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Proudmommy12

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Reply with quote  #1 
My daughter has had severe nausea with weight loss off and on since October. She has done this off and on all of her life. We have had everything from bloodworm to an upper GI. We are awaiting a gastric emptying test, but she has ALL of the most common symptoms of CVS except extreme vomiting. Has anyone ever had a dignosis with only throw up into the mouth or occasionally throwing up? Her nausea and other symptoms flair and then lessen.
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Kathy Nelson
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Chelle

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Reply with quote  #2 
That sounds like my son now 14 he was Dx with Abdominal migraines. He has a lot of acid reflux when not on acid reducer. Abdominal pain, neasua, head migraines. Are his normal issues. He hasn't lost weight though.
He is on gabapentin, pamalor daily, plus supplements. During an episode he can take zofran, Levisen, supplements like Heathers tummy Tammers or IBGARD, plus benadryl for deep sleep, also sea bands have been helpful at times.
He was on Topamax when he was on all three neuro meds he was the healiest. But Dr. Don't want him on 3 neuro meds. We have had pain management therapy.
We can't find triggers, anxiety does play a roll.
We see both neuro and GI. He still has episodes, but we have been able to abort them at home over the last year.
I have had to pull him from public school the last few years.
Best of luck in finding the right treatment plan.

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Chelle
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wynnak

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Reply with quote  #3 
We are at the Managing the nausea stage with my son. Chellle, it sounds like you have gotten to a similar point as well. Good to hear from you again and that you son is doing okay.
My niece struggles with extreme nausea. Almost to Vomiting. They have been looking for her struggle point for years. She was diagnosed with POTS initially. Which explained a lot of her symptoms.. but the nausea persisted regardless of what they tried. They recently found that she has a stomach infection that causes a good deal of the nausea on top of the POTS.

I know that it feels like the kids have been through a bunch of testing. But there are so many things out there that cause the same or similar symptoms. Keep pushing for answers.

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Proudmommy12

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Reply with quote  #4 
That's really a strange coincidence, Blynda, as my daughter also has POTS like symptoms, but has never been fully diagnosed with tilt table testing. Chelle, she also has the migraines, abdominal pains, and acid reflux (which they successfully treat with Prilosec)...such a huge combination that one doctor tried to say conversion disorder. We had her evaluated psychologically to prove otherwise and proved that theory wrong😀 Now just to get someone to take her seriously!
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Kathy Nelson
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Chelle

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Reply with quote  #5 
I had my son tested for POTS a couple years ago after the CVSA family conference.  The test came back both times negative for it at his PCP and a specialist.    We have been struggling in an episode now since the weekend.  He missed State School testing today because he was in so much pain.  He does online school, but they need him to do the state testing in their building. he says he is not worried about the test because it doesn't affect his grade anyways.  He has been complaining about different things over the past few weeks, nausea sometimes, headache other times, abdominal pains on different days.  But they all came crashing in on him last night and today.    He has started vomiting again.  Several times since the weekend. 

Side note.....I was so upset with him, last week he came to me and said he hasn't been feeling well since Feb. and was having a lot of headaches, but he never told me he was having them daily.  What I was upset about was that he didn't tell me so I could record it and give him meds for them,  plus the part that he told me he was doing his online schoolwork every day when I asked and that he said he was done with everything by noon each day. Guess again.  He is behind with missing assignments from Feb.  I am like are you serious, I never thought he would lie to me like this to my face every day for 2 months.  Now he has a crap load of work to do to get it in before the end of the year and he gets hit with an episode. Which I am sure is some from anxiety over telling me and having to play catch up in all of his classes... I was just so hurt and upset. It is hard enough dealing with his chronic illness and now we are back to school issues like before I pulled him to do online school, by getting behind.  I didn't yell at him, but I told him this stops now and each day I have to be hard on him and make him show me what he has gotten done for the day.  
I needed to vent ..... [mad]




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Chelle
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rdean

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Reply with quote  #6 
I'm just going to throw this out there for what it's worth.  My son sounds a lot like the original poster.  He DID have intermittent vomiting though, but most of his problem was constant nausea.  At one point he lost 34 pounds.  We had the gastric emptying scan.  They looked at his gall bladder, tested him for celiac disease, etc.   He was homeschooled in 8th grade because he was just in a state of constant nausea.   We had a sort of loose diagnosis of CVS because after taking him to countless doctors, no one else knew what to call it.  (He had reflux and sort of constant burping also with bad constant stomach cramps.)   When he was in the hospital, they told us that an Xray showed a bunch of stool, so they did a "clean out" with magnesium and miralax.  This did stop the vomiting. However, five days later, he was nauseated and vomiting again despite miralax.  All along, he was having this weird diarrhea.  So we would actually try pepto etc to stop the diarrhea and cramps.  Looking back, this made things worse.  When I started supplementing with magnesium, everything changed.  Suddenly, he had solid stool instead of diarrhea and the nausea began to abate.  He's back in regular school again and although he has his challenges sometimes (still gets car sick, more prone to get sick than normal kids) he's mostly doing okay.  I know you said nothing about bowel habits or diarrhea.  But I wanted to throw it out there.  Looking back, some of the meds he was put on were constipating and could have been intensifying the nausea.  I think being backed up possibly contributed to the indigestion and nausea because as long as he keeps moving in the bathroom, he no longer has this. Just sharing in case something rings a bell.  Hope you get answers soon. 
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Proudmommy12

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Reply with quote  #7 
Thanks! We will try starting the magnesium and see if that helps😀
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Kathy Nelson
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ginny

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Reply with quote  #8 

rdean, I have been writing about this for a long time.  Reading messages since this message board first came on line I have been seeing a pattern, particularly for the adult or older child.    The meds used to treat CVS almost all, if not all, have a slowing effect for bowel movements.  We have a member, BathBoy, from the UK.  BathBoy had very serious CVS symptoms.  Finally he found out that he was full of stool and also learned that his mother had gone through the same thing.

Dr. V states that research shows rapid gastric emptying for CVS patients-- until a cycle is approaching and then gastric emptying slows.  

When things are moving slowly it is possible to have stored stool and then the new stool cannot form so it runs around the other stool.  This happened to us with one of our kids.  She had constant diarrhea and was being treated for it.  

With CVS patients being so different from each other, it is always a delicate balance to find which meds help and also to balance the good side effects and the unfortunate side effects of the treating medications.

I am happy you have found the answers for your son.  I hope he continues to do well.


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ginny CVSA Moderator
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Chelle

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Reply with quote  #9 
I know he gets backed up from time to time and Zofran seems to cause it, so when he takes several does of Zoran I give him stool softners . He has been vomiting some food but several times it has been flem.

Sometimes he has dirrea other times contspaded.

I haven't tried magnesium, I will do some research here on the message board to see about magnesium. Which Dr. Should I contact about adding it in? Pcp, GI or Neuro?
He has had several GI test all normal, but the 24 hr probe that found a lot of acid. He is on Zantac daily.

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Chelle
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Micki65

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Reply with quote  #10 
I do have this CVS diagnosis.  My main symptoms are severe abdominal pain, fainting, diarrhea, and mild vomiting,compared to the rest of the symptoms. I feel like every ounce of liquid is expelled from my body. When I had the gastric emptying test it showed rapid, even though we thought if anything, it would show delayed.  It also took 20 yrs to get a diagnosis. With me, this seems to follow a pattern of severe abdominal  pain waking me at 3am. Im lucky if I can make it to the bathroom floor without passing out.

Medications that seem to help are amitriptyline, propranolol, and hyoscyamine.
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