Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
number1dink

Registered:
Posts: 1
Reply with quote  #1 
My 16mo baby girl has been having monthly vomiting episodes for 9 months. The GI specialist recently took her off periactin and started her on coq10 and L-carnitine. She’s been on the supplements about 2 weeks. What is the typical time span to see a change?
__________________
regina mcginnis
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 680
Reply with quote  #2 
Regina,

I am so sorry that you and your baby girl are going through this. Did the periactin not make a difference? Wondering if they considered using the supplements with the Periactin. My son tried several different combinations of medications before finding the combo that worked for him. 

Can I ask what tests they have run on her? I just like to check to see if she has gone through the gamut of tests. Mainly because I have seen that CVS is the diagnosis when the tests haven't been run, or in the case of a few, run correctly. 

The meds usually have a time that it takes them to be effective... But your doctor may ask you to have her wait through a couple of her episodes to see if it makes a difference. I know that in case o the CoQ10, they can do a blood test to see if she is at therapeutic levels. The L-Carnitine maybe the same.. but ours only tested the CoQ10. I know that doesn't answer your question, but unfortunately, it does vary from person to person. As does the treatment for because CVS is a functional condition. Does that help at all?

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,470
Reply with quote  #3 
What type of doctor is treating the baby?  Has she had genetic consult?  As Wynnak states, testing is very important.


Periactin is usually the choice for prevention or lessening the cycles.  The baby is young and medications and supplements need to be carefully considered.  

It can take a while for medication to be at the right levels as well as the supplements to take effect.  Your doctor must be considering a mito disorder if prescribing the supplements.  Is the baby on pharmaceutical grade CoQ10 and L Carnitine?  Dr. Boles has stated a general Vit B, once CoQ10 is established, has been very helpful.

I would review the CVSA web page for the NASHGPAN study, the Empiric Guidelines, and information on the supplements (in particular Dr. Boles web page link and his video).  You might also check out MitoAction.org





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

Quick Navigation:

Easily create a Forum Website with Website Toolbox.