Cushings anyone?

[hilary1617]

Hi,

Could anyone who has experience with Cushings and is willing to share some advice let me know here or send me a pm? We need to find a vetted expert for our 12 year old son!

We're working with a local Chicago pediatric endocrinologist, who is great, but Cushings is not commonly seen in her practice. I'm having a tough time finding true subject matter experts who will take on pediatric cases. The only expert I've been able to reach who will see children is primarily a researcher (Dr. Friedman), who sees patients only on a limited basis and does not accept insurance.

Thanks!
Hilary

 

[southernlady]

Hi,

Could anyone who has experience with Cushings and is willing to share some advice let me know here or send me a pm? We need to find a vetted expert for our 12 year old son!

We're working with a local Chicago pediatric endocrinologist, who is great, but Cushings is not commonly seen in her practice. I'm having a tough time finding true subject matter experts who will take on pediatric cases. The only expert I've been able to reach who will see children is primarily a researcher (Dr. Friedman), who sees patients only on a limited basis and does not accept insurance.

Thanks!
Hilary

Maybe Boston? http://www.childrenshospital.org/conditions-and-treatments/conditions/cushings-syndrome

 

[bearmom]

It happened to be a researcher that initially informed me I had cushings, and finding a dr with a clue to follow up was an issue. VERY good that your son is diagnosed while still young. I'm sorry I don't know of any specialists there (or here, for that matter) that may help, and hope someone pops in near Chicago that does.

 

[Clematis]

I suggest looking at the recent research into pediatric Cushing's then tracking down the publishing doctors. Many researchers are clinicians as well, especially as many major hospital systems have put pressure on their docs to publish in order to build credibility of the hospital's brand.

I'm sorry your son and your family are going through this.

 

[hilary1617]

Thanks to everyone for the suggestions.

Just wanted to circle back on this. We have decided to go visit the L.A. doctor who doesn't accept insurance, Theodore C. Friedman M.D. Ph.D. He appears to be among the very top in his field at diagnostics and his protocol for testing takes place over one week, so it will be minimally disruptive. Plus, the location is perfect for a Spring break trip, so we can keep things light.

For what it's worth, I am also impressed with Alice C. Levine, MD at Mount Sinai, but her focus is on adrenal glands and we suspect pancreatic or pituitary origins at this point.

 

[DSRIGGS]

Thanks to everyone for the suggestions.

Just wanted to circle back on this. We have decided to go visit the L.A. doctor who doesn't accept insurance, Theodore C. Friedman M.D. Ph.D. He appears to be among the very top in his field at diagnostics and his protocol for testing takes place over one week, so it will be minimally disruptive. Plus, the location is perfect for a Spring break trip, so we can keep things light.

For what it's worth, I am also impressed with Alice C. Levine, MD at Mount Sinai, but her focus is on adrenal glands and we suspect pancreatic or pituitary origins at this point.

You weren't able to find anyone at NW, UC or UIC? We found a world class GI at NW who diagnosed Cameron's issues. Obviously different fields but I am surprised that Chicago doesn't have a world class Cushing's Dr.

I am sorry that you guys and your son have to deal with this, but good luck with the LA doc. I would hope that this Dr could recommend somebody locally to follow your son....and not taking your insurance, man that crap ticks me off. This isn't Cosmetics.

 

[hilary1617]

You weren't able to find anyone at NW, UC or UIC? We found a world class GI at NW who diagnosed Cameron's issues. Obviously different fields but I am surprised that Chicago doesn't have a world class Cushing's Dr.

I am sorry that you guys and your son have to deal with this, but good luck with the LA doc. I would hope that this Dr could recommend somebody locally to follow your son....and not taking your insurance, man that crap ticks me off. This isn't Cosmetics.

Thanks for the well wishes!

The top Cushings experts in Chicago refuse to see a pediatric patient. Son has been seeing an endocrinologist at Lurie, but they just don't see Cushings in kids often, so they've only witnessed it a couple of times in their practice.

Plus, there is a serious, emerging customer service issue. He had tests weeks ago and despite two follow-up calls, no one from the endo office has shared the results with us. We managed to get a peek on screen during a cardiologist visit - and a number of the results beyond the urinary free cortisol are well out of range and in particular concern me because they indicate possible liver issues (e.g. ALT 47 (normal range <31 male 12-17)). Plus the cardiologist did an echocardiogram after EKG was abnormal and has indicated there is left ventricular wall thickening. It looks to me like our kid's organs are actively being damaged by all the cortisol. That may or may not be important to an endocrinologist who sees labs all the time, but he's my baby and I can't help but worry. Not happy with no one returning our calls.

Dr. F doesn't take *any* insurance. He's a full-time researcher that only holds clinical practice one night a week. General follow-up will be via email and skype, with collaboration with pediatrician, surgery if needed, possibly elsewhere...

 

[DSRIGGS]

Thanks for the well wishes!

The top Cushings experts in Chicago refuse to see a pediatric patient. Son has been seeing an endocrinologist at Lurie, but they just don't see Cushings in kids often, so they've only witnessed it a couple of times in their practice.

