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This is my first time posting, I need some help and guidance in regards to my 2-1/2 year old son. He has been in the hospital numerous times for extended stays over the past year. It started when he was a infant and always seemed to be in some pain or discomfort. His symptoms would come and go. He has recurrent fevers, unusual rashes, enlarged lymph nodes all over his body that have stayed large, sometimes very high ESR and CPR, anemia, high blood pressure, blood in his urine, very high BUN levels, very high LDH levels, but a negative ANA. We have been sent to sooo many doctors and specialists that I myself am getting exhausted with it. They all expect you to remember the finest details and look at you as if you are crazy if you don't answer right. It is the most frustrating experience!
I have heard several 'possible' diagnosis over the past year. I have learned to not get too upset over them as they always lead to a dead end. Just this past weekend my son was outside and he started getting a rash on his face. By the time we went indoors he developed this 'butterfly' rash on his face. This rash lasted most of the day and is still there but very faint.
I called his pediatrician who immediately booked my son into a Rheu. doc for follow up for lupus. But I always thought he could not have lupus due to a neg ANA result. Is it possible he has lupus afterall? His great aunt has had lupus since she was a child also.
Any help or additional info would be very much appreciated, I am almost at the breaking point!
brookiebear

I am so sorry you and your child are having to go through this. I did want you to know that I have had lupus for sometime, confirmed through bloodwork and other tests. I do not test positive for ANA. So it is possible to have lupus this way. Not very common, but possible.

Many hugs and I hope for a quick diagnoses. Lupus can take many forms in different people. I have found as for telling doctors about the symptoms that pop up. Keeping a journal seems to be the best way to do this. Write down what happens, when, and other details.

Good luck and he is in my prayers
Dear brookiebear21,

In "Ro lupus" and "SCLE" [subacute cutaneous LE] also, ANA can be negative. Have the drs. tested for various autoantibodies---e.g., anti-Ro, anti-La, etc.?

Also, not all people with full systemic lupus have a positive ANA. Figures vary on this: I've seen 95% and 97%. Point is, there are *some* cases of full SLE where ANA is indeed negative.

What do his rashes look like? Has a dermatologist or dermatopathologist seen them? Tested them? I had a nonscarring, nondepigmenting, nonpruitic (non-itchy) lupus-specific rash typical of "SCLE" for many years. It looked like perfect circles that gradually spread out and lost shape, before disappearing. It affected mainly my back and upper arms. But I have NEVER had a positive ANA...

Has he seen a nephrologist (kideney specialist)?

I just re-read your post & realized you have a rheumie appt. booked. Good! I hope you have a truly useful appt. The rheumie will evaluate your son per the "4 of 11" ACR criteria: see the "sticky post" at the beginning of the board. If 4 of 11 criteria are met, a positive ANA would NOT have to be one of them---it could be some *other* four that create a Dx of lupus.

I hope you post back anytime you feel like it. With my very best wishes to your son & to you, with hopes that you get answers very quickly, from Vee
Thanks so much for your reponses! It has been hard because my son has all these symptoms and yet we get nowhere. There are times he is a happy little boy who sleeps wonderfully and is very content with no fevers or problems. During these times I fool myself into thinking that he is fine, even though I know something is not right with him. I guess it's mothers instinct. I have three other children who are all very healthy! During his 'bad times', he wakes up 10 times a night in some sort of discomfort or pain.
The nephrologist was our first specialist. She confirmed the microscopic hematuria but could not give us a reason for it happening. We continue to see her but she cannot offer any answers, just that his BUN has always been very high and his creatinine is within normal limits. She believed something was going on as his BUN was always high.
When he was admitted into Sick Kids they did tons of tests, found that he had enlarged lymph nodes in his chest and stomch, one of which was over 1.3 cm and said he was having a hardening of his spleen. His spleen was also quite enlarged at one point, and he his lymph nodes have always been very large in his neck, and groin area. They always said that they felt there was something going on in his whole system, but nobody could pinpoint what that was.
My child can go weeks being absolutely happy and fine, then he gets rashes, he's had target lessions, and even mouth sores that are accompanied by a fever that he can't shake sometimes for two weeks. It's like a cycle with him. His skin rashes previous to the butterfly rash were always bright red, disc shaped, irregular on his arms and back. They come and go. He has had target lesions, (as called by his doc), and most recently was the butterfly rash. He started the rash when we were outside and it just kept getting redder and larger until it covered both cheeks and nose. it was bright red.

