[onetay]

Hi everyone, not sure this is in the right place but if it is not I am sure someone will help me out with the placement. I have been getting a little concerned about my daughter. She is 20 years old. She has dx of ADHD, Dyslexia, and Astma. So none of these seem to be linked to what is going on with her. Over the past year she has been having multiable kidney, bladder, finger infections, and UTI's. She has been what I would call drained for the past few months. I know infections can sometimes do this to you but she has the ADHD (which if anyone knows anything about this they are a big ball of energy and there is no empty for them). She has been getting some bumps that look like one of my leisions I get with my lupus. I don't want to jump the gun here, but I have repeatly ask over the years for the kids to be checked for lupus and all I hear is it is not genetic so the chances of them getting it or having it are almost none. She has been complaining of joint pain with no injury to the area at all. Both my kids at about 3-6 months old ran high fevers for no reason at all. About every 3 years they run the same high fever and still they find nothing wrong with them. By a high fever I mean 104-105. Nothing but being put in an ice bath helps them and they hate it. She is wondering what is going on with her because she is worried she has something that might keep her from taking care of me. I am not worried about that I am getting very worried about her. I am not sure how hard I should push for the test for lupus? I am concerned if they just do labs that she might be like me and labs are fine, but might still have it or a form of it. Don't take this wrong I don't want her to have it but she should not be feeling like she is for no reason. Would like some help with what to do and how to get it done if you have any advice PLEASE!
Thank You for your time and for reading this post as I am very confused as to what is going on with her.

 

[dollydaydream]

Hi

They say it is not genetic. But AI does run in families, and my GP was very interested that I have a history of AI disorders both personally and in my immediate family.

Since Lupus is AI, does this not contradict it not 'running in families' ??

Maybe 'running in families' is not the same as 'genetic', but to me it's the same difference.

I would be stamping my feet and making noise. With diabetes, my consultant says that anyone who has had it for over 5 years is qualified to professor level, and if i feel something is abit 'squirrelly' he sits up and pays attention, so you really are the expert at Lupus, and an expert on your child, not the gp.

Sending you a hug

 

[Maia]

I agree that with those symptoms (in particular the joint pain for no reason and the fatigue) and your family history, she should at least get some basic blood work done to test for an autoimmune problem. Ideally, she would be seen by a rheumatologist too.

There actually is some likely genetic component to lupus, although it's not very strong as a daughter of a lupus parent only runs about a 5% risk of developing lupus herself. A son of a lupus parent only runs about a 1% risk of developing lupus...

Good luck - I hope you can get some answers soon for your daughter's health condition. If her current doctor refuses to do any investigations, I'd try to get her into another GP or discuss her situation with your rheumy if possible.

 

[onetay]

Thank you maia and sarah for your imput as was thinking the same thing. I am glad that I am not just freaking out because I have lupus. I will try and see what I can do about getting her tested by which ever doctor will be willing to do it.

 

[Pink Pearl]

Hi Tammy,
First, I am very sorry your children have all had problems.
Second,.....bunk on it not being hereditary! My father's father's had9 brothers and sisters. All but 1 (she died of age related problems at 98) died of either heart attack or stroke problems. My father's 2 brothers, and he, have had either heart attack or aneurysm problems.

I lost my first cousin to lupus. The other first cousin has 3 of 11 symptoms. Fortunately, the 3 first cousins have been seen by the same rheumatologist, so that rules out issues of not being in the same testing. I am the oldest of the first's. None of us has ever developed ana's.......nor our fathers either. Each of us has a different brother for father.

I have known a LOT of lupus moms who had one or more children with lupus or other auto immune issues.
So.......I think that some researcher did not find what they were looking for and have not done an update on the % of sle people and it being in families.

I would insist on testing for your daughter. Her history is sounding so much like mine......even down to the summer illnesses. I would not let it rest with just an ana test either.....insist on the panel... Many sle patients do not develop ana's until farther in their history.

