Crash course for teenage daughter

Hi Angel,
How scary! You will want a Hepa. Be sure to get copies of everything from the hospital and every doctor you see. My husband had Hep C, but never felt a thing, nor knew he had it until his blood test showed elevated ALT/AST in 2005. There has been no pain with Hep C, which is a blessing at this point. My guy did have a gallbladder infection when he was treating Hep C the 2nd time. He did have instant and severe pain until after surgery. Hopefully, the PCP will be able to refer your daughter to a Hepa friend as an emergency case. Please let us know how things go. Welcome and Big Hugs

Angel...August is impossible.

Where are you? Antartica? Surely you can get a sooner appointment at a major medical center. Drive some where. This could be serious. I agree with Ziff....get someone locally who can start the process. I'd be worried sick.

Is there any chance she has taken a boat load of tylenol...kids can do stupid stuff?

Hugs,

Mama Lama

Thank you all! They were asking me about history and I have AI disease so they did mention AIH, something about AI running in families in general. But like was mentioned, cant jump the gun. They assured me that they call anything that causes swelling in the liver Hep. Just worried about a connection between her low WBC and that. When we left they said they didnt feel there was a gallbladder issue and that it is the fluid around it causing the pain. The gallbladder itself is not enlarged.

We will just need to wait and see what the blood results come up with. I am not sure what all they ran, it was a boat load. She was to run her first olympic triathlon in just over a week, thats on hold for now as the ER doc put her on restricted activity till everything is sorted out.

They gave her pain meds in the ER but sent her home with nothing. I have calls out to several locations. I thought with her being 16 we could get her into and adult practice but no luck so far. One pediatric place about 2 hours away can get her in next Thursday if the PCP sends a referral, they wouldnt make the appt with me which I understand. When the ER dr consulted with the PCP he told us to just show up tomorrow morning to talk. I am getting a copy of her labs then.

My other option would be to take her to a bigger pediatric hospital (we just went to our local place that refers out) and start over. In theory they would call directly for a GI consult from the onstaff drs, then she would become a PT automatically and have no wait time. If she has an increase in pain or fever I may just do that. I shouldnt have taken her locally, but I am not supposed to be driving and this was only a few miles away. I also have someone that thinks they may be able to get the office to schedule her sooner because they know someone there. I think the dr should just call and put his foot down, period!

It got me mad though. 18 months ago she had the WBC issue and they blew it off. I took her to the oncologist on my own and they said as long as she doesnt have recurrent infections the low count is fine and doesnt need rechecking (after the first 6 months), but the PCP was directed on what they should do. Now today he said he was baffeled why we didnt continue to get it checked. I think drs need to record themselves so they can recall exactly what they said, it seems they never document accurately their plans.

I dont think she would take anything knowingly. She is very anti-med, anti-alcohol, anti-suicide, etc... but I do understand what you mean.

I am going to write down all of those names to make sure they were screened for. I doubt things will be back by the morning, they told me it takes days, but at least I can see what was run.

Thanks again!

If its an emergency they squeeze people in usually. When I first went in I was flagged as a code red, they called on a Tuesday and I was in on a Thursday.

Where abouts are you located?

Went went to the PCP at 7 this morning, camped out till he arrived. He pulled up her reports and was not happy about the ER descision to let her go or what they told me in general.

She DOES have gallstones, she DOES have a small bowel intussusception in addition to the enlarged liver.

He sat in the room with us and called every GI he deals with an no one would take her because of her age. He also called the two local hospitals to see if he could get her in for a STAT HIDA scan to at least start the ball rolling. While he was on hold I told him my plan was to drive to a childrens hospital if we couldnt get anything done. He was all for it and called ahead for us. They are checking with another unltrasound now to see if the small bowel has gone back into place. If not she will be taken to the OR for bowel resection, cholestomy and exploratory, which she has refused, but I have the deciding vote on that one. Thats all worst case senario of course. Fingers crossed that we can get away with just the laparoscopic surgery or better yet none!!!

Thank you all for your support!

Hopefully they can figure something out. If she has stones a MRCP might be warranted to look for stuck stones. My hep thought I had long term bile duct stricture from stones, I did not turn jaundice until very late in. Some say PSC but I am going with what my hep says, gives me better long term diagnosis.

Good luck, and if it was my daughter I would be doing same. I am in MN, there are several pediatric hep docs at the facility I go to.

Thank you all! We are still wondering what is going on. Because she has periods where she is completely pain free we cant even get a GI to see her right away. We were discharged with absolutely no answers. She started to get pain on the way home and I turned the car around to go back to the ER, she refused to go back. She was to worried about missing school, finals, her job and all of her projects.

The bloodwork is still not back for the hep. And her bowel has returned to its normal position. The PCP still feels that needs to be looked at more closely because the bowel doesnt just telescope into itself in an adult, something must make it do that.

Their best guess at this point is that she does have a small gallstone but that shouldnt be causing the issue. Her heart rate at rest is in the mid 30's, so spending the night at those levels is causing fluids to back up in her liver and cause the pain; her pain is much more severe in the AM after she is up for about 15 minutes. The AM CT shows swelling/PM ultrasound show normal, this was the case two different days at two different hospitals. When she is up and moving her heart rate ranges in the mid 60's. She is very athletic but while resting still shouldnt be 32-36 BPM for hours at a time according to the dr. They did an echocardiogram to check the heart function and everything was ok except the rate.

So she now told her boyfriend that she will not tell anyone when she is having pain, because she doesnt want to get stuck in the hospital with this nonsense. Of course now everyone is going to be super observant and in her face, whoch will make her more mad,lol.

All very frustrating to say the least!

Her PCP can order an MRCP. This is a MRI with contrast where they look at the bile ducts for blockages and kinks etc. It does not need to be ordered by a specialist. It is the gold standard for bile duct issues. I went years with bile duct issues and until a Hep specialist decided to do a MRCP nothing was noted. He said it is not uncommon for CT's, regular MRI's and Ultrasounds to miss gallstones in the bile duct being passed.

I did not have alot of pain with my chronic blockage, but everyone once in a while I would have severe episodes that they related to other issues. If the MRCP comes back positive you should be able to get a specialist to do an ERCP to go in unclog it and put a stent in to give it time to heal.

I have had the MRCP, it is basically an hour nap. The ERCP is very uninvasive, you have a chance of getting pancreatitis but I had 4 or 5 of them and I never had an issue.

My blockage caused ascites. It was like fluid was backing up because bile was causing liver to not function properly. Once the clog was cleared I lost 20lbs a 3 days