New member with questions

[sonia1md]

hello everyone,

I just came across this site and found lots of helpful information. I will try to keep this introduction brief, however that isnt my strong suit! style_emoticons/<#EMO_DIR#>/sad.gif

My name is Sonia and my 10 year old daughter is Aundrea. She began having problems 3 years ago. She developed a body wide rash that later became scaly and peeled off. She also had very high spiking fevers and joint and muscle pain. The rash went away the joint/musle pain stayed along with a blotchy rash that would show up on her face and neck. Three months later the whole body wide rash returned..she was very ill with high fevers and joint pain, swollen lymph nodes sore throat.

Tests were run. She is ANA positive speckled pattern. Other "lupus" tests were negative. She had a high sed rate and CRP. Two docs diagnosed her with systemic jra (although very unusual presentation due to the looks of the rash and lack of joint swelling) Two other docs diagnosed her with unclassified autoimmune disorder.

So in the three year since that time she has had flares of joint pain and myalgia. Her joint pain is transient and rarely ever any swelling. The blotchy rash has always continued on her face. She was treated with Plaquenil. It offered some relief in the beginning but after a year she was flaring pretty bad. She was started on prednisone and mtx. Tapered the pred and she was left on mtx and plaquenil. She seemed to have a rash that was induced by plaquenil so we took her off of that. 5 months ago she was tapered off the mtx. She did well for 3 months and then joint pain returned.

Our current problem has to do with the sun. She can be outside for just 30 minutes and will have this severe red "rash" on her cheeks/nose/chin. it is warm to touch. We are vigilent about sunblock. Always put on before going outside and every hour that she is outdoors...(it doesn't seem to help at all) the rash on her face generally goes away within 24 hours and then she has this white flaky skin that is rough feeling. Last week she develped a 'sore" that was the size of your pinky nail. It was red around the outside and white and crusty in the middle. It is healing now after a week and barely noticeable.

She has increased joint pain and muscle pain after sunlight exposure. Today she was outside for 2 hours and upon coming inside she went to climb the stairs and her leg gave out completely. It appears to be both muscle pain as well as ankle or tendon pain.

Does any of this sound like lupus. She just doesn't seem to always fit in the category of systemic jra and I thought I would check with you guys to get your opinion.

Thanks and sorry for the long intro.

Sonia (Aundrea 10 systemic jra?)

[Joandublin]

Hi Sonia style_emoticons/<#EMO_DIR#>/flowers.gif

...and welcome to the site style_emoticons/<#EMO_DIR#>/shakehands.gif

I am so sorry to hear about your daughters problems style_emoticons/<#EMO_DIR#>/hugbetter.gif . I cant imagine how hard it must be to watch your child go through this.....

Her symptoms are certainly consistent with Lupus but it often takes a while before Lupus is diagnosed because it can imitate so many other autoimmune disorders. Does she see a rheumatologist?

Have you spoken to her doctors about the sun sensitivity? It might be a good idea to start taking photos of her rashes and logging when they happen and what was the cause, etc. Sun problems with Lupus are not just reated to the skin. Exposure to the sun can cause flares and internal organ damage so it would be wise to keep her out of the sun as much as possible - keep long sleeved light cotton clothing and cotton trousers on her and maybe a nice sun hat?

There are people on this site who have a lot more experience than me with Lupus and I am sure they wil be along soon to give you some advice and information.

In the meantime welcome again and I look forward to getting to know you better..

Oh and one other thing, there is a paediatric forum on this site as well. You might like to look through the old posts to see if anything helps?

Luv n stuff to you and Andrea
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[softball893]

Hi sonia style_emoticons/<#EMO_DIR#>/smile.gif


Welcome to this site! I am really sorry to hear about your daughter too! 10 years old is very young to be dealing with such health concerns! I agree with Joan completely in the things that she has already mentioned. Lupus can mimic alot of other autoimmune diseases and it sounds like she could be symptomatic of lupus. Do you have her seeing a good rheumatologist? Be prepared because there is not one set test that says a person has lupus. It can take alot of time to diagnose someone with it too because the doctors want to rule out other problems first. There is a good pediatric forum here on this site that can probably offer you some more information. Please take time to look at it! I wish the best of luck for your daughter!


Take care,

Liz style_emoticons/<#EMO_DIR#>/smile.gif

[sonia1md]

Hi Liz and thank you for the welcome.

