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wynnak

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Reply with quote  #1 
I have been answering a lot of questions about triggers right now. Was hoping we can get people to weigh in.

Do you think it is the cold, allergies or holiday stress that is setting you or your CVSer off right now?

My son does have allergies, that can set him off..But we manage that.

He does so much better in cold than warm.

But Holiday stress or what we refer to as Happy stress does take it's toll. 

He also has Finals that are stressing him out! 

How are all of you handling the holidays?? Do you have tips and tricks for navigating with CVS? 

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Blynda
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bspin26

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Reply with quote  #2 
This is so interesting to me right now. My son who is the CVS'er has been having more trouble recently than he has in the 10 years since he was first diagnosed.

Two of his last episodes were the week of Thanksgiving. One the Monday before when the bus garage of the school was ready to call the squad and have him transported to the hospital, and the other was Thanksgiving Day while we were bowling with family. I found him to be very clingy during that whole week.  

I wish I had tips or tricks and that is honestly why I am here.  I hope to be able to figure out how to more effectively help him.

We do the standard, he goes to counseling, he has meds, preventative and to control symptoms. I monitor what he eats and drinks and he also knows what he should not eat or drink. We are in a really rough patch right now and I really just want to make sure I am doing all I can.

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wynnak

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Reply with quote  #3 
Bonnie,

This is a fabulous place to fins those tips and tricks! Suggestions and experience. Try also searching for triggers and stuff like that that you think could be affecting him. Our archive of info is wonderful. Nice to see that you aren't alone in the struggles. See my response to your introductory post. You'll find that Ginny, the other moderator, and I have tons of experience and knowledge. Don't hesitate to share and ask questions.

Happy stress is Holiday stress.. big trigger. [smile] 

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Blynda
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bspin26

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Reply with quote  #4 
Thank you so much!  
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Bonnie [smile]
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vintageklh

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Reply with quote  #5 
I am researching CVS as a possibility diagnosis for my son(16). After reading your triggers it

makes me think this may be the answer. When his episode begins he will throw up until his

stomach is empty and a while after that. (bile)  the next day he can't keep any food down just

small sips of water. This can sometimes last for a few days. No nausea just stomach pain and of

course hunger.  Then its like a  switch, and he's fine. He could eat anything . He tested positive

for gluten allergy years ago and rarely has dairy. He does sometime seem to happen when he is

stressed but not always. I would be grateful for any help, this has been going on for 6yrs! This 

year he went 10 months without an episode but now he has had three since October. Seems 

like a trend for happening in the fall.  Also any suggestions for doctors in Virginia. Thank you!!!

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karen hartless
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wynnak

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Karen,

People do report that it literally "turns off like a switch." Have there been testing done to rule out any other issues? A lot of conditions have the exact same symptoms of CVS. 

I found out about CVS before my doctors considered it. I took it to them and they continued to do testing with to make sure it was nothing else before diagnosing with CVS.

You can contact the office at cvsa@cvsaonline.org for a doctor list. Let them know if Pediatric or adult, and where your looking.


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vintageklh

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Reply with quote  #7 
thank you for responding[smile] if his vomiting doesn't send him to the ER does that mean its not 

CVS? We have been considering PANDAS because he has sore throats sometimes before an 

episode, but he doesn't have the other symptoms of PANDAS(tics etc). 

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wynnak

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Reply with quote  #8 
I did not realize that a sore throat could be an indicator for PANDAS.

My son can go about a week before needing an ER. Some people are with in Just hours. After a week, for my son, he requires daily IV fluid. 

Did you mention if he had testing done? CT, MRI, Stomach emptying tests?? I would make sure those are all done. Email for a list, of doctors. 

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ginny

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Reply with quote  #9 

Thought I would weigh in here too.  In my opinion, one of the best sources for learning about CVS \ is the Empiric Guidelines, located on the CVSA Web Page.  Also, for testing and accurate diagnosis, the NASPGHAN study is very helpful and includes matching symptoms with suggested testing.  Even with testing, there can be a miss and another condition later diagnosed.

We had a mom on the MB for a couple of years but it was later found that her little guy actually had waxing and waning appendicitis.  Others have had Addison Disease, UPJ Disorder (referred to in the Empiric Guidelines) and more.

Stress seems to be a major factor but life is a stress.  If we try to pinpoint the type of stress, fun, anticipation, and excitement seem to be more of a factor than negative stress such as exam worries.  Sometimes I wondered if the adrenaline surge and let down factors into the positive stress trigger= episode.  

CVS is thought to be a function condition and not a digestive condition.Presently it is thought to be a neuro and Mitochondrial/ Metabolic problem.  As a functional disorder, there is nothing actually "wrong" but the symptoms indicate a health problem.  With nothing being wrong, it is easy enough to think that there is no need for a hospital stay or treatment.  The secondary part of CVS is what is concerning-- dehydration is dangerous, intense retching can trigger broken blood vessels, there can be digestive system and tooth damage from the acidity of the vomit, and then there are possible psychological effects.

