I just need some advice since we feel like we're losing our minds. My daughter is 18 she has been chronically ill since she was 3 months old. RSV at 3 months and then every winter was rough. As she got to be about 4 or so she had chronic viral bronchitis like 7 times a year. It always started with a sore throat severe body aches fatigue and then her breathing problems would kick in. about 4 yrs ago on New Year's Eve she was admitted for flank pain. She had a uti the week before but they didn't culture it so who knows. She had the same symptoms minus the bronchitis. They could find no sign of infection viral or bacterial but her kidney and flank pain and fever made them decide to admit her. Could never figure the cause of why that happened. 3 years ago she came down with the same symptoms joint pain fatigue fever blood work was all normal but she had intense chest pain no cough no chest congestion, took her in said she had a virus and the chest pain was from costrochondritis, sorry about the spelling, but her chest wall was inflamed it hurt to breath and they blamed it on her coughing. again we made it very clear she had not been having any coughing no asthma flare up . But they blew it off. the pain got so bad when she would try to walk up the stairs her heart would start pounding and her pulse would jump to 185-195. They put her on a 24hr halter monitor but could find no explanation for the racing heart rate. Thankfully that hasn't been an issue since but it took weeks to get over.
Moving forward to the present she has continued to get sick with the same symptoms sometimes it lasts for weeks lately her breathing hasn't been affected but her labs are always normal no sign of a viral infection no bacterial.
This past May we went on a bike ride and we didn't go far and her arms reacted very badly to the sunlight. She was always a little sun sensitive but this was raised and itchy and swollen. A few day later we decided to get up super early and take a long bike ride before the sun got intense. We went 21 miles in 5 hours but we did stop a lot to drink and eat see the scenery etc. It was a really great day even though it was 21 miles roundtrip. The next day her legs were covered in hundreds of bruises. She never fell she had long pants on-it was so bizarre . They were not normal bruises either some were as big as my hand some as small as a dime and they were all different colors, from red to green to purple yellow it was shocking because it made no sense. I was with her the whole time I would have known if she had fallen. Took her to her pcp who told me it was a good thing she was older because they would have called social services because it looked like someone beat her legs with a baseball bat. They drew some labs and her ANA came back positive. Being 17 at the time the referred her to a children's hospital to see a rheumatologist. A few days after the bike ride she started running a fever severe fatigue joint pain etc. Auto immune is very prevalent on both sides . When she got in to see him about 10 days into this flare her pain was so intense I had to help her walk. That had never happened before. He looked her over got her history and said he was pretty sure she had lupus given her symptoms and the positive ANA. He did a ton of blood work and of course everything was normal. Her symptoms also include Raynauds ,joint pain and swelling, muscle weakness, severe headaches, fevers with these flares, mouth sores, hair loss , sun sensitivity -she never had the butterfly rash but anywhere her skin is exposed to sunlight it reacts even with sunscreen. So he started her on prednisone 40 mg a day was what it took to get her to be able to move without my assistance, and she was on it for about 6 weeks, it was awful for her to get off of, her lymph nodes would swell if she was an hour late taking her dose her skin was so sensitive just her clothing touching it was painful. These past few months she has never really gotten back to normal. Some days are better than others since the weather cooled off her flares are ramping up each one worse than before, with audible popping and cracking in her joints she's very weak I have to open things for her and of course the fever is back and she sleeps a lot. This week her ibs was really bad also so I had to take her to the ER. Now this is where it gets weird. Before we left she used the bathroom her urine was normal. 45 minutes later when they take her back she of course has to give them a urine sample and it looked like coffee. The was no rbc, wbc or bacteria found but it was high in bilirubin, ketones and protein and she was not dehydrated. Did a ct of her abdomen and kidneys all normal. Her blood work was fine except her sodium plasma was high. Now no one seems to be concerned because her blood work was normal and her rheumatologist has backed off from his initial diagnosis and now calls it her" lupus like illness". He says she doesn't meet the criteria and he wont take the fact that if she isn't on birth control -since the age of 11 she's been bleeding so heavy she becomes anemic he says that isn't considered an abnormal or related condition, I am beyond frustrated because this is no way for an 18 yr old to be living. Since May she hasn't been normal and like I mentioned her symptoms are getting more intense, I want to get a second opinion of course but no one is taking new Medicaid patients in a 300 miles radius. We are stuck with her rheumatologist and he doesn't seem to understand that instead of a couple of weeks per month we are dealing with the opposite where she only feels good a few days each month. When she does feel good we do get out and we don't do anything crazy just walk around the mall and the next day she is wiped out. Her docs all says its a" lupus like illness" and suggested us to go to therapy because my daughter broke down and cried in the ER when she saw how dark her urine was. She knew something was wrong and it was very hard for me to keep calm because it was quite alarming. lBecause she was upset she needs counseling. Who wouldn't be upset when they been sick for 6 months and there's no explanation. No one seems to be listening to us that for instance she is more weak and her joints pop and crack and I cant even hug her she is in so much pain, because her labs are always normal. I'm getting the feeling they think were crazy. I want to stop all the anti inflammatories to see if that's masking her inflammation markers or her CRP. But when she's in so much pain how can I tell her not to take anything. I am just very frustrated and concerned especially about her ua and the bilirubin and their being so non chalante about it because her blood work was normal. Sorry I know this is very long but I have no one to talk to and my heart is breaking for her. I keep praying that I be the one to have her pain her illness anything just please God let me suffer and not her, I'm sure all you parents know exactly how I feel, thanks for letting my get this all out and any suggestions or advice I'd glady welcome