I do really like the rheumy that my daughter is seeing. We have only been going to him for a year but I am comfortable with him. He has been treating Aundrea for systemic juvenile rheumatoid arthritis but she has had problems that aren't always in keeping with that diagnosis. I placed a call to his office on Friday and didn't hear back so I guess I will call again today.

Its kind of strange because although Aundrea has this rash that comes out on her face after being outdoors and she also seems to have an increase in muscle/joint pain...in many other aspects she appears totally fine. She is at a healthy weight and for the most part can be quite active. Yet, its not normal to wake up tired and to have stiffness and to develop a red rash all over your face after limited uv exposure.

I will let you know if the doc has any suggestions. Thanks again for your kind welcome.

sonia (aundrea 10 systemic jra?)







Thank you Joan for your welcome and your suggestions. She has been seeing a rheumatologist for 3 years now. Actually this is her third rheumy..we recently moved. The previous rheum diagnosed her with unclassified autoimmune disorder and continued to "monitor for sle". The first and current rheumy have dx her with systemic juvenile arthritis although she doesn't have a textbook case!

I did buy her sun protective clothing but a good hat that she could wear in the pool would probably be helpful.

I did take lots of pictures of the body wide rash and I have some of the "butterfly rash" that she gets now.

I guess a realistic place to start would just be to rerun some labs. Other than the positive ANA speckled pattern the rest of her labs looked ok as far as lupus....well she did have a high sed, high crp and eleveated WBC...

I will try to find the pediatric forum and do a search there...Seems like Aundrea is awfully young to have Lupus?

Sonia (Aundrea 10 systemic Juvenile arthritis?)

[kaesara]

Hi Sonia,
I am sorry to hear that your Dear Daughter Aundria is suffering from illness of this magnitude. As a parent I can only imagine how hard this is for you. My Son is 31 years old and has Fibromyalgia and Teitzes Syndrome and I am always concerned about him.

Sonia,I would persist with the Rheumies office. If they dont return your call and answer questions to your satisfaction I would insist on an appt to take Aundria in for a check up. I agree with what the other posters have said and Think the suggestion of making pictures of the rashes is a excellent one. Keep a journal of her symptoms from day to day.

She certainly has a lot of symptoms that are consistent with systemic lupus . I am interested to hear how the Rheumie explains his Diagnosis of Juv. Arthritis as opposed to Systemic Lupus.

Please keep us posted on how Aundria is doing.

Hugs and Flowers for You and Aundria,
Sincerely,
Kaesara style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/foryou.gif sonia and style_emoticons/<#EMO_DIR#>/foryou.gif aundria

[sonia1md]

Thanks for the flowers Kaesara
I did just call the office again and left another message. Hopefully I will hear back before to long. I think the reasoning so far in saying that she has systemic jra over sle is that all the other tests for lupus were negative. the sm, ro IGE? all negative along with RF negative.

So that left them with a child having spiking fevers (no longers gets these) rash, transient joint pain and muscle pain and weakness. The elevated sed rate and elevated CRP caused them to know there was some problem with inflammation.

Her rash isn't really consistent with systemic jra. I have been keeping a journal and that was how I noticed a correlation b/t her rash and outdoor exposure. The rash has become progressively worse over the past few months. She has photoxicity but just not sure why.

I really can't find much information out on children with lupus. It seems pretty rare. I tried to find the paediatric forum here but other that finding a few posts I didn't come across a whole lot. I did find a source here that had links to some great pictures and Aundrea seems to have the butterfly rash along with a recent "discoid type" of rash that cleared up on its own after one week.

It seems like one of those things that over time you find more answers as to what the problem may be but there certainly hasn't been any quick diagnosis in our case.

Overall, we have much to be thankful as things could certainly be much worse than they are. During her initial flares she was in so much pain she couldn't walk and she even screamed out in pain just from the weight of the sheet touching her skin. I am glad that things aren't as bad as they were.

Thanks again and I will keep you posted.

sonia (aundrea systemic juvenile arthitis?)



<div class='quotetop'>QUOTE(kaesara @ Jun 5 2006, 11:19 AM) Quoted post</div><div class='quotemain'>
Hi Sonia,
I am sorry to hear that your Dear Daughter Aundria is suffering from illness of this magnitude. As a parent I can only imagine how hard this is for you. My Son is 31 years old and has Fibromyalgia and Teitzes Syndrome and I am always concerned about him.

