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Ashscobie

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Reply with quote  #1 
We’re from Dundee, Scotland.. Ashamedly I’m a practice nurse and I had never heard of CVS until I started looking in to it... I had initially been thinking she kept picking up viral bugs from her class but no one else is off sick! I’ve done hand washing stuff with her, she carries and uses wipes and rubs! It’s definitely not an infection. Cheers for the info on tooth brushing, I’ve not made her brush her teeth during an attack as it just triggers her retching! I feel like a negligent mum...
seriously thanks again, looking forward to picking up ideas and reading other peoples views x
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ginny

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Reply with quote  #2 

Hi and welcome to the message board!  I think we have a couple of members from Scotland, and I think I recall Dundee.

I did take one of your posts and moved it to the Main Forum under its own thread.  You might get more responses that way.

I think we all think about our children having a virus at first.  It finally occurred to me that no one else in the house was getting sick.  The CVS child seemed incredibly healthy and would resist the general viruses that were hitting the family.

CVS is generally thought to be a neuro metabolic mito disorder.  Changing diets does not often make much if any difference.  Every time we changed the diet, it seemed to work but then CVS would strike again.  I think it is worth trying to stay away from Migraine irritant foods although many neuro's do not think this helps much.

Some have gone gluten free with good results and others are eating low fat.  Some are on the Paleo Diet.  There are as many reports of diets that work as there are that don't work.  Maybe one nutrition plan will work for your daughter.

Please stay in touch and let us know how she is doing.  You might try a message board search for "Scotland" and see who is registered.


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wynnak

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Reply with quote  #3 
Thanks Ginny!

I'm going to tell you to NOT beat yourself up about it. We have all been there doing the "what if I did this different" questions. Or I should have noticed. It doesn't help anything. It took me years, literally years to be able to see all the differences that my son would exhibit. When to treat, when he needed rest. There is not point in berating yourself. The important part is that NOW you know! What you can do NOW. What you can do and learn moving forward. Look here. Look at triggers that people mention.

Look on our International page and see if we have a contact close to you that may be able to lend help. If not, your physician can get help from our advisors.

Our main website has a ton of information on it, make sure you are using the resources there.

Ginny, the other moderator, is very knowledgeable. And there is a TON of information in our archives here. SO search for stuff you think about. Tiggers, food intolerances, all those and tons
more.

You will see me posting about my son and how he too carries hand sanitizers, colorox wipes, even a mask now for when people around him are coughing. Nothing wrong with that. 😉 It helped him make it through the latest go round of flu at our house and college.

Here is the biggest take away for you though. You are one more medical professional that has knowledge of CVS. More of that needs to happen. You're doing what you can. You're learning. Pretty soon, you will be the one offering support, Both as as caregiver and as a medical professional. 

We are here to help support you through that. Post your questions, etc.. especially if you can't find them in the archives. There are no wrong or silly questions. 



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Ashscobie

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Reply with quote  #4 
Thank you so much for your reply, I’m finding this site an incredible support! Even though she’s not been diagnosed yet, I’m convinced she has this! She had another episode this morning. 3 weeks since the last one! Yesterday was really weird though! I’ve noticed over the last few months some coincidences/ triggers! Yesterday she was sneezing a lot, really strange as this has happened a number of times before previous episodes. She was complaining of being cold as well, I genuinely at first thought she was getting a cold. No temp though, just borderline (37.5c.) Just before bed she complained that she had a sore tummy! Something in me just clicked and I thought she’ll be up tonight with it! She slept with us, put mats down, sick bowl, bottled water by the bed. Gave her some calpol before bed. She had a really restless night, she was kicking covers off all night! We got to 6am and no episode and I thought “I’m just being paranoid, I’m seeing links that aren’t there” However 7am and it started. Not as viscous as previous times but a few episodes of vomiting nevertheless.

We’re fairly lucky, even though my husband and I find it distressing watching her like this, it doesn’t seem to phase her and she takes it all in her stride. The sneezing thing is strange though. I know with some patients I see who have gastric problems/ severe reflux they can develop a cough (usually due to gastric juices irritating the respiratory tract) Can it be a similar thing? Are drugs similar to gaviscon, Zantac etc effective?

Thanks again, I really appreciate this x
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wynnak

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Reply with quote  #5 
My son uses Omereprozole or siimiilar during and for a time after an episode.
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Andrea4d

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Reply with quote  #6 
Hi there, Had read your post and thought that with me also living in the U.K. I may be of some help. I live just on the Scottish border near Gretna in Carlisle. My son also has cvs and is 6 years old he has had it since a baby but wasn't diagnosed with it till he was nearly 4. How old is your daughter ?  My son used to have really regular episodes when very little which came every 4-8 weeks or so and most of these we managed at home but now he is older he has developed much more of a pattern of 13 weeks between cycles and the episodes have unfortunately become more intense and each time he cycles he needs admitted to hospital. His paediatrician has talked about using acid reducing medication in his drip next time he has an episode which we all feel will help a little to ease his suffering. I'm not sure about the sneezing thing can't say I've noticed it with my son but he can get a tickly cough before an episode but I find his signs are not always consistent sometimes he has really unsettled sleep other times he just wakes and it starts with no warning what so ever. I have found with cvs that just when you think you have signs and symptoms figured out it changes its ways again it's so very predictable but also really not if that makes any sense !!?!! Just like your daughter my son is one of the most resilient and bravest child I have met and he just gets on with it while it breaks my heart to see him suffer the way he does. Please feel free to ask anything if you want to know anymore about medications tried or tests carried out I unfortunately haven't got any nearer with treating my sons cvs but I certainly over the 6 years he has had it feel much more knowledgeable. Andrea x 
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