He goes March 17 to a reumy doc. and i am just hopeful that they can solve this with my child soon so that he can start feeling better. All i want is some relief for him.
Thanks again! Please post back, this has really helped
It sounds as if you are heading in the right direction, which is great if you can get this pinpointed early in his life. Looking back to my childhood, my mother and I can see times where we wish someone had suggested I be tested for various problems. I was a sickly child. My mother and I can laugh about it now. She said the other night she used to tell her friends I was such a good child but she wished I wasn't so sickly. For a long time she she wouldn't believe me when I said I didn't feel good. :rolleyes: Now she just laughs and says she wishes she had believed me more. I guess she thought I was trying to get out of going to school.

My lupus affects my kidneys. I do have a few skin problems but not as much as compared to others. So I am no good for advice about symptoms but I am here for moral support. I know when I was going through the beginning stages of trying to find out what I had, it was a lot to take and emotionally draining.

I am here if you need any support.
Dear brookiebear21,

The phrase "target lesions" caught my eye. Do these scar or depigment your boy's skin? Do they appear on areas exposed to sunlight?

My rashes started out initially looking like raised mosquito bites, size of a dime or nickel, barely itchy---every 3 months, or so, for 4 years. Then the same raised welts appeared but would "morph" into almost perfect circles whose borders gradually expanded outwards a bit irregularly before fading---about every 3 months for 4 MORE years.

Because bloodwork done locally was unremarkable---except for anemia---no answers were found, despite biopsies by local dermies and consults with rheumies and other specialists. I finally went to a Manhattan rheumie, who took blood & urine samples, but also sent me to a dermatopathologist for one more biopsy. Bingo. The new punch & two old ones I had sent [labs keep them---weird, huh?] were "hideousy positive" [his words] under immunofluorescent testing.

So, if your boy's rashes stick around long enough, perhaps a specialist *might* want to test them.

Pictures of annular ( = circular) SCLE rashes are on the Internet, on various medical sites. You could find these with your browser. There are other annular rashes, of course---but the word "target" roused my curiosity.

Do you live in a sunny climate, where he gets plenty of exposure? Or, possibly, has he taken any medications that *might* be inducing what's called "drug-induced lupus erythematosus"?

Until later, thinking of you! With my best wishes to you & your son, from Vee
Hello again,
This is remarkable. How you described his 'target lesions' are exactly as I would describe my son's:

'size of a dime or nickel, barely itchy---every 3 months, or so, for 4 years. Then the same raised welts appeared but would "morph" into almost perfect circles whose borders gradually expanded outwards a bit irregularly before fading'
That is exactly what happened. The first one he ever got was on his knee, it was last summer after he was in the sun, he was wearing shorts!!! That part never occured to me until now!! Also, he then got them on his face and hands! After he was in the sun! When he got these lesions they put him in the hospital as they thought he had 'steven's johnson's disease', which of course he didn't have. It stumped the doctors, they said they were definately target lesions but yet they couldn't tell me why he was getting them.
And the thing that amazed me about them is they were perfect circles and the borders of them would expand outwards still in perfect circles.

I feel somewhat positive after reading your post because I feel like I am getting closer to solving this mystery with my son. My biggest fear has been not being able to help him and give him some relief to the times of discomfort that he feels.
So if these lesions and rashes are induced by the sun, does that mean I should be limiting the exposure my son has in the sun? Is there anything other than sunscreen that I can put on him? I live in Ontario, so we are almost over winter and the one thing my doctors could not figure out is why these lesions have gone away, but thinking back he hasn't had a lesion since last September when he was outside. This past weekend with the butterfly rash was the first time he has been out in sunny conditions for more than 15 minutes. I don't know if this has any importance or not, but I feel like it somehow fits now with his rashes and the timing of them.
Thanks so much for all your help and support!
Dear brookiebear21,

I STILL encourage you to do some research on the SCLE subset (and all other subsets you can find), by searching the electronic medical websites for articles, stats, and pictures.

