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Posted By : Jingles1234 - 7/5/2017 4:06 PM
Hello,

It looks like my 4 year-old daughter has Lupus. We're still navigating getting an official diagnosis, but here is what we have so far.

Positive ANA (at 1:1280)
Sed Rate of 69
Mildly low WBC
Painful Joints (Primarily Knees)
Stomach Aches
Headaches
Redness across cheeks and nose that comes and goes
Rashes that look like sunburns and come and go

She also has Eczema, Chronic Hives and idiopathic anaphylaxsis which, from my understanding, is not part of Lupus.

Can someone help me with a starting point. I'd like to know if there is a staging process; like is this severe or mild. I've read that prognosis is poorer the earlier diagnosed and the more severe the case, but I'm unsure how they determine severity. I'd also like to know about diets and any other "good to know" information.

Thank you!

Posted By : Lynnwood - 7/6/2017 3:06 PM
There are many other things that present with a positive ANA besides Lupus, so don't use the Internet to choose a diagnosis! Make sure your daughter sees a good pediatric rheumatologist - these are the Drs that specialize in most of the diseases that include a positive ANA.

I don't know where you saw that the prognosis is poorer with early diagnosis - I've been a Lupus patient for over 15 years and never heard that. There is no "staging process" - Lupus is NOT a progressive disease, so one cannot definitively say it goes from one stage to the next.

Think of Lupus as an overactive immune system, a raging fire. Some days it might decide that the kidneys are foreign objects and attack them. A year later the kidneys might be fine and Lupus will decide to attack the toe joints and make them feel like burning acid has been injected into them. Lupus takes as many forms as there are patients, no 2 cases are ever alike.

Besides finding a Dr that will work with you for diagnosis and treatment, the basics are the same as for almost any disease. Healthy food, good hydration, regular moderate exercise, deep restorative sleep, avoid the sun, heat & fluorescent lights.

Do NOT take any supplements that say they "support the immune system" -- at least not unless a Dr tells you to. If it is Lupus, the immune system is already overactive, it doesn't need any support. Some people find that avoiding inflammatory foods is slightly helpful - I personally haven't been able to detect any differences here. (Although I do feel better on less sugar & less carbs, with more fiber & protein -- which is characteristic of any healthy diet.)

Let us know if we can help with any specific questions you may have!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Melissa D. - 7/6/2017 8:56 PM
As a mother I feel your pain and know the struggle you are going through. My son began presenting symptoms at a very young age as well, I'd say by age 8 I knew something was not right, I began having him tested for lupus and RA at approximately age 10. Doctors were very reluctant to "label" him with a disease no matter what his labs said and his symptoms were at such a young age. At 19 he was diagnosed with Lupus and RA, he will be 28 next week. I also was told when I began trying to figure out what was wrong with him all those years ago that the younger a person (meaning a child) is when diagnosed the worse their disease would be, I must tell you that has not been the case for my son, I'm not sure where that myth comes from. My son has not suffered any organ involvement per say, his disease has gone from SLE to NPSLE, meaning he has neurological involvement, but I do as after having lupus for 20 years. He does have the normal struggles all of us with lupus do but I would not say he has had any worse case because of his young age.

I would second the things Lynnwood stated in her post, seek a good pediatric rheumatologist, avoid things that say they support or boost the immune system, avoid the sun and fluorescent lighting, use sunscreen, etc.

Having a sick child can be very stressful and getting a diagnosis for lupus or any autoimmune disease is not a quick process hang in there. My thoughts and prayers are with you.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Jingles1234 - 7/7/2017 8:13 AM
Thank you both so much!

We have an appointment for pediatric rheumatology at the university of Michigan. Her immunologist is concerned and is trying to get her in quickly, so I'm hoping that we can get her in fast.

My husband and I both have autoimmune diseases (I also have Lyme) and have done well on a modified paleo diet in the past. The caveat has been that with his disease, he could not eat calcium or citrus. I was wondering if Lupus had any restrictions. We're going to go the modified paleo route again, I'm just trying to see if there's anything to avoid.

I saw that the prognosis was poor the earlier the onset of the disease for pediatric patients when I was reading medical journal research.

I'm nervous about prednisone and methotrexate with her being so young. For my husband, they did more damage than good.

Thanks, again, for your insights!!

Posted By : Tinkerbee - 7/7/2017 5:12 PM
"I'm nervous about prednisone and methotrexate with her being so young. For my husband, they did more damage than good. "

Where on earth did you come up with this? What doc would suggest this for a 4 yo?

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