I just want answers for my daughter!!

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corrine01
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Date Joined Jun 2012
Total Posts : 13
   Posted 6/17/2012 10:48 PM (GMT -6)   
I dont know if im in the right category
My 12 yr old ENA and ANA tests came back abnormal, the dsDNA was normal. I am still waiting for other test results which is i was told can take a few weeks
 
Originally what brought us to to the Dr, she had a numb tongue (which lasted wks) a rash covering her body which looked like small boils, no puss etc but they were itchy. Those went away and where the bumps were its now white spots covering body, a bald spot on her head.
She's also had extreme knee pain for yrs, physio helped, we havent been for a couple weeks (physio expensive :s) and her knee is starting to hurt again
Migraines started at 9 (i dont know if its tied or just migraines)
Her skin has always been very sensitive in the sun. We have dark skin and even a day in the sun and she is so DARK! Im only saying that because a couple years ago we had to get some black spots "burned" off her back from sun damage
 
None of these symptoms match Lupus or any other autoimmune disorder/disease i have looked at
 
Its been just over a week since I have found out and needless to say it was a HORRIBLE week (only 2nd day i havent cried out of 9)
 
We originally got sent to a neurologist, had an EEG which was no normal, neurologist has referred us to the rheumotologist which is going to be a couple months before we get in :(
 
any thoughts, suggestions???
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/18/2012 8:07 AM (GMT -6)   
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.
Joy

Lynnwood
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Date Joined May 2005
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   Posted 6/18/2012 8:31 AM (GMT -6)   
Most PTs are happy to give you copies of the stretches, etc so you can do them properly at home. (That's cause usually it's better to do them every day rather than just while you are at PT.) I say 'properly' as I've found just copying what you see may not always be right, and it's almost better to do nothing rather than cause injury.

That said, I'm going to follow my own PT instructions - thanks for the reminder, Joy!

As for 2 months until the rheumy - don't forget to get on the cancellation list, call ever couple of weeks to check & see if there are any openings, see if any other rheumies can take you sooner...that sort of thing.

Hope she feels better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

corrine01
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Date Joined Jun 2012
Total Posts : 13
   Posted 6/18/2012 9:01 AM (GMT -6)   
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 :)

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/18/2012 9:03 AM (GMT -6)   
*i meant to say her EGG WAS normal...

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/18/2012 9:48 AM (GMT -6)   

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/18/2012 9:52 AM (GMT -6)   
Thanks, funny I am on that exact site right now reading up on it! :)

I have been very cautious last couple yrs with the sun once she had those black spots on her back. Sun block, after sun lotion and aloe vera.

achievinggrace
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Date Joined Nov 2009
Total Posts : 3266
   Posted 6/18/2012 2:34 PM (GMT -6)   
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.
Co-Moderator Lyme Disease Forum

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/18/2012 2:40 PM (GMT -6)   
Thanks

I stumbled across that last night as well and thought the same thing.
Again, its the ENA and anti-ANA tests that were abnormal, is that constant with Lyme?

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 6/19/2012 1:36 PM (GMT -6)   
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!
Co-Moderator Lyme Disease Forum

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/19/2012 5:30 PM (GMT -6)   
thats ok :)

and thank you i will go check out

msnova74
Regular Member


Date Joined Nov 2011
Total Posts : 65
   Posted 6/25/2012 12:03 PM (GMT -6)   
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.
Fibromyalgia, MCTD, CMPS, and many other letters of the alphabet

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/25/2012 12:24 PM (GMT -6)   
Thanks for responding! :)

I had actually been thinking of that. I see a Vit B12 definciancy can even cause positive ANA tests, rash etc. . I have been paying more attention to everything! And I've noticed even after she. Has a slurpee she's crashed and starts falling asleep.
She has not been tested for all of that.
I am Vit D deficiant and I know when I stop taking the 4000mg I crash hard! And I feel like crap

But yes, I do plan on going back to our Dr to find out for sure.

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/25/2012 9:51 PM (GMT -6)   
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

JP Nana
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/26/2012 7:38 AM (GMT -6)   
I have dealt with and recovered from an autoimmune disease. I would research nutrition and or plant based diet. There is more and more research being done every day that shows whole food deficiency is the root of all these diseases. Many times with medications, the body toxicity is increased which may mask some symptoms, providing temporary relief but no cure. It is not easy to do a plant based diet in the beginning but over time it becomes very easy! I have been doing it now for about 15 years and no longer have any health issues. I also take a whole food supplement which is thoroughly researched and backed up by science because no matter how many plant based foods I eat, I cannot eat the variety provided in the supplement every day. I hope you find some answers and can begin changing her diet to improve her health as I have been able to do.

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 6/26/2012 9:07 AM (GMT -6)   
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 :)

jennbee04
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/6/2012 1:25 PM (GMT -6)   
I was just curious if you had seen the rhemuy yet? My daughter whi is six might have lupus we are waiting on her test results, but there are not al of ped rhemuy around it took us five mths to get into one,we just saw him yesterday! Best of luck to your daughter, this has been a challenge for our family as well and its so frusrating when our ped doctor said he just didn't know!

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 7/6/2012 1:44 PM (GMT -6)   
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 :(

jennbee04
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/7/2012 9:51 PM (GMT -6)   
Hi, completely understand that, in the four years my daughter was having hives it took them four years to send her to see a allergist/ immunologist who has been the most helpful. We should have our results this coming Thursday, the other doctors only checked her sed rate, crp protein but never looked at her ANA etc. I have learned through this all the things they should have done for example when she had this skin eruption in January with vascultisis they should have done a skin biopsy but they were to quick to write it off as a allergy it would have given us answers. Now I am not afraid to demand certain test to be done for her so we can just have a diagnoses. Best of luck hopefully you will have some answers soon!

scaredmom2
Regular Member


Date Joined Aug 2012
Total Posts : 47
   Posted 8/20/2012 10:24 AM (GMT -6)   
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!

corrine01
New Member


Date Joined Jun 2012
Total Posts : 13
   Posted 8/27/2012 10:11 PM (GMT -6)   
Hey guys
Thanks for replying! Its been a ride that's for sure, my daughter has had an MRI, went back to neurologist as she had gotten pneumonia a few wks ago and during that time her arms had become numb and hard to move around??
The MRI came back normal. We have since seen a rheumatologist, we actually went just over a week ago. After 3 hrs of us being in the appt, I came out with no answers and more confused. She is completely stumped at my daughters symptoms and said maybe its just been a virus my daughter has had the past few months :| I did find out my daughter ANA level and it was 1:40 6 months ago, we did go back and get re-tested. I really don't know what to think??? Past couple months I've been wondering if we are completely looking in the wrong area?? I don't know. The only thing that I found where her symptoms match her is Giant Cell Arteritis. I don't know, its very odd and confusing. I'm not comfortable with the rheumatogist saying "it was probably just a virus, come back if needed"??? I did ask for full nutrition panel and she is Vit D deficient, I've been giving her loads of supplements (omega, Vit D, multi, Greens etc) so far so good.
Needless to say, my faith in our health care is quickly fading!

Funny you say about the hives Jennbee, about 3 weeks ago I started breaking out in horrible hives. I've never gotten hives before :/ I did take pictures and if I can figure out how to upload from blackberry I will. I even got a few today as well and I'm confused as heck as to what's causing???
Have you gotten results yet from Dr?


I hope you get your answers sooner that later Scaredmom, waiting is the worst part :( have you had any blood tests done??
I know exactly what you mean, my daughter missed a good part of school this year. She was home more than not since January.
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