Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 6 of 10     «   Prev   3   4   5   6   7   8   9   Next   »
thatmom06

Registered:
Posts: 8
Reply with quote  #76 
We do have a wonderful geneticist we are working with, but she hasn't prescribed anything just yet.  We are currently waiting for the results of our whole exome sequencing.  We should get those back in about 4 more weeks, and hopefully we'll get a little more information from that.  He just started taking Paxil as a preventative per his psychiatrist, but it's literally only been a week and a half, and the last four doses he was unable to take because he was vomiting.  We have settled on a CVS diagnosis pending the results of the exome sequencing, and his trigger is definitely anxiety, which he is also being treated for (Paxil, clonazepam as needed, weekly therapy).  It definitely seems he has been growing like crazy lately and sure enough his episodes have been unrelenting.  It scares me to think what his teen years will be like.
__________________
Jennifer
0
LizzyinDC

Registered:
Posts: 4
Reply with quote  #77 
a
0
LizzyinDC

Registered:
Posts: 4
Reply with quote  #78 
Hello. New to this board. I am a 48 year old mom who has always had a sensitive stomach who started getting vomiting once a month 4 years ago. It was almost always the same time of the month around my period (I didnt figure this out because I had an IUD amd wasnt getting regular periods.)

After a bunch of tests for different ailments, H Pylori, Celiac, upper endo, colonoscopy etc. my awesome nurse practioner said “Oh it’s abdominal migraines!”

I have had to go to ER several times and have a prescription for Zofran. I have never been hospitalized. I know that more than 3 glasses of wine is a trigger bit other than that, no clue. The worst has been 48 hours plus of vomiting and 4 days in bed.

Yesterday out of the blue at 3:30 pm I got billious and nauseated. Slight throbbing headache. I hadn’t eaten for several hours and ate soup and a zantac and doxycycline. By 6 pm it all came back up. Took zofran and felt a little better. Had some crackers and sip of water with broth and came back violently at 11 pm. I took two benedryl and a zanax to get sleep and rested from 1-7 am. Now sipped gatorade and nausea coming back. Head hurts. I really need to find a specialist in my area to get a treatment plan in place.

My kids are scared that mom is always sick and my husband (altho sympathetic) thinks this is crazy.

Also do I go to ER if I vomit again this morning?

Please advise and thank you!

Elizabeth

PS I had very cold feet yesterday before attack. Weird?t
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,531
Reply with quote  #79 
The difference between abdominal migraine and CVS cycles is semantics (I am told).  Ab Migraine involves more pain and CVS involves more vomiting.  Have you had testing done to rule out other conditions?  Try reading The Empiric Guidelines on the CVSA web page for information on the stages of a cycle, meds, testing.
Most can tell a cycle from a stomach bug.  CVS is thought to be a neuro mito functional condition.  Although your tummy might feel sick or painful, the origin is though to be neuro.  A good paper to read is The Entiric Nervous System: A Second Brain.  The paper itself may no longer be online but there is a lot of related information to be found by searching for the paper.
The reason for the ER has to do with dehydration symptoms, vomiting blood, severe pain, possible complications and possible secondary conditions. 
For the mito aspect of CVS, fasting is not good. Some have a small high quality snack just before bed or even wake middle of the night to have a bit of food.
As to the cold feet, prodrome or warning of an impending episode can vary.  You might not get any warning as well, esp if you wake middle of the night.
The nausea hitting around your period is probably one of the most common triggers.  A doctor told me to take something like ibuprofen starting a week to 5 days before the period is expected,  this will keep prostaglandins down and might help.  Also be sure that your digestion is running normally.  
Let us know about your specialist and hope you do much better after the rest and light eating.


__________________
ginny CVSA Moderator
0
Chloes_Mom_10

Registered:
Posts: 1
Reply with quote  #80 
Hello everyone. My name is Heather. My ten year old daughter has been struggling with terrifying mystery vomiting (we named it "Flaky Tummy") since she was 5. We don't have a formal diagnosis, but there's no question that what she has is CVS.

Here's our story:

When Chloe was in kindergarten, she started throwing up. School would call me to get her, I'd bring her home and she'd be fine. I'd keep her home for a few days, then send her back only to have them call me again. I now know that cheese is a trigger, and I was sending her to school with string cheese sticks in her lunch at the time. This escalated pretty quickly into an 11 day incident. Sick, better, sick, better - until by day 11 she was lethargic and unable to stand up. Terrifying. Dehydrated, I now know. I carried her, limp, into the doctor's office. He told me to take her straight to the ER down the street. I drove right past it and took her instead to the ER of one of the top ten children's hospitals in the nation.

Once there, she was given an ultrasound and then admitted. We spent 9 days there, during which time she received, seemingly, every test they had a machine for. In addition to the ultrasound, they did either a CAT scan, MRI or both (I can't quite remember, they took her every day for tests), a barium X-ray, an upper endoscopy, endless bloodwork, and ultimately a feed tube through her nose. The feed tube ended the episode. They found nothing to diagnose, so they gave us an exclusionary diagnosis of gastroparesis and sent us home (with the feed tube, which they removed 2 weeks later after no further episodes). Here's where things got strange and I had to really look at everything in a different way.

