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wynnak

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Reply with quote  #46 
Welcome! 

Those are pretty common triggers. The food sensitivities people have.. The diligence that needs to be maintained for those is rough and can also be triggers. Have you completely taken them out of your diet to see if there is a change? 

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Timnsd12

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Reply with quote  #47 
Hi My name is Tim and I live in San Diego, CA. I have been struggling with CVS since I was 5 years old. I am now 48.  Finally was diagnosed in October 2016.  I know the struggle and I wanted to form a network of Adults/Caregivers with CVS in the Southern California area to maybe share info on strategies, doctors, and help and support.  Since being diagnosed I have made some progress with getting a couple of doctors sort of to help, some strategies for ER visits and start a few meds and nutritional supplements that may help for me. I usually cycle every month for 1 -2 weeks.  Sometimes I can stop it and sometimes I end up in the ER.  I feel like I live two lives. my normal life and my cycle life.  Getting medical support and help is like a second job.  I have been researching as much as I can about it so I can hopefully find something that may help me to not cycle so often or to make the cycles shorter.  I have been getting a lot of push back at the ER too sine CHS has cropped up. But I  think I found a work around for it. If you are in the Southern California Area please reach out to me.
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Sbc2321

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Reply with quote  #48 
Hello
My name is Sara. I have a 5 year dd recently diagnosed with cvs. We are still learning. It's a hard process. Trying to figure out things with school.

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wynnak

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Reply with quote  #49 
Welcome, Sara.
As a CVS parent, too, my heart goes out to you. There is tons of information and support here. Hope you find it as supportive and informational as I did..I would search any thought I had here in the archives, which led to more questions that I would just post. Learned more here to begin with than from doctors.

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Eric

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Reply with quote  #50 
Hi. Our 13 year old son has had CVS pretty much since birth. He also occasionally has EoE and FAPS, and now headaches. We see a pediatrician, gastroenterologist, psychologist and are scheduled for a first appointment with a neurologist. Do most people have one doctor that coordinates the care between all the doctors?
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wynnak

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Reply with quote  #51 
Welcome Eric,

It depends on the health system. Our main health system does not talk between doctors. Which I think is a flaw in the system. There area systems that do coordinate care, or have patient centered care. When are is complex, you be ask your insurance for a case manger. That can help. But our experience is that once your referred somewhere, or get care with another doctor, they do not communicate. My son does work with a group outside of our main healthcare provider, that does coordinate. That does talk, and even includes his local doctor in communication. When he was seeing a GI and nutritionist and all the rest, they were all involved in how his care was handled. We wouldn't get medication of plans, until the doctors had agreed what was best for him. One appointment his GI came to meet with us when we had a neurologist appointment. But our experience and the plethora of hospitals, and provider groups is the standard of care. The doctors so not interact. You can request they sent a communiqué to the other during an appointment to apprise the physician of changes or suggestions. I will also tell you that my son saw them all, now he only sees a neurologist. She takes the best are of his CVS.
Have they found out the cause of the EOE? My son's was due to the Vomiting, but some people have allergies that can cause the Vomiting. So I would look into that as well.

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Eric

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Reply with quote  #52 
Thanks for the information. His EoE is due to the vomiting also but he has had it occur long after vomiting episodes have ended. He has been tested but they haven't found any allergies.
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Kate22

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Reply with quote  #53 
Hi, I'm Kate, mother of a 10 year old daughter with CVS living in the suburbs of Chicago.  Her symptoms/episodes seem to have morphed over the last year or so.  It used to be more non-stop vomiting for a few days (2-3).  Now it is far less vomiting, and abdominal pain that will go away during the day (so we think she's fine! episode over! yea!), only to then recur at night when she tries to go to bed.  I know everyone's CVS experience is different, but I haven't found anyone that exactly matches this and am wondering if anyone else has this pattern?  Although I'm happy she's having good day times, it's frustrating to over and over again think that we are totally out of the woods, only to have the pain recur in the evening and keep her up WAY later than any 10 year old should be, which then means missing school the next day (because once she finally conks out she is so tired that I just let her sleep in the next morning, plus I just don't think it's a good idea to send her back until she's stronger and we are sure the episode is over).  Sorry, that became a long-winded intro!
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wynnak

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Reply with quote  #54 
Welcome Kate22,

Asking questions is how we move forward. The story is what leads us to the questions. It also helps us understand.

