Cushing's Syndrome Support Group

Hi! My name is Cheryl. I was diagnosed with Cushings when I was 18. I'm 49 now and I'm doing fine. Most likely your daughter's tumor will be found in the pituitary. MRI has come along since I was diagnosed and it takes great pituitary pictures. And she will no doubt be having one or two. After removal of the tumor, there's no reason why she won't go back to being the little girl she was before the surgery. They might even be able to "remove" the tumor through radiation therapy. There are so many options now, it's almost unbelievable to me! When her cortisol level returns to normal, she will lose all the weight, her knees won't hurt anymore, the hump will leave and her face won't be red and so round. She'll come through this and be perfectly normal again. And most likely, she'll not have to take any medications for any replacement therapy once her blood levels return to normal. Cushings is very treatable once diagnosed. If you don't like what you hear from the endocrinologist, go to another one. Be sure to request they check her cortisol levels. It comes from the adrenals and when the tumor in the pituitary is sending out bad information, they put out too much. Elevated cortisol is what's causing the weight gain, the swelling in her knees, and any personality changes she might be having. What's she experiencing is a continual flight or fight response from her adrenals. She can't help feeling very high or very low. But always fidgety. But again, this is very treatable, it's just a matter of finding the source that's stimulating the adrenals. I will be praying for you and your daughter. Please don't let this get you down. Kids are so resilient, and this is just a blip for her when it's done.

Thank you Cheryl for your positive feedback. Since I posted I have an appointment set up in June with the endo. I was concerned it being so far off and her having headaches. They referred me back to the pediatrician for the headaches until she is seen in endo and they want me to continue with a log and give it a couple of weeks??? I guess I am in a weird state. I do not have anything saying for certain that she has cushings due to we are in the very beginning. SO yes it is scary to hear of the radiation and tumor etc. because I have that it could still not be that?? but now it also wants to make me push harder to make for certain those things are checked. Does anyone feel that waiting til June is unacceptable?? I have pushed and even contacted childrens but their wait is longer. I feel bad for her she has had a hard time getting to sleep lately and aches that I listed before. In addition to what I previously listed her face does get really red(you noted that) she does have mood swings that we thought were pre teen issues. She always has aches, body, legs, stomache she does not feel great very often. I so appreciate your prayers and your post has made me want to get this handled and on the road to treatment the sooner the better. Thanks for your helpful information. The better informed I am the better I will be able to address issues at our appointment. Thank you

I don't know where you live, so I don't know if the wait is acceptable or not. But I wouldn't be happy about it. Some things you can't change. In the mean time, you could push the pediatrition to order an MRI of her pituitary, with contrast. A tumor in the pituitary will light up with contrast. And he could also order cortisol levels. I don't know if this is done with urine collection, or just blood work now. It's been a while for me! This would put you ahead of the game when you get to the endo. And your doctor might call and push to move the endo appointment up if there is a tumor spotted or her cortisol levels are elevated. Push your pediatrition. He's there to get you through this, too. And it won't hurt him to expand his knowledge base, either. Don't be afraid of the word "tumor" in this case. If you do any reading about the pituitary you'll find out that many people have them and they never become active. And it is a very, very rare for them to be related to any type of cancer. They are benign, noninvasive and easily removed. And the best news is that if there is a loss of pituitary function, it's because it didn't like being moved during surgery, and it returns to normal after a short time. The radiation I'm speaking of is usually done in one dose. So, it's not a bad thing either. Again, so much has changed since I was diagnosed. I still remember how my mom and dad worried over me. Try not ot let it show. It worried me that it worried them so much. I felt like a burden. I know this will sound weird to you, but in a way it's good she has headaches. Tumor pressure will cause them, and that means it's up there and easier to treat. If your little girl has to have surgery, the worst thing about it will be having her nose packed with gauze. It makes it hard to swallow. It's usually in there for 4 or 5 days. She may have to lie flat of her back for a week, but that's not bad, either. She can turn from side to side. There's not alot of pain, just a headache when you get tired. You will feel worse than she does! Forgive me for inundating you with information. I just want you to feel more comfortable with what you may be facing. Knowledge is power, and comforting, too. Let me know how it's going. I would especially be interested in her diagnosis. All this may be moot! Go to the NIH web site (National institutes of health) and look at cushings there. Don't do this if you're not mentally prepared. It can be scary. But you can worm around in there and find all sorts of information. Good luck and God bless ya'll.

Hi Cheryl, I so have appreciated your responses. As of now my pediatrician has recommended feverfew( a herbal supplement) for the headaches. I agree with your recommendation for having the pediatrician run the test in advance. I am going with her for this week and plan to follow up next week on these headaches. It is hard to see her feeling so lousy. I am keeping in mind we do not have a diagnosis. My husband reminds me that last year she was really sick and they ended up saying it was nothing and I reminded him that the same symptoms are still present they just were not interfering until these headaches got so persistant. I understand she may or may not having cushings. (even thogh the doctor said specifically that was what she was testing for) But I do realize that she will not have the increased levels of insulin, cortisol and cholesteral for no reason. Your information has been most helpful and your positive outlook is refreshing. Thank You! I will update more when I know more.I do wonder is there anything I should not want her to do activity wise?? You said earlier headaches when tired??Is that only in recovery cause she seems to wake up often with them and go to sleep often with the headaches I was wondering if any relevance.