She would have an episode every three months, exactly. Like clockwork, and I didn't know about the cheese then. I would call the pediatric gastroenterologist and tell them she's vomiting, please see us. "Oh," they'd always say. "there's been something going around. Call us back in two weeks if she isn't better." I had seen what happens after 11 days of vomiting and progressive dehydration, and I realized, ok, they won't help us. I can wait for her to get dehydrated and go back to the ER, or I can try something else. I took her to a naprapath, who uses spinal adjustment and medicinal tea primarily to treat patients. I had had luck with him treating colds. flu, aches and pains, so I brought her. She would have her vomit bucket with her in the car, vomit all the way up to the office, and as soon as he adjusted her spine and gave her a few sips of tea, that was it. Episode aborted. We did that for another year, every three months.

Eventually I called the gastroenterologist back and told the nurse - "one of these days we'll be back in the ER. When we get there, you're going to tell us that there have been no further episodes because you don't see them in her chart. She has episodes every three months, but you haven't been willing to see her without a two week wait, and by then we've taken other measures to treat her and she is better. Please write that in her chart so that her episode history is correct."
Those were apparently the magic words! "We'd like you to come in and see the doctor," she said!

At the appointment, more blood tests. At the follow up, still no answers, but the doctor tells me that this is not gastroparesis after all. I tell her what we've been doing with our naprapath. She doesn't even acknowledge that I've spoken. She gives me more bloodwork orders and tells me to take her into the ER with the orders the next time she starts vomiting. She also offers pharmaceutical prophylactics, as she calls them, that Chloe would take for life. This girl is 6 or 7 at this point. It wasn't a thought, more like a full body instinct. NO. No way. This rare pediatric specialist at this top hospital doesn't have a diagnosis, but we're going to start a lifelong pharmaceutical regimen for something we can't even identify when we can manage her condition without it?

So we haven't been back to the doctor, or to the ER for that matter. The doctor doesn't help and the naprapath does, so the choice is simple. He's also available on a walk in basis, so we simply race over there at the first sign of trouble. Clearly I don't shun western medicine. I tried it first, but it hasn't been the answer for us, at least not so far. Chloe's episodes are no longer spaced at exactly 3 months, but I now see that they are triggered by cheese. She did have a recent episode triggered by a cold or virus from what i can tell, so there's another trigger I need to watch for which is harder to avoid than cheese. I'm hoping she will outgrow it. I'm frightened to read that periods can complicate things. She's as little as a year away.

Only a couple of weeks ago did I finally stumble across CVS online. Every thing I read is exactly what we've been through, down to the misdiagnosis of gastroparesis. I'm so relieved to have access to the research and the experiences of other parents of children with CVS.

I'd like to clarify, before closing, that I do not hold any judgements about pharmaceuticals. I am not suggesting or implying that I believe pharmaceuticals shouldn't, or should, be taken in general or in any specific case other than our own. All I can say is that in our case, given her age, the manageability of her symptoms, and the lack of diagnosis or understanding of her problem, pharmaceuticals to suppress spasms seemed clearly to be the wrong choice for us in that moment. I've filled my share of prescriptions and if it's the best option for me or my children I will again.

Thank you everyone! It is such an enormous relief to find this resource. -Heather

__________________
Heather H
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,531
Reply with quote  #81 
It is always wonderful to hear about someone who is doing well. I hope this continues for Chloe.  Please keep us updated.
__________________
ginny CVSA Moderator
0
Wtemen

Registered:
Posts: 3
Reply with quote  #82 
Hi my name is Wendi my 9 year old son was recently diagnosed with CVS.
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 784
Reply with quote  #83 
Hi Wendi, Welcome. I see you have already seen about posting another topic. Hopefully you can get some help and support here.
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Ashscobie

Registered:
Posts: 4
Reply with quote  #84 
Hi, mum of 2, suspect youngest has CVS. She has appallin tooth decay that dismayed myself and her dentist Does not have a high sugar diet, brushes twice a day with an Electric toothbrush and only drinks water! She’s had 7 vomiting episodes since Aug! All starting in the middle of the night, lasts until lunchtime the following day. Low grade pyrexia (37.9) lethargy and pallor. Went to the GP today (he doesn’t think I’m nuts when I suggested this so it gives me hope) he’s referring to paeds! Should I do anything! I’m keeping a food diary! Should I limit fruit? Already reduced wheat! Should I ask for any specific tests? Just want to help my wee lass manage this better!
0
Ashscobie

Registered:
Posts: 4
Reply with quote  #85 
Hi, mum of 2, suspect youngest has CVS. She has appallin tooth decay that dismayed myself and her dentist Does not have a high sugar diet, brushes twice a day with an Electric toothbrush and only drinks water! She’s had 7 vomiting episodes since Aug! All starting in the middle of the night, lasts until lunchtime the following day. Low grade pyrexia (37.9) lethargy and pallor. Went to the GP today (he doesn’t think I’m nuts when I suggested this so it gives me hope) he’s referring to paeds! Should I do anything! I’m keeping a food diary! Should I limit fruit? Already reduced wheat! Should I ask for any specific tests? Just want to help my wee lass manage this better!
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 784
Reply with quote  #86 
Ashcobie, Welcome!