Why? I live a short 24 miles out of midtown Manhattan. You'd have thought they'd heard of this form of lupus way up here, right? Well, no, they had not. The very first dermie I saw has both a Park Ave. & a suburban practice, and is very highly regarded. I left a vacation early one year (Florida! :D ) to see this dr. Despite biopsy results that were 100% "correct", this dr. blew the Dx...

...as did the NEXT 3 dermies I saw... And "ditto" with the multiple GP's, the neurologist, the urologist, the gastroenterologist, and the rheumatologists I saw locally.

The problem with SCLE seems to be that drs. (1) do not recognize the rash by looking at it, then disregard the biopsy results, which alas may show only VERY SUBTLE cell alteration; (2) fail to ensure the testing lab does full immunofluorescent testing on the sample; (3) have never heard of the subset, even though it was first described back in 1978; and (4) try to apply the ACR "4 of 11" criteria that applies to full-blown *SLE*.

This last item, #4, is critical. I was a "4" at point of Dx, as many people with SCLE are---and that was WITHOUT a positive ANA. Yet they'd see that negative ANA and rule out ALL lupus. Once you read that ANA is negative in upwards of 30% of SCLE patients, you see how you CAN be negative yet still have the disease subset. The impact of my "non-ANA" on diagnosis (non-diagnosis!) was PROFOUND.

By the time I hit the office of my new rheumie, I'd actually met a local woman who has the same subset: I'd encountered her in her place of work, a total fluke. Her co-workers saw my arms and ran to fetch her. We looked at each other's rashy arms and cried like babies. She'd also had a tough time but was sent to a teaching hospital expert and he "got it" right away, once she made it there. I took a lot longer to get answers, alas.

I'd also found pics on the Internet. So I had that random encounter plus my Internet pics to toughen my resolve. Instead of being annoyed, my new rheumie was amazed, bemused, very kind, then very quick to act.

Obviously, all of what I write here is anecdotal, and I'm surely no doctor! But it does make sense to me to share this with you, given how hard these things are to track down. SCLE symptoms can actually extend through the entire SLE range, so the disease can be serious, plus your son has had kidney findings. (FYI, I had hints of kidney problems, way before Dx, but they turned out to be only stones/grit, causing blood & once also an infection. My kidney function tests done in the hospital were normal.)

Also, additional potentially serious problems become more likely with SCLE (SLE also, of course), like vasculitis and antiphospholipid syndrome, plus all the OTHER organ concerns that lupus can bring.

So do try to browse: look for dermatological medical websites. Then you could simply wonder aloud, politely, if one of the SUBSETS, such as SCLE, might be responsible, what with those funny "target lesions" & all... You might say you "know of" several others who have had them.

All my best wishes to you, your little guy & your entire family. Sincerely, Vee (P.S. I hope you keep posting, as we'd all be so happy to pitch in whatever ways possible.)
I have looked up what you have suggested and there is a lot of reading to do, which I plan to further investigate before i go to the rheum. doctor. I have some further questions for you, if you don't mind answering them?

Jordan has had an elevated ESR done during his times of being unwell, would this also somehow detect this form of lupus? The other test to check for inflammation around his heart also came back extremely high and he has had high blood pressure in the past. Have you also had similar findings? This inflammation could account for these findings?

Jordan is only 2 years old, it is so hard to know what is wrong and what is bothering him. He has a constant low grade temp that spikes during his times of being unwell. Would these things also be true of you? Did you ever have lymph node or spleen enlargement?

These rashes that you described on your arms, how often were you getting them? Did you get only those types of rashes? When my pediatrician saw Jordan's target lesions, he knew immediately it was a target lession but said he hasn't seen anything like it before, he himself even went out to purchase a digital camera to take pictures of the lesions for further study. The pictures I am now finding on the internet resemble what jordan had. I feel somehow more confident and determined in my resolve.