Sonia,I would persist with the Rheumies office. If they dont return your call and answer questions to your satisfaction I would insist on an appt to take Aundria in for a check up. I agree with what the other posters have said and Think the suggestion of making pictures of the rashes is a excellent one. Keep a journal of her symptoms from day to day.

She certainly has a lot of symptoms that are consistent with systemic lupus . I am interested to hear how the Rheumie explains his Diagnosis of Juv. Arthritis as opposed to Systemic Lupus.

Please keep us posted on how Aundria is doing.

Hugs and Flowers for You and Aundria,
Sincerely,
Kaesara style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/foryou.gif sonia and style_emoticons/<#EMO_DIR#>/foryou.gif aundria
[/b][/quote]
style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/Thanx.gif

[Joandublin]

Hi again Sonia style_emoticons/<#EMO_DIR#>/shakehands.gif

I was just wondering if you had checked back through ALL of the paedatric posts? The standard number of posts that show up are for the last 30 days only and there arent too many posts on this Forum as you can imagine.

Click back into the forum and scroll down to the end. On the bottom right you will see a check box that should read 'From: 30 days'. Select the drop down arrow to the right of this and select Show All. Then click Go beside it. That will give the full history of Paedatric posts on the site.

There might be stuff of interest to you in there.

Also one other thing...when you are replying to posts select the ADD REPLY button at the top or bottom of the screen (beside NEW TOPIC). If you just select the REPLY button under the last post this will quote the post above in your reply as well....bit confusing but I promise you will get used to it style_emoticons/<#EMO_DIR#>/biggrin.gif

Take care
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[sonia1md]

Oh thanks Joan...I knew I wasn't doing the reply right but wasn't sure how to fix it. style_emoticons/<#EMO_DIR#>/biggrin.gif

I will go back and try and look thru some old ped. posts. Still haven't heard back from the doctors office.
style_emoticons/<#EMO_DIR#>/hissy1.gif

I will have to be a bit patient...I doubt that there will be any quick answers and more likely it will be a referral to a derm or lab work or both!

Sonia (Aundrea systemic Juvenile arthritis?)

[Lily]

Hi Sonia and welcome style_emoticons/<#EMO_DIR#>/biggrin.gif

I'm so sorry to hear your daughter is so ill and they arent sure what exactly is going on just yet. A lot of these rheumatic diseases can be like that. Most connective tissue diseases are treated the same though, regardless of their label.

I note you said :

<div class='quotetop'>QUOTE</div><div class='quotemain'>She was treated with Plaquenil. It offered some relief in the beginning but after a year she was flaring pretty bad. She was started on prednisone and mtx. Tapered the pred and she was left on mtx and plaquenil. She seemed to have a rash that was induced by plaquenil so we took her off of that. 5 months ago she was tapered off the mtx. She did well for 3 months and then joint pain returned.
[/b][/quote]

Plaquenil is the first line treatment to try and get our disease under control, its one of the few that actually can help alter the course of the disease, in some its enough, in others different drugs may have to be added as you experienced. Its common to taper off the Prednisone once a flare has settled down but remain on the other drugs we take. Are they sure the rash she developed was from Plaquenil, and not a flare of the disease or signs of the disease worsening, sometimes its difficult to distinguish between the two? Was it the Rheumy who took her off it, or did you make that decision? If she had been on the Plaquenil for some time then it was unlikely to be the cause, it could have been an increase in disease activity at that time. The disease waxes and wanes, and even with drugs we still experience flares of activity.

Was it the doc that weaned her off Methotrexate and does he know she no longer takes Plaquenil?

Just throwing out some ideas to get a better feel for why her joint pain and rashes have increased so much. Plaquenil does help both of these symptoms. There are times that many of us thought maybe it wasnt helping when we were going through a period of flaring, but those who have gone off it have soon realised it was helping far more than what they initially thought.

I hope you can see the Rheumy and sit down and have a good talk. Diagnosis is important but treatment is far more important at the moment for her it seems.

love
Lily

[sonia1md]

Hi Lily,

Well you asked some good questions...First of all let me just say that I did reach my daughters rheumatologist today and he is going to see her this Thursday.

