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wynnak

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Reply with quote  #1 
We are so very excited for this years conference!

Here is the link to register for this years conference and to get more info.


Link for more info: https://cvsaonline.org/13th-international-adult-and-family-conference/

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Blynda
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Chelle

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Reply with quote  #2 
We are planning on going.  Two years ago I had to have foot surgery and had to cancel going.  


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Chelle
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wynnak

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Reply with quote  #3 
Chelle,

I look forward to meeting you! I feel like we grew up together, learning and navigating CVS, here on the message boards. Does that sound weird? As we went through our CVS journey.. we interacted a lot over our first few years on here. It would be nice to meet in person. Excited that you're going!

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Blynda
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Chelle

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Reply with quote  #4 
Thanks I look forward to meeting as well.  
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Chelle
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EJ

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Reply with quote  #5 
I just got notified that I got a grant from my state to attend the conference!  So excited to be able to go!  Will be registering soon.
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wynnak

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EJ,

I was so happy to hear about this. I can not wait to hear about the process to see is that type of things is available everywhere! What a great opportunity! And it just goes to show you, where ther is a will there is a way!

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ginny

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Reply with quote  #7 
Fantastic!  Congrats on the grant!



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Chelle

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Reply with quote  #8 
I want to be prepared for the conference and the date with the Dr.

My boy has been getting sick vomiting every Saturday night for the past month or more.  Ugh!!   I think switching of weather to spring always makes him have more episodes. 

So when we went 6 yrs ago, I had printouts of his current medication and supplements. All of his tests have been mostly normal so I don't have that kind of data to bring.  I can bring a list of what other meds he has been on in the past. 

Also, I am going to bring a list of his episodes.   

What else should I be able to quickly show the Dr. during the date time?

I will bring my binders full of all the stuff I have for my son.



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Chelle
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wynnak

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Chelle,

What a great idea! Let me ask a couple others what they would bring. I had literally been thinking about packing my binder too! But ours would take up a whole suit case :)

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Blynda
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wynnak

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Reply with quote  #10 
Okay, so you know that your window is 15, 20 minutes max to spend with the DR.

So what can we do to facilitate the best usage of both your times?

Definitely need a very brief version of your history. I would for sure bring meds tried and the dosages, as well of currently taking and dosages for that as well... We find that people tend to be on a lower dosage of meds than would be considered therapeutic.

I have a list of tests, on one sheet, that my son has had done and any notation if any.. Swollen lymph nodes noted etc. But I am not sure they would review that.. maybe helpful for you if your like us and go.. Umm.. let me see. 😉 


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Blynda
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wynnak

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Reply with quote  #11 
Early registration pricing is only until May 15th!! Get your tickets!! 

That being said... 

It seems that the consensus on helpful things for your 'Date' time with the doctor would be to have a written summary (under two minutes, of severity and what has been tried) bullet point questions or concerns ranked by priority. Things like what you're most concerned about – the specific characteristics of episode, diagnostic test results, abortive or prophylactic treatment, etc.

Hope that is helpful. 

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Blynda
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Chelle

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Reply with quote  #12 
Thank you for thinking about this and asking around.  I don't want to miss anything since we are lucky enough to get this opportunity.

I am working on updating everything. 

I always have a list of his episodes and what meds he took when. A couple years ago I started color coding a 2017 year calendar on one sheet and colored in the days he vomited, head or abdominal pain thinks like that.  It seems to make a bigger impact with Dr and others when they can see the days of the week or how often days are colored in per month for the whole year.  So I will bring his binders which I need to make sure are all up to date.

Thank you again this will get me started and I will work on a summary as a parent I can go on and on about it.

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Chelle
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wynnak

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Reply with quote  #13 
Tell me! That is why I got involved with CVSA as a volunteer. I can talk people's ears off about CVS. 😉 And usually do.. Besides the message boards, I have been doing the support calls for almost two years. SO.. yeah, I talk about it a lot.. I volunteer at the local hospital as a patient family advocate/advisor

Our nuero had wanted us charting migraines.. we add the nausea scale to the calendar that we give her. We color coded it too!

When the frequency of the migraines increase.. the nausea does too. So as soon as they increase, she gets on treating it.  Noting the increase in both.. In the beginning, I would make notations of things I noticed on the calendar and watch for repeats of those actions.. My guy is a sugar bug.. LOVES sugar.. before he gets episodic you offer him sugar and he acts like the thought of sugar makes him nauseous. Milk items too. Then you can notice that the salt intake also goes up, before he shows signs of nausea. So we can recognize it before he does. But there are just days that it is.. get the salt and vinegar chips and kytril. 

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Blynda
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Chelle

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Reply with quote  #14 
My guy just doesn't have much of an appetite at all overall, but he doesn't agree with me. I think part of it is because all he does it sit around now with online school. I tell him all the time to get off the computer and stop playing games on it.  But then I get I don't feel good enough to do anything else.... ugh I do have him in Fencing class once a week but has missed it twice in 6 weeks because he has been in an episode. 

I am working on the whole calendar tracking thing, I know the change of season is a trigger when he gets overheated is also a trigger  can't always fix those things.
The past six weeks like I said on the weekends he was getting sick, now this week he was fine over the weekend and was sick on Tuesday and vomited a few times late morning.  Can't seem to find a trigger.  [frown]  At least the episodes are shorter and he hasn't had the abdominal pain as bad as in the past.  A few months ago I was thinking maybe just maybe he was starting to outgrow all of this crap.  Not now.. [redface]

I am going to bring the bottles for his supplements so at the Dr. date they can see what he is on. I did see Dr. Boles new supplement and that looked interesting.  My guy hates taking so many darn pills twice a day.  So maybe this new supplement would reduce the # of pills.

 

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Chelle
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wynnak

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Reply with quote  #15 
We went through the same struggles with my son. But, we encouraged exercise, as did his Nuero. But then, the exercise would exhaust him. We had to find a happy medium. Today for example, mine was supposed to mow the lawn. But, his sleep schedule was off because he had to drive me to work, two days in a row. So, he is exhausted because of the sleep change. We can tell by looking at him that he is struggling. So he gets another day to mow, but he will vacuum. Slightly less taxing but still moving.

I would suggest a list of the meds, and dosages, Will take up valuable time for them to read each label. i know you'll be traveling with them any way 😉 but, i think a list would be easier. I'm not sure if you have an account with your care provider for access to medical records, but that is a good place to get a list easily.
I would love to try Spectrum needs as well. Looks wonderful.

We were so excited about the lack of abdominal pain. My guy would curl up in the fetal position crying and begging to go to the hospital. So hard to watch them suffer like that!

My son eats very little, but the appetite changes a lot. He can go days where we are pushing a protein shake on him, or banana.. so he eats something. This also helps offset migraine issues. But, then there are days that the hollow leg kicks in and we don't have enough food in the house to keep him sated. After having met several times with a nutritionist, we don't worry about it overly much. But, we do push the nutrition or protein shakes to help supplement what he doesnt get. Usually have to find an isolate that isn't milky. since milky textures he struggles with when he is off, if you know what I mean.

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Blynda
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