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ChrisVicky

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Hi, we are still struggling with our third episode in three months, on day 7 of violent vomiting, pain and nausea, with no ability to retain food.   When this cycle started he was already down 20 pounds from his peak weight before CVS.  This round we had him admitted to the hospital after the first night.  After three days in hospital, an alternating med program of IV Zophran & Ativan, alternated with IV Phenergan & Torodol stopped the vomiting for a brief time, so we brought him home Tuesday night.   He ate a tiny bit of chinese food in the middle of the night Wednesday am., and a tiny bit of soup on Wednesday.   As of 5pm Wednesday he'd gone almost 24 hours without vomiting, then the cycle started again with a vengeance.

He's retaining water so we don't want to take him back to the hospital, but I have two questions for the group:

1.  Is there a reason the local GI and attending doctors don't like Promethazine (Phenergan)?   It seems more effective than Zophran and my son has no contra-indications.

2.   My son seems to go in mini-cycles, vomiting every 6-7 hours or so.   Should I try to get ahead of the cycles by dosing him ahead of time, even if it means waking him up?   We are now on day 8 and getting desperate.   He has had almost no food since last Friday, is rapidly losing weight.  He can stomach water but can't handle Gatorade.   Won't even consider broth or any kind of food.


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ginny

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If he has CVS and not CHS, when a cycle stops and starts again it can mean the cycle did not end.  He might not have been sedated long enough.  

For the weight, will the doctors consider TPN?  That is a lot of weight to lose so quickly and sudden weight drop itself can have other consequences.

Chinese food, esp if you end up with some MSG in it, is a frequent trigger for many with CVS.  Can you start from the beginning with foods and work your way up to complicated food such as Chinese?  If everything is homemade to start with, you know what he is eating and might be better able to track his food triggers.  In the journal you will want him to note how he was feeling, maybe how much he ate, if he was stressed, having allergy symptoms right down to barometric changes.

Phenerghan is an antihistimine.  Maybe there is a limit on how much is safe over a course of time?  I would ask his doctor.  A side effect of this family of drugs, in addition to drowsiness, is gut slow down.  If he is having slowed gastric emptying the doctors might be trying to prevent further slowing.  I would ask them.  

During each hour of his mini cycles, how often does he vomit?

For us, we had to be NPO for the duration of the cycles but that was always handled in the hospital. 

How is his BP?  is he looking dehydrated?  is he in conscious coma?  can he think, write, spell, produce cohesive sentences?

I would ask about the meds, and report the drastic weight loss, maybe ask about TPN.



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wynnak

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Reply with quote  #3 
Ginny covered everything very well. I would simply say to ask about the phenergan. Make sure they know that it works better for your son than Zofran. Our experiment is that it is the last thing used due to the possible side effects. My son not only had an allergic reaction, But it burned his vein on the inside when given intravenously. He woke from sedation clutching his arm and screaming. Then his IV occluded later as well. They couldn’t even use that arm later to try for another IV. But if he has tolerated it, and it works better. I would tell them of your experience with both and hope for the best.
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ChrisVicky

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Hi guys.  Ginny and Blynda, thanks so much for answering.   Ginny, in answer to your questions:

1.  On TPN, we hadn't considered it, I actually had to look it up.   It requires a central venous catheter so I'm not sure the doctors will consider it until they see if he comes out of this cycle.   The last cycles were a full 8 days before the vomiting abated.  

2.  On food, our plan is absolutely to start slowly, with broth, soup, etc.   Unfortunately, following the same pattern as the last cycle, about four days in (early Wednesday morning) he felt recovered, and about 6 hours after his last vomiting episode he ate junk food without our knowledge, this time Chinese food (a friend brought it over).  Hopefully he's learned his lesson.   

3.  During this current cycle (day 8 so far) he hasn't vomited more than once per hour at all until this morning (Saturday).   He literally just vomited a second time about 15 minutes after the first, but this is not a part of the usual pattern.   He generally sleeps or watches TV for 2-6 hours between vomiting episodes.

