hello again everyone

[cclnikki]

I am not sure if you remember me but I have my daughter nicole who saw the rheumy in aug and debating lupus or not because of the malar rash and the slight ana.
But I just wanted to say that it looks like that malar rash is coming and going. We are suppose to follow up next month and wondering if I should ask her to repeat the ana. If it would change or not. (the values anyway).
I am not sure if it means anything but I think from what I read she also had a present left shift in her bw in aug 06 I think it means either inflammation or infection but she wasn't sick. But I should be recieving her latest bw from the GI in the mail today to see if it is still present. But good news is that her celiac titers are now within norm limits, which means she is 100% gluten free.
Thanks for all your help.
Celina
Nicole 11/18/03

[Clare.T]

Hi :)

Congratulations on getting the celiac under control. I hope this means much better health for her and both your girls continue to do well.

About the left shift, I can't add to the information you got in answer to your similar question on a celiac board, except link to the site that information came from

http://www.medical-library.net/sites/_cbc_interpretation.html

It looks quite a useful site.

You asked about the left shift before and Maia explained.
See
http://www.thelupussite.com/forum/showthread.php?p=434511#post434511

It seems fairly clear to me (but I have no medical training or specialised knowledge), that while the shift may occur in the presence of inflammatory processes like fighting an infection, it may not be accompanied by any actual disease symptoms.
Presumably it's part of the infection fighting process and if the infection is successfully overcome then there won't be any symptoms of it. And the shift might still appear afterwards since it takes a while for the system to settle down.
I once had a raised white blood cell count that caused some concern but there was nothing unusual in any other tests and I felt fine. It was probably due to a flu' like illness I had had several weeks before.

As far as I can see, a low ANA doesn't have any more diagnostic significance in children than it does in adults.
Best to ask your doctor if he thinks it's necessary to repeat it.
ANA is not specific to lupus anyway. If the ANA has caused concern in the past I wonder why it wasn't already repeated in this round of blood tests

I have pinned a link to one article about ANA in kids at the top of this section. ANA levels can vary.

Red cheeks ( a malar rash )can occur for all sorts of reasons and is not necessarily lupus related.

If there were no other symptoms of lupus apart from a low positive ANA ( even repeated ) and a a biopsy proven lupus related rash, it is unlikely in my non medical opinion that your daughter would be diagnosed with SLE. This is why there has to be a certain mix of symptoms before people are diagnosed: 4 or 5 of the criteria depending on their weight.

It's a very heavy diagnosis to get and if that's all there was she wouldn't be treated anyway.

Of course a very close eye would be kept on her for signs of worsening disease

As you know the significance of any test result depends on other symptoms, examination, other test results and the doctor's expertise

All the best

Clare

[cclnikki]

Hi :)

Congratulations on getting the celiac under control. I hope this means much better health for her and both your girls continue to do well.

About the left shift, I can't add to the information you got in answer to your similar question on a celiac board, except link to the site that information came from

http://www.medical-library.net/sites/_cbc_interpretation.html

It looks quite a useful site.

You asked about the left shift before and Maia explained.
See
http://www.thelupussite.com/forum/showthread.php?p=434511#post434511

It seems fairly clear to me (but I have no medical training or specialised knowledge), that while the shift may occur in the presence of inflammatory processes like fighting an infection, it may not be accompanied by any actual disease symptoms.
Presumably it's part of the infection fighting process and if the infection is successfully overcome then there won't be any symptoms of it. And the shift might still appear afterwards since it takes a while for the system to settle down.
I once had a raised white blood cell count that caused some concern but there was nothing unusual in any other tests and I felt fine. It was probably due to a flu' like illness I had had several weeks before.

As far as I can see, a low ANA doesn't have any more diagnostic significance in children than it does in adults.
Best to ask your doctor if he thinks it's necessary to repeat it.
ANA is not specific to lupus anyway. If the ANA has caused concern in the past I wonder why it wasn't already repeated in this round of blood tests

I have pinned a link to one article about ANA in kids at the top of this section. ANA levels can vary.

Red cheeks ( a malar rash )can occur for all sorts of reasons and is not necessarily lupus related.

If there were no other symptoms of lupus apart from a low positive ANA ( even repeated ) and a a biopsy proven lupus related rash, it is unlikely in my non medical opinion that your daughter would be diagnosed with SLE. This is why there has to be a certain mix of symptoms before people are diagnosed: 4 or 5 of the criteria depending on their weight.

It's a very heavy diagnosis to get and if that's all there was she wouldn't be treated anyway.

Of course a very close eye would be kept on her for signs of worsening disease

As you know, the significance of any test result depends on other symptoms, examination, other test results and the doctor's expertise

All the best

Clare
thank you, that helps. They didn't check the ANA this time because it was the Gi dr we saw that did this bw. The rheumy is the one who ordered the ana before. We haven't been to see her lately. We are suppose to follow up this month.
Thanks a bunch
celina

[peonyprincess]

I am glad to hear that your daughter is doing better. I know that is frustrating when dealing with a child that has an illness that they will have to deal with for the rest of their life. My daughter Madi(9) was diagnosed with Lupus last summer and my other daughter Brit(17) has been seeing her doctors on a regular basis lately as they think she has Lupus as well.

You asked about having another ANA drawn. In my opinion, I would have one drawn. Since there has been 8 months since the last one was drawn, it would show what is currently going on. I personally have mine drawn every 6 months, just so I know. It just makes me feel more comfortable. Mind you it drives my doc nuts when I tell them what labs I want and when, guess it is the nurse in me.............................LOL!

I wish you and your daughter continued success in keeping your health in check.


