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lilsunshine46 03-19-2009 10:26 AM

My 15 year old has been having episodes of her face flushing and her eyes swelling , kind of like eyes bagging. She also has diareah{Spelling} and abdominal pain and nausea along with this. Unfortunately she is not a stranger to the nausea , she has had it for so long she can't remeber a day she hasn't had it. She had a large ovarian "mass" 3 yrs ago which turned out to be a series of compex cysts{benign} when the drs got in there for surgery. This is aftyer the poor child had lost 20 lbs!
Abdominal pain , she has already passed at least 3-5 kidney stones. So she knows what it feels like,she was also born with a congenital kidney problem requiring surgery.

Now her Derm Dr says she should be worked up for Lupus or fLushing syndromes to check for adrenal tumors or carcinoid tumors hiding in her body. She has been ill for so long, tired all the time , this is taking it's toll on her. I wonder if anyone else know what could cause the flushing. I am taking her to the Ped dr today.

lilsunshine46 03-21-2009 08:41 AM

Re: flushing
She came home from school yesterday and the same thing, flushed face and loose stools{can't spell diareah?} . She even remarked to me, "Mom why is it that everytime I get the same thing?" I hadn't told her too much about this although 2 weeks ago on House the main character had carcinoid syndrome with it being on her appendix. I can't help but wonder if this is not the case with my daugher? She even got a weird bubbly rash on her chest about a month ago, then the next morning she wakes up with the flushed face. She also got Strep throat for the 1st time in her life.

Memmy99 03-25-2009 12:52 PM

Re: flushing
I have Carcinoid Cancer and a lot of these symptoms that you are describing could be attributed to a carcinoid tumor. Not before you get worked up please know the this is a VERY rare cancer. Unfortunately that is one of the major downsides. Because of it's rarity it is misdiagnosed 90% of the time. It is often confused with chrons disease or IBS.

The good news is that it is a very slow cancer. In fact I am coming up on my 2 yr dx anniversary of stage 4 carcinoid cancer and I am in great health. In fact, you wouldn't guess it by looking at me.

The first thing you should do is discuss this with your pcp and have her tested. There are simple blood tests and the 5hiaa urine test that are quick and useful in the diagnosis of this cancer. You can also go the caring for carcinoid foundation's website. They have a ton of information and a doctor database. If it does turn out to be carcinoid cancer make sure you get a specialist.

If you have any questions feel free to ask. Not sure if this board will let you send PM's or not.

lilsunshine46 03-26-2009 05:04 AM

Re: flushing
Thanks, she is doing the 24 hour urine test this weekend. Cross your fingers. Her MRI came back basically a washout due to her braces and "appliance" in her upper mouth. It does clearly show the absence of septum pellucidium {which we knew about} it is a birth defect that we found out about when she was 10. She is an Honor student though which is why feeling crummy all day in school and coming home and crashing is not good. It doesn't get that AP History homework done. After the 24 urine test they will do the blood tests and CT. She just had a renal lasik , her kidney is functuioning about like it usually is so no new problems.

I have scoured the internet which I know is not always a good thing. Her drs are great sources of info too.

Thank you for helping, personal input is always a great help too,

NY 1009 12-08-2009 07:25 AM

Re: flushing
I know that this post is a little outdated by 9 months, but I was doing research on "carcinoid tumors" and your posts came up.
I am curious as to how your daughter is doing sunshine and if any diagnosis was made regarding her flushing and other symptoms?
I hope she is doing well.
I have a question for Memmy too.
Being that carcinoid is so rare and it often gets misdiagnosed as IBS or Chrones, or even UN diagnosed till autopsy, I was wondering if you ever suffered prior to your diagnose with acute abdominal crisis at sporatic times through out the years? PLUS did you also get dx'd with ashthma or trouble with your lungs and did you get the heat attacks when you got stressed out or by eating specific foods that would set it off? oh, and did you ever get dx'd with malabsorption or pruritis?
you see,
I have all those symptoms I mentioned above and have been in and out of the ER room for a couple of years now. 3 to 4xs approx. with no reasons other than the 1st time I did have a partial bowel obstruction but was initially caused by just having abdominal surgery and was on pain meds that causes constipation and I was laying down in bed and not exercising enough when I went home, oh and lack of drinking enough water of course.

this last time I was presented with this acute abdominal crisis a few weeks ago, the CT Scan did show something and the radiologist that read the scan mentioned "small bowel thickening" and fluid in the abdomen, but the ER doctor said that because my blood work came out clear, he wasn't worried about the CT sCan but did tell me to follow up with my gastro.

I was dx'd years ago with first having malabsorption, then last with IBS after the last acute attack, but over the phone after he read the report that was faxed to his office.

so I did my own research on the findings of my CT scan the other day and it's coming up that I have the same exact symptoms of a carcinoid tumor, but I don't want to over react and be a hyphochondriac like I"m beginning to feel.

the only way to really find this sort of tumor marker is by the specific urine test? Is this how they found yours?

thank you for you help.

lilsunshine46 12-30-2009 08:40 PM

Re: flushing
It HAS been a long time! Still no dx and almost a yr since the drs started exploring ideas about what it could be. He last CT showed a 1.3 cm lung nodule that was not there 6 months ago. She has a repeat CT in 2 weeks.

My daughter is about the same, not flushing as bright as she used to but all other symptoms are here. She has lost 12 lbs since July and barely eats. She had a weird reaction to her asthma meds, her face flushed and chest as well. She had just had a pulmonaey function test so the dr was there to monitor her. I swear this has been hard on all of us but I fgeel that my daughter is suffering. Who knows?

I hope you get some answers.

Memmy THank you, we will just have to wait to see what comes about.

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