4.   I haven't been able to take his blood pressure at home, but he's has been keeping water down pretty much this whole cycle, even a little gatorade, so he isn't dehydrated, just super weak.   However, he is lucid, can text his friends, write a sentence, speak coherently.   I will ask about the meds, but the only response from the doctors has been "we don't like Phenergan."  Unfortunately, since it's the weekend, we are getting an on call GI doctor, who I don't think is listening very well, called in a Reglan prescription, which, since it requires food, is totally useless.

He says the sublingal Zophran helps a bit, but not sure it is having any effect at all.   He has gone back to sleep as I type this.

We keep reminding ourselves that at this point last cycle he was pretty much in the same place, although we had him in the hospital for an Endoscopy and an ultrasound (both of which were clear).   Then, almost exactly five weeks after the last cycle started, the same pattern began again, for the third time.  So each episode has begun almost exactly five weeks after the previous (give or take about 8 hours).

The only change we are considering is a more regular and frequent lingual Zophran dosing.   At this point we only dose him when he wakes up, which is sometimes after 8 hours of sleep.   Frequently, he vomits within an hour of the sublingual Zophran dose, but we can't tell if that's because the drug has little or no affect or because that's just his schedule.   I'm thinking about changing things up and simply waking him for a dose every five hours and see if that helps.   I will clear this through the on call GI first obviously, but any thoughts would be welcome.   I'm starting to wonder if the meds are having any affect at all, if maybe he just needs to ride this cycle out trying to sleep as much as possible.   Maybe I just need a different sublingual sedative.






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ginny

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Reply with quote  #5 


TPN is risky.  We had it with a regular peripheral line.  The line did blow each time.

There is a tasteless calorie product called ScandiCal.  It is add non fatty calories into someone.  It has no taste and can be added to plain water or any food.

If he responds to Phenergan well he might do well on Benadryl, Atarax, or even Dramamine.

Be sure his bowels are moving or he might end up with that triggering more nausea and vomiting.


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ginny CVSA Moderator
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ChrisVicky

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Reply with quote  #6 
Quote:
Originally Posted by ginny


TPN is risky.  We had it with a regular peripheral line.  The line did blow each time.

There is a tasteless calorie product called ScandiCal.  It is add non fatty calories into someone.  It has no taste and can be added to plain water or any food.

If he responds to Phenergan well he might do well on Benadryl, Atarax, or even Dramamine.

Be sure his bowels are moving or he might end up with that triggering more nausea and vomiting.



Thanks Ginny, he has eaten almost no food in 8 days, so no bowel movements at all.  We'll try ScandiCal and OTC benadryl

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ginny

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Reply with quote  #7 
As always, check with your doctor.  I don't think ScandiCal has any nutrition, it just beefs up the calories.
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ChrisVicky

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Reply with quote  #8 
Quote:
Originally Posted by ginny
As always, check with your doctor.  I don't think ScandiCal has any nutrition, it just beefs up the calories.


Ginny, giving a heads up, tried Benadryl and Dramamine last night.   Dramamine came right back up, but tried gave Benadryl at midnight and he has only vomited once since, at 2pm (and hadn't had another Benadryl dose yet).   He is still very nauseous now on day 8, and hasn't eaten anything for 8 days, but it appears we are coming out.  Thanks very much for the advice.



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ginny

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We did succeed one time with Benadryl, we did not have our usual meds available and I recalled how well Atarax had worked so I tried the Benadryl.  I also did the pressure point on the hand (between the thumb and forefinger, the fleshy area if me memory is right, significant pressure for over 10 minutes).   My daughter went into a deep sleep and as I recall, she woke feeling well.  She was just starting a cycle, maybe a couple of hours of vomiting prior to her getting home via friends (grad school kid at that time).  

Her first major cycle, after a couple of weeks of vomiting, the hospital added Atarax to her IV and she woke in perfect health.

Each med can work on a different part of the brain.  Generally speaking many will respond to the drowsy anti-histimines.  It is not that simple, there are often other meds or things needed but hopefully the dosing with Bendryl works as well for you as it did for us.



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