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Old 05-28-2006, 11:23 AM   #1
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Childhood LUPUS HB User
Questions about Childhood Lupus

This is long so please bear with me.

My daughter is 11 years old and has many symptoms that seem as if they may be Lupus. Has anyone had experience with childhood Lupus?

My daughter had a positive ANA (1:160) with a homogenous pattern at age 6. She was tested again later that year by another doctor. Again, it tested positive but he did not give me the results (titer and pattern). She was tested again this year at age 11. It was positive. I do not know the titer but this time the pattern was speckled. Is it normal to change patterns? Is this significant in any way?

Since infancy, my daughter has had all types of unexplained rashes (not diaper rashes but rashes on other parts of the body). She was hospitalized at 1 week for an unexplained fever. She had RSV type illnesses several times as an infant and toddler. At about 3 she started getting sores on the side of her mouth all the time. Because of these sores, she now has permanent scarring on the corners of her mouth. At around the same time, she started to complain about tummy aches on almost a daily basis and tingling in her toes. Later she started to complain that her legs, fingers, and even her head had the tingly feeling. She has also always had dry patches of skin on the face, parts of arms, and legs and sometimes little raised bumps with it.

Around 4 she was bit by deer ticks (a nest of them). She broke out in a rash all over the body. The rash was round, red patches all over the body. We were told it was not Lyme Disease. They did blood work to make sure and said it was negative. She was bit again later that same year with the same type of reaction, only not quite as severe.

From about that time on, she also had swollen lymph nodes on a regular basis. It has only been recently that the lymph nodes have started to go down.

She gets mouth sores, sluggish for no reason, runs unexplained low grade fevers, suffers pains in arms legs and shoulders. The pains come and go without rhyme or reason. When she has them, she may be unable to walk or use her arms. Most recently she has had pain in her right foot and ankle. The pain has been present for lmost 4 weeks now. She is unable step down with her right foot at all. The doctor thought she had a stress fracture but the XRay did not show one. He ordered an MRI, it also did not show one but it showed some thing that is consistent with a connective tissue disorder.

She has also experienced bouts where her entire body is tender and she is in excruciating pain and will not let us touch her. She says even her skin hurts.

She gets headaches a lot, dizzy spells, and sometimes complains that her chest hurts when she breathes. Her fingers and toes get so cold they turn blue and hurt. We carry hand warmers, gloves and socks in the car for her. She gets red patches on her cheeks that alomost look a little raised and they some times have white marks going throhg them like scratch marks or something. She sometimes has a rapid heartbeat and/or protruding pulse. She has suffered with urinary incontenenace for about 3 years.

She had allergy testing and tested highly allergic to everything they tested her for (including foods - fish, shell fish, soy, dairy, treenuts, and peanuts, etc.) She under went allergy shots but her symptoms seemed to get worse with the shots. The pains in her arms and legs started coming more often and lasting longer while receiving the shots. The allergist was insistent that they were not related but she actually improved when I decided to discontinue the shots. Her allergy symptoms even improved when I stopped the shots.

Sometimes these symptoms subside, but return later. Sometimes new symptoms arise.

Her pediatrician just refers us to a specialist for every thing. We've seen just about every specialist in town. The neurologist suggested Lupus and was the first to run the ANA. He really thinks it is Lupus but said it takes time to get a diagnosis. The pediatric rheumatologist said he had never treated anyone for Lupus and treated us as if we were making this stuff up. He said the pains are probably just growing pains and will go away when she gets older. Now we are with an orthopedic doctor (the second one) and he is saying he thinks it is Lupus. As an intern, he did his rounds in Rheumatology and said it looks like Lupus to him. We are waiting to see another rheumatologist.

Does this sound like Lupus? Are there other illnesses that might share these symptoms? How can I help my daughter get a firm diagnosis so she can get treatment? Is it normal for the ANA pattern to change from homogenous to speckled?

Any advice will be appreciated. I am tired of each symptom being treated individually and doctors acting like there is nothing wrong.

 
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Old 05-28-2006, 04:19 PM   #2
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Re: Questions about Childhood Lupus

Hi. In your shoes, I'd do just what you've done---look for another rheumie. On the age question, I pulled out my lupus hardcover & checked for age of onset &/or Dx. Dr. Daniel Wallace writes that 80% of those Dx'ed are between 15 and 45, but he notes that infants can be born with it (the neonatal kind) and he's aware of one person Dx'ed at 89. So apparently lupus can happen prior to age 15.

