Has anyone ever heard of this????

My niece started having these welts show up on her legs. At first they were kind of like hives, but they would swell up like golf balls, and they would dissapear the next morning with bruises in their place. They have continuesly gotten worse. Now going all the way up her leg and I believe she was having them on her arms as well. Her ankles swell up so bad she can hardly walk. The next day her legs are nothing but bruises. Now they are starting to blister up and turn to sores. My sister has taken her to the hospital, and to her Dr. quite a bit over the past couple of weeks where they run test after test. At first, every test showed that she was fine, and they said it was some very rare....whatever, now it shows that her immune system is working over time and attacking the healthy cells in her body. The Dr. told my sister that it was now beyond his area of expertice and told her she needed to take her to an infectious disease specialist at the hospital for more tests including tests to make sure her immune system is not attacking her organs.

I have never heard of such a thing, and I am very worried about my niece. Have any of you ever heard of such a thing???

It could be a number of things. Urticaria (also called Hives) can produce welts, bruising, and rashes that last for quite awhile, and in some cases the Urticaria can become as large as a Golf Ball or Silver Dollar. Typically, Urticaria is provoked by an allergen so I would question her mother to see if she is allergic to anything in particular such as food, latex, certain pollens, etc. However, without jumping to conclusions she could be having an immune response to something similar to Bullous Pemphigoid which is characterized by severe and chronic blistering and welting of the skin.

Here is a site with some good Dermatological information for you:

Dermatology: Skin Conditions

Look through it and see if anything resembles what she has. If you can pinpoint something that looks similar to what she has I can do some research for you and see what I find. I would need to know specifically what it looks like though as skin conditions often appear quite similar.

I would look into testing her for lupus. Even though you didn't mention that in your post I would assume they already did that.

I agree with the previous two posters... the way you describe it it could be auto-immune (like lupus) or allergic. I've spent 6 weeks in hospital when I was a 3 year old due to an allergic reaction which looked so severe doctors thought I had a rare tropical disease. It was similair to what you describe.

Juliet

I asked my sister if it was lupus and she said no. So, I am assuming they already did that. I have been all over the net and have not been able to find anything that matches this discription. She does not have any other symptoms. She is, otherwise, a healthy, athletic, 9 year old girl. They have done test after test and have found nothing other than her immune system is now working overtime to distroy healthy cells.

[edit on 20-8-2007 by mrsdudara]

[edit on 20-8-2007 by mrsdudara]

It started off looking just like Urticaria, but now they are blisters that are leaving sores. They ruled out an allergic reaction the first time they took her to the hospital though. After running a bunch of tests that showed absolutly nothing wrong with her they decided it was some rare inflamation of the fat cells......but apparently they were wrong.



[edit on 20-8-2007 by mrsdudara]

Re-reading through your first post I have noticed that you mentioned her ankles swelling a bit. Was this causing her any discomfort similar to Arthritis? The reason I ask is because there is a condition called Henoch-Schonlein Purpura, which typically occurs in ways like some of the symptoms you have described. It is usually a condition that arises in children who have recently had a respiratory infection and is basically a form of inflammation of the blood vessels called Vasculitis. I would also ask if she had any viral (like the common cold virus or any Rhinovirus for that matter) or bacterial infections directly before the dermatological symptoms occured. The immune systems response is generally varied in that it can be a mild or severe case of auto-immune suppression.

Alternatively, the fact that her immune system is responding to something if they have noticed a decrease in her white blood cell count would point to the possibility of an infection. The immune sytem typically only respondes to infections in most cases so it would typically indicate a foreign invader. If you knew the specific type of Immune system cells being eradicated I could be of more help. Specifically if the undiagnosed conditions is destroying Lymphocytes, B Lymphocytes, YO T Cells, CD$+ Cells, etc.

If you have other specific information or can find a picture on the internet of what her conditions appears like it would be easier to make some suggestions based on a pictorial representation.

I do not have any pics.

In regards to an infection, when the spots first started getting to the point that they took her to the hospital ( two days later ) they tested her blood and found that her white blood count was perfect. She never had a cold or anything. And now, two weeks later, her immune system is destroying the healthy cells in her body. that is really all I know at this point. She is being admited into the hospital tonight for more tests and to see if her immune system is attacking her organs.

Originally posted by DDay
I would look into testing her for lupus. Even though you didn't mention that in your post I would assume they already did that.

I was thinking the exact same thing. You need to see an immunologist (If she is under 18 a pediatric immunologist) IMHO. It sounds like an auto immune system issues based on what you have described.

What Jazzerman mentions is relevant as well. When the give you bllod values they often include what is called a "differnetial" The Diff as we say is a breakdown of the specific type of white blood cells they will go by names like lymphocytes, monocytes, stabs, bands etc) Sometime you will see the total white count stay the same but a change in the differential will clue you into an infective process.

I would also be interested in seeing if the did a test called CRP or C-reactive protine. CRP is a nonspecific test that looks for protines produced by bacteria. You don't kow what the bacteria is but you can detect it much earlier.

My thoughts are with u dude, hope everything works out fine for her, must be really scary for her.

