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MumOfCVSdaughter

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My 7 year old daughter has been having vomiting episodes for a few years but in the last year it escalated to the point of having episodes twice a month, once she starts throwing up she doesn't stop for days, usually until she's so dehydrated that we end up in the ER.  She always has an attack when she catches a cold and sometimes for unknown reasons. I only just got told she most likely has CVS, they ran a series of blood work and did a CT scan which all came back normal. The doctor now has me stocked with Zofran thank goodness because those little miracle pills seem to stop the throwing up in it's tracks.  I'm happy to have found this website and see I'm not alone. It's so stressful watching my little one suffer.  All tips and suggestions are welcomed! 
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keely hawkes
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Shellly

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Reply with quote  #2 
My heart goes out to you , it must be horrible to see your poor daughter go through this .
I've had CVS for 33 years , and my family do suffer because of this .
Let's hope your daughter grows out of this , she's only young , fingers crossed that she does.
Rest as much as she can , keep her fluids up ,
Thinking of you and your family.

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🌞 Shelly 😍
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wynnak

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Reply with quote  #3 
Welcome Keely.

Have they tried any other type of preventatives for her? Not just the zofran either. Or the mito cocktail? You can find info on the main website for that. But if her episodes are increasing, maybe they need to consider that. I would also reach out to the UK CVSA group for info and family day that can be helpful as well. http://www.cvsa.org.uk is their website. We all have different draws, but they may have doctor info for your area. There are several people on the message board and we have had some participate in the Support calls too. Making sure you have all the tools 😉 

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MumOfCVSdaughter

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Reply with quote  #4 
Thank you so much for your responses I haven't heard of the mito cocktail so I will do some research and thx for the fluids tip.  Her pediatrician tried Loratadine daily to see if allergies could be a trigger but she had an episode on that. Then hydroxyzine still had an episode, then Cyproheptadine all I think antihistamines.  We're waiting to get approved to see a GI so I'm hoping they'll may know more about it. I will look up that UK website thank you.  I was born in the UK but have been living in the USA for 20 years. Really appreciate your support :-)
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keely hawkes
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wynnak

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Reply with quote  #5 
My mistake on your location. Although, I am on the CVSA UK site as well 😉 The more you know right?

CVS Patients can have histmine issues. Our doctors have pushed the Low Fodmaps diet for this reason. We don't follow it 😉 

My son does struggle more during high allergen months. Like right now when the trees are starting to bloom here. The pear trees. They are awful. He has regular allergies and those are hard for him. So it is just like getting a cold or virus and can set him off. Sometime he has to miss a whole week of school when those trees are their strongest. The smell is just awful and the strong scent gives him migraines and can set CVS in motion. He takes the allergy meds then. 

Is your daughter growing right now? In a growth spurt? I know that was when my son's episodes would increase. It seemed harder on his body.

Search stuff like those in the archives here and see what you find. So much information here.



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sunnydeeelite

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Reply with quote  #6 
My daughter just turned 8, and has been having episodes since she was around 4. After a hospital stay for dehydration and vomiting blood (only after one day of vomiting) we were referred to a specialist and he thinks its CVS. Hers have escalated as well. First, they were just a couple of days and the Zofran would work. Now, they last up to 7 days and only IV Zofran works. When she gets a cold, flu, allergies, anything where she has mucus, thus begins the cycle. I always thought it was the mucus that irritated her stomach. Now I'm wondering if it's the actual allergies! It's been worse here in Bakersfield, CA, we are SURROUNDED BY CROPS! There's pollen everywhere. It's dry, windy and hardly ever rains. I would be interested to know if there is a geographical survey of sufferers. This only JUST occurred to me. dr. Richard Boles is in Los Angeles, very close to us, so we have started the process to try to see him. It almost seems as if they wanted to slap the CVS label on her without knowing what's going on in her physically. When we've been admitted to the hospital, they only provide support, IV hydration. They've done blood tests and x-rays and said constipation might be a trigger. She was very backed up. This isn't like diabetes where you do a test and treat. the fact that it's still a mystery is so frightening. I'm so happy to have connected with everyone. 

Blynda, the allergy medications don't seem to have helped his episodes at all?

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Lisa Dolce
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Reply with quote  #7 
Since people’s triggers can be different, allergies can trigger some. I have talked to people all over the US, and in other countries. There are not really any one thing that affects sufferers more than others. Or you would be running In to others that had it if it was just in one area. I have talked with a lot of people that allergies are a trigger. But allergies are different every where. What triggers you in Bakersfield, it may be something else somewhere else. Then not everyone is triggered by allergies with CVS. My thought. And what works for us is fending off the allergies. My son takes allergy meds, nasal spray and eye drops. So he can manage. But when the allergens are there worst.. (now while everything is blooming or fall with the molds) it doesn’t matter. We treat with his abortive meds. We did buy an air purifier that seems to be helping.

No it is t like diabetes. There is t a test for it. I find that CVS is not out of the ordinary with this. Most things doctors are doing are ruling out other things to give you a diagnosis and are usually trying a few things. 😜 not reassuring I know. Not having a “cure” is the next thing that is hard to accept. I would look more at it that you need to fine tune your individualized treatment plan. Which happens with any other condition. You may try three or four meds for any condition. CVS is not terribly different that way. It just may be more balancing of the different types of meds. It’s finding the ones that work for your CVSer.

Dr Boles is amazing! I have gone to a lecture that he presented at and it was wonderful. He will make sure that you go through the proper testing if you haven’t. I would love to see what he has to say. So if you go.. let us know!

I can’t tell you how often we were told it was constipation. That started in second grade for my guy. He missed over two months of school then and they had him live on Magnesium citrate. Nothing stayed in.. but they still kept saying he was backed up. Started again in 8th grade.. it was said over and over.. but then I always thought that them being dehydrated was contributing to that as well. Ginny will mention that it is thought that slowing of motility or for some, it speeds up. So it can be involved.

I know this is all a scary process. I’m glad that you are finding supper here. It saved me when I though we were all alone.

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