Sorry, but I've never read anything about ANA changing from one pattern to another.

On "growing pains"---I was told that, too, at age 13. There's a bit on this subject in one of the "sticky posts" at the top of the Board. Look at the 2nd half of the "sticky" titled "Criteria to Diagnose Lupus", for a list of "alternative criteria" developed by Dr. Graham Hughes, a world-reknowned British rheumie. He lists things common in the younger years in people who later on are Dx'ed with lupus. Right off the bat, #1 on his list is "growing pains".

I had vrs. things while young, too, that now I see in a different light. But
I don't know whether I had enough to be Dx'ed as an early teen, or even somewhat later on, either. (I was Dxed with the SCLE subset at age 47.) Or is it instead that certain things tend to appear young in people who LATER have more flat-out classic lupus symptoms? (I don't know...)

Maybe you can find the book in which Dr. Graham Hughes speaks to this subject. Plus there are other books out there: Dr. Daniel Wallace & Dr. Robert Lahita are two other rheumie/authors whose books are available in most bookstores & libraries.

I hope there's something here that helps, and that your daughter & you get better help from the 2nd rheumie you are seeing. I HATE it when I read people's accounts of talking earnestly and honestly to drs., only to be met with annoyed disbelief. My heart goes out to you two on that---I got a lot of it, too, and it's awful. But you moved right on, which is the best response to such nonsense.

Best wishes. I hope you keep posting. Sincerely, Vee

 
Old 05-28-2006, 06:11 PM   #3
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goldenwings HB User
Re: Questions about Childhood Lupus

Hello there,

Just to add more to what our Vee has said. The main thing that got me annoyed is the comment about "growing pains" by the doctor. Taken overall he is saying that none of the symptoms your daughter shows are for "real" because she is young and what she is going through is part of growing up. May I say to me this is utter rubbish, because of all of the other problems she is having. This shouldn't be dismissed by this person in this way. It is just one of the important criteria used by Dr. Graham Hughes and is accepted as one of the things that is discussed because it is so relevant. I was a patient of Dr. Hughes for a long time, he is a world renowned specialist of lupus and certainly is respected for his work both in the UK and all over the world.

So many of the things you ask and tell us about your daughter's symptoms definitely, in my opinion, add up to a lot of the symptoms that lupus patients present with. Just my opinion as a lupus patient of over 30 years, and not a medical opinion I hasten to add. I was "officially" diagnosed at 16, but I had had lots of problems before that which when added up enabled this diagnosis to be made very quickly. I was young too, but not as young as your daughter but I was unwell before the age of 15.

So many things you speak of add up. For instance, insect bites in lupus patients. They usually cause blisters and get infected very rapidly, they need quick medical treatment as opposed to just being itchy and having applications of topical creams and being trated by the patient themselves. Problems with hands being cold - sounds like Reynauds disease to me, which again is an illness that a ot of lupus patients have too. Look into this. Her facial skin problems could be discoid type lesions, which is another type of lupus skin rash. A lot of the things you speak of sound very familiar with regard to lupus symptoms.

Yes it can take time to get a diagnosis of lupus which is extremely worrying for patients. My own diagnosis was given within about 4-5 days though, I was lucky in that respect. Thing is if the suggestion is being made by more than one doctor that it "might" be lupus, and the history of your daughter's symptoms point to this, then all of the necessary blood tests and physical examination and history taking has to be carried out soon. The paediatric rheumy needs dismissing, and you need to find another one. Never settle one anyone who you just don't feel comfy with or who is making you feel that it is "all in your daughter's head". I know it is difficult to change doctors but your daughter needs and deserves the best care, and as this particular doctor isn't even prepared to look into things for her, then he needs to go in my opinion.

Regarding the ANA, yes it is an extremely important test but it can also be positive in other autominnune illnesses such as scleroderma, Sjögren’s syndrome, Raynaud’s disease, juvenile chronic arthritis, rheumatoid arthritis, antiphospholipid antibody syndrome, autoimmune hepatitis, and many other autoimmune illnesses. For this reason, lupus can be tricky to diagnose correctly. Because the ANA test result may be positive in a number of these other diseases, additional testing can help to establish a diagnosis of lupus. The doctors may wish to run other tests that are considered subsets of the general ANA test and that are used in conjunction with patient symptoms and clinical history to rule out a diagnosis of other autoimmune diseases.

You are doing the best you can for your daughter by being persistent and by asking and asking questions. Never accept anything that is said if you have any doubts whatsoever. If you don't understand something, ask and ask again for an explanation until you are satisfied with the information you receive.

