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Nothing Ever Goes Right 👎

Posted , 3 users are following.

denise10717
denise10717

Hi Guys,

This is my first post.

My daughter has been diagnosed with Cyclical Vomiting Syndrome (Cvs).

She's had this for 5 years. She gets sick for 4 to 14 days, Constant sickness day and night, Throwing up anything up to 20 times a hour on bad days. No eating and drinking throughout the episodes. So we need to go to the hospital so they can put her on drip intill the cvs has passed. CVS used to come back every 6 to 8 weeks when she was younger, lately it's every 4 months.

I hate seeing my daughter like this, I worry all the time. Nights are the worst. I feel like I'm screaming inside. Feel like I'm going nuts to be honest. I can't do nothing right. I wish I was a normal person.

Sorry to carry on.

Has anyone else been through this?

Thanks for taking the time reading this.

Denise x

0 likes, 5 replies

5 Replies

  • lisa17089
    lisa17089 denise10717

    Posted

    Hi Denise

    So sorry you are going through this it must be terrible for you and your daughter. I have never heard of it before so it's very easy for me to comment. I can't say I know what your going through because I don't and I couldn't imagine it.stay strong it sounds like you are doing a wonderful job just being her mum.

    Loafs of love to you and your daughter

    I hope she gets well soon

    Lisa xx

    • lisa17089
      lisa17089

      Posted

      Loads of love. Sorry typing error x
    • denise10717
      denise10717 lisa17089

      Posted

      Thanks Lisa.

      Cvs affects 3 kid's out of 100,000 so it's quite rare. Unfortunately doctors don't know enough about this so just have to hope she grows out of this.

      Thank you for your kind words,

      Denise x

  • Becky183
    Becky183 denise10717

    Posted

    Hi Denise, I have first hand experience with CVS. I am a sufferer of this syndrome and have been for a very long time I was diagnosed at about 6 years of age with this, it took my parents a very long time to find out what was wrong with me my first attack was on a trip to Queensland we drove and part way into the drive I began vomiting by the time we made Queensland my parents had to take me to the hospital it wasn't diagnosed at the time and I was placed on a drip and got better and the rest of the trip was fine. Over the following years I had many attacks and one year was admitted to hospital 36 times for dehydration as you can imagine my parents (my mum in particular) were going insane and some medical professionals at the time were extremely unhelpful there was even a nurse who told my mum that I was making myself sick I was 6 or 7 at the time you can imagine my mums reaction, finally while at work one day a coworker who worked with my mum and who noticed she was in a bit of a state recommended a paediatrician and got us an appointment with him that very day he was our lifesaver he diagnosed me immediately and explained the condition to us my mum told him that during these attacks even though I kept nothing down I would still want to drink everything I could he explained that my brain was telling me I was thirsty as I was dehydrated and that's why I would want to just drink and drink. I can't remember what the first Meds were he put me on but at the time my attacks were coming on an average of every second or third weekend they slowed and eventually stopped for a time unfortunately they came back when I hit puberty not as bad as before again I eventually grew out of them except at times of great stress that was one of my triggers when I lost both my nanna's and my pa I had attacks and during my first job, eventually before I aged out of paediatric care my dr placed me on a medication called Endep (amitryptyline) and I have been on it for the past 18 years (I'm 37 now) and thankfully have been attack free, my current GP has scaled back my dose which is a little scary for me as I really don't want it to reoccur but time will tell. I hope I haven't bombarded you with to much or worried you any further but my story is quite a long one as you can see. Many kids do grow out of CVS and I hope your daughter is one of the lucky ones. I mentioned triggers you might want to try and work out if there are any that you think your daughter might have however again I'm sure every case is different and maybe she won't have any.
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