Is this abdominal migranes

[Anniegirl56]

My son is 14 yrs. old and every since he was 11 he has had horrible episodes.  He is fine in between them but he gets severe pain from out of nowhere accompanied by fits of vomitting.  This usually lasts for 24 to 48 hrs at a time.  He usually gets dehydrated and loses anywhere from 5 to 10 lbs. after it's all over. He has missed several days of school and now he is getting severe nose bleeds.  We have seen his pediatrician, a gastroenterologist and now a neurologist.  The neurologist is calling this abdominal migraines.  I really don't understand the explanation of these as my understanding of migraines are swelling blood vessels in the brain.  The medicine he is given to both prevent them (Veralan) and to stop them (Migranol, phenegren or Zophran) doesn't seem to phase them. The Dr. doesn't want to change anything.  He's been on this treatment for almost 9 months with no real change. The nose bleeds may not have anything to do with this but it's scaring me because he has never done this.  It's alot of blood for a short period of time.  He's had three episodes of this within a week and has never even had a mild nosebleed before in his life.  I asked the dr. if there is anything else we can be doing and he said, that we could just sedate him through the pain.  This can't be the only answer for him.  If anyone can offer any advice, I would be so greatful.  

[coachwalker]

Hi!

Thanks for listening (reading)! It is nice to actually be able to share because absolutely NO ONE I know of has EVER heard of this. I can't "compare notes" with anyone! I know I was writing a lot and forgot to mention that I took my daughter to Cleveland Clinic about 5 years ago because my cousin's daughter was diagnosed with epilepsy and she was asked to give a family history of health issues. She told them about Katlyn's CVS. They wanted to see us so I took Katlyn in. They were looking at it as possibly some kind of seizure since her episodes only begin from being sound asleep at night and that is UNLIKE most CVS cases, apparently. They were facinated by it. However, as with the first time she was tested, nothing came back in EKGs EEGs, etc and so they were baffled. I thought it would be interesting to test her in a sleep lab because we can pretty much pin point when she is going to get an episode by 2-3 days - but that would have cost us too much.

I just noticed and I apologize for my TYPO... it is Fluoride. I even researched our city water to see the levels of fluoride they were putting in our water and more importantly, WHEN they were putting it in the water. Unfortunately, it is very hard to get the information to really make any good theories. It just makes sense to me that they would put their chemicals in the water on a cycle.  I got nowhere with the city (surprise, surprise). A great test will be when we move out of the city. We could end up in a house that uses well water. Now, that would be a true test! We have talked about doing our "test" again, but it really is a pain. We had started a few times but something would always mess it up. Now that Katlyn's cycle's are 14 weeks apart, that is even longer to try to be so disciplined to only eat, cook, and brush your teeth with bottled water. We are just too busy. I will have to ask her if she would be interested in trying it again. She is 16 and honestly, except when she is having her episode (which I realize is incredibly miserable for her for 24 hours - and really hard for people to understand that someone could vomit as much as she does), we really don't ever think about it.  She just had an episode the week before I first posted - and it was a bad one. I have to have someone stay home with her at all times because she can't do anything. It has been years since I have had to stay up all night and anticipate her throwing up and get the bucket under her mouth. It was torture because she would vomit ever 20 minutes. No one got any sleep. Now, Katlyn is a pro at it so she doesn't need me, except to get her water and empty her bucket. Right when the 24 hours is up, I get her eating "easy on the stomach" foods and plenty of liquids. She usually misses two days of school, but she is a straight A student so it hasn't effected her grades ever.

I just remember how worried and scared I was back when we were first going through this. You think the worst and think it is so terrible. I would like to figure this out and think that if the right research were done that maybe we could, but I also want to let other moms know how long we have been dealing with it and Katlyn is one of the greatest kids you could find anywhere - she does has this "weird thing", as we all call it! So, stomach migraines, seizures, fluoride... "no cause, no cure". It seems like after 16 years, that is still the case from what I am reading!

Christine

[Dr Santos]

Hi,
How is your daughter? Thank you for sharing your story. It would definitely help others in coping with CVS in more ways than one.  I also would want to commend you for being strong and all what you have done for your daughter.  It is indeed interesting to note the one episode where she skipped.. Were you able to try the absence of fluorine again? Take care and hope to hear from you soon.

[coachwalker]

I was just introduced to this site. I think beside asking questions it is good to share experiences... here is my daughter's, for what it is worth...

First, I might add this information... my daughter was diagnosed when she was 2 years old with Cyclic Vomiting Syndrome, after many different kids of tests. The symptoms started as early as 11 months - and maybe sooner (because at first you just think they have the flu - until you notice no one else is getting sick, and there is a pattern). A doctor at Akron Childrens Hospital diagnosed her and put her on a couple different medications for "migraines of the stomach". The medication DID ABSOLUTELY NOTHING and so he kept wanting us to give her more - still NOTHING worked and we tried it for almost two years because the doctor insisted it would work. He was wrong. I don't know about anyone else, but I decided my kid was NOT going to be the one to be experimented on with drugs AND I researched and knew the drugs have known side-effects! I took her off the medications. So, I think my daughter is a great SUBJECT of someone with diagnosed CVS that has not had ANY medication for it since she was 3 years old. She is now 16.