In answer to your question about Plaquenil. She started have severe sunsensitivity last May...we were moving from Illinois to Arizona right at the same time...We chose to take her off the plaquenil. We thought that it made a difference. the rash that she gets now looks alot like what she was having last May so you may be right in that it never had anything to do with Plaquenil.

Aundreas joint pain was well controlled with mtx. We kept her on it for 9 months and we made the decision to taper her off of it and see if she would be ok or if she would flare again...We did contact her rheum regarding our decision and he was supportive of us giving it a try and said that the only way to know how she would do without it was to try and discontinue and could restart if need be.

She did great for 4 months and then transient joint pain returned and muscle aches. This spring she began having photoxicity.

We will see how things go Thursday. My daughter is almost 11 and very anti medications. She has had so many reactions to the meds...mostly nausea, stomach cramps, dizzyness etc...that she fears the meds more than the disease. My husband is a chiropractor and we sometimes struggle with the decision to medicate.

I will let you know what Thursday brings.

Sonia (Aundrea 10 systemic jra?)

[Lily]

Hi again,

I'm glad you were able to get her in to see the Rheumatologist. Its extremely important she be monitored for increased disease activity, lupus is a very sneaky disease as far as progressing to organs. The fatalities and organ damage we see most often is from unmedicated patients who dont comply with simple disease controlling measures.

Often skin signs and increased photosensitivity indicate more going on internally. Its not always obvious.

Its especially so in the case of kidneys not presenting any outward signs until progressive damage has been done. We witness this quite often here especially in the case of pre-teen and teens who are either undiagnosed and untreated or just untreated. Far better to prevent a problem in that scenario, there's no going back once kidneys are damaged. Same for central nervous system complications - to mention another target of lupus.

Do mention the fact that you have taken her off the meds and her decline though, it will be important as far as the doc doing thorough investigations and forming a treatment plan. Its difficult for a child that age to express how they feel and also many of us have evolved being used to unacceptable levels of pain and symptoms simply because we didnt know any better. That was certainly true in my case, having the disease go into remission itself after flares in teens, not diagnosed, having chronic ill health for a decade or so and then having a huge flare where my nervous system and kidneys were involved. I'm quite lucky to be here and the only reason I am is because of an extremely good doctor and medication plan.

With correct medication and knowledge of my disease organ damage could have been avoided. But I am not alone in that, many others have a similar story.

Its a disease that can be well controlled with the right meds and monitoring. Otherwise its a disease that can in some have life-threatening complications.

love
Lily

[nilegal]

Awwwwww...Sonia, I will keep you and your daughter in my prayers. It can be so hard to see your child suffering and not know why. God Be With You, Nilegal ((((Sonia))))

[sonia1md]

thanks nilegal...I will keep ya all posted.

sonia (dtr. aundrea 10 systemic jra?lupus?)

[sonia1md]

Hello everyone,

Just wanted to let you know that Aundrea had her appt. with the rheumy yesterday. He found swelling in 6 joints, allin her hands. He saw her "malar" rash and said she does have photosensitivity. He ordere a TON of tests to do further testing for lupus.

He gave some options regarding treatment. We could do a couse of steroids. We could restart her methotrexate. We could get the labs done and discuss everything again in 2 weeks. We went with the last option.

He also said that Aundrea just needed to stay indoors for the month of June...Oh yeah that is likely to happen! style_emoticons/<#EMO_DIR#>/scaredy.gif

We are going to keep working at reducing her time in the sun. He said basically it just intensifies her flares and the it can cause thinning of her skins and these little broken purple veins to show up on her face. style_emoticons/<#EMO_DIR#>/aww.gif

So thats all for now. We do know one other thing. The plaquenil last year was not the culprit for the photoxicity. Given that she is off all drugs at the moment and she has had a recurrence of the same symptoms we can no longer blame the plaquenil.

Thanks again for your warm welcome and advice/suggestions,

blessings,

Sonia (daughter Aundrea systemic lupus/juvenile arthritis age 10)

[Lily]

Hi Sonya,

Thanks for letting us know how you both got along at the Rheumies. I'm glad he's run tests to try and work out whats going on, important for you to do a bit of homework in the meantime and see what abnormal results of those particular tests might mean so you can make informed treatment choices for your daughter. Do you know exactly what he tested?

