My Son's pediatric rheumy appointment

Rosie had asked on another post about my son's pediatric rheumy appointment that happened last week.  I started to respond on the other post, but decided to start a new topic.  THe appointment was a nightmare and there have been lots of stressful things since then.  There really is no short version of the story, but I'll try my best.  We drove 3 hrs for the appointment with a woman who is supposed to be a good pediatric rheumy.  We ended up spending most of our time with a young guy who was doing his fellowship.  He was one of the most rude and arrogant people I ever met (he will be one of those docs that none of us would ever want to deal with).  Right away he put us on the defensive acting like he didn't believe anything we were telling him and challenging almost everything we said.  He even wanted some kind of proof that I was being treated for lupus. I figured we would hurry up and get done with him and then get time to tell everything to the pediatric rheumy, but the fellowship guy went out and consulted with the rheumy and she came in the room thinking she had the full story (which she didn't) and kind of poo-poo'd us and said that sometimes kids get aches and pains and we don't know why and we really don't know why Josh's sed rate and ASO are very elevated and why he sometimes has a postive ANA, but we should really just focus on diet and exercise to help him feel better.  I was just in shock and I got teared up and asked her what we were supposed to do on the mornings that Josh was in so much pain that I had to help him out of bed and help him get dressed and help him walk.  She said that the "fellow" had told her that Josh was fine in the morning and didn't have any problems.  After she learned this, she said she would order an MRI of Josh's feet and ankles and that he could have that done closer to home and they took an x-ray of his hip.  We didn't have time to talk to her about anything else so we left there with no directives about meds or treatment or anything.  We were supposed to be going there for some direction as to what kind of treatment Josh might need so I was totally caught off guard and never expected to be in a position of having to try to prove that Josh lives in moderate to severe pain most days. I called Josh's regular pediatrician the next day and she was just wonderful (she's been our saviour) and she is going to call the pediatric rheumy once she receives the report and really explain Josh's case.  In the meantime, our regular pediatrician wanted Josh to try a quick prednisone burst to see how he responded.  The prednisone has made his joints feel much better but has made him so sick to his stomach that he has come home from school everyday. He's taking Prevacid and his stomach still hurts.  Luckily he won't be on it much longer.  Josh feels so mixed up because it's helped his joint pain better than anything else, so he doesn't want to quit taking it, but he hates how sick it makes his stomach. I'm just way way stressed out and don't know what to do.  I don't want Josh on a bunch of harsh meds, but I don't want him in pain either.  I am telling myself to try to slow down and just take things as they come.  There's lots lots more to tell, but I don't want to make this so long that it is too hard and cumbersome to read.  This is already really long, so I commend anyone who made it all the way through.

Hi,

I know exactly how you felt, we are at a teaching hospital as well some of the res. or fellows are good some need a lesson in compassion.  There was one particular appointment that they made Sarah cry, when they left the rm. she said they don't beleive me.  Her bloodwk last December did not show she had the disease, some of the titres were only slightly related.  It was a Rheum Psyciatrist who diagnosed Sarah as she was having small little hallucinations and that trigger the Dr. to react so quickly.  I don't know if you read my post about my Sarah but we have been through quit the summer and I know how you feel when it comes to my child I am a mama bear.

The Doctors were very surprises that Sarah got so sick and they also apologised to us for not making the right call.(that was the second admission and they thought her problems were due to stroke not the lupus that was affecting her brain.  Let me tell you she is being followed with kid gloves now.

My advice to you is don't give up, and not all young Dr.s in training know it all I have had to speak to the senior to make corrections many times.  Be informed, and research, listen to the others that are experienced with this disease.  I didn't didn't even know what antiphospholipid antibodies till I read it here.  I asked the Rheumy did she have this, as she had a clott to the brain and he said yes that was 4 mths after.

Hopefully you get your answers, hugs to you and your son

Sharon mom to a 17 year old daughter that has CNS Lupus,stroke,sle,APS

Hippi,

  I'm sorry to hear what you and Josh had to endure...((Gentle Hugs)). I know you are so frustrated...bless your heart! I hope Josh's regular doc can get something going for him soon to help him. I'm sure this stress is taking its toll on you too. Please try to rest as much as you can and take care. Update us when you can. You and Josh are in my thoughts and prayers.

                                                           Babs

Hippi,
I'm so sorry you and Josh had to go through that. Unfortunately, been there many times and just had to keep trying docs till I got a good one, then the good doc was shaking his head in disbelief that no one did anything. I'm glad the pediatrician is helping out and maybe she can help you find a better rheumatologist. Is Josh taking prednisone pills? Has he ever had shots? They don't last as long in my opinion but you bypass the stomach. Another possiblity would be to find out if he has irritable bowel syndrome, I remember him having some constipation a while back. Then, some dicyclomine (bentyl) an antispasmodic that does wonders for gut pain. You might ask about it if his pain is abdominal, like gas pain. If in the stomach, I wash the pills down with lovely old maalox, which makes them take a little longer to work, but keeps me from getting heartburn. My mother used to give me aspirin in a big blob of jelly to keep it from hurting my stomach when I was little.