I was speaking of during recovery from surgery. And, when recovered, the headaches are gone. My parents didn't try to stop me from doing anything. My first surgery was a biadrenalectomy. They don't do those anymore, I've been told. For many reasons, it's not a good way to treat the disease. Anyway, my adrenal glands were two and a half times bigger than they were supposed to be, so you can imagine what kind of fidgety energy I had. And attitude?!! Wow. You can't even imagine. But needless to say, sitting still was not an option. I just couldn't. I would ask your pediatrition about activity levels for her. I personally think she'll stop when she's tired, so let her go, but I'm not a physician. It sounds like you've got a plan of action, and that's good. I would still push for an MRI of the brain, if not the pituitary. And ask for contrast. These headaches are coming from somewhere, and since they can't come up with an answer through blood work, it's would be a good time to take a look inside. Especially if they're looking at Cushings. Do you know what an MRI is? It's pain free. You just have to lie very still for awhile. And, if they use contrast, they will put it through an IV in her arm at one point during the test. She won't have to have it in the whole test. Just for the minute they inject the contrast. Not painful at all, unless you're 14 and tired of being poked and prodded. If she's scared, they will let you sit in there with her. My mom has sat with her hand on my foot before. I'm claustrophobic, so the first one was quite a test. Wah! LOL. Don't be afraid to push her Dr. He doesn't know what's going on either, so he shouldn't be offended that you're doing your own research. Keep me posted and I'm still praying for ya'll.

I have felt awful for my daughter lately. SHe is having headaches all the time and feeling horrible. I have gotten a doctors appointment for Friday adn am looking forward to requesting some tests to be done prior to her endo appointment in June. I know she could not have cushings but there are sooo many similarities. I feel bad because she is always having trouble sleeping, the headaches not feeling good and the list goes on. But I feel worse because she has had trouble in pe with the mile runs she gets overheated ad face turns very very bright red..( she fell asleep earlier and her face was all red) her coach is pushing her and she is now having a terrible time with that and i want to say something like cut her some slack she may have something more serious but then my husband says if its not and she is just unhealthy then ??? I am just torn as a parent I want to help her but with out knowing so I am looking forward to the appointment to see ..should she be excerting and running?? I just want her to have a feel good day... I am also concerned if it is cushings we are in southern ca. We are a military family and I am not sure how much experience they may have with this?? I know it is common for people to be negative about military hospitals. I am not one of those at all. Prior to our move back here we always had excellent care there. Our move recently we got set up with a pediatrician at CHildrens. But this is the first time they referred us to the military facility so it is just a wonder if they have dealt with this very often especially in a child. I guess I will get my answer in June. Hmm I guess I could ask her doctor that too..hmm

OK, I don't know how long you've lived there, but if it's a recent move this is what I'd do. I'd take a picture of your daughter before this started, and talk to the coach. Tell them you're seeking answers to the physical/mental changes in her. And ask them to not push her too hard. You may have to put it in writing, but that's not a big deal. She's struggling enough just going to school knowing her looks are not what she'd like them to be right now and feeling bad all the time. I was in college when mine started. I was a freak before they did my surgery. I can relate to how your daughter must feel, only I was old enough to deal with the response of the public/professors/students to my looks. And I was pretty blunt. She's not old enough to feel anything but real rage and frustration. Is your husband in denial? If indeed she's just "unhealthy" is this not a reason to go easier on her, too? When you see the doctor, I would demand an MRI of her head. These headaches have been going on long enough. Even if it's not Cushings, it could be something else. And it's time to find out. And don't be afraid to demand. Don't be rude, but get what you want. I've been dealing with DR's on a personal basis since I was 18 yrs old. I've found that they put their pants on one leg at a time, just like everybody else. Despite some of them having a God complex, they're just human. If you don't get answers, go to another one. Who referred you back to the military? Is there no way you can seek help outside of the military establishment? I don't understand how it works, so forgive my ignorance. You're still in my prayers, all of you. Keep you chin up.

Cheryl, I just want to say thank you for your understanding and encouragement. I have to be short getting the kids off to school but just wnated to say thanks. I will keep you updated. I truly appreciate your prayers.

Went to pediatrician today have an urgent referral to neurology for the headaches (week 7/8) Her vision has worsen 20/30 from her physical in Sept. 08. But the doctor does not think the vision is causing the headaches. The doctor corrected and said that her inuslin is high but the cortisol is not high for being done in the morning??(becasue the nurse that called regarding the reulst told me it was high) She says because it was not considered high for that time of day and her blood pressure is not high that she does not think it is cushings? Will hear back monday regarding referral and go from there. She wanted to leave the tests to the specialists. We have found that ALeve is more helpful to keep the headaches more tolerable during the school day. Works much better for her than ibuprofen. My daughters teacher sent her to the nurse w/out my daughter asking her teacher told her that she did not look like she felt very good and should go to the nurse. We also found chamomile tea has been helping for the sleeping issues some. I also want to get a picture of how red her face gets. Her face gets red not only during excercise but often throughout the day. The doctor did say she was wanting them to check (it had a long name started with a P) for a tumor on her adrenal glands?? I know this is a process and I will feel much better once the specialist get to look at her and do the necessary tests. Thanks for listening to my venting...

Well, I don't know about you, but the word "urgent" being used is music to my ears. Let me know about the neurology appt., if you have the time. Did the DR. want to have the prostaglandulin checked? It's part of the adrenals and the pituitary. I'm glad to hear that a teacher is recognizing that there's a problem with her health, too. It must feel alot better to know that other people are seeing what you see. Again, keep me posted. I'm keeping ya'll in my prayers.