Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 5 of 5     «   Prev   2   3   4   5
PghMomma

Registered:
Posts: 3
Reply with quote  #61 
Ginny, 

Thank you so much for your reply! I guess there are different stress triggers than what I was thinking. Her dad suffers from anxiety but has it under control. Perhaps she too has anxiety about things and we just haven't been able to pick up on it yet. 

Her GI doctor actually printed out that chart from the NASPGHAN research paper and gave it to us at her first visit. She seemed pretty convinced even then (without any testing) that we're dealing with CVS. I have an email into the GI doctor to see what test she wants to do next. I was just wondering if some other parents can give me any insight about what first initial tests their kids went through before being diagnosed. We've done the blood work and the Upper GI. Do they do an endoscopy or Lower GI test too? I've read about people having MRIs as well.

I hate seeing my baby go through these tests. It's so very hard. She did so well with the Upper GI test though. Didn't even cry and drank the nasty tasting barium without complaint. I'll check out the Empiric Guidelines now. Thank you! 

She is not currently breastfeeding. She wouldn't latch but I exclusively pumped for 4 months but then it got too hard after I returned to work so we switched her to formula gradually. She's been on formula since about 4 1/2 months old up until she turned 1 and then we gradually switched to cows milk per her pediatrician.

I get a little stressed out or moody right before my period so maybe she's picking up on that and it's making her stressed and anxious. I never thought about my mood affecting her so much. I'll talk to her doctor about that and my OBGYN as well. I never asked because I just felt it was crazy and so weird but maybe there is a correlation there! I'll ask her doctor about the Ibuprofen as well (great tip, thanks!)

I'll also check out any Calendar Kids forums. That's definitely a name I could give to her. It's like clockwork! At least we pretty much know when it's going to happen and can prepare a little bit. Still, makes me so sad when it happens every single month. 

Thanks again for all this wonderful information and tips. I truly appreciate it and I'm so thankful I found this forum and that we're not alone in this. Thanks! 



0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #62 
Hi LauraLynn,

Did you mention you were in Pittsburgh, PA. We have a couple good doctors there. I hope you're seeing one of them. 

The tests you are mentioning or have done are all part of ruling out other conditions. I think we did blood work a few times. Celiac, enzymes, allergies.. two brain MRI's, Ultrasounds, x-rays, barium swallow, gastric emptying.. 

Read the calendar kid info, or look around on here for info or comments on the calendar kids. My son's also got more intense when he was growing.. She will be more tired until she adjusts to the meds. 

Kids pick up on everything. If you or your husband are stressed.. that comes through in tone of voice, your posture and grip are different, heart rate,  they can tell if your at ease or stressed. Try deep breathing or relaxation techniques while you hold her. If you think the stress is affecting.

We would put my son's episodes on the calendar to look for the pattern. Write things that I noticed with in a couple days of the start of his episodes. and look for patterns there as well. Right now he is every second week of the month. So we can pretreat with his nausea meds and hopefully abort his episode. Having the calendar version is a little easier to get a head of for treating. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
PghMomma

Registered:
Posts: 3
Reply with quote  #63 
Blynda, 

Thanks for the reply! I am in Pittsburgh, PA. We are currently seeing Dr. Sandra Kim at Children's hospital. I really like her so far, but I'm always open to recommendations. 

I'm going to talk to her doctor about possibly seeing an allergist soon. I just think with all the allergies her father and I have (seasonal for me and nuts for him) that maybe she could have some allergies or intolerances to certain things. 

I'm going to try more relaxation techniques and work on my stress levels. I'm actually 12 weeks pregnant right now so I'm dealing with crazy hormones but it's getting better. [wink] 

That's a great idea about the calendar and looking for patterns. We've been keeping a food log to see if there's a pattern in something she's eating but we can't find anything yet. She's a toddler so she pretty much eats the same things (picky) so it's really hard to say if a certain food is causing it, but I'll keep in mind environmental factors like stress, excitement, etc. as well.