If there is a gluten allergy, it is possible that there is cross contamination.  Preparing gluten-free food where gluten has ever touched can be enough to trigger a reaction.  Those I know practicing a Celiac gluten-free diet use separate toasters, utensil, plate and cup, food prep, dishwashing, and food storage areas.  There are many hidden glutens in foods.  We were misdiagnosed with Celiac Disease & followed a GF diet.  I had a friend whose four children have CD and she was a huge help in my learning the GF shopping and food prep needs.  Our entire family was GF,  the easiest way to stay on plan.

In CVS, most tests are normal (there can be other conditions coexisting with CVS). You might ask the treating doctor about the supplements CoQ10, L-Carnitine, Vitamin B and possible Magnesium (thought to help Migraine headaches).  There is information on the supplements on the Web Page, and the Message Board.  Establish CoQ10 before starting with the B vitamins.  Carnitine can be a prescription, therefore there should be less worry about the purity of accurate dosing.  Try to buy the highest quality of CoQ10 possible, especially in the beginning so you know that dosing is accurate in each capsule. 

Keep careful track of digestion. Diarrhea does not always mean diarrhea, it can be runny stool around dried out, impacted, constipated stool.  Irregular bowel movement can be nauseating.  Medication for nausea and for the CVS cycle and/or prevention can lead to or aggravate an already sluggish digestive track.  Resulting nausea can then bring on vomiting and the treatment again further slow things down.

Dr. V (CVS Medical Advisor) has reported that CVS patients, at least in the adult population, have faster gastric emptying but as a cycle approaches there is delayed gastric emptying.  It can be tough to know if the CVS patient is having sluggish digestion due to an oncoming episode, whether to treat to try to prevent the cycle or if the sluggish digestion is the cause of the distress.

A CVS patient, esp those with metabolic or mito factors, should not fast.  Some parents will add a high-quality small snack just prior to bedtime.  Some wake a child midway through the night for a small snack.  The idea is to prevent the fast that occurs from before sleep to waking time.  Many will begin to cycle middle of the night and some feel the snack can prevent that middle of the night episode.  Those who begin cycling middle of the night will not usually experience the prodrome/ warning that others might have.  

The Empiric Guidelines stress that higher doses of medication are often required, and this makes many doctors uncomfortable.  Your child's doctor can request a call with a CVSA Medical Advisor and may become more comfortable with the dosage treatment required.  

Not all antiemetics work in the same area of the brain so don't be worried if the first line of medication is not effective.  Request trying a different antiemetic.  My daughter had no luck with Compazine but has done okay with Atarax,  Benedryl, Zofran.  

If your child is not getting a decent breather between cycles, consider that the original cycle has not been broken.  It is said that the only way to break a cycle is to reset the brain. Deep sleep for several hours is required to reset the brain.  If we were admitted, sedated, and rehydrated, our daughter would wake perfectly well and crave a food such as pasta with red sauce.  Our first hospitalized cycle lasted over two weeks, but when properly medicated (Atarax that time), she woke famished and ate several hot dogs.  We did not know about CVS at the time and I was shocked that the hot dogs did not trigger more vomiting.  "Calendar Kids"-- children whose time between cycles is amazingly consistent-- are a big challenge.  They might cycle every 44 days, or 21 days-- a pattern.  The pattern can change.

The one thing to count on with CVS is inconsistency.  You think you figured it out-- and CVS then again outwits you.  

Most do well in the long run so keep your hopes high.  Many kids outgrow CVS and in our case, our daughter was well past the usual age to outgrow the cycle or to change to migraine headaches, when she stopped cycling.  It can happen.  Hang in there!



 

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ginny CVSA Moderator
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wynnak

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Reply with quote  #10 
Ginny,

As always.. You are a font of knowledge and experience. Wonderful reply. Thank you!

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Peacelj65

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Reply with quote  #11 
My 25 year old daughter has a few episodes this time of year. The holidays are hard and stressful. Not only does she have the holidays, her father passed away on December 4, 2010. His birthday was October 23, and his last thanksgiving he spent in the hospital at Duke. He had esophageal cancer. For three years of her teens she watched him fight cancer. Her first episodes were actually around a year after his passing. My heart aches for her.
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wynnak

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Reply with quote  #12 
I lost my father this year. His battle was not nearly as long. My heart goes out to both of you. This will be our First Christmas with out him. Becasue I was a bit distraught at a Doctors appointment, over my dad.. My Dr recommended that I read some books on coping with the loss. I Didn't [smile], mainly because CVS has taught us so much about coping, that I could probably write a book. Instead of focusing on the rough times, I am focusing on the happy. We bought a train to go under our tree. My dad LOVED trains. We are finding ways to bring him into the holidays and remember the good times. I still have moments of breaking and I am sure your daughter being so young and dealing with the battle for years was very hard on BOTH of you. My Dad's birthday was October too. It was not a good day. But we went out to my Dad's favorite ice cream place to celebrate Dad. I hope we all find a happy, healthy way to cope with our losses and CVS. Thank you for sharing. 
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