MGB & others, Robert has to have a CT scan. ?'s

Robert has been complaining about a stomach ache off and on. It's hard to tell because he will often use it as a excuse not to do something.

Today was the 2nd day in a row I had to get him from school. He said every thing was fine, he was having a good day (he doesn't know enough not to cover up his deception and will go on and on about how bad of a day he had).

I took him straight to the Dr. His urinalysis was fine, no fever, no hernia. He did have tenderness in his lower abdomen directly beneath his naval.

It is very difficult to diagnosis Robert. He has limited descriptive language and often doesn't know what the Dr. was is talking about. He was completely befuddled by the pain chart even with the faces below it.

He also has a extremely high pain tolerance. When he was younger he was tested to see if he felt at all. Thank goodness he did.

Robert has the chromosome deletion 8P-. Meaning he's missing genetic material on the upper P arm on the 8th chromosome. Robert has a terminal deletion meaning the genetic material he's missing is at the very end of the P arm.

Genital/Urinary problems are associated with 8P-. In fact Robert's blood has been harvested at Johns Hopkins for years in a prostate cancer study. Because of this link even though right now I look outwardly calm, inside I'm a wreck.

All his life I've wondered when the other shoe would drop. BUT, he has done this to us so many times before, heart murmurs that went away, well to numerous to mention, that I try not to fall apart.

Anyway, tomorrow he is having a CT scan with contrast of his abdomen. What does a CT scan show? How is it performed? Robert does very well with needles (he barely feels them) so that won't be problem if they are involved.

Right now I have to do a quick research paper on 8P- and the abdomen. Local Dr's are very unfamilar with this (when Robert was diagnosed there were only 15 documented cases worldwide! Many more now with more testing but still very rare), so I usually have to tell them what to look for.

I don't research it a lot any more. WIth genome mapping so much more info is available but I was driving myself crazy with "what if's" and definitely getting white coat syndrome. I generally only look it up now when needed, like tonight.

Any help on info about CT's would be appreciated.

Are his bowels moving regularly?

A CT scan is painless and only a bit uncomfortable if you are scared of small spaces. It's a lot like a photocopier really, when you use the top feed function.

You lay on the bed, it slowly moves you into a tube (not nearly as small as a MRI machine) and then it makes a few noises, a few flashes and you are done.

This takes a very good map/scan/photo of the insides and will show most growths, blockages or other abnormalities.

It is a very effective diagnostic tool and not invasive at all.

She said his bowels sounded fine. That was my first thought. Robert said he had a bowel movement last night. But, you never know with him. Six years ago is the "other day" to him. He usually has huge, toilet stopping bowel movements, but he has learned to use the plunger himself so I never know when.

I don't know if he's afraid of small places. He's not afraid of much of anything. He scares the bejeebers out of me when I come home after dark and catch a figure standing in the yard out of the corner of my eye. Just Robert taking a walk in the dark, with all the woods around and coyotes howling. Even more scary at night when he looks in the window at you and you just see a face. Of course he thinks it's hysterical to see me jump and scream. Rotten boy!

How loud are the noises? With his autism he very much dislikes loud sounds. Should I get him some little ear plugs?

This is why I HATE doing this. This is the first link to 8P- I found. The fourth hit! I end up in tears everytime I look something up because I find things like this and I don't have a good enough medical background to weed out what doesn't apply:

Tabulation of all extrahepatic metastatic sites showed the most common to be the lung in 81 (55%) patients, the abdominal lymph nodes in 60 (41%) patients, and the bone in 41 (28%) patients.

CONCLUSION: The lung, abdominal lymph nodes, and bone are the most common sites of extrahepatic metastatic HCC. Most extrahepatic HCC occurs in patients with advanced intrahepatic tumor stage (stage IVA). Incidental extrahepatic lesions at CT in patients with stage I or II intrahepatic HCC are unlikely to represent metastatic HCC.

Liver, CT, 761.12111, 761.12112, 761.12115 Liver neoplasms, metastases, 761.323 Liver neoplasms, staging, 761.323
Hepatocellular carcinoma (HCC) is the most common primary tumor of the liver and is estimated to cause more than a quarter of a million deaths each year throughout the world. HCC is a devastating tumor, with a mean survival of much less than 1 year if left untreated (1).

I had a CT scan and I dont know if machines vary, but I just lay on a "couch" and the machine moved over me at quite a height.
I am quite claustrophobic and dont know about an MRI, but can honestly the CT was nothing. Just watched the machine move, but not enclosed at all......

I do hope it all goes okay.

The noises are not loud at all.

I'm sorry what you read is so negative. You can spend a lot of time worrying now, or you can wait until a doctor/ health care porfessional gives you a reason to worry.

I can just imagine the laugh he gets out of spooking you at the window....that would freak me right out and then I'd get mad and then I'd see him giggling and just have to forgive him. He sounds so sweet.

Oh...laying still is the biggest issue in a CT scan. It's often tough for people to lay as still as they expect you to. Pen is completely right....it's not a small tube at all.

Yes, I told hubby I'm going to stop looking at this. I have the basic info to give them. I found that deletions on chromosome 8p are common in human tumors suggesting that one or more tumor suppressor genes reside there.

I'm going to let it go and get ready to watch "Up in the air" with George Clooney. If that doesn't get my mind off of it I don't know what will.

Yes, Robert delights in it. He'll even come up saying "Who's your rotten boy?" with a big grin on his face.

