Best doctors/clinic for Lupus/itp

My sixteen year old son has Lupus and ITP. His Rheumatologist seems knowledgeable, but we would to get him in to a top rated clinic or doctor on the East Coast for a full evaluation. Would any of you with Lupus and/or ITP recommend a hospital and/or doctor? Thank you, in advance, for you opinions.

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After the Rheumatologist. try to listen what DR.ASH, here www.ashcenter.com/ has to say.

Where are you on the east coast? I used to go to the Lupus Center of Excellence in Pittsburgh. They are a research facility.

www.upmc.com/Services/RheumatologyandImmuneDisorders/services/Systemic_Lupus_Erythematosus/Pages/CenterforSystemicLupusErythematosus.aspx

We are in Richmond, VA, but are willing to go up or down the coast. Was the Lupus center in Philly what you hoped for when you got there?

Thanks so much for answering. As so many of you here understand because of your own personal experiences, our son has been through the ringer for a little over a year. Steroids, thankfully, do bring his platelets up, but he has been on them for a year now. We are trying the hydroxychloroquine (4 months now) along with the steroids. The biggest problem, of course, is that he isn't able to do all the normal things he would like to because of sun sensitivity and low platelets. The rheum gave him permission to go surfing for the day and he was in the sun a few hours mid-morning, and again for a couple of hours in the later afternoon. The next day, as usual, he woke up with a fever and felt so bad he didn't get out of bed till mid-day. I emailed his rheum about it and she said she doesn't think it's related to the Lupus.....mother's instinct tells me otherwise. There is a definite pattern there - from the time he was 4 or 5 years old.....I don't think it was a virus because, by that evening, he felt better and by the next morning he was back to his old, always tired, but chipper self. The last time he spent a whole day in the sun, his platelets dropped (even on steroids and hydroxychloroquine) to 62 from 98). Not huge, but a definite drop. Again, the rheum doesn't seem to see the correlation. Also, she says she doesn't think his exhaustion is due to the Lupus either - just due to being a teenage boy. Again, I question this a bit. The doc says that the tiredness from Lupus comes from inflammation, and thankfully, he doesn't show any signs of that symptom yet. I'm sure she's right, but even so, he seems more tired than his friends and he gets a lot more rest.

So, we are frustrated and thinking it can't hurt to go to a specialty center for a full evaluation and an opinion.

Thanks again for listening and for any advice you may have.

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The Center I went to was in Pittsburgh, not Philly. I was happy with the care that I received and loved my doctor, but the distance got to me after a while so I got a doctor closer to me. The thing that I have found after having five Rheumatologists in the last seven years, is that no one has the answers. None of them have been able to really make my life any better so far, although my new Rheumatologist is the most aggressive yet.

I do believe that the sun affected your son the way you said it did. The sun has never bothered me, but flourescent lights do. I can't go into the large stores for more than 10 minutes or I end up sick like that. I went to the grocery store yesterday, 45 minutes in there, and felt like I had the flu the rest of the night and most of today. I can't understand why a lot of doctors don't get that. I know several other people with Lupus who get instantly sick in the sun. One of my pet peeves.

Fatigue not related to Lupus? Are you kidding me? I'm irked that a Rheumatologist would even say such a thing. If anything, you need a doctor who will at least acknowledge the common symptoms of Lupus. I had a teenage son. The difference between normal teenage sleeping and illness sleeping is that if they are normal, they will continue to be awake and active for the fun things, consistently. If they are too tired to have fun, something is wrong. My son would sleep all afternoon if we let him, but if he had early morning plans, he was up with the birds.

Thanks so much, Sandi, for your honesty and understanding. Since I last posted, I had a long chat with my son's pediatrician and we have decided to get a second opinion from another pediatric rheumatologist in our hometown. The pediatrician is helping me acquire all of our son's medical records and will send them to the new rheum. Hopefully this will be a better fit for us - what we really need is for someone to better explain things to us and to listen to our son without dismissing him. He is not a complainer or a hypochondriac so it is frustrating when his current rheum tells him he is "just regular teenage tired" or that his feeling so sick after a day in the sun is "completely unrelated to Lupus" without any explanation.

As sorry as I am that you've had to go down this road before him, I am thankful you are willing to listen and offer advice.

I will keep you posted on our second opinion/our attempt to find a rheum who can better relate to our teenage son.

Thank you, again.

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I'm glad you are getting another opinion. I hope this doctor is better!

I have found that Rheumatologists fit into two groups - they either 'get' Lupus, or they don't. The ones that don't are the ones that tend to tell the patient there is nothing wrong with them, or they don't listen to the patient, or they don't respond with proper medical intervention. I have been very frustrated to have read credible articles about Lupus symptoms over and over again, but was told by a doctor that my particular symptom was not related.

The doctor that I saw in Pittsburgh did take time to listen....always. She would come in and sit there like she had all the time in the world, and we could always compromise or come to an agreement about the appropriate action. If I suggested a certain test, she always accomodated and never told me it wasn't necessary. If the new doctor doesn't work out, let me know and I'll give you more info about her.

Thanks, again, Sandi.

I will certainly let you know - I looked into the Rheumatology clinic in Pittsburg (sorry I said Philly in a previous response - I am still getting used to this message board thing and didn't know how to get back to your response to see if I had it right without erasing the one I was typing) and was impressed. It looks like their theory is to look at the person as a whole and not just a disease. We made an appointment with the new Rheumatologist here in town for November 3rd. I will let you know how it goes. If this doesn't work, we are definitely going to need the name of your doctor because this doc is the only other pediatric rheum in our city.

It is so nice to converse with someone who understands the frustration of Lupus AND teenage boys! You "hit the nail on the head" when you said your son could sleep all day if you let him, but would wake up early if he had plans. Our son has never slept in much and still doesn't. Not normal for a teen.....says he can't stay asleep, but lies in bed in the morning feeling miserably tired. Ends up going to bed early - again, not normal for a teen and he ends up missing out on evening social event because he is just too tired to go. I wonder if it could be the steroids keeping him from sleeping in? I'll be so glad when we can finally take a break from them!

Thank you, again, and I truly hope you are feeling well these days.

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My son does stay up half of the night. He does work an odd shift though, but is never too tired to miss out on his social life. Too tired to get the garbage out, too tired for dishes, but not too tired for poker night. He's 22.

Prednisone can affect sleep, but mostly only the higher doses.

Anytime you need to talk, I'm here!

Do you know of a good doctor for lupus in Erie, PA?

I don't, sorry.