Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
Sabanna18

Registered:
Posts: 2
Reply with quote  #1 
After 2 years of nausea, vomiting, and extreme weight loss I am almost sure that my 22 year old daughter might have CVS. All other testing has been normal and her symptoms fit CVS almost exactly. The one thing she has that I haven't seen mentioned is night sweats. She has them every night. Has anyone else had this? She has also had some swollen gland in her neck and under her arms periodically. They never go completely away but are often not as prominent. Her PCP has not been overly concerned- although I did freak out a bit. I work for an oncology practice so of course my first thought was cancer! But that doesn't seem to be the case. Her nausea is there almost every morning but she is only having bad days once every couple of weeks right now with the extreme nausea and vomiting always happening in early mornings. She feels full very quickly too. She was treated for gastroparesis with reglan - her gastric emptying study was normal-the reglan did not help stop the nausea/ vomiting spells. She lost down to a BMI of about 14. She was put on TPN and was able to gain it all back but we are now 3 months off of TPN and she has lost 20lbs already. We have made an appointment with Dr. V in WI to have her evaluated to see if CVS might be the issue. Would like to hear if anyone else here has experienced the night sweats or swollen glands with CVS.
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,505
Reply with quote  #2 
I am not sure about the night sweats but as hormones can play an active part in trigger CVS cycles for some, maybe something is off with her hormone levels.

In my memory the swollen glands can take a long time to go down. Although I don't think these are a typical symptom of CVS, she might have had an illness that brought on the swollen glands.  I assume the WBC and other tests are normal?

Dr. V reports that most adults with CVS will typically have rapid gastric emptying except things slow down toward the time of the cycle.  I think it is great that you plan to have your daughter seen by her.  She will be sure all needed tests are run for CVS and other possible conditions.

The typical pattern with CVS is to be well in between the cycles, and for the cycles to be about the same each time-- similar time to get sick (most often early AM), number of vomits (my daughter could project almost to the second the next vomit, usually every ten minutes for her), the recovery.

A lot of the patients do seem to be triggered when the gut slows down and females often have a hormone trigger during the monthly cycle. 

Significant weight loss can itself be an issue, of course.  TPN is tricky and the doctors don't often want to use it unless necessary.  If given through a peripheral line, the stuff is caustic and the line often infiltrates. Using a PICC line requires careful insertion and care of the line for access.  Any chance of NG feeding until she sees Dr. V?



__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 737
Reply with quote  #3 
My son had swollen lymph nodes. Mainly abdominal. But they are not entirely sure it was related to CVS. My son sweats regardless. He is heat intolerant and is like slimy snail when he sleeps. Always has been. It was worse when he had spew apnea or during episodes when his body has to work harder for energy. But it was like that during the day. But a tie to CVS.. I’m not sure. Sleep apnea, night sweats can be a sign. Hormones can affect that.

The under arm one perplexes me. I’m assuming that thehave down a CT and ultrasound and blood work to look for elevated anything to come back on it. What about hormone level testing?

Blynda

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Sabanna18

Registered:
Posts: 2
Reply with quote  #4 
I am not sure we had hormone testing done. I will check her medical folder. She has been on the depo shot for birth control for 6 years. She just stopped it a few months ago. We wanted to be sure the shot wasn't somehow causing some of her problems. Not sure how it might effect hormones but I assume it could. I am just now getting her to cooperate with keeping a detailed journal. Since she has been away at school and living on her own since before this all started I haven't been there to keep good records for her. As far as the NG tube goes she won't go for it. She hated being on TPN even though she gained her weight back and felt so much better. She hated the central line. But I am very thankful that we have a gastroenterologist that is willing to use TPN for her when necessary. For now we just plan to keep detailed daily journals and see what Dr. V says in June. Hopefully we can get a diagnosis and get a care plan that might help her feel better and be able to maintain a healthy weight.
Thank you for your input! We will keep you updated on what we find out for her.
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,505
Reply with quote  #5 
Some have had a poor reaction to the Depo due to it being progesterone but others have done well. Maybe an evaluation of another BC could help with the hormones.

If you do a search of the message board there is quite a bit of information.  I wold start with the easiest remaining posts on this and consider bumping these posts up (we lose information after so many years).

There are some calorie additions you might try such as Scandi Cal (a powder with no taste that can be added to any food) to help with some calories until she sees Dr. V.

I assume with TPN her liver enzymes are being carefully monitored?



__________________
ginny CVSA Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.