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Sickofsick

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Reply with quote  #1 
Hello, just need to vent more than anything.

My daughter is 12 she started getting ill in around nov 2016. Excruciating stomach pain that left her in a ball for 24 hours then completely normal. The vomming started around Christmas, we just thought she'd eaten too much rubbish and treated it like a normal bug, in around March we realised it was happening all the time and started making a note of every time she got sick and took her to the drs, they have mis diagnosed, given drugs for the sake of it and generally been pretty useless. They have asked me nearly every time if she could be pregnant 1) SHE'S 12!!!
And
2) her gestation would be on par with an elephant.
In the April she was so bad, I don't know why I didn't take her to the hospital, maybe U.K. Culture of you better be nearly dead if you're going to roll up to A&E, she looked pretty dead but not fully cold. She did recover. We're probably on doctor number 14 by this point, who finally ordered a blood test that showed enough high thyroid to warrant a referral.
On to more useless doctors and no thyroid problem, by Christmas 2017 we were on the edge, her next bout she was in so much pain her eyes were rolling and she wasn't responding, off to A&e we went she vommed for a good 10 hours.

She had an MRI that flagged up an unrelated abnormalties that I freaked out about, blaming myself for her 20 minute long home birth. I have actually for the benefit of the doctors had to recount her life from conception (genuinely) at nearly every doctors appointment. The story lasts longer that the act!

Anyway they have a "working diagnosis of abdominal migraine and cyclical vomiting syndrome" and here's the thing, I don't believe them. They really haven't even tried to check everything?! Her life has turned upside down in a shortest amount of time, she would always get 100% attendance at school, now she's ill at least six times a month. They have given her mountains of medication, and she is still sick six times a month, the meds she has to take when it starts we might as well through down the toilet because they do nothing.

I'm mad, and the doctors say things like, "oh that sounds awful, poor girl, has she started menstrating yet?" Not every problem is a vagina problem?!!!

And I'm exhausted.

If you have read this far, you've already listened more that our GP.

Xx
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ginny

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Reply with quote  #2 
I did read this through and I am sorry you and your child are going through this.

Sonny Chong at Queen Mary's is the UK consultant I have heard most about. is it possible to get in to see him or have one of your doctors do a virtual consult with you and your daughter?

If she is in puberty, this is a time when things can tend to get worse (for some things can improve). She might be too young but if her episodes are related to her menstrual cycle, birth control pills can be helpful.  You will learn that the progesterone content might need to be tweaked for the right format.  

Many of the medications used for CVS can be binding which in turn can lead to more pain and nausea and more medication that decreases the discomfort but is additionally binding.  BathBoys posts in the Message Board archives describe this vicious pattern.  There are several more as well.

We have had children & recently an adult who actually had waxing and waning appendicitis.  Not a typical presentation and the condition was missed for years.

There are cases of other later discovered conditions involving the kidneys (UPJ Disorder) and endocrine system (Addisons).  With already some testing off for her thyroid, maybe keeping a watch on those tests might help figure this out.  Can you get a copy of all labs and start a graph or spread sheet to track what is being tested and if the tests are consistent?

On the CVSA web page under the Patient Tab you can locate a Journal for tracking everything from weather change to stress to food.  There is also a cycle chart to help.

Any chance her doctors would let you try the CVS Supplements?  In formation is pinned on the message board, is available in the Mito tab, and on the CVSA web page.

Please review the Empiric Guidelines and the NASPHGAN paper.   

Stay in touch and please let us know how you and your child are doing.  Try the UK CVSA branch too.  I don't think there is a message board but there might be other support and their online newsletter is excellent.





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ginny CVSA Moderator
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