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david

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Reply with quote  #1 
How often are you able to successfully abort a cycle?
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wynnak

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Reply with quote  #2 
David,

In the beginning we could not do it at all. It was frustrating to see every one posting that they could or were. My son ‘manages’ his. He has what we are realizing is his new episode type of very intense nausea with his abortive meds. We call them his new episodes because he hasn’t actually thrown up. But he still has struggled with the nausea for several days in a row. It used to be that we only counted when he threw up.. so if you want to cal that aborting them, then we do okay. But after talking with a couple people, and his doctors the nausea technically counts as an episode.

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ginny

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Reply with quote  #3 
In the archives from over the years you can locate some of the messages about aborting a cycle during the prodrome.

Warning signs include breath with an acetone odor (Many cannot smell acetone), burping, bad breath smell, very pale skin, redness around eyes and/or mouth, delayed gastric emptying seems to be a common warning, moodiness.  

Those are a few that I recall.  If you try keeping a journal, you might be able to find clues that are hopefully helpful to try to prevent the cycle.

Some don't seem to have any warnings and wake middle of the night with the episode.  If that is how you present, maybe the journal will help to target something going on that allows you to prevent the cycle.

Aborting the cycle once it starts can be difficult.  I think we succeeded once or twice before the cycle led to dehydration.  The cycle always involved vomiting.

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david

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Reply with quote  #4 
Anxiety is my main trigger, but also it seems anything that causes me to vomit once triggers a cycle. I've never tried to ride out a cycle at home, I've always gone to the ER within an hour or 2. 

A few times it was a headache, one time it was motion sickness, this most recent episode started with some phlegm that I couldn't dislodge from my throat. It seems like every time it happens it's something new I have no plan for.


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Ddirose

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Reply with quote  #5 
We have always found that trying to abort the cycle just drug it out and she was more miserable. She got to the point of talking to us to just let her be, that her body is not going to stop and it’s just making it longer and more difficult on her. We agreed. Our new angle was to lessen it if we could, but not try to abort it. It just doesn’t happen for us. The only time she had an episode stop was with her older sisters traveling. Her oldest sister is a nurse and had her meds with her, they got her through it, but as soon as she was home 4 days later she cycled.
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jojo2059

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Reply with quote  #6 
We only stopped a cycle once 2 weeks ago with Zofran.  My son's cycles on post nasal drip (allergies) turned into cough, gag & vomit.  Then he will eventually aspirate into his lungs causing aspiration pneumonia and will always be hospitalized.  He is there now with double pneumonia and a collapsed left lung going on 2 weeks now.  A vicious cycle.
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wynnak

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Reply with quote  #7 
Oh Jojo2059,

How awful for you all. Can they treat his allergies? Would that help? My son has been on nasal allergy spray since he was around 9 if I remember right. But, he does have a sensitive gag reflex since having an NJ tube, and months of vomiting. It is easily activated.. Pizza commercials with stringy cheese.. He loves pizza, eats pizza, but the strings remind him of having thrown up spaghetti or ramen when it came out his nose and the gag reflex comes in to play.. 

But, maybe getting control of allergies would help. Poor guy. Do they have a plan moving forward to help him? 


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abigaillinda

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My daughter has found when she feels quite nauseated that Ibuprofen is helpful as well as Ativan and GABA (which is a supplement like Ativan).    She is nauseous daily.  Very few days go by where her journal does not say "nauseous."  I don't know how she deals with all she does so well feeling that way.

And good news to report from our home front.  My daughter's LFTs were going up and up, and at the beginning of April her functional doc started my daughter on chlorella and selenium plus a lozenge of * mg of zinc, and for the first time ever the LFTs are coming down without her throwing up.  (The LFTs usually come down after she throws up).  The LFTs are still not in normal ranges but they have come down.


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Louise55

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Reply with quote  #9 
My son has reduced his episodes by approx. 70% since being prescribed Gaba Pentin.  I know everyone is different t but if it helps anyone else that is a plus.
Louise
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wynnak

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Reply with quote  #10 
Louise, thanks for sharing. I am seeing gabapentin used more and more for migraine and sleep issues. Interesting that is helps his CVS.

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wickedmystickmuzick1

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Reply with quote  #11 
Quote:
Originally Posted by abigaillinda
My daughter has found when she feels quite nauseated that Ibuprofen is helpful as well as Ativan and GABA (which is a supplement like Ativan).    She is nauseous daily.  Very few days go by where her journal does not say "nauseous."  I don't know how she deals with all she does so well feeling that way.

And good news to report from our home front.  My daughter's LFTs were going up and up, and at the beginning of April her functional doc started my daughter on chlorella and selenium plus a lozenge of * mg of zinc, and for the first time ever the LFTs are coming down without her throwing up.  (The LFTs usually come down after she throws up).  The LFTs are still not in normal ranges but they have come down.


I WOULD NOT WORRY ABOUT THE LFT'S WHEN YOU ARE IN TRUE LIVER FAILURE, YOUR LFT'S WILL FALL DRASTICALLY. I KNOW, I WAS ON THE LIVER TRANSPLANT LIST, I WOULD PERSONALLY STAY AWAY FROM ALL NSAIDS(NON STREROIDAL ANTI INFALMMATORIES)IE:IBUPROFEN, ALEVE, ETC, EVEN ASPIRIN, DUE TO THE RISK OF GI BLEEDING! I WAS ON EVERY ANTI INFLAMMATORY SINCE CHILDHOOD, AND IT COMPLETELY WRECKED MY GI! MY HEPATOLOGIST TOLD ME WHEN MY LFT'S WERE OVER 10X NORMAL NOT TO WORRY UNTIL THEY WERE EVER NORMAL AGAIN, BUT I HAVE LIVER DISEASE, THE LIVER DOES REGENERATE, BUT ALSO STAY AWAY FROM TYLENOL AND THINGS HARD ON THE LIVER. IT'S A STRUGGLE. HAS YOUR DAUGHTER BEEN TESTED FOR ALL TYPES OF COMMON LIVER DISEASE? ATIVAN WORKS EXTREMELY WELL FOR THE STOMACH MUSCLE SPASMS THAT CAUSE THAT EXCRUCIATING CRAMPING. I'M ALLERGIC TO GABAPENTIN, SO I CANT SPEAK ON THAT, BUT SERIOUSLY, I WOULD LOOK FURTHER INTO YOUR DAUGHTER RE THE ELEVATED LFT'S, AND PLEASE BE WARNED ABOUT THE IBUPROFEN!!!

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NEVER STOP FIGHTING, WINGZ UP!
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