Back in the hospital AKA Scary Town

[lenny]

Last Friday morning, my son's weight dropped to 108. I called his GI and he asked me what I wanted to do..I said, "I would like to admit him in the morning."

The doctor agreed and arrangements were made.

That night, my son went from being a totally rational person to one with delusions. He told me that he was a time traveler, caught in a loop..he was afraid he was going to be killed, again, at the hospital.

When we got to the hospital, I informed the doc on call about the delusions and for 2 days that's all they seemed to focus on. My son did not receive and IV or any medical care and a sitter was put in his room 24/7 to make sure he wouldn't hurt himself or others, although he has never threatened to hurt anyone and has zero history of violence. When he used the restroom, he had to leave the door open a crack.

On day 3, they convinced us to move him to the psychiatric floor, where they have very limited medical anything. No way to give him an IV, even, but they said the GIs would be very involved.

His weight was still dropping, but they continued to focus on his mind! He got to 104. His lucidity would come and go, but much of the time, he looked terrified and seemed to be caught in a nightmare. He only expressed being fearful, nothing threatening. "Why do I have to die here again? Why do they want to kill me?"

He would hear someone cough in the next room and was sure he'd caused it.
He felt responsible for the problems of people in the world whom he'd never met. A couple of times, he pleaded with me to save myself and flee the hospital. Other times, he'd be himself and speak normally, for hours. He told me once, "I was in scary town."

The GIs didn't want to put him on steroids as they thought it could make the psychosis worse, but a psychiatric dr finally asked me if I'd be okay with it on day 5 or 6 and I agreed, as the weight was still falling. He was dying IMO.

It was like he was on fire and they were talking about policy, meetings, plans without urgency. On day 2 in the psych ward, he got bloody diarrhea, something he never has at home. They were feeding him junk food and stressing him out!

Day before yesterday, he gained 2 lbs, but lost it all yesterday..

I feel pretty angry right now, as I saw him suffer so much, needlessly.
We seriously considered just taking him home a couple of times...

I'm afraid to call and get his weight this morning...

 

[lenny]

As soon as my son started saying crazy things, I googled: starvation cause psychosis and the first thing that popped up was acute psychosis.

But, his bloodwork came back normal, so the docs didn't think that's what it was, or all it was.

I don't really care what his blood showed. He was 108 and 5' 11".

 

[DJW]

I'm so sorry you're sons going through this hell. Sending you both my support.

 

[Farmwife]

OMW, do you believe its mental?
Bloody diarrhea should be a sign to someone its not. Maybe I'm wrong.:shifty:
Did is labs ever show anything before this trip?

When you ask about is weight being so low what do they say?

 

[CrohnsKidMom]

So sorry to hear about this. As soon as I started reading your post, I thought it sounded like your son was having delusions from being malnourished. Mine is a pure layman's opinion though. Could it be caused by any meds he's on? I don't have any advice to offer, but I hope they find the root problem and start treating it. I would think they would at least get an IV going and give the boy some fluids. Keep us posted on how he's doing.

 

[lenny]

The docs acknowledge that his weight is dangerously low, but think the psychosis needed to be treated first. I strongly disagree.

I kept saying, fine we can talk about that after he gains 10lbs...

They kept saying they needed to keep him safe. (From himself)

 

[DJW]

Is the GI still seeing him everyday?

 

[lenny]

Yep and doing nothing.

 

[Mehita]

Where are you located? Is this his reg GI or the on call GI? At a minimum I'd think they'd be giving him IV fluids.

 

[lenny]

In May, he began feeling worse. FCP was 515.
June feeling a bit better. FCP 185.
Began feeling worse, still waiting on that one (from 8/30).
Yet, whether he was in a flare was in dispute and the only thing they wanted to do was scope him.
Of course he was in a flare. Idiots!!!

 

[Tesscorm]

OMG, this is horrible! I hope you get more answers and support today!! Has his emotional/mental state improved at all? Is there any way you can get him to another hospital? Although I suppose you need to weigh this with the thought that your son's GI is at the current hospital. :ghug: :ghug:

At the very least, can you ask the GI about exclusive enteral nutrition? If they won't actively treat his inflammation right now, by following EEN your son will get necessary nutrition, will probably gain some weight and will get bowel rest (hopefully, reducing the inflammation a bit) and no junk food!! And, this can be done with any meds that he's on.

But, I can't believe that they would allow him to continue this way without trying to treat the IBD aggressively! Lot of hugs!!

 

[lenny]

His docs don't even know what EEN is, as the first time he was on it, they told us that he could have 20% food. I learned here, that was not the case. I also learned here about FCPs..

Honestly, I've been trying to get my son to do it for a couple of months, but with little appetite, I don't think it's a realistic expectation.

I'm chomping at the bit for him to do it!

