Top place in US to get toddler illness figured out? PLS help.

finallyamommy

Our son has a mysterious bunch of symptoms that no one here seems to be able to diagnose and/or treat.  

Has anyone had to take a child to Mayo or Johns Hopkins or somewhere like that?  How did you choose where to go?  We're not looking for a specific treatment at this time--but looking for some place what can figure out what is wrong.  

Any advice is appreciated!

Thanks!

minnasmommy

we took our DD to CHoP (Children's Hospital of Philly) they are consistently one of the top children's hospital in the country (if not the world). I couldn't have been happier with the services we got there. If it does turn out that S needs to have a procedure done on her heart we would not hesitate to bring her immediately back to CHoP.

my DD has a heart condition so the hospitals that came up and were recommended were CHoP, Children's Hosp of Boston and a children's hospital in houston texas. CHoP did get the best recs and reviews for kids with heart conditions.  

good luck with your son. what are his symptoms related to (if you know)? I know when I asked multiple professionals and did my own research hospitals are (or seem to) specialize in some things over others.

 

AnneUCSB

Lucile Packard Children's Hospital (at Stanford University in California) is a top-notch children's hospital and always ranked in the top 10.  People come from all over the country for their specialty and high-risk services.

KellyMichelle

Texas Children's in Houston is awesome.  They have tons of specialists.  I have a friend whose DD was diagnosed with a rare disease by the docs there.

A-baybride

Where are you located?  My parents went through this with my little brother.  After spending years going to one specialist after another ruling out all kinds of conditions, his doctor had him admitted to the hospital at UCSF for a week of testing for everything under the sun.  It worked - one of the many tests revealed that he had neuroblastoma and he was on the operating table the next morning.  We lived just north of San Francisco at the time, so I'm not sure how much location vs. specialty was a factor in their choice of hospital.  Has your pediatrician recommended a hospital that specializes in pediatrics?  Good luck figuring it out and treating whatever it is - I know it has to be frustrating and scary.

GreenEggs&Ham

Golisano Children's Hospital in Rochester, NY  (part of Strong Memorial Hospital)

 

also - anyway in Boston - because there are so many top hospitals and you are able to get referred to the right doctor

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shiloh17

Chop definitely! Childrens of philly is consistently ranked #1, and people come from all over the world to get treatment here. Im so lucky to live so close by! Good luck!

finallyamommy

Thanks for your message--it helps to talk it through.

Yes, we've seen both a derm and allergist.  

The first four derms we saw gave me lotion or cream steriods and said they would see me in a month.  None of them listened when I said we've tried steriods.  In fact, he's been on steriod creams for a year now--doesn't make a difference.  I can apply them once, twice, three times a day, it doesn't even begin to make a dent.  So that leads me to be suspicious of eczema as a diagnosis--steriods should help eczema, at least some.  And then about two months ago, he started to have staph and steph infections on the raw spots and no amount of antibiotic is kicking that.  We have now found a wonderful ped derm who has done a skin biopsy and will be willing to do a case consult.  

Food allergies, we've had him tested, both using bloodwork and doing skin patch testing.  A few things show up--egg, wheat, peanuts, cat, dog.  And so we found new homes for our cat and dog.  That didn't help the rash.  And for about the past four months he's been on a special formula--Neocate Jr--that should be hypoallergenic.  Food makes the rash much, much worse, but the special formula doesn't clear up the rash...odd.  But that's all he takes right now--the special formula, no food.  

So our derm, allergists, and ped (who is wonderful) concur we need a GI person, whom we are seeing this week.  Not sure if she'll scope him or not, I think so and am dreading it so much.

But we need answers!  My beautiful son's skin looks like he's been burned.  It bleeds every day and he also needs to be able to eat!  

So that's why I am just gathering info about Mayo, etc.

karen6784

shiloh17:

Chop definitely! Childrens of philly is consistently ranked #1, and people come from all over the world to get treatment here. Im so lucky to live so close by! Good luck!

This exactly.  Our experience with CHOP was A+.  Good luck!

wellfleet04

My son is seen by doctors at Childrens Hospital in Boston.  It is consistently ranked very near the top in many specialties and I have been very happy with the doctors we have seen.  Boston is also a good location because even if the best doctor is not at Childrens, they may be at another top hospital here (Mass General Hospital for Children, Tufts Floating, Dana Farber, etc).  But, if you know you need a GI, or an allergist, or whatever, I would try to find a) the best Children's Hospital in a reasonable distance to you and b) which one specializes in what you need.  Different departments at different children's hospitals are ranked differently.  GL.

minnasmommy

finallyamom--what you are describing is similar to what friends of ours went through with their son. 

skin allergies, food allergies....it wasn't until they took him to CHoP that they got answers and now their son is like a new kid. let me know if you'd like me to get Dr info for you. maybe just to call them and see what they say.  

we are so lucky to live in the US...so many great kid's hospitals!

where do you live?