sick of my daughter being sick and her rheumy contradicting himself

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laura68
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/9/2013 2:16 PM (GMT -6)   
Hello all
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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/9/2013 2:47 PM (GMT -6)   
It does sound like you need a rheumy more experienced in auto-immune diseases. There are lots of approaches other than just prednisone that can help disease progression, and many Drs try them even if they are not yet quite ready to diagnosis a particular illness.

I know you mentioned Medicaid restrictions but I wonder if there is any way to get supplemental insurance or too visit a "free clinic" or subsidized clinic to get her some help. Alternatively, maybe you can drive to a big city even if it's quite far -- she needs help.

One way I suggest to find a Dr more familiar with auto-immune is to visit www.lupus.org, find the closest chapter, then contact them to see what Drs are more interested in helping people with these conditions.

Meanwhile, stay out of the sun, stick to mild exertion, eat as healthy as possible, drink plenty of water, and make sure she gets deep restorative sleep.

I hope you can find help soon.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

laura68
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/9/2013 3:43 PM (GMT -6)   
Thank you for your quick response, and she has been seen in Denver by the head of the rheumatology department at Children's hospital. And he graduated from medical school in 1961 so I'm guessing he's close to 80 yrs old. So he's kind of regarded as the "best" and he is very well respected in the area. Since he has more experience than anyone in the area and that could be why her PCP whose only in her 3rd year of residency is not questioning anything he says. We seem to be stuck in this unique situation with her specialist being so much older and her PCP being still in her residency. And I cant change PCP either. Her Medicaid would have expired when she turned 18 but since she became very ill while she was still 17 they made an exception to the regular rules. So I guess I shouldn't complain because if she didn't have any insurance we'd be in worse shape. Thank you again and I'm just going to keep hoping something gives her some kind of relief, and yes I considered medical marijuana since we do live in Colorado there are dispensaries everywhere, but when we tried hemp seed oil capsules (there suppose to be good to reduce inflammation) she had an allergic reaction within 15 minutes. Hives shortness of breath wheezing good thing we have a nebulizer so she could do a breathing treatment to keep her airway open. So no hemp based products are an option. Feels like 3 steps forward 5 steps back. I know I'm not alone and so many others are living with this or worse. But I have no support system as my family that is here doesn't understand.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 11/9/2013 6:11 PM (GMT -6)   
Laura,

I'm so very sorry to read about your daughter and her health issues. I know all to well what it's like as a parent to watch your child suffer and to continue to get no answers. My son, now 24 began having issues as an infant, got worse around age 10 and by the time he was a sophomore in college literally was unable to get out of bed. It was at that time I decided to move him from a pediatric rheumatologist to my rheumatologist, we also travel 300 miles to see a specialist who is treats lupus on a mass quantity on a daily basis unlike our small town. Anyway, after many test and appts he was unfortunately diagnosed with SLE lupus and RA. treatment began and he lives a normal life for the most part. Sure he has bad days, but the good days are greater, he is a teacher, married, very, very active in all things sport related.

What I'm saying is, don't give up hope. Now that your daughter is 18 ask your PCP to refer her to a non pediatric rheumatologist. Many times it takes several doctors to get a firm diagnosis. This is just my opinion, so take it for what it's worth, but before I started my child on marijaunia I would exhaust ever path possible with specialist. Marijuana at most is only going to dull the pain, it is not going to answer what is medically going on with your daughter's body, level of disease activity if she does have lupus or another disease. Lupus can be very, very damaging to ones organs, please get her to another doctor.

Lastly, Dever is a large city and should have one or more lupus support groups there locally. Perhaps you could contact Lupus Foundation of America and see if there is a chapter in Dever. If so, they will be able to give you recommendations about doctors, etc. in your city.

Best of luck to you and your daughter. May you find answer and relief soon.


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/9/2013 8:01 PM (GMT -6)   
Along with avoiding the sun she needs to avoid fluorescent lighting too.
If she has to go outside makes she covers up with clothing that doesn't allow light through. She also needs a good hat with a wide brim to shade here head.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/9/2013 11:13 PM (GMT -6)   
I doubt an 80 year old Dr is conversant with all of the treatment options available today. I could be wrong, but I'd rather see someone 5-10 years out of school, many of these older docs just don't keep up with current research.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 11/10/2013 1:54 PM (GMT -6)   
What you described about your daughters pain in the chest was exactly one of the things that I had before my DX... it was awful... and lasted about 2 months....I have never had again ...and glad about that....hope you can find some help soon...

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/11/2013 10:20 PM (GMT -6)   
Laura:

I'm so sorry to hear that your daughter is suffering so much. As I read her story, it reminded me of my journey with lupus. I started having health issues at age 17, had rheumatic fever at 17, I was away at Army basic training at Ft. Jackson, SC.

I was unable to complete my training and was medically discharged, once I returned home I continued to be unwell. I married at age 20 and I had another bad flare up at age 22, that was when the very first Dr mentioned I might have lupus. It took my Dr's 13 more years before agreeing that I had it and treating iit. It's SO FRUSTRATING, when they don't listen to you, especially when they say it's in your head.

My whole point in telling you this is don't give up. I agree with Lynnwood a Doctor that's 80 isn't the best bet or the best of the best to diagnosis and treat your daughter. I also agree that she needs to see a non peds rheumy. I would keep trying to see someone ASAP.

Yes, it's very hard to watch our kids be in pain. I know my daughter has shown pain issues, and lupus symptoms on and off since she was like 9. She still to this date doesn't have a formal DX for lupus. Shes away at college and working the hardest she's ever had.

I will keep your daughter in my prayers and I hope that you meet a good Rheumy who will get to the bottom of all her trouble. Hang in there and don't give up, help will show, when you least expect it.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/19/2013 1:04 AM (GMT -6)   
I'm going to try to make this comment short, for I read everything every one said and you got a lot of good advice. I have lupus, the only sure way they found out that I had lupus was a biopsy. After having lupus attack my kidneys for years I finally was in remission. Several years later I was living in florida. One day I woke up feeling like I had the flu after a week of being sick, my sis took me to a Doc's Inn, that doctor took a test and told me that I was back in active lupus. He left the room shortly then came back he said to me that if I would allow him to give me a shot of prednisone 120mg, the highiest I had been on was 80mg. before he assured that I would go into remission with in 4 months. Better then my previous attack of four yrs so I told yes give it to me. I won't lie it was a tuff 4 months, yet he was right I did go into remission. He was a young doctor and I thanked God for him, that was eight years ago. So far I'm still in remission. God Bless
JJ

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 11/20/2013 11:31 AM (GMT -6)   
Laura, I am a new member too and I can totally relate to your daughter's problems. Mine came on in a similar way and it was frustrating to the nth degree. All the symptoms are very familiar to me, the chest pain - (rib pain I would call mine) costochondroitis, is something I've had about five times and it is eased with steroids, although extremely painful. The fast heartbeat was also a symptom I had at the beginning and the rash, my spots were all red and purple not 'bruise like' as your daughter had. Reading the 'Spoon Theory' (google it or look at the resources on this site) helped me realize I am not alone, please recommend it to your daughter, and you read it too. It will help you and her understand that you are not alone. It is the first time I've seen it all in print, it's so very hard to explain to anyone how difficult every day is when you're suffering like this. This site is incredible, I'm finding out so much more about myself and my 'lupus like symptoms' - I don't have a proper diagnosis yet either. I've decided to try a new medication recommended by my nth rhemy doc, and not worry so much about putting a name on the disease, I'm just ready to be free from the pain. Good luck to you both, keep searching and researching.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.
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