We don't have any abortive meds yet. Just the Cyproheptadine she takes every night. But knock on wood, her episodes haven't been too bad. She'll usually just throw up until her stomach is empty and be fine. She'll even eat afterward sometimes and it's like nothing happened. I'm just hoping and praying it doesn't get worse. 

Thanks again for all the tips and advice! I appreciate it! 
0
Peacelj65

Registered:
Posts: 4
Reply with quote  #64 
My name is Laurie. My 26 year old daughter has been plagued with cvs for about 5 years now. It took until last year to figure out what the dx is. She has been scoped, had colonoscopy, been mri’d, scanned and X-rayed. She has endured discrimination at hospitals and from higher than thou doctors. I finally had a “moment” with a gastro doc last year and schooled him on cvs and the causes, symptoms, and possible treatments. I get that medical docs need a physical reason for any injury or ailment. What they struggle with is the hormonal or mental/emotional cause for a physical ailment. It’s mind boggling. But this guy finally listened. Referred her to the psych doc in the hospital and they came up with a plan. Amatriptaline as maintenance and klonopin for acute anxiety attacks. This helped tremendously. She has only had two episodes in the last year. But they do still occur. Almost always in first few days of period. And around stressful holidays. It’s so heartbreaking. The hospital near her new place just treated her poorly. Today. She went back to hospital near old house in the next city and they were better. But the stigma is so odd to me. She isn’t asking for pain meds. She just wants fluids and anti nausea meds. And her cycles of sickness almost always last 2-4 days. But they want to move her out in less than one. So she is right back within hours. She can’t shake the nausea until it has run it’s course.
I am equally baffled by the lack of knowledge of cvs in the medical community. They are closed minded for the most part. And because it mimics the symptoms of cannabinoid hyperemisis syndrome the stigma and discrimination and judgement comes into play immediately.
I am happy to find a place to compare notes and find healing and unity. As a mom it is just heartbreaking to watch my baby go through this. She hates herself when this happens. Hates her body for being sick and her mind for being anxiety ridden and causing the cvs. 💔💔💔💔
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #65 
Laurie, welcome. This place has been such a haven for me while looking and learning about CVS as something my son could have. Look into functional diseases. It’s when there is not something structurally wrong. I liken it to the doctors having to see it to believe it. There is lots of information about the menstral cycle and CVS on the archives here. People can find relief with birth control pills. We learned to take the meds earlier to help abort episodes. Look at ER suggestion topics for help. Maybe your Doctor can write her a treatment plan for the ER.
In the meantime, watch for the support calls and have your daughter and you be involved with that. I know it is refreshing to people to know that are not the only ones going through or struggling with CVS related issues. As the mom of a cvs kid, it helped me a bunch. As did just looking through this site. Hope we are able to help .

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Peacelj65

Registered:
Posts: 4
Reply with quote  #66 
Quote:
Originally Posted by abstractgirl
Hi.  I am Julie, mom of a 25 year old daughter with CVS.  It has been a rough couple of years with no real help from the medical community.  I am afraid for my daughter.
0
paskudne

Registered:
Posts: 1
Reply with quote  #67 
Hey everyone!
My names Mary, I'm a 24 year old mortuary science student living in Philadelphia with CVS :^)
I was diagnosed in 2012 and I see Dr. Henry Parkman as my GI specialist. Before this year I was experiencing episodes that would last up to 2 weeks and require hospitalization once a month, usually around when I would get my period, so we stopped that completely.

However, I think I've made a lot of progress with my illness. In 2016 I wasn't sick the whole year and, unfortunately, this year I've had 2 short trips to the hospital.

