Pediatric Cases of Pheochromocytoma

Surgeon

feeds@yuku.com (jennyline) — Fri, 30 Oct 2009 16:08:04 GMT

Hi-
We just found out our 15 year old son has two tumors near his renal artery. He is at the Univeristy of Michigan hospital. They want to discuss surgery for removal. From everything I have read, this is a very dangerous surgery. Could anyone recommend a surgeon that has a lot of experience with adrenal tumor removal? I will travel anywhere to get the best care. Please send your suggestions. I am having a very hard time processing this and any help would be so appreciated.
...

Returning to NIH

feeds@yuku.com (iamflasunshine) — Thu, 22 Oct 2009 19:46:15 GMT

Hi All,
It has been 6 mo since Amber's MIBG 131 Treatment at UPENN. I spoke with Dr Pryam a few days ago and he wants to wait and see the scan/test/labs from NIH before he decides what Amber should have done next. He also said that because the MIBG treatment at UPENN is a clinical study that they may not be able to treat Amber because of her age.

We will be going back to NIH the 19/20th of Nov. I know that Dr Pacak and Karen will find a place for her to get another MIBG...

7 tumors in one diagnose

feeds@yuku.com (anirox) — Fri, 26 Dec 2008 23:01:38 GMT

Our 14 year old has been diagnosed with 7 tumors. 5 in the ab area with one on the aorta/lymph gland/node and 2 in the spine. 7 seems like a large number...anyone else out there who have had sooo many at one time? Love to hear from you and what they did for you.
Anirox

14 year old son with 7 tumors

feeds@yuku.com (anirox) — Fri, 26 Dec 2008 10:24:20 GMT

Hey There.
We just found out before Christmas that our son has 7 tumors. This is his 2nd round of pheo/paraganglioma. We have the hereditary type. It has been 5 years since they removed his first tumor (the size of a golf ball). Now he has 5 in his abdomon(one on his aorta they think might be a lymph gland) and 2 in his spine. He is holding up pretty well. I am struggling with it all as the Dr.'s in Toronto are not sure how to approach this. The thinking is that there will be a...

8yr old w/ bilateral pheo

feeds@yuku.com (Unregistered(d)) — Thu, 10 Jan 2008 23:00:40 GMT

After weeks of testing and being in the hospital the final diagnosis is bilateral pheo. Any suggestions on finding a pediatric surgeon? I don't know much about this just that its rare and we are scared!

8yr old w/ bilateral pheo

feeds@yuku.com (Unregistered(d)) — Thu, 10 Jan 2008 23:00:40 GMT

Child with Paraganglioma

feeds@yuku.com (iamflasunshine) — Wed, 02 Jan 2008 21:10:56 GMT

My grand daughter was diagnosed with a mass in her chest near her spine and between her shoulder blades. She was admitted to Fletcher Allen's Health Care, Vermont's Children's Hospital on Nov 20th.

They first told us that it was Pheochromocytoma, but after a couple days they said it was a Paraganglioma. Her blood pressure was very high and they could not get it under control to do a biopsy. The tumor was large and a small tail was in her spine. After the surgeon's studied the X-rays...

Child with Paraganglioma

feeds@yuku.com (iamflasunshine) — Wed, 02 Jan 2008 21:10:56 GMT

Paragangliomas

feeds@yuku.com (Tim R) — Fri, 14 Dec 2007 20:21:08 GMT

My daugher has been diagnosed with at leat 4 paragangliomas in the pelvic region.. Suregery is scheduled in NYC on Jan 8th.. we are of course worried and dont know what to expect..anyone who has children who have dealt with multiple pheos or anyone else who could give us some advice on what to expect would be apprecites. thanks.. Tim R

Please pray for Chloe

feeds@yuku.com (AEckerman) — Sun, 14 Oct 2007 22:47:39 GMT

She is going to be admitted tomorrow with surgery following on Thursday. Her adrenal pheo was not well visualized on the MRI, so she will have a CT scan once she is in the hospital.

Please pray for her as she gets that darn IV tomorrow. She has good veins, but she has yet to overcome her fear of this. While having the mibg IV injection a few weeks ago, she got herself so worked up that she threw up and had to be restrained! It was awful for all of us!

