I’ve been MIA but I read this and have to say that your experience mimics a lot of my own daughters with multiple doctors. She’s had similar results except the ANA doubling, rises but not doubling. She was told by one rheumy that her facial rash was “commonly caused by sun in swedes” , joint swelling must be “growing pains”, she’s pre-pubescent (11 yr then), etc. keep pushing for answers, you may not get them right away but keep pushing. My daughter has multiple diagnosis and has been through it all. I don’t have any great advice because its been almost a year and we are still fighting daily to get her through the harder times. Check her vitamin D levels, easily remedied but common. I hope you get the right help and support. I’ll try to stay in the loop and hope you find a proper diagnosis so treatment can begin.
BTW, I have a son who has had chronic cardiac issues since 3 months old. He was always told he couldn’t play sports, he gained a bit of weight, his last cardiologist was so fixated on his weight that I couldn’t get him to do anything meaningful because he kept talking about my sons resulting “obesity” because he wasn’t active enough…boys get eating disorders too and I was less than overjoyed with that jerk too.
Hang in there!
Is there a children's hospital around that could help??? I'm in Indiana, and Riley's hospital is the biggest and best for us. My great niece has cystic fibrosis, and when she's sick its an automatic visit there.
As for the doctor that told Nicky she should lose weight - how insensitive can a medical professional be????? The weight gain is associated with the water retention and bloating - from the lupus.
You and your Nicky are in my prayers, how frustrating this is for your family. I can't add anything other than the prednisone didn't help me at all either, in fact after I took it I noticed the weight gain.
Thank you all. Mom3 my daughter's vitamin d levels are super low. She's on it now. We need to get it checked. Her potassium is also very low.
The teaching hospital was also a children's hospital. In fact the other children's hospital in Orlando had my daughter as a patient (back in 2010) and another girl who had lupus. I met that girl's mom. Our children were by far the sickest of all the patients in the hospital. But our girls were both medicaid patients. Guess who got sent home after 24 hours???? Yup you guessed it . My daughter and the other girl who was in a sever lupus flare. But the little girl with a "cough and lung congestion..." needed to stay at least another day. Oh and there was a teenage boy who was screaming all night long but the doctors couldn't find out anything wrong with him either. But he needed to stay several more days for them to do "tests". Why? The girl with the lung congestion had a father who was an engineer and had GREAT insurance. I don't know what the boy with the screaming problem's dad did for a living but they were definitely well to do. But the poor sick girl with lupus (and she also had an anaphlactic allergic to the medicine they gave her which only weakened her condition) they kicked out of the hospital as soon as they could. My daughter's dad was ordered to buy her health insurance but the judge in our child support case didn't enforce that at all. So now we pay the price.
My daughter at the time had acute pancreatitis. It was so scary. She was way too sick to be discharged and after I brought her home I saw how listless she was. I brought her back to the hosptial and told them I could handle a sprained ankle or a broken bone or stitches or the flu. But pancreatitis was WAY OVER MY PAY GRADE as a mom!!!! Well they put iv fluid in her and kept her on clear liquids after 24 hours npo. She ended up getting better and her pancreas enzymes came down significantly with the iv fluid. But even then the dumb doctors were cheapskates. The attending physician ordered her iv fluid discontinued the night before she left the hospital. My daughter doesnt particularly like drinking water as it is and with the nausea from pancreatitis she really could have used the extra fluid. I am so thoroughly disgusted with the doctors here in orlando florida. There are no words. I mean she is sick and they won't help!!! Sorry to vent. But I don't have the authority to ordrer the necessary tests or admit her to a hospital so they can figure out what's going on with her. I'm scared and upset about it all. She's super tired today... in fact exhausted. She got outside a little and she always feels sick when she's had sun exposure.
I just posted some pictures of my daughter. The rash on her face isn't super bad but I think you can definitely see it. Those pics were 2 years ago. It's worse now and it's above her eyebrows as well.
Hi Liz I can't speak for the other hospital, but Riley doesn't turn anyone down for inability to pay. My great niece had a huge private room, with a bed for Mom. Her older sister and her dad had a room and they were there for a week and a half. They gave both kids toys, to take home with them and the care was amazing. They too are on medicaid, so its possible to find a good teaching hospital. I hope this helps, God Bless you and Nicky.
Trisha
liz12345 said:
Thank you all. Mom3 my daughter's vitamin d levels are super low. She's on it now. We need to get it checked. Her potassium is also very low.
The teaching hospital was also a children's hospital. In fact the other children's hospital in Orlando had my daughter as a patient (back in 2010) and another girl who had lupus. I met that girl's mom. Our children were by far the sickest of all the patients in the hospital. But our girls were both medicaid patients. Guess who got sent home after 24 hours???? Yup you guessed it . My daughter and the other girl who was in a sever lupus flare. But the little girl with a "cough and lung congestion..." needed to stay at least another day. Oh and there was a teenage boy who was screaming all night long but the doctors couldn't find out anything wrong with him either. But he needed to stay several more days for them to do "tests". Why? The girl with the lung congestion had a father who was an engineer and had GREAT insurance. I don't know what the boy with the screaming problem's dad did for a living but they were definitely well to do. But the poor sick girl with lupus (and she also had an anaphlactic allergic to the medicine they gave her which only weakened her condition) they kicked out of the hospital as soon as they could. My daughter's dad was ordered to buy her health insurance but the judge in our child support case didn't enforce that at all. So now we pay the price.
Well Florida is a no state tax state. So that probably makes a difference. I think states with state taxes have a larger revenue base. It's one of the reasons we're leaving florida. Im from Chicago and the kids there who have medicaid also get much better care. Thank you for sharing that. Sorry I was a little snarky in my last post. I'm still overwhelmed.
I’m also from fl. Jacksonville in fact. We have wonderful ped doctors here from Nemours clinic & wolson hospital. We also have Shands Jacksonville urban Campus where the doctors from University of Florida (Gators) train/pratice. I’ve spend many hours @ wolfsons childrens hospital. My oldest daughter went thru a lot as a child. I’ve never had to pay much at all. We have been there both on medicaid and private insurance we didn’t see any difference in treatment. They have telethon childrens miracle network and it goes between the two hospitals. I’m very happy we do have the best doctors here. The doctors pull together at a round table to discuss each patient and the work as a team for each patient. Good luck to your daughter & its wonderful for you to be such an assertive parent. I would def. Get at least one more clinical opinion. If you get the same answers then make them explain each problem & (where, what,why,and how) they are treating her etc. Please let us know how it works out! May God Bless & keep guiding you!
Lorie
Hi Lorie, thanks! Unfortunately our experience with Nemours and Shands was not that great. The rheumatologist at Nemours was the one who told my daughter she was obese (5'4" 160 lbs... size 12/14). And the rheumatologist at Shands didn't think there was anything to worry about with regards to lupus. And she didnt call me when we got all the weird blood work back. So I've found them to not be so helpful. But maybe our next visit will be better. Thank you for sharing your experience though. It gives me hope.