Nancy

[cclnikki]

It is still showing a (present) left shift
Her WBC are a little low (not much)
neutrophil/band is low (33) normal is 34-78
and her celiac one is really good I am so happy
the normal range is <20
her's is 1.8 (meaning she is 100% gluten free) the test before the diet was 80.

[Clare.T]

Congratulations on the celiac results. You can be very proud of yourself. I hope your daughters' health continues to improve.

Best Wishes
Clare

[cclnikki]

Hi everyone, How is everybody doing. Good I hope.
I just had a question. I am suppose to follow up with the rheumy this month, I need to schedule that appt. But was wondering because I have still noticed the malar rash not very bright. But within the past few days it is much more prominent. Why is this?
Thanks everyone

[Clare.T]

If you are asking why lupus related pinkening on the cheeks gets worse, classic causes are increased disease activity, sun exposure which might mean just being out of doors more than usual whether sunny or not, increased physical activity, being warm, related to some other illness; or it just has, for no very obvious or particularly significant reason.

All the things that apply to well children and people too. All symptoms can fluctuate from time to time. The malar rash is the term used for lupus rashes on the cheeks. A malar rash is one from any of the many other possible causes.

Of course a lot depends on how abnormal the appearance is for the individual. Mention it to the doctor.

Good Luck

Clare

[cclnikki]

I tried to take a pic of the rash to show the rheumy when we go on may 14th, I emailed her and she said it is a good idea to take pics because usually when the kids see her the rash is gone.
But I tried to use one for my avatar. It is hard to get a pic of the rash,But does it look like a butterfly, It is darker than the pic shows.
Thanks

[cclnikki]

Good morning everyone, hope all is well. I had a question when a malar rash is present when does it show more? I find with nicole that she does get it in the winter even though it is cold but mainly when she is hot or in the sun and at bedtime, I try to get pics, but it is tough to get pics of a rash. I am trying though so I have some when we got back to the rheumy.

What brings out the rash?
Thanks again

[Clare.T]

You have already asked this question and got a response below. The pictures you have taken are perfectly good.

Believe me I understand your anxiety not to leave any stone unturned and assure the best health and care possible for your children but with all respect I think you need to consider if you are too involved and over anxious.
It can't be good for children to be surrounded by what's coming over as extreme parental anxiety.

If you have no faith in your present doctors you need to seek new ones.
The tests for childhood rheumatology are much the same as those for adults. If they have all been done and no explanation for the symptoms has been advanced that's the time to seek a second opinion.
It is essential to have a doctor in whom you feel confidence and one who reassures you.

There comes a point with adults too when diagnosis is simply not possible at any given time and the symptoms alone will be treated. Aches and pains with no obvious cause will be treated with NSAIDs. Disease management is important too, such as ensuring adequate rest and being careful about sun exposure. Keep an eye out for things like loss of appetite, changes in activity, unusual fatigue and changes in gait which can indicate pain that children might not complain about. Make sure urine is tested and any signs in blood of kidney disease.

Nobody is going to treat with serious disease modifying medicines when they aren't sure if disease is present.

At this stage, I don't see that we can help you any further - enjoy your children and have fun with them.

All the best

Clare

[laura72]

Hi,
My daughter had her rash for a few months before diagnosis, it was bright scarlet by the time she was admitted to hospital and it was even weeping, I think the sun made it worse, but then at the time she was so ill the rash was the least of our worries.
I've put a photo of her in 'my profile' this was taken when she had been in hospital for a few days and the steroids had kicked in. (We were taking pics of her smiling - not the rash - as she hadn't smiled in months!)
Also attached to this post, (if it works):)

[cclnikki]

You have already asked this question and got a response below. The pictures you have taken are perfectly good.

Believe me I understand your anxiety not to leave any stone unturned and assure the best health and care possible for your children but with all respect I think you need to consider if you are too involved and over anxious.
It can't be good for children to be surrounded by what's coming over as extreme parental anxiety.

If you have no faith in your present doctors you need to seek new ones.
The tests for childhood rheumatology are much the same as those for adults. If they have all been done and no explanation for the symptoms has been advanced that's the time to seek a second opinion.
It is essential to have a doctor in whom you feel confidence and one who reassures you.

There comes a point with adults too when diagnosis is simply not possible at any given time and the symptoms alone will be treated. Aches and pains with no obvious cause will be treated with NSAIDs. Disease management is important too, such as ensuring adequate rest and being careful about sun exposure. Keep an eye out for things like loss of appetite, changes in activity, unusual fatigue and changes in gait which can indicate pain that children might not complain about. Make sure urine is tested and any signs in blood of kidney disease.

Nobody is going to treat with serious disease modifying medicines when they aren't sure if disease is present.

At this stage, I don't see that we can help you any further - enjoy your children and have fun with them.

All the best

Clare
Sorry I couldn't remember if I had asked that already. I wills ave my questions for the rheumy. Thank you all.

[cclnikki]

This afternoon nicole has her appt with the rheumy, I will post how it goes.

[cclnikki]

We got back a while ago and she looked her over and the pic I brought. She said it is rare for a child this young to have lupus but she will do testing to rule it out and make sure it is ok. She ordered another ANA and an esr and a few others. She will call me with the results. She only had a slight rash on her face when we went in. She also checked her joints and everything seemed okay. Did notice she has hypermobility in her legs more right than left. meaning that when she straightened her knee she was still able to lift her foot up and leg off table. Said that may cause pain also. And said if a joint swells again this summer she wants to see her while it is swollen.
Just wanted to update I am glad she is ruling it out (hopefully)
Thanks for all the help and support everybody
C