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wynnak

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Reply with quote  #1 
Our transition to adult care is not going well.

It’s close to starting all over again looking for the help we need from the medical community.

We started our adult journey around November last year. My son’s episodes had been mostly controlled with his medicine regimen for a couple years. Or so we had fooled ourselves saying since he hadn’t been as bad as he was previously. If he wasn’t Vomiting he was fine, right? Wrong! He was still having 2-5 days of intense but mostly controlled nausea.

We didn’t even consider them episodes until we realized how frequently he had been having them.

But by the time we figured out that he was still considered episodic, he was also over the age for seeing his pediatric doctor.

Then, it was December and we were scrambling to get a new doctor. Even before the hectic family visit that started the Vomiting in a couple of years.

Since then we waited to see the first doctor that our pediatric care team assured us could take care of him..

That didn’t go well. She told us that he couldn’t have CVS because he was an adult and adults don’t have CVS. We gave her an informational packet and a promise to send her the Adult Guidelines when they are published. I also had a conversation with the director of neurology and her mentor about adult CVS.

But that didn’t help us get treatment, or a doctor that would or could treat him.

This is where we were before when we almost lost him. Without direction, without medical help, and losing hope quickly.

In case you haven’t been able to tell, I’m stressed and worried about my son and care going forward since he isn’t keeping anything down right now. Not just a break through vomit here or there, full on projectile vomiting and unable to keep down meds or fluids.

So as is sit here hoping that he sleeps it off and tomorrow It’ll be better..

I consider this an update and hopefully a guide or possibly a what not to do in transitioning to adult care.

So welcome as we will update our new journey of adult care for CVS. We are starting all over again, or starting new.


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Blynda
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kelewis

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Reply with quote  #2 

I'm so sorry to hear your son has been struggling. I was traveling last week so wasn't checking the board but just got the email update today with this post. Have you had any further developments in the past 8 days?  I am happy to brainstorm with you, if you want to talk on the phone. I'll also send you a meditation that I've been finding helpful. We're still in the holding pattern, the trip was stressful for us last week but we're settling in again now. My daughter did get the Kytril and it cut the vomiting episodes by half each night BUT it turns out it was causing severe constipation; my daughter made the connection after the 2nd enema in 2 weeks - yuck! So now back to vomiting 10-15 times per night, waiting to see if the Amitryptiline will eventually help. 

Hang in there!!

Karen

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wynnak

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Reply with quote  #3 
Karen,

We have TONS of coping mechanisms in place. I was licensed in CBT because we had no one local to help us. We use essential oils, pressure point bands, acupressure, massage, etc. There is a particular relaxation ASMR for migraines that we use for migraine abortives (and to sedate my mother). We have a full range of things. He hasn't had this struggle in quite some time. Which is why we started getting him back on track for seeing his care team. He has aged out of them helping, and locating a Dr that will treat adult CVS is hard as we all know. We had a referral to the team that should have taken care of adult CVS through his peds team, but they flat out said He can't have CVS as an adult. 

We are working on our second and third options. It just stinks to be here again. 

He recovered in a couple days.. but the catalyst of his first vomiting episode in 2 1/2 years is coming to visit.. Next week. So keep your fingers crossed for us 😉 Thanks! 

Oh, and for the constipation.. Check with her doctor about magnesium.. can be supportive of Migraines and CVS (my sons takes it as a preventative). You may know that it comes in different forms, and one of them can help with constipation.

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kelewis

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Reply with quote  #4 
You sound like us!  I'd love to know more about the ASMR relaxation. We've used lots of different meditation resources, apps, etc and I recommend a lot of them to my patients as well (Calm, headspace, etc). The one that I recently discovered that has been helping me is a tapping "surrogate meditation" one; Saskia is resistant to doing a lot of things herself, and I feel helpless so at least it makes me feel like I'm offering something. 
Good luck with next week. Similar issues here too and my parents are coming to visit next friday too. Though I told them years ago I had a 3 day limit for them staying with us, and this time I asked if they would be willing to stay in a hotel the whole 5 days since we're up so much in the night. I put it in the context of making them more comfortable, and she seemed to listen. So we'll see. I hope you're able to keep this visit shorter, and more relaxing than the last time!
She does take some magnesium but we may want to switch the formulation; I'll ask Dr Boles. Thanks!!