 

[Tesscorm]

If not completely exclusive, while he's in the hospital, can you get him to drink a couple of shakes while you're there? It will help boost his calorie intake (and nutrition). At this point, although enteric formulas are the most easily digested, I think it's probably just important to try to get his weight up. The polymeric formulas taste better and will still provide him with vitamins, minerals and calories - Boost, Ensure, etc. Boost also sells fruit beverages (instead of the shakes) - my son says they taste like regular juice.

 

[Tesscorm]

Also, Boost has nutritional puddings. I've never bought them so am not sure how they taste and am not sure about bowel rest with the puddings but will still provide him with nutrients and calories.

 

[Maya142]

How terrifying! My heart goes out to you. Is it possible that the psychological symptoms are caused by malnourishment? Have they checked for vitamin deficiencies? It seems like they really need to be treating BOTH things.

My daughter does supplemental EN - Peptamen via NG tube. She was not good at drinking Peptamen and she lost too much weight. She was not happy about the NG tube but besides being uncomfortable the first night, she's had no problems with it. If your son has trouble eating or drinking, then I would definitely ask if they could at least try an NG tube. It sounded very intimidating to me, but it really isn't, it's very easy.

I hope things change soon. Sending hugs.

 

[lenny]

The shakes go against SCD and when he drank them, along with the junk food (burgers on white buns, white pasta, pizza, fruit cups with sugar..) he got the bloody diarrhea. Once back on SCD that stopped.

I know Peptamen goes against the diet, but he'd be on it exclusively and therefor not on SCD.

We're making all of his food at home, SCD and he's doing a little better...but, it's not good enough or he wouldn't have been out of remission in the first place.

He's at 107lbs today.

 

[kernelmom3]

I don't know where you are but my son is in the hospital right now and I was just reading through the Child Life Services info and came across info on "Code Help". It's a number you can dial in the hospital when parents, patients or any family member feels like they're not getting adequate medical attention in an emergency. I don't know if your hospital has it but it's just a thought. I'm so sorry you are going through this. You're all in my thoughts and prayers....keep us updated!

 

[xmdmom]

I don't think that it is common to have acute delusions due to low weight alone. Has he been on any medications or drugs (prescribed or otherwise) or alcohol? Any sleep deprivation?

Although it's possible that the cause of his altered mental state is psychiatric, I would want the doctors to rule out all the medical possibilities. People can have altered mental states (including delirium) with metabolic/electrolyte abnormalities, low b12, folate, thyroid issues, liver or kidney issues, as well as central nervous system issues etc etc. Given the Crohn's, one would think the possibility of a medical cause would be more likely.

Sometimes people who are very malnourished have a refeeding syndrome when given food/IV glucose and this can cause different problems. Did he get any IVs or different food in the hospital? In any case, the doctors should be doing a full medical investigation of new onset delusions.

What do his doctors believe the cause of his delusions are?
What are they doing to rule out possible medical causes?
How are they treating his malnutrition while they figure out his delusions?

If you don't have the answers to these questions, ask them.

What kind of hospital is he in? (sorry if I missed this)

Sending hugs!

 

[Tesscorm]

xmdmom's questions reminded me of something as well... when my father was in the hospital, he had a serious infection and this caused, not delusions, but extreme forgetfulness. Could he have an abscess or other infection and could this type of infection be serious enough to cause delusions? Although I'd think this would be reflected in his bloodwork??

 

[lenny]

I don't want to say where we are exactly, to protect his privacy, but we are at a supposed excellent children's hospital in the U.S.

Son has not been on any new prescribed drugs, no illegal drugs and the delusions began about 12 hours prior to his entering the hospital. None of the docs have said what they think is causing the delusions, just that they're probably not related to weight, as his bloodwork (not sure what all they tested for) was normal.

My son's psychiatric doctor just told me that the GIs told her that my son was medically stable and NOT in a flare when they passed him to psych. What?! He was in a flare when he was 515 and his doctor did not act happy when he dropped to 185. He said, "...yeah, it's still too high..we'll give the diet a chance to work and we'll test again at the end of the month" which we did and are still waiting for the results. If the fcp was still too high, my son was to start EEN and MTX. That was the plan.

When he began having delusions, the plan changed. I was just told, "200 or above is a flare". BS! My son's weight has been dropping, he's been feeling poorly and has had fcps of 515, 185 and ?. He is in a flare forsure!

How are they treating his malnutriton?

They began feeding him lots of junk food. Pizza, burgers, fries, mac and cheese...He got sicker and lost MORE weight. We started bringing meals from home and the steroids are probably helping, too. He finally stopped losing..

His lucidity comes and goes.

 

[Maya142]

Lenny did you ever get to CHOP? It sounds like a second opinion could be really helpful.
I hope things get better soon.