Wednesday, July 18, 2012

personal......Abdominal Migraines

This is sort of personal about my daughter, but I am looking for connections.  Not many people are aware of, or have ever heard of Abdominal Migraines.  A more severe, fancy name would be Cyclic Vomiting Syndrome (click to read more about it).  It is something that my daughter, Alayna, has been dealing with for almost a year and a half now.  Getting a diagnosis is very complicating, and at age 5 (a week shy of 6) and 32 lbs after losing 7 lbs in 1 month, on the verge of being admitted for failure to thrive, her Dr. finally nailed it!

this is her a week before she got diagnosed.....and just a little over a month later, she gained 12 lbs HUGE difference. 

At first her episodes of vomiting were infrequent, starting at the age of 3.  Once every 2 months or so she would be sick for no apparent reason.  It would last for an hour to a day, and that would be it.  Then they became more frequent up until her diagnosis, she was having episodes everyday for almost 3 months straight.  There is no test and it's rare, but more children seem to be getting diagnosed.  Her treatment is a simple pill twice a day, and we give her a nausea medicine for breakthrough episodes.  It is hereditary, as I experience migraines (severe headache and aura) as well.  A migraine is used out of context a lot as a word for a major headache.  It is actually a reaction in your body, and the headache, nausea, or say an aura is a symptom of a migraine.  Yes, complicating stuff.  There are also the triggers.  At 7 years old to eliminate a trigger is like finding a needle in a haystack.  Especially with no testing.   It is hard telling if she will outgrow it, but usually in adolescence the symptoms just change to the headache stuff.

 my pretty girl now.  she weighs 46 lbs at 7 1/2

This things rears it's ugly head about once a month aside from her taking medicine.  Which, let's face a 7 year old a pill twice a day has it's own battles.  Especially when sleep is a major side effect.  Last night, out to eat, she had an episode, and it just breaks me everytime I have to see her deal with it.  I worry that my 3 year old will deal with the same things, as she is starting to have some symptoms. We don't know anyone else that has it, and it's hard for people to understand it or take it seriously.  So, I am typing up this little post, because I would love to connect with other families that are dealing with it.  Maybe even bring an awareness about it.  I get messages sometimes from people that I know who think their child may have it, or they know someone experiencing the same thing we went through. So I am here to offer any questions you have as well :)

Anyone else out there?!  I would love to know your treatments and plans?  I am really really really wanting to approach it more on a natural level...but the information available out there is little to none.  Anyways, thanks for reading this!  Please pass my information on to anyone you may know who is also experiencing it.

1 comment:

  1. Hi, One of my friends sent me the link to your blog. My daughter is 7 and also has CVS. Symptoms since 1 year old, diagnosed at 5 years. She was started on Periactin (cyproheptadine) 2x a day last December. It's a liquid, she won't take it straight so we mix it with juice and that has worked well for us. She also has an accompanying ketone issue that none of her doctors can figure out. Our pediatrician has other CVS kids in her practice but none exactly like my daughter - and I've never personally met anyone else with CVS.

    Feel free to email me at!