Okay, just bit hubby head off. Time to go gaze at George.

charlotte,

i think robert will do fine. CT as everyone has mentioned is pretty easy. it's rather fast. lying still is the hardest part.

for the GI system, are they going to have him drink a contrast medium (milky stuff that helps with reading the scans)? usually they want you to fast before the test and have you drink this stuff before the CT.

should be rather quick and painless. if they do have him drink the contrast medium, he may have some GI upset afterwards...they body wants it out.

it's good that they are taking a look. stomach pain can be caused by a whole bunch of things. taking a look though at the GI system with CT is a lot more comfortable than other methods.

i hope everything comes out well--and indeed he has some complex genetic "stuff." hopkins might want to take a look at the films if you're in contact with anyone there still.

take care,
mgb

Breathe.

And take things one step at a time.
Thats all u can do right now anyhow, and your strength will be much needed soon. Conserve it!!

My thoughts and prayers are for all good findings from the CT. The test is rather simple-painless. I think he will do fine. It is scarier now than anything.

The damn unknown!!!



I am here if you need me. You know how to reach me.

((((( hugs )))))

Jess

What a worry for you and I hope the CT scan goes/went OK and he coped with it well (sorry head's not good and can't think if it's yesterday, today or tomorrow over there!).

Hope George managed to distract you a little

Liz

What a worry for you, especially with so little known about such a rare condition. Can't add to what's already been mentioned re CT scans, but just wanted to say I'm thinking of you, Robert and your family.

Hugs

Amy

I'm sorry to hear this. I hope everything will turn out OK.

As far as a CT scan goes--there is nothing to it. I've had them and can barely remember anything about it (it was that non-invasive and simple), nothing like an MRI--which for me is not comfortable.

I am very eager to hear how the CT scan went. I sure hope the doctor gives you the report quickly. Please know I am in your corner, for whatever that is worth.

£eslie

Robert did great for the scan. The technician said he was her best patient in two days. He drank three big glasses of icky tasting stuff (yes, Mom had to taste it), no problem laying still or with the contrast dye. He was just excited because I told him when he got done he could get some pop and magazines. Like me he is a magazine addict.

They are going to call this afternoon, so I don't have to wait long for the results.

Because there is such a strong link to genital/urinary cancers and the 8 chromosome, this has always been my biggest fear, so I think I panicked a bit last night.

Diagnosing for 8P-'s has only been around for a little more Robert's lifetime. So there are no studies on longevity or what to expect in adulthood. The only longevity studies are for those who died in infancy from heart problems. Robert's heart problems were very mild and he outgrew them.

So, for the most part I just ignore his problems. He's my boy, and I love him and he's happy. Case closed. But sometimes it comes up and slaps me in the face.

I'll let you know the results and thanks so much for your support.

Charlotte

Char, my co-worker had a young adult daughter with severe disabilities. One day her daughter woke up and appeared to be in terrible medical distress. A 911 call. When they got to the ER, the doc asked my co-worker if she WANTED her daughter to be saved. My co-worker was very shocked by the question. Yes, she wanted her daughter saved and alive. As it turns out, her daughter died within minutes, in her arms, even though the ER team tried to save her.

I'll never forget that story. I don't know why the doc asked the question. What a position to put a parent in--when the child is severely disabled.

I have a disabled daughter, and she has a DNR/DNI. Her choice. But I can overrule it (it is written as thus).

I hope I never have to stand there and have someone ask me that question.

Cheryl

Blood work came back fine. Ct results in a couple days. Which is a relief, I'm sure if something showed up I would be contacted sooner.

That's good news. Everything's crossed for the CT results.

Amy

I think you're right about the CT scan.

However...it is as good as the radiologist who reads it. Anna once had a CT scan for severe abdominal pain. The radiologist said it was fine. About a month later she had a shunt x-ray, and a different radiologist was alarmed that she was perhaps a day or two from having a bowel obstruction. He said it had been building "a long time." It didn't just happen overnight, he said.

But I'm hoping Robert will get better and you can put this all behind you.

Cheryl

Cheryl,

I've been a little concerned about that. It was done at a tiny rural hospital. For my piece of mind I think I'm going to take Marc's advice and have it sent off. I'm hoping the Dr. that is affiliated with Steven's blood and the prostate study is still working at Johns Hopkins.

So was Anna's scan--done at our local hospital. A resident (in the "big" hospital) told Anna how to "clean" out, when she was discharged from that hospital after that x-ray was taken. She did it, and her abdominal pain got MUCH better. She had been having that pain for a long time. Just think of that expensive CT scan and how the whole thing got "missed." But stuff like that happens, and we take it in stride.

Cheryl

All Robert's tests came back negative and he has not been complaing of abdomenal pain for several days now. I actually remained fairly cool and calm and collected yesterday. They do want me to bring him staraight in if he complains of it again.

Here is a picture of my handsome Robert, taken two years ago. His cousin didn't want to go to prom so his cousin's girlfriend invited Robert. She was so sweet. As Robert said "She even cut my steak for me at dinner!" Sorry it's so blurry, I only had a copy to scan.

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Here's his graduation pic from last year

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Very handsome!! I'm so glad he is OK.

Glad he's okay.

A very handsome boy - takes after both his parents.

That's great news Charlotte. Love the pics, and how lovely of his cousin's girlfriend to think of him.

Amy