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angel

Registered: 12/07/09
Posts: 5
Reply with quote  #1 
I am brand new here.  I have a Megan, 13 years old, who is suffering with this at home right now.  She's hanging over her personal trash can (with bag) as I type this.  She has had no food since Thursday--hers normally go for about a week.  I have a question for anyone who can help.  When do I take her to hospital for i.v.?  She saw the Dr. yesterday, and she seemed hydrated enough to him.  I was concerned because she woke up and didn't have to urinate.  Two hours later she did, but not a whole lot.  Five hours after that she saw the Dr., who said she was hydrated enough.  Then, she didn't urinate the rest of the day, and went to bed.  After she was asleep, I woke her up at different intervals throughout the night to take a sip of the Gatorade.  (I didn't get much sleep).  She did urinate this morning, but it took a while after she sat down.  I was with her and at first it was only drips, and then a little more (possibly a cup or so).  I called the Dr. again and the nurse told me that, with everything I explained to her, that she didn't seem to need i.v.  She hasn't urinated for about 9 hours at this point.  Thanks for your advice.  
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Angel

Mother of two
Megan, 13 with CVS, and Caleb, 8
mahler1987

Moderator
Registered: 04/16/05
Posts: 3,033
Reply with quote  #2 
Angel,
Nobody can tell you when to take Megan to the hospital.  If her tongue or inside of her mouth appear dry, then shes dehydrated.  If she is peeing dark or bright urine... or if small amounts of urine look like the color she normally pees, then shes dehydrated.  Not urinating for 9 hrs is dehydration.  If shes still activelly vomiting.. then it needs to be stopped.
 
Please dont keep waking her in once she is asleep for sips of something, sleep is the one thing that flips off the vomiting center in the brain.  Not only do you end up very tired, you could be prolonging her episode.
 
Pattie

__________________
I may have CVS but CVS is not me.
JWHamilton

Registered: 12/01/09
Posts: 17
Reply with quote  #3 
When I would sleep all day my mom needed to wake me up for sips of gatorade or ginger ale every hour at least to hydrate me because it was the only time I could drink even that little bit and not get sick right after.  I would go right back to sleep and not be disturbed generally but she would let me sleep through the night if I could.  I always felt better waking up with some hydration then only the sleep.  But if she has had no fluids for a day with little to no or strongly colored urine only she is dehydrated.  At 13 she now should be able to learn how to monitor her hydration because you always know yourself before others and getting fluids at the beginning of getting dehydrated can sometimes be enough to slow or stop an episode.  Other wise of course always pay attention yourself and if you think she is dehydrated or she can't stop vomiting go to the ER.  There is no reason to risk serious dehydration because of one or the other or to let her suffer more than needed if she is at the point where only the ER can intervene.  Dehydation is one of our biggest enemies and can set in extremely fast with our situation so it always needs to be monitored and if we throw up bad enough we can be sure it is coming so a preemptive strike is always better than to wait till after the fact.  Good luck with it all.

__________________
John W. Hamilton
dharrison

Registered: 08/10/09
Posts: 213
Reply with quote  #4 
I would also like to weigh in here.  I agree that dehydration is one of the biggest concerns during an episode.  For our 4 year old daughter, dehydration sets in quickly.  She starts an episode and will throw up 20 times or so in the first 2 hours, and then start to decrease the rate from there to maybe 2-3 times and hour for the next 18-36 hours.  Keeping her hydrated is a real problem.  However if we can keep her well hydrated it seems to improve her recovery.  The quicker we can get the fluids started, even without any meds, the quicker her recovery seems to be.  Our newest/current protocol is that if we can't get the vomiting stopped within 60 minutes, we head to the hospital to start IV fluids and meds.  Before, if we continued to try the home meds for 3-4 hours, by the time we got to the hospital and got fluids started at the 4-5 hour mark, she was dehydrated.

One important note.  It is much easier to find a vein and get an IV started if you are not dehydrated.  With Lily, if we get in quick, we can get the IV started in 1 or 2 pokes.  When she is dehydrated, it has taken as many as 5 pokes before they found a stable vein.  So far, with Lily, 80% of her episodes have required IV interventions.  Not fun, and she hates it, but she also knows that it helps her feel better, so she puts up with it.  A real trouper.

One other thing.  Your physicians may not have a lot of experience with CVS, and therefore may not understand that dehydration is of particular concern, and that it very likely with CVS.  I would print copies of several of the medical resource papers from the CVSA website, and leave them with your medical team.  We carry multiple sets with us, so that we can share with her primary care team, with the ER, and with the main "floor team" when Lily gets admitted for multi-day stays.  Good doctors will encourage this.  As several from our team have pointed out, they are pediatric generalists, and know a little bit about a lot of different things.  We need to be the specialists on the CVS condition, ready to help educate the team and if needed direct the services, or put the team in touch with other experts, like those from the CVSA Medical Adviser panel.

Good Luck.

__________________
Darrin.
(Father of Lily, born in 2005, Treated for CVS Since Oct 2007)
(Husband of Michele, Father of son Kiel, born 2008)
klconner

Registered: 06/29/05
Posts: 2,643
Reply with quote  #5 
I head to the hospital, or rather I go in kicking and screaming, if I have not been able to keep fluids down for 24 hours.  I have a port, so getting access to a vein is not a concern.  I feel that gives me an advantage when it comes to waiting things out at home. I have about a 75% success rate at stoping without needing IV hydration.

Sleep is a big deal.  Insomnia will start an attack faster than anything.  If I have a persistent pattern of less than 2 hours of sleep in a 24hour period, along with the vomiting, then I will reluctantly go to my  Dr who will admit me for fluids and drug-induced sleep.  Waking me for anything starts the whole dance to start over again.

Bottom line, you are her Parent.  Parent trumps Doctor.  If you feel she needs evaluation, then keep fighting until you are heard.  Ask for a UA with specific gravity.  It's quick, doesn't require much more than a drop of pee, and fairly inexpensive.
kate   

__________________
With perseverance, the snail made it on the ark.
angel

Registered: 12/07/09
Posts: 5
Reply with quote  #6 

Thank you all so much!  Megan went to see her G.I. Doctor today, which is in the Dr.'s bldg at the hospital, and they would not send her home.  So, she is admitted.  And would you know, I believe she is a lucky girl because she does not dehydrate easily!  That's what was confusing me so much.  She sometimes vomits 100+ times a day, and somehow her body is able to keep fluids.  So, this morning her urine was orange!  Orange!  I was frightened.  But, per her blood test, her electrolytes were alright!  Close to being low, but still in the green!  But, Dr. knew that if she went any longer, she would dehydrate, and also, she kept her because the Zofran (dissolves in mouth) didn't work.  She took a small sip of water for Dr. and vomited immediatly.  I'm sure you all understand.  She's receiving i.v.: zofran, pepcid (they said she has a little acid reflux, too, with the cvs), amitriptlyne (for cvs), and fluids.  They won't send her home until the vomiting has stopped.  Whew.  She has vomited here tonight even with the medicine in her and without any sips of anything.   I'm so glad to have found this sight.  Thank you all so much for you responses!!!


__________________
Angel

Mother of two
Megan, 13 with CVS, and Caleb, 8
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