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My daughter(15) began vomiting with abdominal pain last May. Her symptoms worsened and she began to be light headed and complain with her heart beating really fast with fatigue. She has had every test known to man from MRI's, CT scans, numerous labs, Gallbladder surgery(definitely unnessary)!!!Tilt table testing, EGG on the stomach, two endoscopies and things I simply can't remember at this point. All tests shows nothing except a few things: she was diagnosed with POTS(postural orthostatic tachycardia syndrome) in November and began taking meds( which have not helped hardly any) she had a positive ANA test and seen a Rheumatologist who said that she did not think she had anything but would want to follow up with her later as sometimes things do not show up right then. However, we are being referred back because she continues to vomit nearly everything up and has moderate to severe abdominal pain still, she is tired ALL the time(not usual for teen at all), her cycles are worsening and she has headaches, her heart rate is still very high for a resting rate, and she keeps breaking out in a rash that looks like an allergic reaction to meds or something(, though it is not on her face. She gets it on her legs, arms, back and stomach. Her stomach is very tender to the touch and often times will make her vomit if too much pressure is applied. They just started her on a beta blocker to see if it will bring down the heart rate some. I am just very frustrated as is she at this point and just want some concrete answers.

Can anyone tell me if her symptoms tie into lupus or some other form of Autoimmune disorder....of course I want her healed but a real diagnosis would bring peace ( at least we would know what and how to treat it).

I thank everyone for any information!!!

God Bless!!!
 

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I've moved your post to start your own thread so your post doesn't get lost at the end of someone else's post.

It sounds like your daughter has really been through the ringer for nearly a year now without much for answers or help. Have they ruled out Crohn's by doing both an upper and lower endoscopy? It sounds like something autoimmune could be going on - do you have the values for the blood tests that were positive?

The rash you describe could be a lupus type rash (it doesn't have to be on the face), some of the symptoms you describe can occur with tick borne illness like Lyme disease too. It sounds like the doctors have done their best, and I'm glad you're heading back to the rheumatologist soon. The current rash she has could be very helpful and aid in a diagnosis - a dermatologist could biopsy affected and unaffected skin and may be able to determine if it is a lupus rash.

Has she seen a cardiologist about her heart problems? Have they really looked into all possible causes of that (including Grave's disease or hyperthyroidism). Autoimmune diseases often co-occur.

If you don't get somewhere after your next appointment, I would strongly recommend going somewhere else for a second opinion even if you have to travel a ways. There are so many things it could be... and autoimmune disease is certainly a possibility.

Good luck with everything - hope you find some answers and the right treatment very soon.
 

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SAM M
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Hi Kathy. I am sorry but i cant give any advice about your situation. However i just wanted to say hi and i know that lots of people who can assist you WILL come along. In the meantime sending you and your daughter hugs and i really hope you get some answers soon.:)

Sam
xxxxx
 

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Hi Kathy, I assume they have run a load of other blood tests for Liver Function and Thyroid etc.. are all her counts normal? There is a criteria for Lupus on this site and an alternative criteria.. you should check that out but not saying it is Lupus, I am not an expert or a Dr.. sounds worrying for you all. You certainly need some answers, poor things. Keep bothering them for further investigation, your poor daughter can't go on like this, she must feel dreadful. She has seen a Rheumy which is good if she has a positive ANA and it can be frustrating when they are waiting and watching.. diagnosis for any auto immune problem can be a long process, and a frustrating one. Trust in yourself and keep pestering them! I wish you well and hope you all get some answers soon. Take care,
Claire X
 

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PS

Oh and take photos of the rash, write a journal of symptoms and any other evidence you can get for your next Rheumy appt, it helps them understand what is going on in a more direct way.
Claire X
 

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You have been given good advice here Kathy.

Be persistent and if your not happy with the care your daughter is getting then move on to bigger and better doctors.

Good luck and keep us posted.:wink2::wink2::wink2:
 

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Hi Kathy,
I concur that her symptoms come close to meeting at least 4 of the 11 symptoms for lupus. This is with OR without blood/lab work. For a diagnosis of lupus, one must meet at least 4 of the 11 symptoms.

Her abdominal tenderness leads me to wonder if her pancreas has been checked or involved? I've had several friends who have had extreme pancreatitis and her symptoms make me wonder about that. The recurring nausea and inability to keep anything down are classic for this. Another option is peritonitis. While this is not as common, lupus affects the serous membranes and the peritoneum is included in that category.

It is good you have a rheumy appt coming up. If you don't get satisfaction this time around I agree that a second opinion is in order.

The symptom journal is so vital to figuring out what is going on. If the doctor does not want to bother with it, I would be looking for a new rheumy. Have her rate her pain, and all symptoms on a scale of 1 to 10, choose which you want to be high and low. This can be crucial to a review by the rheumy. Again, lack of care of this would have me looking down the road.

Even tho you have had gi docs looking at her, my thoughts are that she isn't in their speciality.

I am very sorry that she is battling such a severe health challenge. Please keep in touch and let us know what is going on.
Sally
 

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The Other Illinois Tammy
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Kathy,
Hi and welcome to the site. I am so sorry that your family and daughter is having to deal with this. I am not sure what is going on as some of it does sound lupus related in origin. It never hurts to have a second doctor look at her. Have they looked at the digestive system? The throwing up sounds like it is digestive for the most part. I am not a doctor so please take this as advise please. The rash could be medicine or enivronment related. Keep looking for answers and don't give up. You are a mother so you know what I am talking about and do not have to tell you what you have to do for a child. You are already doing it and living it. If you need someone to talk to I would be glad to be a vent if you need one. I am sure you are worried and scared, I know I would be. We do have the chat room where you can talk to others that might know just a little more. I hope you are feeling well and doing well.
 

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Hello Kathy, I am a Lupus Mum of a Lupus 18 year old. We went through a lot of similar things before she was diagnosed. Are you in the UK?

If you are in the UK there is at least Private help in getting diagnosed.

My Daughter is actually now improving a bit, after a long time and a few hiccups with medications. There is plenty to be hopeful about.

Oh and Welcome, hope to get to know you better.
xLola
 
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