First, I would make sure she has had a good deal of testing to make sure nothing else is going on. Is the abdominal pain after she eats? Or when she is getting ready to go to bed and may start thinking of the next day of school. I have seen a lot of kids have issues at school that are prompting the stress. 

And just out of Curiosity.. have you been to the specialists in Wisconsin?

There is lots of info here that you can read through.. Suggestions for school.. Like late start if   she is having issues at night but needs the recoup time.. 

Post a new thread so we can address your questions, or post on an old one that peaks your interest.

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Kate22

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Reply with quote  #55 
Quote:
Originally Posted by wynnak
Welcome Kate22,

Asking questions is how we move forward. The story is what leads us to the questions. It also helps us understand.

First, I would make sure she has had a good deal of testing to make sure nothing else is going on. Is the abdominal pain after she eats? Or when she is getting ready to go to bed and may start thinking of the next day of school. I have seen a lot of kids have issues at school that are prompting the stress. 

And just out of Curiosity.. have you been to the specialists in Wisconsin?

There is lots of info here that you can read through.. Suggestions for school.. Like late start if   she is having issues at night but needs the recoup time.. 

Post a new thread so we can address your questions, or post on an old one that peaks your interest.


Thanks for your reply!  She has definitely had a great deal of testing to rule out other possibilities.  We have a pediatric GI near us but I am hoping to make it to the specialists in WI soon.  (Actually just contacted them earlier today.)  While there are times when it seems like anxiety (about something like school) might be a contributing factor to an episode starting, what I'm talking about is not that.  It's more like once an episode has already been triggered, the symptoms become on-again, off-again for several days, with the "on's" happening at night, and she just doesn't seem at all stressed, worried, or anxious about anything external in her life like school or friends at these times (just obviously distressed about the belly pain itself).  I will definitely poke around the old threads for more information.  Thank you!
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Katelynn87

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Reply with quote  #56 
Hello, not sure if I am writing in the appropriate spot, this is my first time. My name is Kate I am 29. I have been suffering with this since I was 25. It has never been as bad as it has been this year. I am going thru a custody battle with my ex husband for my two children and it seems like any court dates or meetings with my attorney always bring on an attack for me. It always starts off with just a little pain in my stomach. Then it's like my mind is on my stomach for the rest of the day, me trying to focus and tell myself don't let this pain get too bad. But once I vomit the first time, there's no turning back. I have officially been in an attack now for 3 weeks. I am going to emergency room tonight as soon as my children get picked up. The last time I was admitted and they put a camera down my throat and didn't find anything. They gave me lots of medicine to put me to sleep. I need to know what do I ask for, what do I tell them without them thinking I'm crazy. I can't eat or sleep. I can't work and I can barely drive my kids to school I have to pull over every time and throw up. I've been taking pics of it and documenting it but I just feel like this will never end. Everybody thinks it's "just stress" and I need to "just calm down"..... but I can't..... like how do you deal with the constant throwing up and NOTHING comes out. I even urinate on myself,... please y'all... I can't be alone in this. Does anyone have any advice to offer?
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Katelynn87

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Reply with quote  #57 
Oh, I just seen there was another Kate in here that joined today as well. Hello Kate, I hope this group is able to help you. I know what your daughter is going thru [frown]
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ginny

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Reply with quote  #58 

To both Kates, anxiety is a stress and stress seems to play a big role in CVS.  For the night before school, maybe Kates daughter starting to relax at home is a part of the situation with the adrenaline lessening. Hormone changes often also influence cycle changes.  For many while the adrenaline is being released they seem to be ok but after the rush they crash.  I agree with Wynnak about testing, about going to WI to see the CVS group, and also to try for a later start time.  (That is how we handled out daughter-- once she woke, it was off to school.  There was no resistance from her and at certain times in her pattern of CVS there were days where she needed to be released.  Back then we had not heard about CVS but the late start and release seemed to be logical.)

Katelynn87, the custody battle must be incredibly stressful.  Most adults with CVS have stress as a trigger. Both Kates, if you have not read the copy I pasted to the message board regarding Dr. Boles changes in using the Supplements, please review.  Keeping your energy even might help. Suggestions to prevent a fast include a high quality snack either middle of the night or just before bed.  This could be a whole grain cracker with protein such as cheese or cornstarch stirred into a cold drink (few seem to tolerate the cornstarch taste).  