So, if you want to take the time to read... this might or might not make you feel better... Here are my daughter's classic symptoms in a nutshell: Her vomiting is ONLY triggered when she is sound asleep at night - SHE HAS NEVER STARTED THROWING UP WHEN SHE IS AWAKE. She started out having episodes exactly every 8 weeks - for exactly 24 hours - throwing up every 20 minutes. Right when the 24 hours is up, she is TOTALLY back to normal and you would never think she had just been throwing up so much! My daughter's cycle has slowly stretched out from the original 8 weeks to 14 weeks over the past 16 years. Her episodes are still exactly 24 hours long, throws up every 20 minutes (retching) AND she still has only ever started an episode while she is sound asleep. She has never had to be hospitalized since she is back to normal after 24 hours. We just get her eating good as soon as we can to get her balanced out - which as she gets older - takes longer.

She is totally normal (incredible athlete, totally healthy, straight A student), except for"her throw up thing" which everyone in the school and her friends are aware of. I admit that these episodes are totally debilitating for her. She has to be in a dark room without TV or ceiling fan. She basically doesn't move and is like someone with a massive hang-over. I know this sounds like a person with a migraine headache but I will add ONE OTHER INTERESTING FACT... she has never had a headache in her life EXCEPT this past June 1st - 1st one ever - but it was very mild! I also might add this - she has 3 sisters and each of them are totally normal with no signs of migraines or any food allergies, etc.

So, CVS or something else? Well, it is definitely cyclical, which I might add, many of the other stories I have read about AREN'T based so much on a calendar as my daughter's totally is! You can pin point her episode to within a few days... we know she is due to throw up again the first week of volleyball season in the fall and we are just hoping it won't hit on the day of her first match since she is the setter!

When I first tried researching this I thought that maybe she was having actual migraines and her body was reacting to them without pain in her head. But I haven't found anyone that truly has cyclical migraines - severe headaches that you can put on the calendar at regular intervals. I really think the most interesting thing is that episodes are triggered when she is sound asleep at night. I have not hear of migraines being triggered while sleeping OR occuring on a very regular cycle -  Also, no one in the family has migraines.

Okay, I need to add one more interesting thing. Back when she was younger and I was researching everything about CVS, I read about some study that suggested CVS might be related to something she was eating (I know some people have suggested food allergies). This one story I read was about a kid who ended up not having episodes after he quit ingesting anything with fluorine. I thought we would give it a try and for 8 solid weeks we were totally faithful to not letting my daughter brush her teeth with city water, no fluorine in her water OR what I cooked with... SHE SKIPPED AN EPISODE, and I thought I was brilliant. HOWEVER, this was the ONLY episode she has every skipped in 16 years. It came back 8 weeks after the skipped episode for only 12 hours instead of the typical 24... and then the next 8 weeks, came back in full force. I have never gotten it to skip again. It's like her body adjusted itself to my experiment and I was only able to "shock or surprise" her system once.... interesting...

~~~ Mom with CVS daugher for 16 years...

[Dr Santos]

Hi,
Here are some websites that may help: http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/
http://emedicine.medscape.com/article/933135-overview
http://www.cvsaonline.org/
http://www.aboutkidsgi.org/site/about-gi-health-in-kids/functional-gi-and-motility-disorders/cyclic-vomiting-syndrome
You can also google this and check on the other sites.  Support groups are very helpful.  You may also want to rule out depression as a result of the condition, especially if he hates being around people and if he discontinues sports and active life. Depression is actually  very common in teenagers. This is sometimes overlooked. Medications may be of help. Take care and best regards.

[Anniegirl56]

Thank you, for your help.  My son is better from the last attack now, thank you for asking.  Also, thank you for the advice and your honesty.  No one has mentioned that there isn't a known cause before.  That is one thing that has worried me is not knowing what was causing this.  His father has Crohn's disease and my concern was that it was the start of Crohn's.  We did see a gastro doctor that did not think it is Crohn's but said, that it could develop and wants to watch him.  I'll also, ask about cyclic vomiting syndrome.  This really sounds just like what my son is doing.  Up until this year he has been very active (in between episodes)  in sports and was generally healthy.  Now I think he just waits until he gets sick again rather than live his life.  He hates for people to know about it, therefore he just stops being around people.  This way, he doesn't have to explain why he couldn't make the game, practice, etc.  This again, is another reason that I am trying to find help for him.  Thank you, again for your help and if there are any websites that have more information on cyclic vomiting syndrome, please let me know.

[Dr Santos]

Hi,
How is your son? Migraines are associated with cyclic vomiting syndrome, where in episodes or cycles of nausea and vomiting may last a few hours or a few days. During these episodes, children may have decreased activity and a decreased appetite, headache, abdominal pain, pallor and they may even become dehydrated. Once the episode is over, children are usually symptom free and well until the next time it happens. The cause is not known but usually, this condition have a family history of migraines and it can often be prevented with the same migraine medications. Nosebleeds can be due to a sinus infection, allergies, irritated blood vessels,  or even dry air. Have this checked by an ENT doctor to rule out any problems. Direct clinical examination is important. Take care and do keep us posted.