I just want answers for my daughter!!

Has she been tested for Xeroderma pigmentosum?
It's a type of sun/light allergy. You can research it and see if it's related.

While you wait to see the doctor keep her out of the sun, halogen, and flourescent lights.

When going outside coat her in broadspectrum sunscreen (SPF 100) and cover her up in protective covers and umbrella.

You can do your own PT on her if you watched to physotheropist working with her. Try to copy some of the moves you saw, but be careful not to overdo her.

Hi. Thanks for the response!

Can Xeroderma pigmentosum cause other symptoms as well? There has been 5 referrals to the dermatologist and still no luck! :| and can it cause abnormal ENA and ANA test results?

The neurologist had mentioned "Sjogrens" and the only letter sent to our family Dr was saying "Vasculitis". It definitely doesn't seem like Sjogrens and I don't know enough about Vasculitis.

I did call rheumatology last week and they sent neurology a fax telling them to stop telling patients and I shouldn't have called them :|

We're going through the Childrens Hospital so I'm not sure of any other rheumy in this city :s

She's always had problems but was not told its unrelated as to what's going on now

Thanks again for response :)

http://ghr.nlm.nih.gov/condition/xeroderma-pigmentosum

Maybe this article can help?

Some of her symptoms are consistent with Lyme disease. It affects people in many different ways. You might want to look into it. Do be aware that if she has been tested for it, that does not mean she doesn't have it. The tests are very inaccurate, particularly in a long-term infection.

Lyme and its co-infections can affect many different tests. I am sorry I don't know enough about those tests to give you a definite answer.

If you step next door to the Lyme forum, I am sure there is someone there who knows more!

really bizzarre quetion but have you had her tested for nutritional deficiencies, a full nutritional panel. I know with my daughter, the migraines and skin sensitivity as well as digestive issues were caused by an autoimmune reaction to fructose. She has been diagnosed with Dietary fructose intolerance.

so..msnova..
do i just ask Dr to do a full nutritional panel?

i do believe the last round of blood tests she was tested for some kind of thyroid..which i read can cause +ANA as well

I couldn't agree more! And good for you :)
Myself I am a vegetarian, my kids not so much but for the most part I don't cook a lot of meat she is the pickiest eater you will ever come across! I have been giving her a Greens Whole food supplement (brcocoli, spinach, wheat grass juice, whole brown rice, Chlorella, Spirulla, beet juice, kelp, alfalfa , Fructoolgosaccharides) , multi and occasional Vit D.
I've cut back on sugar, slurpees (her weakness....no pun as after she has one she crashes!) etc.
I am super busy (single mom, small business owner) so we eat a lot on the go :( I have been MAKING the time now and cutting back on eating the crap.
I used to be strict with our diet, so strict they still haven't eaten a fast food burger and I won't let them eat meat (fast food or at a restaurant). Our diet def has gone downhill past few years though, I'm not as conscience as I used to be. But this is by far a huge wake up call! I went from one extreme to the next with our diet :(
So now that I'm thinking a little clearer I have made changes to our diet again and becoming more strict.
I no longer feel its the end of the world with a hopeless feeling, I've made it through past few days without crying :)

Hi JenBee
No we haven't been in yet :( it does take forever.
And it is a huge challenge! How are you doing??
How is your daughter doing?
I am so glad I came across this forum, it has been so helpful and the support is amazing, its helped!

I've gone back to our Dr so many times as well just to hear any news, each time I walked out more confused and scared. I did go back last week and ask for a full nutrition panel, deficiencies, intolerances (lactose, fructrose etc) as she was never even checked for any of these tests. (You would think that would be the first things they'd look at???) so fingers crossed it something as simple as that :(

Hi I am new here but am scared for myself and my daughter. We are both displaying symptoms of perhaps Lupus.

I have had MS-like symptoms for 24 years, but my MRI's were normal so I was never dx'd. Then out of the blue, this past week, when at the beach for the week I gor some rashes on my leg that looked like a rash you get when shaving without shaving cream. They went away the next day, but out in the sun a gain I got another and it also went away the next day. My left cheek was also red, as was my nose and right cheek was a little pink. IT faded but left tight dry skin and now its a little flaky. I made an appt this morning to see a Rheumy but couldnt get in until November. Also, maybe 6 months ago I had wrist pain which went away after vacationing in the bahamas. Then I got ankle pain which comes and goes-I dont have it every day, but is worse in my left ankle where I had a prior fracture.

I went to my GP BEFORE i had the rash and he did a SED rate which was normal-- "4".

I am scared for my 15 year old daughter. She may have raynauds(cold hands and feet), eyes tearing (dry eyes?), sore throat and cough for over a week now, red cheeks from sun, and feels full quickly. Thanks goodness she has no pain.

Im just trying to find some support and someone who is going through similar issues as me. Im very anxious and scared.

My daughter is a happy beautiful teenager with lots of friends, shes social, sweet,caring, etc. I dont want to ruin her teenage years by dragging her to doctors and having her worried. I have read on many Lupus forums that others have had symtpoms since their teens but wasnt diagnosed until many years later. They lived their lives and their symptoms came and went and some had long periods of remission.

Hoping someone will reach out for support!

Thanks!