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View Full Version : Can anyone recommend a great pediatric diagnostician?



SMF11
Mar. 30, 2013, 02:59 PM
I've written about my middle son before. He's had a lot of health problems, and we can't seem to get to the bottom of it. His current pediatrician just treats the problem of the moment and hasn't (until now, with my strong urging) stopped to think about WHY he's having all these problems.

So, I am thinking I will need to take him to a teaching hospital where a pediatrician can look at the big picture and help us figure out what tests he needs and what direction to go in.

We are close enough to either of the NY hospitals (Cornell, Columbia) or to Yale or to Boston Children's Hospital. It's a long shot but can anyone recommend a doctor at any of these hospitals?

Many/most of my son's problems stem from inflammation -- he's had episcleritis (inflammation of the eyes), severe, sudden joint pain out of the blue, and now chronic appendicitis that was caused by inflammation, and which just required emergency surgery earlier this week.

I am just waiting for the other shoe to drop -- I'm concerned that in six months another organ will become inflammed and cause problems.

Any other advice would be appreciated too!

soloudinhere
Mar. 30, 2013, 03:09 PM
I would recommend the pediatric practice at Mass General in Boston.

They have at least 2 doctors who specialize in the kind of issues you're having, including one Rheumatologist who is excellent (Dr. Rothermel). Mass General is consistently ranked as one of the nations top hospitals and the Mass General Hospital for Children is excellent.

I have a friend whose daughter goes to Boston Children's regularly-- but I personally have dealt with Mass General a lot for my own treatment.

LauraKY
Mar. 30, 2013, 04:04 PM
SMF11, I think I remember you saying that you've determined it's not a tick borne disease, right?

starhorse
Mar. 30, 2013, 04:15 PM
I would HIGHLY recommend Children's Hospital Boston. I was treated there from 2000 - 2010 and they are fabulous. I saw many doctors during the diagnosis, and then saw specialists once I had a diagnosis (autoimmune disease), and they were all SO wonderful. Also had surgery there and I have an unbelievably small scar given the procedure.

I cannot say enough good things!

SMF11
Mar. 30, 2013, 04:24 PM
LauraKY, yes, whatever it is is not a tick-borne disease.

Starhorse, you don't have to convince me that Boston Children's is a great hospital -- but what I need is a name of a doctor!

My thinking right now is that he has some kind of autoimmune thing going on -- there is a family history of autoimmune conditions. It may be something as simple as nonceliac gluten sensitivity. Or not.

soloudinhere
Mar. 30, 2013, 04:43 PM
LauraKY, yes, whatever it is is not a tick-borne disease.

Starhorse, you don't have to convince me that Boston Children's is a great hospital -- but what I need is a name of a doctor!

My thinking right now is that he has some kind of autoimmune thing going on -- there is a family history of autoimmune conditions. It may be something as simple as nonceliac gluten sensitivity. Or not.

My friend's 4yo daughter sees Dr. Natalie Shaw at Boston Children's. Her daughter has an autoimmune disease although the specific one, I do not recall.

However if you call their Endocrinology department, they will get you in to see one of the fellows who can make a recommendation on Dr. based on what is going on.

SMF11
Mar. 30, 2013, 04:58 PM
My friend's 4yo daughter sees Dr. Natalie Shaw at Boston Children's. Her daughter has an autoimmune disease although the specific one, I do not recall.

However if you call their Endocrinology department, they will get you in to see one of the fellows who can make a recommendation on Dr. based on what is going on.


Thank you, I will look up Dr. Shaw. However, I don't want to start with an endocrinologist. I need to start with a pediatrician who will then figure out WHICH specialists to see.

I've (of course) been asking for a lot of advice, and the gastroenterologist friend says take him to a ped. gastroenterologist; the Aunt who's a nurse says take him to an immunologist; others say a rheumatologist (he's seen one already) and the surgeon who just operated on him says take him to a colorectal surgeon. Can you see why I need a DOCTOR to figure out the best course of action?!

Ruth0552
Mar. 30, 2013, 05:32 PM
If you want to do one of the Boston Hospitals try posting on the equinesite.com bulletin board. There is a section specifically for MA and I feel like there are several doctors that post on there as well.

sketcher
Mar. 30, 2013, 05:46 PM
SMF11 I sent you a PM.

CDE Driver
Mar. 30, 2013, 07:32 PM
Send Flash Gordon that posts here a PM. She has gone through A LOT with getting her son diagnosed and she is in NY. I'm sure you will find her a wealth of information.