Where are you from? That way we can refer you to also consult the international CVSA groups that may have more info for your location.

I will start with tooth care. Our dentist suggested NOT to brush after vomiting. Swish with a mild dental rinse, or just baking soda and water. Her teeth are already soft from the acid in the emesis.  

The lethargy and pallor sound like CVS. We have described it as Panda face. Sunken dark eyes and whiter than usual skin color. 

Some of the tests that they may run would be a celiac panel, brain MRI, abdominal CT, MRI or ultrasound, barium swallow, x-ray.. there are quite a few. Has she had any of these yet? You may also search the archives here, as Ginny our other moderator has a bunch that she usually lists when people ask. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Ashscobie

Registered:
Posts: 4
Reply with quote  #87 
We’re from Dundee, Scotland.. Ashamedly I’m a practice nurse and I had never heard of CVS until I started looking in to it... I had initially been thinking she kept picking up viral bugs from her class but no one else is off sick! I’ve done hand washing stuff with her, she carries and uses wipes and rubs! It’s definitely not an infection. Cheers for the info on tooth brushing, I’ve not made her brush her teeth during an attack as it just triggers her retching! I feel like a negligent mum...
seriously thanks again, looking forward to picking up ideas and reading other peoples views x
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,531
Reply with quote  #88 

Hi and welcome to the message board!  I think we have a couple of members from Scotland, and I think I recall Dundee.

I did take one of your posts and moved it to the Main Forum under its own thread.  You might get more responses that way.

I think we all think about our children having a virus at first.  It finally occurred to me that no one else in the house was getting sick.  The CVS child seemed incredibly healthy and would resist the general viruses that were hitting the family.


__________________
ginny CVSA Moderator
0
Erika_B

Registered:
Posts: 3
Reply with quote  #89 
Hello, Our 13 year old son has been struggling for more than a year and half with the symptoms of C.V.S. I just found out about C.V.S. a few days ago while I was searching for Google answers to "why won't my teenage boy stop vomiting". I stumbled upon C.V.S. and coincidentally so did a friend of mine with whom I've shared my concerns about my son.  Our pediatrician has been seeing my son for the on again/off again vomiting and stomach aches for this entire time and just this last Fall suggested he see a counselor thinking that his vomiting and stomach aches were the result of social or emotional issues.  Even our son's school suggested that his illness is psychological.  He's been seeing a counselor for more than 3 months now and yet he is still having these episodes of vomiting that will last 4-5 days at a time and then he'll be fine for a few weeks in between.  It's all becoming clear to me that I think he has C.V.S.!  I was so fortunate to call a pediatric neurogastroenterology specialist clinic in our area on Wednesday and be able to get an appointment today!  I cannot tell you how excited I am to think that we may be on a path to figuring out what is going on with our son. Not only have I felt "mommy guilt" over not being able to help him feel better, I felt clueless and I also have felt judged by his school, teachers and some members of our own family that we weren't doing enough to help him.  How do you fight an enemy you don't know about?  I'm certain there will be testing in the coming weeks to rule out any other possibilities, but it is relieving to find CVSA and the resources here.  My son and I were looking over the information on cvsaonline and he commented, "Mom, it's like they are writing about me."  I will update this after we see the specialist doctor today.  Thank you for being here and for all the information you collectively have. Erika B.
0
Leigh

Registered:
Posts: 4
Reply with quote  #90 
I know exactly how you feel!  It was the same with our 13-year-old daughter, who has been symptomatic since 2nd grade and did not get an official diagnosis until last year. I remember one year of elementary school the office lady kept asking me if she was being bullied or was having trouble with peers. And apparently her teachers asked her several times if there were any problems at home. I had a good idea of what was going on with her since about the 4th grade but it still took a long time to get a referral and then have the testing done (she's in the 8th grade now). And since her episodes were always in the morning and often hit right after she got to school, I've had to explain to office staff repeatedly what is going on with her, receiving skeptic looks all the while. Especially since her episodes pass in a couple hours and then I take her back to school afterwards - they think I am bringing a sick kid back to school. So frustrating. I'm happy to say she has been on a half dose of Cyproheptadine since last October and has not had an episode since. I don't know if it's a fluke or not, or if it will become less effective at some point, but she was having an episode nearly weekly prior to that for a couple months and it stopped when she started the medicine. So we shall see. Good luck to you all!  
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.