Thank you to three very helpful posters!

[Beccabunny]

I wanted to express my gratitude to three people here who, most likely without knowing it, have been of tremendous help to DD9. Thanks to their advice, she finally has a diagnosis and is getting treatment.

A few months back, on the Disability Lines Complaint thread, I expressed my frustration at the judgement DD was facing because of her rapid weight gain, and my parenting was also being judged by people who assumed I just kept overfeeding her. Two posters, KPeveler and Honugirl, both suggested I have her checked for Cushing's Disease, something I had never even heard of. I began researching, felt DD had many of the symptoms, and asked her endocrinologist to at least run some tests. That's where I ran up against the doctor's ego. Apparently I wasn't supposed to make any suggestions. She dragged her feet about authorizing tests. She had no idea why DD's hormone levels were off, but she didn't want to do any further testing. I believe it was in another thread that I expressed my frustration with this situation, and another poster, Bookwormde, suggested I try the endocrinology department at DuPont. I took his advice and, amazingly, got an appointment almost right away. I was highly impressed with the new endocrinologist. She diagnosed DD with insulin resistance and explained exactly how that was affecting her hormones and was causing the weight gain. DD is being closely monitored and is getting the proper treatment for this condition. Had it not been detected, eventually she would have had diabetes.

So, as it turns out, DD doesn't have Cushing's Disease. However, I passed on the info I had received here to a friend who was very concerned about her son. He has now been diagnosed with Cushing's and is getting treatment for it. Thanks to three posters who cared enough to share what they know, two people are properly diagnosed and have great hope for a positive outcome.

These boards are not always friendly. Often there is intolerance for differing opinions. There are too many people who just come to the boards to argue and even attack others. However, I will always be extremely grateful to the three posters whom I have mentioned. People like them are the reason I continue to come back here. I just wish everyone could follow their example. Thanks again!

 

[bookwormde]

I am glad you were able to find a doctor who puts the patient first and figured out the “puzzle”. I am always a little nervous when I recommend a clinician or hospital, since if they cannot help I always feel a certain sense of responsibility.

bookwormde

 

[SueM in MN]

Thanks for posting the result of your search for help and your "Thank You."

It's nice to hear that things worked out for you.

The majority of posters are here trying to be helpful, but there are a small, vocal minority who are on the internet for other reasons.

 

[Puget Peach]

 

[honugirl]

I wanted to express my gratitude to three people here who, most likely without knowing it, have been of tremendous help to DD9. Thanks to their advice, she finally has a diagnosis and is getting treatment.

A few months back, on the Disability Lines Complaint thread, I expressed my frustration at the judgement DD was facing because of her rapid weight gain, and my parenting was also being judged by people who assumed I just kept overfeeding her. Two posters, KPeveler and Honugirl, both suggested I have her checked for Cushing's Disease, something I had never even heard of. I began researching, felt DD had many of the symptoms, and asked her endocrinologist to at least run some tests. That's where I ran up against the doctor's ego. Apparently I wasn't supposed to make any suggestions. She dragged her feet about authorizing tests. She had no idea why DD's hormone levels were off, but she didn't want to do any further testing. I believe it was in another thread that I expressed my frustration with this situation, and another poster, Bookwormde, suggested I try the endocrinology department at DuPont. I took his advice and, amazingly, got an appointment almost right away. I was highly impressed with the new endocrinologist. She diagnosed DD with insulin resistance and explained exactly how that was affecting her hormones and was causing the weight gain. DD is being closely monitored and is getting the proper treatment for this condition. Had it not been detected, eventually she would have had diabetes.

So, as it turns out, DD doesn't have Cushing's Disease. However, I passed on the info I had received here to a friend who was very concerned about her son. He has now been diagnosed with Cushing's and is getting treatment for it. Thanks to three posters who cared enough to share what they know, two people are properly diagnosed and have great hope for a positive outcome.

These boards are not always friendly. Often there is intolerance for differing opinions. There are too many people who just come to the boards to argue and even attack others. However, I will always be extremely grateful to the three posters whom I have mentioned. People like them are the reason I continue to come back here. I just wish everyone could follow their example. Thanks again!

Wow! That's wonderful news!!!!!! I'm so happy for you all. If you ever have any questions, feel free to PM me. I hope her insulin resistance is under control and will continue to be. Best wishes! Lots of luck!

 

[KPeveler]

so glad you got some answers!

I learned about this really odd disorder known as Ehlers Danlos Syndrome here on hte DISboards, asked my drs about it, and ended up not only getting diagnosed with it, but discovering a whole family history! The internet, and the DIS, is a great place to get ideas and share info, so we know what questions to ask our doctors!

 

[Libbyt]

I am glad you were able to find a doctor who puts the patient first and figured out the “puzzle”. I am always a little nervous when I recommend a clinician or hospital, since if they cannot help I always feel a certain sense of responsibility.

bookwormde

You are so right about this!!!! We've been dealing with my dd's mystery illness and have been visiting different doctors and hospitals for a couple of years. We have FINALLY found a doctor who looks at her as a wonderful mystery to solve. He realizes that he alone does not have all the answers and he is willing to REALLY collaborate with her other specialists to figure everything out. I wish the same for all the parents on here who are struggling to find answers for their children! Even with a great doctor and a fantastic hospital on your side, it's still a struggle.

 

[OneLittleSpark]

I'm so glad to hear that your daughter and your friend's son have both been successfully diagnosed! I'm just sorry you had to deal with the stubborn doc before you got there. Unfortunately some doctors are not good at taking advice, suggestions or requests from their patients, and get quite uppety if you show even the slightest knowledge about your own (or in your case, your daughter's) medical condition . Huge kudos for continuing to fight for your daughter's health, and helping her to avoid serious medical issues in the future