Thanks guys. Im going to go read up on lupus a bit more.

Even though you said they did test her for lupus, these tests can be tricky and slow going. I know as I had a friend recently diagnosed with it and the first time they tested for it, it came back negative.

Has she recently had any vaccinations say for school? Something triggered her system and if she hasn't had a cold then it may be synthetic.

Don't have them give up. I am a watcher of Mystery Diagnosis and sometimes it takes just the right person to find the cause. Have them keep taking her to different people for testing. Sometimes doctors dont'tthink outside the box.

Hi,


Do you have any cats or dogs in the house? Bartonella takes many forms. It is a proteobacteria and does not show up on standard tests. Oh, and it's found that dogs carry it also, not just kittens and cats. All pets should be tested for this, it usually costs $50.

Here's a link: (kinda graphic images) Scroll down to the human symptoms:

www.natvetlab.com...

STM

Edit to add: And it's very treatable.

[edit on 8/21/2007 by seentoomuch]

I don't know why I didn't think of this before, but has she ever had test for Streptococcus Pyogenes? This particular bacterial infection can take the form of a Dermatological infection called Necrotizing Fasciitis, which is also commonly referred to as a flesh eating bacteria. Some of the original symptoms you describe seem to fit the bill, but I can't say for sure without actually seeing pictures of the patient. I am not trying to scare anyone into believing this is what she has, but the symptoms of this usually start with rashes, bruising, and develop into blisters typically on the legs and arms. It may also explain the lower white blood cell counts as the bacteria is attacking these cells. This is a very rare condition, but if Physicians haven't been able to deduce what is causing these external symptoms it may be worth checking into the possibility.

Also, have the blisters ever developed into yellowish and crusty skin lesions? Another common childhood condition called Impetigo, which develops from Staphylococcus Aureus or GA Streptococcus, could be responsible for these noticeable signs. It is a pretty common childhood and adulthood illness that can be easily treated with appropriate anti-bacterial agents.

Well, here is the update that I got. She didnt end up going to the hospital. The Dr. called last night and said that he had faxed everything over to the infectious diseases department at the hospital. They said they have no clue. They also said they want to do a biopsy. The pediatritian said "not just yet lets just keep an eye on it". BECAUSE she still has no other symptoms. They believe all her internal organs are just fine because she still has no fever, or anything else, not even a headache. They went ahead and took her off the antibiotic they just put her on thinking that, that might be why they started turning into blisters and sores, and also might be why it looked like the immuine system was in overdrive killing off good cells too. Another thing that might be worth mentioning, my niece says it doesnt hurt. I know that is a good thing, but judging by what her legs look like, that really does not seem normal.

So, now I guess its a waiting game. No one wants to wait, but no one wants to go cutting into her legs either. They ruled out lupus and most everything else because they said she would have other symptoms if that were the case.

Considering the pediatritian said they dont know, and the infectious disease department said they havent a clue, I think the decision was made to take her to every specialist they could, to see if they knew. An allergist, dermitologist, what ever else they can think of.

Well keep us posted anyway. If this does turn out to be something then you are bound to find an answer here with all the know how ATSers seem to possess.

Forgive me, the previous update was info that came from a relative other than my sister, and was partially incorect.

I talked to my sister, and asked a few of the questions that you all brought up. She said that my niece had strep prior to this showing up. Also, the pediatritian has not ruled out lupus, they just dont think it sounds like lupus, and it is definatly not an allergic reaction. Right now they are just giving it a couple of days, hoping that it will go away. She had a whole new crop pop up last night so it is not currently showing any signs of giving up any time soon. So, we are waiting a few days for now (not an easy task) and if there is no change she will go in for a biopsy.

Oh yes, and she clairified that the spots themselfs are a result of her immune system attacking her dermis.

Well, it is continuing to get worse. She had more spots show up, and more turn into blisters.

Something new though, she has developed a red freckley like rash on the front of her legs now, and it, too is spreading up her leg.

The Dr. called tonight to find out how she was doing, and said that he is going to contact that infectious disease specialists again and will call back tomorow with a time for her to go in.

Again, if anyone has any idea, or has heard of anything like this before please let me know. My neice is very uncomfortable at this point (to say the least).

reply to post by mrsdudara



Yes. In fact, ten years ago it happened to me.

I am pretty sure it was a reaction to an unspecified additive in a brand of cookies I ate.
It was pretty bad, but it went away after a few days.
Then a few years later the same thing happened - and it also went away. (Only, the last time I was already familiar with homeopathy, so I could speed up the healing.)

Bottomline: do not worry. Not too much, anyway.
Really.


P.S. You're damned right about "they" not having a clue.
Which is why I never bothered to check up with "them".

But I stand by my words: do not worry.





[edit on 23-8-2007 by Vanitas]

[edit on 23-8-2007 by Vanitas]

reply to post by mrsdudara

It was a few days ago since I checked this thread. I'm very sorry your niece doesn't feel better yet. I can't contribute anything usefull in diagnosis etc. But I do wish your niece all the best and hope she will get well soon.

Juliet