Plus, there is a serious, emerging customer service issue. He had tests weeks ago and despite two follow-up calls, no one from the endo office has shared the results with us. We managed to get a peek on screen during a cardiologist visit - and a number of the results beyond the urinary free cortisol are well out of range and in particular concern me because they indicate possible liver issues (e.g. ALT 47 (normal range <31 male 12-17)). Plus the cardiologist did an echocardiogram after EKG was abnormal and has indicated there is left ventricular wall thickening. It looks to me like our kid's organs are actively being damaged by all the cortisol. That may or may not be important to an endocrinologist who sees labs all the time, but he's my baby and I can't help but worry. Not happy with no one returning our calls.

Dr. F doesn't take *any* insurance. He's a full-time researcher that only holds clinical practice one night a week. General follow-up will be via email and skype, with collaboration with pediatrician, surgery if needed, possibly elsewhere...

I certainly understand about wanting results from testing. That is ludicrous that they won't share his results, and I too would not be happy and would be pushing that office for results. One thing I can tell you from Cameron and from me having tons of lab testing over the years. Things can be significantly out of range and Dr's don't get excited. For example Cameron has had ALT values in the 150's before with no concern at all from Dr's. The next time he had a lab they were well within range...no explanation other than things are out of whack sometimes. That being said, they owe you results, an explanation of said results, and retesting if things are significantly out of range. Were the labs tested at a local hospital and can you get the results from an online portal? My labs are ordered through my PCP but I see the results online via the portal from OSF.

I don't know anything about Cushings, but I understand completely about you doing what you need to do for your baby so good luck getting answers and as a parent I know you would go to Timbuktu if you have too.

 

[DianaCox]

Customer service issues indeed! I would be making a VERY big scene in the doctor's waiting room after no callbacks within 2 days. Not because it is necessarily that serious, but because I cannot STAND to be treated that way.

 

[hilary1617]

Customer service issues indeed! I would be making a VERY big scene in the doctor's waiting room after no callbacks within 2 days. Not because it is necessarily that serious, but because I cannot STAND to be treated that way.

You can imagine how frustrated we are. Challenge is, there is so much going on across the board that there's no energy left to fight this particular fight. We're just cutting our losses.

The silver lining is that it helped push us toward what is a better solution - seeing a vetted expert.

PLUS, there is the bonus of a much needed family vacation. We haven't been in LA in a few years and have never been to Santa Monica, where we will spend four days lazing about before heading inland for testing. Also, we will make it to Universal Studios for the new Harry Potter experience on the tail end of our visit. We all really need to de-stress so this will be perfect.

 

[DSRIGGS]

You can imagine how frustrated we are. Challenge is, there is so much going on across the board that there's no energy left to fight this particular fight. We're just cutting our losses.

The silver lining is that it helped push us toward what is a better solution - seeing a vetted expert.

PLUS, there is the bonus of a much needed family vacation. We haven't been in LA in a few years and have never been to Santa Monica, where we will spend four days lazing about before heading inland for testing. Also, we will make it to Universal Studios for the new Harry Potter experience on the tail end of our visit. We all really need to de-stress so this will be perfect.

Enjoy your time and since you will be right there, go to the Reel Inn to get some of the freshest fish you will ever have. It is very simple restaurant with no frills, but man it is delicious.

 

[hilary1617]

Dr. Friedman was very thorough and let us know within 48 hours that a pituitary tumor was visualized on MRI. Well worth travelling to see him. Further testing ensues.

P.S. While other ladies may carry Prada, Jimmy Choo and Fendi bags on their Rodeo Drive strolls, I instead had the pleasure of seeing and being seen while carting a gas-can-style jug full of 24 hours-worth of my son's urine (shortest path to the nearest Labcorp from our hotel). So, if the Fall fashion shows include a "Derelicte" orange jug handbag, you'll know where the trend originated...

 

[newanatomy]

I hope you get some good news soon!

 

[DianaCox]

I was wondering in my vague way (as in, know-nothing-but-something-sounded-familiar) if it might be pituitary. I hope this is one of the "easy" ones to remove and it stays removed.

 

[hilary1617]

I was wondering in my vague way (as in, know-nothing-but-something-sounded-familiar) if it might be pituitary. I hope this is one of the "easy" ones to remove and it stays removed.

Thanks for the positive thoughts! We're just so grateful to have some answers so we can get the right help for Liam. He's a really good kid and middle school is hard enough without what he has been enduring as his body betrays him.

The MRI report indicates that it is a "suspicious 4mm intraglandular lesion which is midline and left para midline in location. The lesion exhibits low signal on the T1-weighted precontrast coronal sequence and is also hypointense on the post contrast T1-weighted sequence. "

I know nothing about extraction, but don't like the use of the term "intraglandular" as it implies to this layperson they will need to do some digging (or cut and apply pressure?). Initially the size of 4mm seemed small/manageable to me, though upon further thought, that's not so tiny considering the pituitary for a prepubertal child is probably only about 5-6 mm.

This is the same exact thing that happened to me. Normal weight - typical diet and active lifestyle with no changes, then a massive, sudden, unexplainable weight gain. Only, in my case I was 25 years old. He's only 12. His BMI is now pushing 40. It breaks my heart.

The picture on the left is from 18 months ago (age 10). The picture on the right is from Mardi Gras this year (age 12).