I hope that the above information helps. There was a lot of information given by you and hopefully this has given you some answers to your questions. Sometimes it takes a long time to sort things out and to type for any length of time is difficult for me personally. I have answered as much as I was able to I am sure others will be able to help further. I do hope that you continue to come here with any more questions and whenever you need to just talk to someone. Everyone here is so very helpful and supportive and we all know how it feels to be going through lupus and all of the emotional issues that arise too.

I think you are a wonderful Mum by the way.

Take care.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 05-28-2006 at 06:27 PM.

 
Old 06-06-2006, 09:36 PM   #4
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JANICE LAZURE HB User
Re: Questions about Childhood Lupus

Hello in KENTUCKY
Our daughter was recently diagnosed with SLE/LUPUS and she is 11. She also has other auto immune problems/ evans and alps. We found our Childrens Hospital here in Calgary to be fast,compasionate and efficent at diagnosing and treating. Is your doc a pediatric specialist? We see a Rhumy, Hemo ,Ped and our own Gp every 3 weeks right now with blood work every week. Our daughter is on Plaquenil, Imuran, folic acid and prednisone- that we are weaning her from slowly. Blood work is so important but so is comunication! We were told that a recent school vacination could have been a trigger for these blood disorders.
I'm so sorry your daughter is going thru this but you are a great support for her. All the best.

 
Old 06-07-2006, 03:56 AM   #5
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goldenwings HB User
Re: Questions about Childhood Lupus

Hello Janice,

Welcome to our forum, but sorry it is under these circumstances. I am so pleased that your daughter has the good fortune to have such excellent medical care. As you say communication is of paramount importance and the care and attention you are giving is wonderful.

I have had SLE for over 30 years, I was diagnosed when I was 16 but was unwell for a while before that, so I do know what it is like to have such an illness from a young age. I also know how important it is to me personally to feel that I can speak of what is happening to my body and to have an input into discussions and treatment with medical people. You have found such a wonderful place here to come to share what is going on with treatment, to be able to ask questions and just generally feel a part of a caring group.

All information I give here on the forum is only from personal viewpoint of course, as I do a lot of research into SLE and associated problems. I don't speak from a medical viewpoint.

One thing I wanted to say was that although it is theoretically possible for a patient to develop lupus from a vaccine, it is a very rare occurrence and probably happens in no more than one out of several thousand genetically predisposed persons. I know you said that it stated "could" have but I wanted to mention this so that you can look further into the history of your daughter being unwell and maybe come across more information.

I know that actually knowing what "might" have caused the medical condition doesn't change anything, but to have as much informtion to hand is so good, because then when data is collected, all of these facts can be compared worldwide and more studies and research done on the basis of it.

Please come back if you have any question at all. Give your beautiful daughter a very gentle ((((hug)))) and thank you for being such a caring Mum.

Take care

goldenwings
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Last edited by goldenwings; 06-08-2006 at 10:32 AM.

 
Old 06-07-2006, 05:19 PM   #6
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Re: Questions about Childhood Lupus

Janice, Just wanted to say HI & wish your daughter & you the best. I'm so sorry she's gotten the Dx so young---but very glad she's getting the important care she needs to reduce odds of complications. I hope you log in here & post as the spirit moves you... Sincerely, Vee

 
Old 06-09-2006, 07:04 PM   #7
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kyle254 HB User
Re: Questions about Childhood Lupus

Hi,

I am new to this form and I also have a daughter that is 11 years old and has lupus. She was diagnosed last May 2005, when she was 10. It started with a weird rash that she got and she had pain everywhere, her hands, feet, shoulders. Her doctor had her SED level tested (inflammation) and it was very high. She immediately told me to setup an appointment at Boston Children’s Hospital. I have to say my daughter was diagnosed in 1 week and put on medications. It taken a year to get her pretty managed. It was the hardest year of my life. If your daughter does have lupus, I am happy to any answer any questions that might help you.

 
Old 06-10-2006, 06:40 AM   #8
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goldenwings HB User
Re: Questions about Childhood Lupus

Hello Kyle,

Just to welcome you to our wonderful forum. Glad your daughter is being managed well. My diagnosis came quickly when I was very young too, so I have a lot of knowledge of childhood issues relating to "coping" with a chronic illness from an early age. I am always here to answer questions.

Please come back whenever you need to talk about anything that is bothering you, or if you need to ask questions.

Take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
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