FlashGordon
Mar. 30, 2013, 07:41 PM
SMF, I am on my phone but wanted to chime in. I follow your page on FB and saw your son had not been well. I nearly commented but didn't want you to think I was some stalker weirdo, lol. I feel your pain and have much sympathy for your situation. My advice would be head to Boston or Philadelphia. Doctors sometimes get lost in details-- listen to the nurses and PAs.... it was an NP who finally diagnosed my son via very simple lab work all the specialists had overlooked. Please PM if you need an ear! I am happy to listen and will help however I can!

b
Mar. 30, 2013, 10:09 PM
There's some interesting research being done at Hospital for Sick Children in Toronto. It's based on animal models but it looks interesting and promising. When interviewed the researcher mentioned a connection between inflammation and gut health.

http://www.sickkids.ca/AboutSickKids/Newsroom/Past-News/2013/GI-tract-bacteria-may-protect-against-autoimmune-disease.html

From the above article: "Our findings point to a direct relationship between normal gut microbe composition and prevention of autoimmune disease."

Ask your gastroenterologist friend if if might be worth trying probiotics.

SMF11
Mar. 31, 2013, 08:47 AM
Very interesting, b! I just put him on probiotics on the theory that it couldn't hurt and might help.

FlashGordon, I'd be honored to be stalked by you! :lol: And I'm sending you a PM.

Jeito
Mar. 31, 2013, 08:51 AM
Children's Hospital of Philadelphia (CHOP) is a great hospital. I don't have children but I support (donate to) CHOP so I constantly get news and updates, and it's where I would take my children if I had any.

Natalie A
Mar. 31, 2013, 11:17 AM
Definitely agree with Mass General/Harvard, but will also add Mount Sinai to that list. I've had a lot of tests done by researchers/pediatricians from both (they're doing research on my neuromuscular disorder) and really like everyone I've worked with.

Punkie
Mar. 31, 2013, 11:37 AM
You need rheumatology more than a general pediatrician. Holly Rothermel at MGH is incredible. She was instrumental in getting me diagnosed as a child and getting me to the right specialists. Do you have a history of HLA-B27 in your family? It is linked to disorders like anterior scleritis (I have the posterior form; I know how awful it can be!), ankylosing spondylitis and peripheral joint disease, Reiter's syndrome, and ulcerative colitis. Not saying that's what he has going on, but scleritis is not common in young children and quite often genetically linked.

If you can, get an appointment with Holly; I would recommend her over anyone at Children's any day of the week. Though, if you need a geneticist, Joan Stoler at Children's (used to be at MGH) is incredible.

Best of luck, OP.

chai
Mar. 31, 2013, 11:49 AM
I would highly recommend Children's Hospital in Boston. My son had a virus that settled in his intestines. Five trips to the pediatrician resulted in being told repeatedly that he had Norovirus. I finally told her that she could either do the referral to a specialist or I was leaving her practice and she put us in touch with an incredible doctor at Children's Hospital who is a pediatric gastroenterology specialist, Dr. Gary Russell. I cannot recommend this gifted doctor enough. He looked at the whole person, not just the symptoms, figured out what was wrong with my son and treated him accordingly. Within a year, my son was feeling like his old self and had gained back all the weight he had lost. Dr. Russell was very kind, and many healthy years later, my son and I still remember him as an exceptional doctor and human being. I wish you all the best as you embark on your journey to help your son. I learned that you must be a strong and often outspoken advocate for your child when you're not getting answers.

SMF11
Mar. 31, 2013, 12:59 PM
Thank you Punkie and Chai, specific doctor names are just what I want. Both sound promising.

Chai, I've found that too -- I even had to be pretty forceful in the ER (we went in 3 days before his operation and they sent him home. When they seemed to be thinking it might be a stomach virus I had to emphatically say "I'm his mother and *something is seriously wrong*!"

BlueEyedSorrel
Mar. 31, 2013, 01:07 PM
If specialists at a place like Boston Children's are still at a loss, consider asking for a referral to the NIH Undiagnosed Disease program. I have no personal experience with them, but saw a presentation at a scientific meeting several years ago. Essentially, it's multi-disciplinary center dedicated to patients whose symptoms span multiple organ systems and don't fit with any known disease. It's not necessarily designed for treatment but more to figure out WHAT is wrong, in hopes that can guide some treatment by the referring physician. Plus, since it's a research program, costs to patients and family are minimal, sometimes travel/lodging is provided.

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

Good luck,
BES

SMF11
Mar. 31, 2013, 01:12 PM
Wow, BlueEyedSorrel, I've never heard of that, and it is certainly very useful to know about! Let's hope I don't need it, but if I do this is great. Thank you so much for your help.

FlashGordon
Apr. 16, 2013, 10:13 AM
SMF, been thinking of you! How is your son? How are you?

SMF11
Apr. 16, 2013, 10:22 AM
Thanks for asking, we are fine. His regular pediatrician ordered a vast number of tests (blood) so hopefully that will give us a direction. Assuming he needs to go to a specialist I'll find one at a teaching hospital.

I have not discounted going to a naturopathic doctor either, but at the moment this is where we are.

SMF11
Apr. 16, 2013, 10:41 AM
Adding -- whatever is bothering him is still bothering him. He'll get joint pain out of the blue that lasts a few days, or a stabbing headache or some such thing.

Having a sick child is THE WORST!