Grandson age 13 high blood pressure

Hi,

I come from a family who has VHL. My grandchildren all had DNA testing, my grandson has VHL and he had a CT scan a few months ago.

Last week he had an accident requiring stitches...while in the ER, they took his blood pressure and said it was very high. My daughter, who also has VHL, was caught up in worrying about the stitches didn't remember what the blood pressure was. Only that the ER Dr said to take him to their regular phycisian and have him checked out. She immediately called her Dr and couldn't get him in for an appt for one week. He was back at the Dr (the one who put in the stitches) to have them removed and his blood pressure is 170/120...my grandson is 13 years old.

The Dr is on the phone now calling Loma Linda University Hospital to have my grandson admitted and they are preparing OR.

Sounds like a Pheo to me. My mother has them and has high blood pressure and anxiety attacks. My grandson is small for his age, he sweats alot, wets the bed and comes home from school every day and takes a nap. Makes sense to me since his blood pressure is so high.

Can anyone out there offer any information or insight.

Worried Grandma

Suellen in Camarillo, CA

By AEckerman
Posted April 27, 2007 at 12:17 pm
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Hi Suellen,

I think you are right, it does sound like a possible pheo. Was the cat scan part of his annual testing? Has he had the 24 hour urine test, or better yet, the plasma free metanephrine test?

I am concerned to hear that they are preparing an OR already. It is extrememly important that your grandson be properly blocked, usually with an alpha-blocker, prior to surgery. This usually takes two to three weeks. It is critical that they get his BP under control before any surgery - I can't stress this enough.

My son, who is only 9, currently is battling his 5th pheo. I know this can be be a scary thing to go through, but you are not alone. Please feel free to contact me privately AEckerman@aol.com and I will be more than happy to walk through this with you.

You and your grandson will be in my thoughts and prayers.

God Bless~

Alison in TX

By Hi_its_suellen
Posted April 28, 2007 at 1:50 pm
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We're at Children's Hospital in Orange County. He is in ICU. They are running the gammit of tests. I've said over and over again to check for a possible pheo...finally after blood and urine tests and a CT scan...they found one (3x5cm). They are preparing for iminent surgery...and yes, mentioned alpha blocking. Yesterday they did the 24 hour urine test...I mentioned the other test... I get the "We know what were doing attitude".

The good thing is...he has a children's kidney specialist, a childrens kidney cancer specialist and a childrens blood pressure specialist. Those guys are listening to me.

He's being very brave...his mother hasn't left his side for more than a few moments. I'm on my way again...after a much needed rest.

Please keep him in your prayers. His name is Davonte, he is 13 years old...

Thank you,
Suellen in Camarillo California

By Hi_its_suellen
Posted April 30, 2007 at 8:57 pm
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HI Allison,

I just emailed you.

They put my grandson on Alpha Blockers on Saturday night. I mentioned to them (after reading your article about Pheos and Children) that he should be on a high salt diet...they had put him on a low salt diet. The best they would do was to put him back on a regular diet (they said it had plenty of salt in it). And now after seeing your post, I'm worried because they are planning surgery for Friday (after being on the Alpha Blocker for only one week).

Can you give me the words to tell them or a number of a doctor who will convince them to wait.

I'm so scared, they listen to part of what I say and "poo poo" the rest.

Thanks for any words of advice,
Suellen

By MichelleC
Posted May 2, 2007 at 1:01 pm
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Hi there,

I live in Woodland Hills, CA. Our 15 yr. old son has a 3 cm pheo - we are currently waiting for scheduled surgery in June. While he does not have the high blood pressure he has been on a low dose of Dibenzyline (Phenoxybenzamine) since March. The doctor has already laid the plan for additional blocking meds two weeks before the surgery. Please make sure he gets adequately blocked before the surgery. Will the surgeon be able to do a partial adrenalectomy vs. removing the whole adrenal gland?
I am glad that you are being your grandson's advocate, it seems to be so very important regarding medical care.
Feel free to email me for some "local" support mpcieslak@gmail.com
God Bless,
Michelle

By Hi_its_suellen
Posted May 3, 2007 at 12:45 pm
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I want to thank everyone who has given so much advise.