Any specific questions that you feel I should bring with me to the rheumy doc. I have learned from various other doc's appt's that the more prepared I go with questions and a better understanding of the illness the better I feel leaving their office. So anything that you feel is important to ask would be very helpful. I honestly cannot believe the constant battle it has been to get help for my son. It is very disconcerting, but I have to have faith they will eventually understand what is happening with him. Healthy kids do not have these unexplained rashes and target lesions and everything else that has been happening.
Thanks again!
Dear brookiebear,

FEVER: I've had numerous periods of prolonged low-grade fever, starting way back in my early teens. With these, I typically had lots of "bone burning" (pain along especially the long bones of arms and legs) and painful joints.

LYMPH NODES: I've not had any swelling since early childhood. It would be common, though, in lupus: Dr. Wallace says its seen during exams in 50% of lupus patients at some point.

TARGET RASHES: I got these about every three months for 8+ years. I'd had other rashes in my life, the worst being a blistery, horribly itchy thing that covered much of my body. My current rheumie suspects it *may* have been a bullous lupus rash. But the target lesions were what I got as I felt progressively worse on other fronts: fever, pain, fatigue, migraines, urological & GI problems, anemia, etc. At first I saw the RASH as the problem; but as other things got worse, I came to view it as more of a symptom.

HEART and SPLEEN: Several of my drs. have thought I have mitral valve prolapse. Inflammation (sounds like pericarditis, maybe?) is of a different order. Ditto with spleen. When I was very young, I had pneuminia and then what was thought to be encephalitis and spent months in children's hospitals. I still wonder if those problems were connected to where I ended up, but I'll never know, really.

ANOTHER THOUGHT: Do you have a really good relationship with your pediatrician? If you do, you could perhaps send him some links to the rash sites you've found and ask him if he sees a strong enough similarity to talk to his dermie & rheumie colleagues. If you think this wouldn't muddy the waters any, that is... Maybe you could jump-start some medical rethinking in advance of your son seeing the rheumie. Neither my local GP, city rheumie or city dermatopathologist minded my web printouts, but some doctors might.

Anyway, within the next day or two, I'm going to be out of town again for awhile, but I'll sure be keeping my fingers crossed for you guys! I'll look forward to learning how you are doing. All my best, Vee
Dear brookiebear,

PREP FOR APPT: (I had to run out before getting to this question). You could start with (1) list of your little guy's symptoms & any meds, with dates, duration, etc.; (2) a brief list of his entire medical history; (3) copies of all available tests & bloodwork results; (4) pictures (your pediatrician took some, you said; and maybe you have, too)---just in case he doesn't have a rash when the rheumatology appt. rolls around.

We'll all be watching for your updates. Thinking of you, Vee
Thanks so much for all of your help, wisdom and support. I have my pediatrician appt tomorrow and I am armed with my latest pic's of my son's face. Seeing the pic's are quite startling. I have tried searching different rashes and finding another explanation for the cause of his butterfly rash other than lupus, but everything I can find points in the direction of lupus. And I have to say I am very discouraged by the lack of information on lupus pertaining to kids.
I have done a tremendous amount of research and feel much more prepared for my upcoming appt's. I am hopeful that someone will now be able to help my son,
Thanks again!!!
Well, doc's appt wasn't too successful. He is very encouraging and helpful but I didn't get the answers I wanted. He told me that my son 'looks really good', which he said is frustrating because some doc's look at him and think 'there's nothing wrong he looks good, is this mother telling the truth', and then they see the pic's of his rash and look at some of his blood work that tells them there is something going on with my son, but many doc's feel that since he looks so good that he will outgrow it. What do kids with Lupus look like exactly? My son is very pale, falls asleep on the floor while we are in the doc's office, and they think that is the ideal picture of a well child?? It is so frustrating!
He did say that Lupus is 'possible', however he has tested negative for the ANA test and other complement tests they do for lupus. He also said that there are different forms of lupus that may also produce negative results but are extremely rare. He said that the rheumy doc next week will be able to tell me more, and he hasn't had very much experience with Lupus because it is so rare in children, especially boys.
He also said that my pic's of my son's face are very dramatic and do tell a story of what is going on with him. I am to email them to him today so that he can forward them to different specialists and maybe they will have an ideal of what it is.
So here I am again, at a standstill. And I don't know what to do about it. I am going to email him the pic's today and hopefully some doc will have some ideals.





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