It's a wonder he didnt want to start Plaquenil again ? Many of us take that along with our Immunosuppressants, combined, they work better to control disease, Immunosuppressants are usually added when Plaquenil alone is not doing enough. However I guess he's considering her discomfort right now and thats why he gave you the options he did. The Plaquenil could take some time to kick in (not something you could expect her to deal with for many months waiting for that to happen and it may turn out she needs more than that anyway, tests will help reveal the more likely scenario). The addition of pred (in the interim) could tide her over until Plaq has had time to take effect - and then enable her to wean off the pred. The Methotrexate would certainly bring a quicker symptom relief for her joint problems. Anyway see what the tests reveal and you can decide from there after discussion with him. He will probably have more to add once he's got tests back anyway and have a better idea himself which way to jump depending on her individual circumstances.

BTW did he do a urinalysis?

Good luck and let us know how you get along.

love
Lily

[raggedyann1]

Sonia,

I know it is hard to keep a child out of the sun. The worst hours are 10AM to 4PM. You could arrange inside activities for her. Going to the Movies, see a play that is oriented for kids. Have a ice cream sundae party with her friends. Go to the mall. That is just some suggestions.

With those of us sensitive to the sun - if we don't stay out of it we can end up with organ invovlement. The sun triggers the lupus to be more active so its not just rashes we deal with but having the lupus running rampant thru our bodies.

Take care,
Karen

[sonia1md]

Hi Lily,

These are the lab tests that were run: ANA, RF, anti ccp, ds dna, anti ro, anti la, anti sm, anti rnp, c3, c4, p and c anca, esr, crp, cbc, cmp, tsh, and U/A.

My guess is that he mentioned restarting the mtx because while Aundrea was on it she did wonderful. Her rash was much less and she didn't have joint pain or stiffness. She still had problems when she was just on plaquenil until we added the mtx....after we discontinued the plaquenil (do to thinking it had caused the sun-sensitivity) she didn't appear to have any negative change as far as her joints. etc...so she remained just on mtx. She also responded very well to prednisone as far as physically however her mood swings were horrible....It would be very hard for me to ever want to restart that drug!

She is getting packed to go off to a juvenile arthritis camp for a week. Its nestled in the pine trees and should provide wonderful shade and outdoor opportunities.

Do you know if all of those tests that were run were just to check out for lupus? She is ana pos specked pattern and has had elevated sed and crp depending on her flares...I assumed the rest were lupus tests???

Thanks again for your help..I really appreciate it!

sonia (aundrea 10 systemic lupus?juvenile arthrits)

[sonia1md]

Karen,

Thanks for the suggestions...They were good ones and I will try to improve with that. The hardest part comes from the frequent calls from her friends who all seem to have pools (we don't, we go to the community center which has a water park and 2 blocks from our house..its part of our homeowners association)...anyway her friends invite her over and its typically daytime hours. We are working with the idea of playing inside and waiting til later afternoon to enjoy the pool.

I didn't realize that the sun did so much more that just the skin rash...I have spent 3 years now learning everything I can about juvenile arthritis and now with the possibility of lupus it just seems to change everything...you wouldnt think so since the treatment is so similar and even many of the symptoms are alike but the sun issue has been a whole other category.

Thanks for keeping me on my toes and letting me know the areas of concern that could make a real difference in my daughters well being.

style_emoticons/<#EMO_DIR#>/Thanx.gif

sonia (dtr. aundrea 10 systemic lupus/ systemic juvenile arthritis)

[Lily]

Hi Sonya,

He's been very thorough in his testing which is good. A lot of those tests are specific to lupus but some can be found in similar diseases too, so it will help him pin it down a lot better, there are related disease such as Sjogrens, and sometimes we have more than one disease going on too. I'm glad he did a urinalysis style_emoticons/<#EMO_DIR#>/smile.gif

About the only thing he's missed is the anticardiolipin antibodies and the Lupus anticoagulant, which can indicate blood clotting problems either from a condition called antiphosholipid syndrome (APS) which can be present alongside Lupus or present on its own. She is young though and maybe thats why he didnt test for that? It is more a problem for child bearing age lupies and beyond and presents with headaches and various other issues, and a history of thrombosis or miscarriage. It can however be present in blood in a lupus patient but they do not have APS because they dont have any criteria for it.