I wish all of you luck, and your daughter especially.
Sally

 

[LolaLola]

Tammy, by not genetic, they usually mean it is not 100% concordant, a posh way of saying it is not 100% sure to be passed on. There is certainly a weak connection. Your Daughter does need help but can I just remind you many Daughters of Lupus Mums can have positive ANA even if they have no Problems. I know this from Dr. D'Cruz at Tommies so you can trust the information. My Daughter has Lupus but even in her case diagnosis was a bit slow as local Docs thought I was being over sensitive becaus eof my own illness!
Hope it turns out to be something simple for you.
x lola

 

[ALWIN]

Hello Tammy

I was wondering if it might be worth getting her blood sugar tested too because she might feel drained and have alsorts of odd infections - especially linked to bladder and extremety infections if she is running with a highish blood sugar and early diabetes.

Having type 2 diabetes, Sarah might be able to fffer a bit more input with this idea too.

At the end of the day it is quick and easy to test, so no harm done if it is completely irrelevant in the end. At least it would be one box ticked off whilst waiting for further autoimmune checks in the future.

I hope you get some answers. She sounds like a lovely girl worrying about being able to take care of her mum, bless her.

Take good care Tammy.

 

[Zoi]

Hi Tammy,

I’m very sorry to hear of your daughter’s health problems…

Your post brought something to my mind which may very well be wildly irrelevant to what your daughter has at the moment, but I thought it best to mention it. A couple of years ago I had a bout of increasingly high fevers that lasted about 3-4 months. As a result I got every test imaginable for them (from brucella to leukemia to cat scratch et cetera et cetera!). Now because my fevers had spikes, as in I’d be ok for half a day and then my temperature would shoot up to 105 (I got ice baths too, they really are no fun!) my docs had mentioned a disorder that can do that and that, according to them, is actually quite common.

It’s called Still’s disease and it “comes” in two forms, either the juvenile kind that begins from early childhood or the adult-onset kind that appears later on in life. It is a kind of arthritis and it’s telltale signs are high spiking fevers and transient rashes (usually salmon in colour). It is also very treatable.

Here is some links with information about it:

http://en.wikipedia.org/wiki/Juvenile_idiopathic_arthritis

http://www.stillsdisease.org/

I think a visit to a good GP or internist for starters would definitely be beneficial. Getting some baseline blood tests and maybe some more specialized tests like an ANA etc might also be a good idea. This is not necessarily something autoimmune but getting some tests done and talking to a doctor about it should give you some idea on what is going on and how you should proceed.

I hope you get to the bottom of what’s going on soon!

Sending loads and loads of strengthening hugs to you and your daughter :grhug::grouphug2:

:flowery:

Zoi

 

[onetay]

Thank you so much for your input. It has given me other ideas other than lupus to focus on. I am going to call the doctor on monday for her and see if they will not at least do the labs for the baseline to check for lupus. Then I will also ask about the arthritic like disease so they can start on that also. She is going to hate me cause it sounds like she is going to be a pin koshing for awhile lol. She hates needles also. I like to thank everyone personally for your advice and other things to look into other than the lupus. Zoi you have led me to a couple new things to check that I would of never thought of thank you so much. Alwin, glad to see you back and doing what we do best helping others. She has been checked for diabetes but am going to have them check it again as we all know that can change from day to day.Lola and Sally you gave me the information that I can take to the doctor and let them know that even if it is not genetic she should be tested as I have lupus and that it needs to be ruled out like everything else. I know if I brought it to the site you all could and would help me and true to form you have done it again. Thank you all for not only helping me to figure this out but to lead me in other areas to look at.

 

[KarolH]

Tammy,

I agree you should call the doctor in the morning and get her a appointment to be seen along with some blood work. Since AI things do tend to run in families I think it is reasonable to have them draw bloods and see what is up.

Better safe then sorry. Like Zoi, immediately after I read your post I thought of Stills disease too. Let them do blood work and get to the bottom of this. At 20 years old she is too young to be in that much pain. Something must be going on.

Good luck and keep us posted.