For adults there is often a bowel component and this can be true for kids as well.  Be sure the bowels are working correctly, most adults (and some kids) seem to have a functional bowel problem and both rapid and delayed gastric emptying are part of a CVS.  Things slow down as a cycle approaches.

Katelynn87, Is there a doctor who might be able to help you with medication during the custody stress?  

Kate22 and Katelynn87, please review the Empiric Guidelines for the suggested treatment at each stage of a cycle.



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PghMomma

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Reply with quote  #59 
Hi, everyone! My name is Lauralynn and I'm 35 from Pittsburgh, PA. My 2-year-old daughter has been throwing up in cycles since she was about 13 months old. When she was a baby she was a spitter. She would spit up a ton, like way more than normal babies. She also had acid reflux and was put on Zantac which did help, but the doctor took her off it at 11 months old. We didn't think much of it until around 13-14 months old when it wasn't spit up anymore and it was actual vomiting. She was vomiting like an adult. Completely emptying her stomach and it happened around the same time each month (starts around the 6th of the month, which oddly enough is when I would start my menstrual period). I've read that for some adults their menstrual period can be a trigger but is it possible my daughter could somehow be triggered by MY period? I know that sounds crazy and maybe it's just a coincidence because both CVS and periods are on cycles, but my husband pointed it out to me. He noticed it before I did. Weird!

I've tried to get the doctors to get me some answers, but it wasn't until a few months ago that one doctor FINALLY took me seriously after seeing her "puke schedule" with how many times she's vomited in the last year. She referred us to a GI doctor and the GI doctor said it certainly sounds like CVS but we haven't been given an official diagnosis yet.

The GI doctor did some bloodwork and all that came back normal and fine. She then ordered an Upper GI test (barium swallow test) and that also came back fine and normal. So, now I don't really know what to do. What tests could be done next? I know that CVS can only be diagnosed when everything else is eliminated and ruled out. But what are some other tests that could be performed now? 

The GI doctor put my daughter on a small dose of Cyproheptadine to take at bedtime. She started taking it at the beginning of September. I know it's still early, but that medicine just doesn't seem to be working. It makes her sleepy and she sleeps really well but she's still vomiting a few days a month. I don't think the medicine is improving anything.

So I guess now we are in a waiting game and more tests will need to be done. Another question I have is, should we also seek out a neurologist and maybe an allergist as well? My husband is severely allergic to peanuts and tree nuts. Thankfully, our daughter is not allergic to those, but could she be allergic to something else and that's causing the vomiting or triggering it?

My daughter also throws up at pretty much every event, party, or birthday party we've ever been too, so I'm pretty sure excitement is another trigger for her. I'm trying to find other triggers, but it's not easy with a 2-year-old. She can't really have stress or anxiety at 2, can she? I mean she's a super happy child and doesn't seem to be stressed or have anxiety. I think colds and viruses are also triggers because even if she has the tiniest cold (no fever, just like a runny nose) she will vomit at least 1 day while being sick. I'm just hoping to get some support, insight, and to learn more about CVS because I'm pretty sure that's what my daughter has and I need help dealing with this so I can help her. Thank you so much! 
 
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ginny

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Reply with quote  #60 
I am sorry your little one is going through such a difficult time.  Stress is just about everywhere in life-- stress of allergies, stress of excitement stress of being overtired.  I think I read more about "happy" stress than the "typical stress".

Under the Research Tab on the CVSA web page you will find some very helpful information.  Please review the NASPGHAN research paper on children.  There is a nice chart that is coordinated with symptoms to help with targeting testing.  The Empiric Guidelines is another very helpful paper explaining not only testing but each stage of a the cycle.

I think it is also interesting about your period and your daughters cycles.  I don't recall hearing about this in the past but it sure does make you wonder.

Do you think that anything goes on with you personally leading up to your period?  Maybe you are tired or something similar that she picks up on?  A doctor once suggested we try Ibuprofen a few day prior to menstruation to keep prostaglandins down.  I wonder if you try this if it might somehow affect your daughters vomiting cycle?  Be sure to consult with a doctor before trying the Ibuprofen.

Is your daughter breastfeeding?  If so then the connection might make some more sense.

Let us know how things go.  For children who vomit on a schedule, there is a nickname of Calendar Kids.  There should be threads to search on the message board about Calendar Kids.  If you find older interesting information, you can bump it back to the top of the message board by simply typing in "bump" or anything else in the reply section.







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