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ginny

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Reply with quote  #5 
Chelated Magnesium will allow absorption--the study on the supplements posted on the CVSA web page mentions chelated,  Our PCP preferred Magnesium Citrate.  I cannot recall but could it be that we also had mg in the IV?  Sounds familiar but fortunately so long ago that it is blissfully difficult to remember.
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shayden

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Reply with quote  #6 
Wynnak -

So sorry for the delayed reply, but you’ve been on my heart and mind since getting an email about the latest posts. You and Ginny, as well as this board, have been so important to my strength in moments of frustration and loneliness; I just wanted to reach out and let you know that while I don’t have answers, I am here for support and you are not alone as you re-navigate this journey in the adult world.

Please let me know if there is anything you need.

Hugs from Texas -
Serena
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wynnak

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Reply with quote  #7 
Serena,

Thank you!  I can't tell you how much the message boards have helped in our journey. Thank you for the wonderful words. 

I just got back from Texas. I was at a conference there. That was part of my delay in response. 

Support on here is wonderful right? Has always been my go to. But every one interacting is what does that. So thank you all. 


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shayden

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Reply with quote  #8 
Blynda -

How is your son doing? Still been thinking about y’all and hoping you’ve received some answers.

Best,
Serena
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wynnak

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Reply with quote  #9 
Serena, 

This is too funny.. I am recently back from a conference in Washington, DC. We are researching the best options moving forward. I know we say that each time we "research". I can't tell you how many times that I have assured myself and him that we found the one.. 

So, here we are.. Looking at Dr.s, still. In fact, My personal care has been transferred to another medical facility, so I have reached out to a physician at the new medical place to see how receptive transferring my son's care to them they are. So seeing how that goes. I reached out to the physician that CVSA had on their referral list.  Until then, our primary care has been prescribing his kytril.. and he was the one that set up infusion centers before, so although I am still worried.. I know we still have back up plans. I'd just prefer to not use them. 

Thank you for checking!

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shayden

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Reply with quote  #10 
Blynda -

You mentioned your care - do you suffer from chronic illness too?

Yes - definitely reach out to the doctors on the list before scheduling. I scheduled an appointment in Houston with a doctor who was on the list only for him to tell me he does not specialize in CVS and had no idea how he got on a list. I reached out to a doctor in El Paso from the list, but heard nothing and realized she was a researcher/professor and does not have a clinic. Then I reached out to a physician on the list from the Dallas area only to learn the doctor was leaving the clinic and they weren’t sure whether or not that doctor specialized in CVS. I finally settled on staying with Dr. V!! I did let CVSA know :)

I’m sure you have thought about it, but would you have your son transfer to Dr. V’s care?

Has he at least been able to remain episode free?

Best,
Serena
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wynnak

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Reply with quote  #11 


Since I have been at a couple of the conferences that CVSA attends talking, educating and giving information to DR's , I will tell you that DR's have the ability to sign up to be on our list all the time. They can sign up online and it is very clear what they are signing up for. You can sign up to just get information, or if you treat CVS patients you can sign up to be on the referral list. When doctors change offices or retire, they do not notify us. So from experience, I know that dr's have signed up then realized they signed up wrong and ended up on the list. So glad that you let the office know so that they can follow up with them. We would never sign a doctor up without their permission.

We go to Milwaukee at least once a year. We at one time were considering Dr.V. We have other referral doctors closer to us that we will try first. We need to make sure that we are able to get care relatively close to home. Motion Sickness is one of his triggers. So flying can be challenging. 

He is having his regular episodes.. regular now anyway. I say that because his have changed a lot the more we fine tune his meds. When we aren't able to abort the vomiting, I tend to panic. And we've had more than I would care to admit lately. He was managed for 2 years. Closer to 3.. So when he hasn't thrown up for 2 years (aborting vomiting still struggles with intense nausea) we tend to get a little concerned about that. Now we just need to feel more comfortable that we can take care of things here. 


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