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CVS AND ABDOMINAL MIGRAINES

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Crohn's Disease
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Posted 9/21/2009 2:20 AM (GMT 0)
Hey everyone, it has been awhile since I have been here.  Ivy is doing pretty good with her diarrhea and bleeding.  She has had a ruff summer because of vomiting and abdominal pain.  They have now given her a new diagnosis along with the IBD.  It is cyclic vomiting syndrome and abdominal migraines.  Does anyone here have this also?  Is it something that goes along with the IBD?  I never heard of this before.  Ivy throws up a lot.  I mean a lot.  Up to 17 times in an hour.  During these episodes her food is never digested.  Sometimes 12 hours after she has eaten.  They are doing a new complete blood work up on her.  They are looking at her Amino Acids in her urine and Lactic acid and Pyruvic in her blood.  So just a new worry and need some reasurance from some old friends.  The CVS has a message board but it doesn't feel right.  I trust you people more.   If anyone can give me any information on the CVS and abdominal migraines I would truely appreciate it.

 

Thanks,

 

Ivy's mom

Posted 9/21/2009 5:31 AM (GMT 0)
Abdominal Migraines? I have heard that there is a histamine reaction in the blood vessels from CD that can cause migraines - maybe that's what they mean? The vomiting would ordinarily suggest a blockage, but if they are calling it CVS, that's new to me. It sounds like she's a candidate for tube feeding or even intravenous feeding until they can get the CVS under control. Have they done food allergy tests on her yet? With the CVS, it may be something more internal that is upset - electrolytes or even bowel paralysis comes to mind. I hope they can sort out a cause for this quickly since the malnutrition will cause its own set of problems. Meantime, here's a link about treatment: http://pediatrics.aappublications.org/cgi/content/abstract/100/6/977
Posted 9/21/2009 2:20 PM (GMT 0)
Thanks for the reply. I will look into the info. There is no blockage at this time. The CVS association has sent me some info and it does sound like what my daughter is going thru. They are saying there is no cause but there are theories as why some children get this. One is mitochondrial(sp?). Ivy has had food allergy testing and we keep a food journal. The info that CVSA sent was that infections and nervousness can cause a episode. Even excitement can cause vomiting. I just wanted to thank you for taking the time to help me my new info. I was in shock when I first found out but as I am learning (just like with the Crohn's disease) it becomes more managable. I will keep you updated so that it may help some other kids in here. CVS is primarily a child disease but they don't outgrow it. They do go into remission or they develop migraine headaches. So if some parents here have a child that is still in a great deal of pain and they are vomiting then maybe they should mention this to there GI. Thanks again!

Ivy's mom
Becky
Posted 9/21/2009 4:00 PM (GMT 0)
My husband has this. As it turns out they used to only dignose this in children. When he was a kid the only person who belived him that he did not feel well was his mom. We went 18 years thinking the vomiting was part of his Lupus. Turns out they have only been dignosing in adults for about 10 years. We changed GIs and in 5 minutes this is what we were told. I know that there is not a lot that can be done for it. I know from watching that it is extremely painful. I know that he is trying to save his teeth by rinsing with Listerine after every vomiting episode. We could talk more, but I think it would be easier via email. you are welcome to send me on at [email protected], just mention this site in the subject. I only check it every couple of days so don't think I have forgotten you.
Posted 9/21/2009 5:03 PM (GMT 0)
Wow...I've never heard of either of those. I can't imagine how miserable that must be for her. :(
Posted 9/21/2009 6:16 PM (GMT 0)
I have heard of CVS but not abdominal migraines. I just wanted to say that my heart goes out to those of you who are living with this.
Posted 9/21/2009 8:03 PM (GMT 0)
The treatment that they seem to use is a medication that is used to treat migraines. It fits with the observation that migraines are connected with elevated IgE (immune globulin E) - which is common in Crohn's and elevated histamine in the blood. There is some speculation that allergies contribute to the problem, but in Crohn's, the problems can arise from Crohn's all by itself - no allergies needed (unless allergies contribute to Crohn's - another unknown). Just why this results in CVS is not obvious.

There are other conditions that mimic CVS and they should be checked for. The one that pops out is Addison's disease - an adrenal problem - because it also is mistaken for Crohn's on occasion. Here is another link to a background paper on CVS: Treating children’s cyclic vomiting
Posted 9/22/2009 4:14 PM (GMT 0)
I know with my husband that we have run every test there is and are 100% positive at this time it is CVS. Also, just because it is a migraine of the abdomin does not mean you can treat it the same. I know for my husband he has to watch is emotions and anything that is an extreme will set him off. Currently he has not been able to get this flare under control for over a year. This time last year we did 12 trips to ER in a 3 month time frame. The only thing they can do is 4mg of diloteds (I know I spelled that wrong), and that is to try to bring the pain to a level where he can manage it.
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