Thank you all for your...

Please pray for Chloe

feeds@yuku.com (AEckerman) — Sun, 14 Oct 2007 22:47:39 GMT

PET scans better than CT?

feeds@yuku.com (Squishy0024) — Tue, 25 Sep 2007 09:31:47 GMT

I was just doing some reading up on PET scans after my husband heard some info on a radio program about them and I'm very interested to find out if anyone here has had it done for locating pheo. I found this link which was very informative:

www.emedicine.com/med/topic1816.htm

The impression I got from the article was that PET scans are more reliable than CT scans in...

Can Someone Help Me?

feeds@yuku.com (MaryPeebels) — Wed, 05 Sep 2007 14:16:47 GMT

This case turned out not to be pheo, but the replies are very helpful to anyone who has a child who is being tested for pheo:

15 Year Old Son Being Tested

Now it's my other child, Chloe

feeds@yuku.com (AEckerman) — Mon, 03 Sep 2007 19:59:02 GMT

It appears that my 15 year old has a pheo, too.

Her doctor called to give me the MRI results this morning, and it seems that she has a bright white 1.5 cm on mass on her L adrenal gland.

I just can't believe that I have two kids with pheos at the same time. We have not gotten the results of her plasma test yet, but the radiologist has little doubt.

I haven't told either of the kids yet. I just don't believe this is happening

Pediatric Cases of Pheochromocytoma

feeds@yuku.com (MaryPeebels) — Sun, 26 Aug 2007 12:55:22 GMT

This forum will be devoted to information and discussion of pediatric cases of pheochromocytoma.

Alison (username Aeckerman) is the official moderator of this forum. This forum was her idea, by the way.

Caleb - post surgery

feeds@yuku.com (AEckerman) — Sat, 18 Aug 2007 21:01:42 GMT

Caleb is really recovering nicely from surgery, it's been a little over two weeks now. Kids bounce back so fast!

I do have a little bit of a concern over his normetanephrine levels that were obtained two days before and two days after surgery.

Two days before surgery the level was 1.63
Two days after surgery the level was 1.74

Normal range is...

Has anyone experienced depression while on the blockade?

feeds@yuku.com (AEckerman) — Sat, 28 Jul 2007 21:47:23 GMT

Caleb started crying tonight thinking about surgery. It broke my heart, because I never see him like this. He asked if there was ever going to be a cure, and if this would be his last surgery, all gut-wrenching questions. But, I do remember last time he was in the hospital, he had several crying spells. It makes me wonder if it is the meds (phenoxybenzamine and metyrosine) or if these are just his real emotions coming through, which would be totally understandable. It's hard either way, when...

Questions on symptoms with children

feeds@yuku.com (repub71) — Tue, 08 May 2007 20:10:36 GMT

I have a ten year old son that is experiencing episodes of increased blood pressure, headaches, tremors, nausea, and severe upper abdominal pain. This happens after he eats a meal and defecates. The episodes last anywhere from 20-50 minutes. My pediatrician ran a Plasma fractionated catecholamine, a 24 hour urine fractionated catecholamine and a VMA. The only abnormal value was an epinephrine level of 10mcg/24h on the 24 hour urine. My pediatrician is referring my son to a pediatric...

3 yr old undergoing thyroidectomy & steroid questions

feeds@yuku.com (jazmenah) — Sun, 21 Jan 2007 23:25:08 GMT

my son & I both have m.e.n.2a. He's having a thyroidectomy within the month.. calcitonin levels a bit high.... I've had the surgery myself, but I was an adult & it was 8 yrs ago ... any info on what I can expect for my little man would be appreciated... recovery time. replacement meds on someone so little.... any questions I should be asking the surgeon or drs. , anything to look out for.. etc.....
I'm on cortef, florinef & synthroid. I admittedly skip the florinef on a...

teens with pheo

feeds@yuku.com (stefyb) — Wed, 05 Apr 2006 20:45:13 GMT

my daughter is being tested for pheo due to high blood pressures her blood pressures have been 150/100 they fluctuate going up and down is it common for teens to get this she is 17