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Chelle

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Reply with quote  #16 
Thanks, I have a medication list I keep up to date so I will bring that along for sure. 
My thought on the supplements is for Traders Joes CoQ10 they sell 3 different ones so I thought if I just bring the bottles it would be easier for them to say if they think one is better than the other. 

Maybe next month we will try the SpectrumNeeds instead of getting more of the supplements he is currently taking. 

It sure is a struggle trying to regulate nutrition, exercise, and BM, nausea, and vomiting and socially active so not to be isolated.  

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Chelle
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wynnak

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Reply with quote  #17 
Dr Boles has always said Trader Joes brand.. I have only seen one. So they must be new. Dr Boles also said that Qunol was a brand he would suggest as well. I would take a picture of the labels and include those in the list.. and ask which one would be better. That way you aren't lugging them all with you 😉 Just bring the one your going to be using

Or if it is Trader Joes.. look for the difference.. 

Some suspend in Olive oil.. there are slight differences. Or the dosages.. 

I have been of the mind set.. that it will happen. Does not mean that I still don't push and look for answers or ways to make things happen.. 😉 

We tried pretty much all the nausea medications that were out there.. Even Emend when it first came out on the market. It was finding the one that worked for my kid. We stumbled up on it when he was getting treatment for his CVS in the hospital and they gave him kytril. It was one we had never tried, and bam, it just stopped the vomiting. It was crazy.  Now, he will use Kytril and emend off setting the efficacy times. Emend has just come out in generic form Aprepitant. So, if you have not run the gamut with nausea meds.. I highly suggest pushing for something other than Zofran. When we went to the MitoAction Social that Dr. Boles spoke at, he talked about how Kytril acted as a relay between things(he used the technical medical term) in the mitocondria.. That may explain why it works so well for my son. 

Once we were able to get meds that were more effective for him, our doctors worked to make it so that he wasn't episodic. Every time he had an episode,  they would change his medication levels or altogether, or add supportive supplements.. Basically fine tuning his preventatives. I think this is where a lot of work needs to be done. Since it isn't known much in the medical field, I think this is an important step that is missed. 

But, it does take a toll. My son lost a good deal of his friends. Kids he had grown up with, forgot about him. Then because he was so sick for so many years and in and out of the hospital.. he could carry on a wonderful conversation with any adult.. but put him near his peers and he has no idea how to relate to them. Still. He has been able to attend college. But is not your typical college student. He goes and then goes home. No involvement otherwise. 

He did very well at the Run for the Bucket last year. I expect that he will do very well at the conference, too. Though, I do not know how many people will be his age. Your son is a few years younger.. But, when in doubt.. My son will either be at the mall or the Fuddruckers nearby the conference. 😉 That is why he is really going.. Fuddruckers.. THe closest one to us is an hour away. Although, he usually gets either the 3/4 pound or the one pound burger.. both of which are not at the Fuddruckers there.. But then he could eat it twice a day.. 😉 We will have to make sure that they chat. My son has done phone calls and stuff for a couple teen kids. They usually don't even talk about CVS. It is just nice to know that there is someone else that has been there and knows what you actually go through. 

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Chelle

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Reply with quote  #18 
Hey, I was looking for the list of CVS Dr. by state on the site and can't find it now.  Does CVSA still have the list on web site or do I need to email and ask for it?

I didn't know there were so many nausea medications, I think the only one he has been on has been Zofran.  He has vomited 4 times today since 3:30 AM and been very nauseated all day.  I am being to think this is one long episode and not several small ones in a row. Since the 2nd week in April he has been sick 14 days.  We had to cancel out of 3 things today because he is to nauseated to go. [frown]

I have a call into his PC and asking for another referral and blood work to check a few of his levels. His specialist are both from the areas Children's Hospital right here in town. 

I am glad your son will be going, both my kids are coming and we are going to go the Zoo on Sunday if he feels up to it and the weather is nice.   I am looking forward to meeting you and your son.  Thanks for the all in help and information you have given me over the years.

 I have started writing up a summary that I a give in 2 mins was suggested.  
I am going to try the photo of the labels of the Trader Joes bottles.  They are definitely different.  


 

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Chelle
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wynnak

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Reply with quote  #19 
Chelle,

There is a thread on here.. but it is not on the site. Email the office for the most up to date list. Cvas@Cvsaonline.org

Google anti-emetics.. there are a bunch. Phenergan, etc.

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Chelle

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Reply with quote  #20 
I am packed and about ready to head out early morning to the conference.  The rest of my family is not nearly as ready as I am..  [rolleyes]

I had to stop working on his binder as I kept finding things I wanted to add or move around. So as they say I put a bow on it and calling it UPDATED/DONE for now at least.

I have my summary and questions all written out and an extra copy of a few things I want to share at the "Date with the Dr." so they can have a copy and I have a copy so we aren't trying to share the same papers. [wink]

I can't wait to meet people and feel encouragement and support all weekend long... 

Hope everyone has safe travels. We hope to stop at a few vacation spots while in the area. 

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Chelle
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wynnak

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Reply with quote  #21 
We are super excited too!!
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Blynda
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EJ

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Reply with quote  #22 
So valuable for our family to attend.  Biggest positive for my 8 yr old daughter?  She has never met or seen anyone with CVS.  Dr's are unfamiliar and somewhat hostile in our area.  This was bigger for her than I could have imagined.  Edie

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wynnak

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Reply with quote  #23 
Edie,

This is something that we can not share enough with others. For people that talk about how much the conference costs, you saw what was provided. You can not put a price on that feeling of camaraderie. It was really so wonderful to met you.

Thank you for Sharing!

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Blynda
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EJ

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Reply with quote  #24 
It was great on multiple levels - the information, the people, the effect on my daughter.  The insight I got from what's going on in her mind when I saw what she put on the CVS sticky note boards.  My husband was surprised it was actually fun for our family.  Great job!

Edie
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