is another site with some good information:
www.lupusmn.org/Education/ Articles/KidsAdaptingtoLupus.htm

Please come to us at any time if you have any questions or just need support! I wish you and your daughter and your family the very best.

Peace and Blessings
Saysusie

jordiesmom
06-19-2007, 05:46 PM
Thank you all for the warm welcome and the support!! We went to the Dermatolgist and she too thought that it was a good idea for my DD to go to the rumetolgist(sp).

I have started a log book of her symptoms so that when we go I can have it for the doc. She still is having the sun issues and we are limiting her time out. We got a spf 60 sun block from the derm doc and it helps. Now that I have been watching more close, I have noticed fevers that come and go. Her legs get VERY hot at night too. Is this a symtom. I have been giving her kids advil when she has the temp, would bengay help her legs.
THANK YOU ALL

Saysusie
06-20-2007, 08:23 AM
I could find nothing definate about feeling heat in the legs. I know that many Lupus patients suffer from hives (uticaria). Urticaria is, sometimes, a sign of or precursor of, other systemic or general internal disease such as hormonal disorders (hyperthyroidism), SLE, polycythaemia, reticuloses, etc.
It usually presents with reddened raised skin or welts and are hot to the touch.
There is a condition known as "lupus Uticaria", most of these patients have deficiencies in certain blood complement components.

Some also say that heat in the legs may be a sign of a small blood clot. Blood thinners are given to treat this conditon, but it is important that you get this confirmed by a doctor.

I'm sorry I could not find more information for you. Perhaps someone else here will have some knowledge about this and will be able to provide you with more answers!

Peace and Blessings
Saysusie