I'd like to think for a lucky few, this illness will just go away, and at some point I'd like to get there, but until then here I am, lol!
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #68 
Mary,

It is great that you are finding ways to live with your CVS. Welcome to the place that I have found most of my Support before and after my Son's Diagnosis. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Leigh

Registered:
Posts: 1
Reply with quote  #69 
Hello!  My name is Leigh and my 13-year-old daughter, Molly, has CVS. She was formally diagnosed this year but has been having vomiting episodes since she was about 8. She tends to be very "textbook" in terms of symptoms. She will either wake up in the morning in the midst of an episode or it will start right after breakfast. Never any other time of day. Most of the time it's over within a few hours and she's right back to normal, though now that she's getting older, she is vomiting less times (usually 2-3 times) and the episode length is shorter (a couple hours at the most). However, the episodes are happening more frequently.  In the past couple months she's had about one a week. For the first 3-4 years, she'd have maybe 4-5 episodes in the spring and the same in the fall (never the summer). Her first pediatrician kept telling us it was a stomach bug so we changed pediatricians. The second pediatrician called them abdominal migraines, though he later changed his mind and tried to blame it on constipation (it was not, of course). We finally got a referral to a GI at the end of last year. Molly had numerous tests run with a lot of it being done during episodes so they could look at everything. That was challenging - bringing her to the hospital for testing while she was in the midst of vomiting. We finally completed all of the testing though and all was "normal," so she got the CVS diagnosis. We have tried keeping a food and activity journal before but never found any correlation between diet and activity. It's always seemingly random. I do wonder if the frequency has increased this year because she got her period this year. I've read there can be a relationship between the two. She is not textbook, however, in that we do not have a family history of migraines. Interestingly the only time I've ever had any migraines was when I was pregnant with her. We do have a 19-year-old daughter as well and she's never had any issues with this. I do think they will eventually result in migraine headaches. She got her first severe headache this past spring that lasted a few hours and ended in vomiting, and then it was over. I do feel lucky in that she's never become dehydrated. I think the most she ever vomited was 11 times, and that was when she was probably 8 or 9. We do keep Zofran and Motrin on hand but none of it ever seems to help. Her GI just gave her a prescription this week for Cyproheptadine that he wants her to start. We haven't started it yet because she had a cold virus this week and was running a fever, and she has an academic team tournament tomorrow and we wanted to get past all of that before trying it. I am concerned about the side effect of drowsiness. Can anyone share their experience with this?  I don't know how she will be able to function at school if she is really sleepy from it. 

I will say, Molly is a heck of a trooper, and she handles it all so beautifully. We are very thankful that she is a very laid back, easy going kid, and there isn't much that slows her down. She doesn't get stressed over much of anything and she doesn't let CVS keep her from living her life. She will be hit with an episode, vomit a few times and then get dressed and be ready to go to school. I'm always amazed at her strength and ability to keep pushing on. Our oldest daughter is our Type A, high stress kid - I'm really glad that if this had to happen, it didn't happen to her!   

I'm happy to find this forum. I have a lot of reading to do!  

Thanks!  
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #70 
I know just getting the diagnosis isn’t enough. My son has bigger and longer episodes when he was growing. Our version of hormones. I wouldn’t be surprised that it is hers coming it o play. My older daughter is the stesser too. Hard to contemplate my daughter dealing with CVS. My son is the stronger one, emotionally. He was always quiet and withdrawn. It took us a lot to find that he processed stress differently. Mainly because he put pressure on him slef to meet certain goals. But he also never showed that he was worried about things.
We changed Doctors more than I can count. Since his migraines were tied to his CVS, he sees a neurologist. GIs helped to a degree, but the neurologist was better able to treat the migraines and abdominal migraines. That pain in her stomach is most likely an abdominal migraine. We were able to treat that pain as a migraine and resolve most of it.
We have put off taking several meds due to the possible side effects. We time it with other things. Like breaks from school. Our winter break or spring break was usually spent breaking in a new med. We also adjusted a sleep schedule. We do alter it for med changes and episodes.. but having one has really helped. Same with regular meals and lots of hydration.
I also cringe when the doctors compare each episode to the “textbook” version of CVS. Because mine son didn’t fit the textbook, it made it harder to get a diagnosis. We still have doctors that say he doesn’t have it because he doesn’t fit the “textbook” description.
I hope you find support with the message boards as well. I know that it was very helpful for us to find his triggers, or even indicators of when he was showing signs of going into an episode. My son is a sugar bug. He usually rejects sugar and milk before an episode. Like his stomach is already not feeling well. Now we pretreat to try to avoid his episode. Welcome to the group.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.