URGENT please help decide best action to do now

amother

OP ↓

Today at 7:47 am

My child older teenager was in process of changing doctors. Then she got Covid and big flare. As if she back to before Dx. Already was in ER Lutheran NYU. Got steroid. Don’t seem to be helping since her bloody mucus stool increased. Now vomiting and nausea. Not eating. New doctor is taking it easy. I called several times to talk and requested they move infusion earlier. Answer I get is wait till appt which is in week.

Do I run to ER. Do I go back to previous doctors who I didn’t like or go to Mt Sinai ER and start with new doctors there. And drop the new one. I don’t know what to do. My mind is racing.

Also if she already had CT scan 9 months ago. Will they force another one.

amother

Clover ↓

Today at 8:02 am

Call back Dr and and say she's not eating. And vomiting and you want her admitted. And then get the infusion moved up? What would they say about admitting her?

amother

Hotpink ↓

Today at 8:09 am

Call shuky berman or another well known medical place right now. Someone will answer and guide you. They will also advocate for you and be in touch with your doctor or another top doctor.
I don’t have the phone numbers right now so someone else should please give the numbers to op ASAP
You won’t be alone after you make the call.

amother

Oatmeal ↓

Today at 8:14 am

I second calling a medical referral. They can also help you get into a doctor sooner or call her new doctor and insist on an emergency appointment.
I’m just confused by your wording about the CT scan? It wouldn’t be them forcing her it would be them trying to asses the level of damage so they can make an appropriate plan. I’d prepare yourself that they might want even more invasive tests. One of the things I daven for is that someone should create a test that gives them all the same results as a colonoscopy without the prep and sedation.

amother

↑ Clover ↓

Today at 8:17 am

amother Oatmeal wrote:

There is a new test like this. I read it about it on here. Anyone have info?

amother

↑ OP ↓

Today at 8:35 am

amother Clover wrote:

There is a new test like this. I read it about it on here. Anyone have info?

Thank you everyone. I would like to know that test too. I called referral yesterday. Maybe I will call again.

amother

Bluebell

Today at 8:45 am

amother Oatmeal wrote:

This week they came out with this in Israel.
It is a capsule that takes 50,000 pictures and will save close to a million people a year by detecting cancers early.

amother

↑ Oatmeal ↓

Today at 8:47 am

amother Clover wrote:

There is a new test like this. I read it about it on here. Anyone have info?

Cologuard? That’s just for screening not someone with a diagnosis as far as I know.
There’s also a newer ultrasound I heard Mt Sinai does but I don’t know much about it.

amother

↑ OP ↓

Today at 8:56 am

amother Oatmeal wrote:

Cologuard? That’s just for screening not someone with a diagnosis as far as I know.
There’s also a newer ultrasound I heard Mt Sinai does but I don’t know much about it.

Thank you

amother

Pearl

Today at 8:56 am

I would resist getting CT scans if there’s a choice. I ask for MRIs for my child. CT scans are fast but it’s radiation. Radiation accumulates over time and never leaves the body. If you don’t have a choice, then do what you have to. Cumulative effects of radiation can impact a person’s health in around 30 years. So if a patient is 80, not a huge biggie. For a young person, should not be first resort. I read an article once about how different specialists always have to take into account consequences of multiple CT scans. That being said, I hope your child has a Refua shlaima

amother

↑ Oatmeal ↓

Today at 8:57 am

amother Bluebell wrote:

This week they came out with this in Israel.
It is a capsule that takes 50,000 pictures and will save close to a million people a year by detecting cancers early.

How is this different from the pill cam/capsule endoscopy that’s been around a while and is from Israel.
My understanding with the old one was that you can’t use it during a sever flare up since there’s a risk of it getting stuck.

amother

↑ OP

Today at 9:12 am

amother Pearl wrote:

Thank you for this information. She had CT done 9 months ago. I called ER and they want another one. How do I go around this?I prefer MRI

amother

DarkYellow

Today at 9:35 am

Please call chaim medical. It's a good idea. They will tell you where to go. You know that this can't wait a week.

Also, please know, you can always decline a CT scan. Ask for an mri instead. You can always say no.

amother

↑ Clover

Today at 9:58 am

amother Oatmeal wrote:

Yes the new test I was referring to above is the new scan at my Sinai. I don't know more than that would love to know if it is going to be expanded around the world.
(And yes my dh had the camera pill yrs ago. It got stuck! Eventually got a surgery to remove it and other scar tissue. There is a test pill you can take to see if it makes it all the way thru which disintegrates after a couple days of it doesn't. By the recommendation to take another camera pill test a few years later we requested the test pill. Insurance didn't cover it but we did it out of pocket. Guess what? It got stuck! So we did not do the real camera pill test again obviously.)

amother

↑ Oatmeal

Today at 10:17 am

amother Clover wrote:

I asked my GI whose not in Mt Sinai about the ultrasound, they said they should have it in 2 years.
Here's an article about it if anyone is interested
https://reports.mountsinai.org.....ffice