My grandson has been in Children's Hospital for a week now. He's been on Alpa Blockers for one week, they are doing a MIBG scan today and surgery tomorrow.

I've raised all the questions and done my best to get them to listen to us...we'll see what they say after the scan today (2pm). They dold my daughter yesterday she is welcome to get a second opinion and take him elsewhere. Not the answer I would have accepted.

I think my biggest concern is the inconsistent information. The local docs are planning surgery after one week of Alpha Blockers...and all the other info I've been told or read about says 2-3 weeks is the protocol.

What will happen if he is not properly blocked? What are the ramifications if he hasn't been blocked for 2-3 weeks? Why do these doctors feel that 1 weeks is adequate?

Will keep you posted.

Thanks for all your prayers.

By Deededell
Posted May 5, 2007 at 4:36 pm
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Dear Sullen,

My blood pressure just went up reading about how fast and unprepared the hospital was going to do this surgery to your grandson. I am a mother of 3 that all have Von Hippel-Landau and 2 of them have already had pheos removed and I have had bi-lateral pheos removed. We have had all the kids surgeries done at Pittsburgh Children's Hospital. I tell you that because one of the assisting surgeons that did my kids is now head of surgery at Los Angeles Childrens. His name is Dr. Ford. We flew our kids from all over the states to have all of their surgeries, they have had adrenal, brain, ears, teeth, and many diagnostic test at Pitt. It is hard for me to understand why a group of docs would go forward at this rate of speed. Yet, I must tell you that I almost feel as though the situation with your grandson is a little different. I am so sorry that you have had to go through this amazing worry and heartache. Once the pheo's are removed there is just a glorious rebirth of the child that you will live in shock at how sick he has been. I pray you will find comfort soon-- hang in there.

Deede

By Hi_its_suellen
Posted May 6, 2007 at 11:56 am
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Well...whew!

Friday was a long day. They took him to surgery about noon, said to expect four hours...he was in there for six. Recovery for two hours...we got to see him at about 8:30pm. He was then sent to PICU. Gosh, he had tubes and wires everywhere.

The first night he was pretty doped up and slept pretty good. I got there first thing in the morning to relieve mom. They took out most of his IV's, stitches (yes, the original stitches in his knee) and his foley. He was able to eat a little broth and drink some juice. They asked him if he would like to sit up...he said no, but they kept asking and he said he'd try. He even stood for a few seconds. Later we asked him to go to the bathroom...he had a hard time and after several house went a little bit. Dr's were a little concerned...since they were giving him lots of fluids.

I left about 9:30pm last night. He looked so much better and I'm sure they tried getting him up again. He is still in PICU. They mentioned moving him to Oncology ICU.

The Pheo was larger than a golf ball...they showed it to us and actually gave my grandson a photograph. yuck. (a boy thing, I guess). They found a cyst on his kidney and one little thing on his pancreas. They will follow up on those.

While we were waiting for surgery...I got a call from one of the dr's I emailed at UCLA...they would like to see my grandson and his mom and possibly manage their case. This is excellent news since with her insurance she never sees the same doc twice and the neurosurgeons don't talk to the endocronologists or....so I'm excited about this.

Thanks for all your kind words and prayers.

Gotta run...back to the hospital,

By rcscott65
Posted May 7, 2007 at 8:15 pm
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I am happy to hear that there was a positive outcome. Our son is 10 and had bilateral pheo back in October. He was on the blockers for three weeks prior to the surgery. Thankfully, your grandson managed well. Please make sure that he is seen by those that are familiar with VHL and not just read a few cases. It is so important that we know what type of treatment is necessary. Sometimes it is up to us to educate the doctors on our illness. Don't ever let them try to make you feel like you don't know anything. Stay knowledgeable and go in armed with information.

Best of luck,

Rhonda

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