Here's a link from our home pages to help you understand the meanings of the tests and abnormal results :

http://www.uklupus.co.uk/tests.html

love
Lily

[Mariposa]

style_emoticons/<#EMO_DIR#>/hugbetter.gif Hi SONIA,
I'm sorry about your daughter's illness. It saddens me when illnesses like this attacks the children.

I have an 8 yr. old son and I often think and worry about he developing my Lupus.
I had his pediatrician ran a routine blood test and it came a little abnormal, so I got referred to a
Rheumatologist at the Children's Hosp.
Once there he didn't seem worry about the results and he told us that our son was fine. style_emoticons/<#EMO_DIR#>/unsure.gif He said I shuldn't worry about it, because his labs were not too abnormal.

I still worry about it, because tests are not 100% guarantees.
In the mean time, I rely A LOT on my faith in God for his protection. style_emoticons/<#EMO_DIR#>/smile.gif


style_emoticons/<#EMO_DIR#>/flowers.gif Thank you SONIA, for sharing your story. It truly helps us parents.
style_emoticons/<#EMO_DIR#>/flowers.gif <-for Aundrea.

[StevieM]

Hi Sonia,

Just felt I had to reply to your posts as I totally understand what you are going through atm. My daughter is now nearly 12yrs old but was dx'd with JA aged 8 and finally SLE aged 10. As far as keeping her out of the sun I would try talking to her friends parents about your daughters problems with the sun and ask for them to try and help by timing any pool party a little later in the day....you will with any luck find most of them will be only too willing to help. I have also found that faced with the choice, of going outside during the day and feeling ill or doing an indoor activity and feeling well, my daughter will chose to go outside style_emoticons/<#EMO_DIR#>/shrug.gif but does it with plenty of sunscrean and a hat at all times. I hope you get the answers back from the blood tests soon.......just make sure that they take into account your daughters age, as many of my daughters first results where read incorrectly as the looked at them in comparison to normal adult results !

You can find out all about my daughters dx on this forum, just look under my old posts. Feel free to email me any time style_emoticons/<#EMO_DIR#>/smile.gif

Best wishes,

Stevie

[sonia1md]

Hi Stevie,

Thank you so much for your reply. Did they test your dtr. initially for Lupus at age 8? May I ask what her current symptoms are and what her treatment plan is?

I am still learning how to navigate this site...I plan to try and search for your old posts...Do I have to do that under a particular heading?

Thanks for the advice about the labs. I intend to get a copy of the labs and I will ask if they were done with ped. standards. I will share the results of the tests here.

It made me laugh about your dtr. choosing to go outdoors dispite the ill affects that will result...I guess our daughters would make good friends! style_emoticons/<#EMO_DIR#>/halo.gif

Thanks again for your help...I will hold off on all my other questions until I have tried to search for your old posts..

Blessings,

Sonia (Aundrea 10 systemic lupus?juvenile arthritis)

sorry that your son is having problems and that you are struggling to find answers. What are his current symptoms?

Sonia (Aundrea 10 systemic jra/lupus?)

[Clare.T]

Hi sonia

You can find a poster's previous posts by clicking on their name which takes you to their profile. At the top right of their profile there is an options box - click on that and the first item in the menu is [find all previous posts]

All the best

Clare

[sonia1md]

Clare,

That is so easy...thank you very much!

style_emoticons/<#EMO_DIR#>/Thanx.gif

sonia (aundrea 10 systemic lupus?jra)

[StevieM]

Hi Sonia,

I would be happy to give you more details about my daughter but you would need to email or pm me, as my daughter has asked that I do not go into details about her on the website. She is happy for me to make comments about past events that have already been posted but would like to keep her current situation private. style_emoticons/<#EMO_DIR#>/hide.gif

Maybe one day she will feel like posting for herself, but until then I have to respect her wishes.

Hope to hear from you soon,

Best wishes,

Stevie

[sonia1md]

stevie,

thats normal that she would be concerned about her privacy, especially at her age. I did get a chance to read thru all your old posts and saw that you had a real struggle in getting a diagnosis and your dtr. sure had more than her fair share of injuries.

I will get in touch when I know more about Aundrea's lab results next Friday.

Thanks again and I hope that your daughter will enjoy some better days.

Blessings,

Sonia (aundrea 10 systemic jra/lupus?)