I agree with the various remarks regarding the rheumatologists' collective incompetency and rudeness. More and more large medical centers are recruiting docs like these. They do little or nothing but take your money, and are consistently incompetent when something bad does happen. I would strongly urge you to ask your doc to help you find someone better, even if you have to travel a little. I would have such a hard time trusting them and it is doubtful they will ever admit they were wrong or apologize or even acknowledge their inappropriate behavior. I hope that you keep a file of josh's test results and other medical labs and stuff. I kept one for my son and for myself so that I could shove evidence in their face, but I've found that with that type of doctor, even with positive test results and adequate proof, they will still not adequately or appropriately care for your son. Perhaps, your son's problems scare them and are over their heads. At any rate, I wish you both the best and hope that you find another option for Josh's care, these people just don't seem to care at all. And I don't think the woman doc is any better than her resident after all, she hired him and depends on him for intake.

I would think that just about any pediatric rheumy would care more and provide better care. I hope that your primary care doc can fill in until this rheumie visits the wizard and gets a heart and a brain or you find a different doc. Perhaps your pediatrician will have the same problem with them and get you in to someone she likes that is a better doctor. I will be thinking of you both and praying for you.

Hey Hippi . . . GREAT idea!! So glad you did send that email. Nothing to lose and everything to gain. Darned it all . . . its hard enough to deal with the illness w/o having to strategize how to get a doctor to listen. I hope the book is helpful and I'm still hoping your pediatrician will be able to get a rheumy's attention. Poor Josh! Keep us posted sis . . . and give Josh a big hug from Rosie!!! (and a cup of hot chocolate!!) Blessings!

I am so glad that you at least got a lead from the N.Y. specialist for compassionate and caring doctors in the Mid-west. I wish I had asked someone in the know before I ended up going through so many idiots while being so sick. I finally got my current doctor by talking to a bunch of women- everyone I asked in this area gave one of 2 names. 1 wasn't taking patients and I was told he could be abrupt, something I really didn't need. But my rheumy was the one everyone said was kind and sweet and actually took time with the patient. Heck the picture of the rash I was getting when tired or feeling really ill, or worse with less than 5 minutes of sun and 30 SPF sunscreen was an almost perfect representation of the butterfly/malar rash. Now my checks get pink but the rash is no where near what it was. I am so glad I asked around because I would have died if I hadn't. I do mean died, a few really nasty things happened within the first 6 months after she began treating as a result of the no treatment for about 14 years or so.

For Josh, you really need to get the tests the rheumy ordered, but keep a record of all tests yourself so you can SHOW them to any doctor he may need to see. I have run across a few doctors who only send the records that support their conclusions about what is happening and leave out anything that contradicts them. Sad but true. Thus it becomes our responsibility to show how much they have excluded to anyone else we see. Otherwise they do not get the whole picture. Besides sometimes you can call the doctor on ignoring a certain test and suddenly they realize they missed something major. I called my husband's old doctor on his thyroid- they kept saying they had checked and it was fine but I said no one has ever bothered to check it and they were trying to prove me wrong and discovered they didn't check it. Turns out he is hypothyroid- something that affects a lot of other things and can get really nasty untreated. If I hadn't gotten copies of every single lab ever drawn on him I wouldn't have been able to say for sure his thyroid hadn't been checked. GOOD LUCK!

Hippi,
I don't know where you are at, but I had a very good primary care doc in the Toledo, OH area that could refer you to a good rheumatologist. Health care is better in Ohio than in Michigan, I believe, my family, friends and I have had bad luck in Michigan area. My sister lives in Indiana and is an RN and I could see if she knows anyone. Her daughter is 16 and had some AI problem and saw a rheumatologist and she liked the person she saw. Medical College of Ohio in Toledo is a pretty good place for diagnosis though there are better hospitals to be in because they take everyone there, but they are good, being a medical college. Perhaps seeking out a pHD in rheumatology would be good, they tend to be more in to their field than a regular doc and may perform more tests and know up to date state of the art treatments. Can you explain to the primary care what happened at the rheumies and see if she can't recommend someone she knows and/or is better? I have a great rheumie here down south. Let me know if you are interested in me checking with my sister or anything. Also, maybe you can talk to the nurse when setting up the appt and ask is the doctor good before you make an appt. I've done that. You can kind of tell by there voice and what they say whether the doc is good or not. If they are gushing over with good things to say, then its probably a good doc, if the answer is just formal or a pat response, then probably not so good. I did that with my urologists and it worked out well. Are you near Mayo clinic? They can be pretty good.