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Vogel_Mom_3

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Reply with quote  #1 
Hello,
I am hoping to find some guidance for avoiding episodes for my 13 year old daughter. It seems like she is constantly throwing up with very few symptom free days. We think this actually started in January 2017. We had test after test done showing nothing was wrong. We ended up taking her gallbladder out in May and her symptoms seemed to go away. She would have a bad day here and there, but nothing like before. In late October/November it started back gradually and now it is almost everyday. She vomits approximately 20-30 times a day. Zofran does nothing for her. It is worst in the morning, but we found out her cortisol is too low in the morning. I am desperate to get her back to school on a regular basis and so is she. We go next week to see a specialist at Cleveland Clinic. I am praying for some answers and help. Any tips or suggestions of things to try will be greatly appreciated!

Thank you

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ginny

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Reply with quote  #2 
Having the gallbladder removed seems to be a fairly common approach to try to stop the cycles.  Looks like the gallbladder was not the problem but is there anything that you can equate to her temporary improvement at the time of the removal?  Maybe she had more rest while she was recovering from the surgery?

I think the best thing you can do is to see the specialist.  You might also review the Empiric Guidelines and the NASPHGAN research, both located on the CVSA web page.

Has she been tested for Addison's Disease? There was a CVSA member who was diagnosed with CVS and later found to have Addisons, maybe the information is still available on the Message Board. I think she also had low cortisol levels.

I can only imagine how discouraging it has to be to have such extreme vomiting episodes and how frightened you must be as the mom.

Zofran does not work for everyone. Some do better with Benadryl or other medications.  I think the antiemetic properties can affect different parts of the brain.  Depending on where the problem lies she might respond to one antiemetic and not another.  Some reported that Zofran helped stop the actual vomiting but prolonged nausea.  Others do well on it.

For my daughter she usually needed a combo of IV medication and to be sedated into a deep sleep to reset her brain. I think she was usually released after around 48 hours of sedation.

Good luck and please let us know how your daughter is doing.







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abigaillinda

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Reply with quote  #3 
Hello Vogel Mom,

My now 20-year-old daughter sounds similar to yours.  She had her gall bladder out at age 11 with relief for about four months.  Then the episodes started back.  The guidelines the moderator mentioned are a great help. 

From age 11 through age 19, my daughter's episodes were regular and intense, requiring hospitalization 5-7 times a year.  We saw Dr. Boles (as recommended through this site) in Aug of 2017.  He tweaked my daughter's supplements and meds to therapeutic levels.  That has seemed to help the vomiting (she hasn't vomited enough to need hospitalization since then).  She still is working on overcoming other issues like daily nausea and fatigue.  

If indeed your daughter has CVS (and like Ginny said, rule out other issues like Addison's, for example), it is a long journey and difficult for both of you.  I posted recently about five areas my daughter has found she needs to monitor to maintain her health.  You can find those suggestions in my posts over the last month.

Hugs and hope,
Linda
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Vogel_Mom_3

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Reply with quote  #4 
Thank you both so much. She missed all last week of school. Had good days over this weekend. She then got a headache Sunday evening, that she woke up with this morning, so the vomiting is back. It is so frustrating. 
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abigaillinda

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Reply with quote  #5 
My heart goes out to you both today.  

My daughter is on college break and dealing with extreme fatigue.  She is trying to nap right now.  We don't know if it's the meds causing the fatigue or something else.  Not as frustrating as your day.... but still working out the effects of this debilitating syndrome.

Hugs.... and hope.
Linda
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wynnak

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Reply with quote  #6 
 I have tried to explain to my in-laws and my parents, that CVS is literally a daily struggle. We have to adjust to each day. Be it the weather that causes migraines, or the TIME CHANGE that is messing with the sleep that we have regimented for my son.. we monitor and adjust daily..mediate triggers.. 

I will expand on the anti-nausea a bit. The "best" anti-emetic out there right now is probably Emend or apripetant  (sp), which most cvs specialists are trying to get for their patients. The one that Dr. Boles tends to recommend is kytril. This tends to act as a conductor in the mitochondria for those with Mito affected CVS. My son uses both. Emend is currently a struggle to get covered for most insurance companies. We can get it inpatient, but struggle outside of the hospital. We have appealed and fought to get the kytril which my son says works better for him.. and I agree, or I wouldn't have fought for it 😉 

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Vogel_Mom_3

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Reply with quote  #7 
I believe that one of the triggers for my daughter is stress. Since she has missed so much school, she is stressed about it because she knows she needs to be there. She is concerned they will hold her back. She wants to get back, but I think she is stressing herself wanting to get back so bad... make sense? Any tips for how to relieve this for her? It is a bad domino effect I think she is unintentionally causing. I understand why she is stressed, I am just trying to help her stop it. Tips and suggestions?

Thank you!

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abigaillinda

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Reply with quote  #8 
Stress is definitely a trigger for my daughter as well.  Her chiropractor recommended HeartMath (about $200).  It's like a monitored meditation.  You can google it.

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wynnak

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Reply with quote  #9 
My son was in this exact situation. 

Stress, happy or otherwise, is acknowledged as as trigger. 

What steps have you taken with the school to help her? Do you have a 504 or IEP in place? Has you school offered home/hospital? 

Those would be the first few steps i can recommend. I would always tell my son.. We will deal with it. What ever happens. Through our struggles we learned so much. That there are lots of schooling options. Charter schools that send out the teacher, homeschooling, Virtually schooling... Some of the schools have classes that they offer "struggling" students that they can do online. Mostly core curriculum. But I would ASK! They usually don't offer the info willingly. 

My son had very high expectations for his grades. Watching them fall was absolutely devastating for him. I blocked his computer from being able to access the internet to the school page. So he couldn't watch the process. We were very open and persistent with teachers most of them worked with us, but there were a few making it very difficult. 

We stressed to my son that his health was the most important. The rest we would figure out. 

And we did. He was semester behind at one point. But ended up not only catching up, but getting ahead enough to start college his senior year while still attending High school. He graduated with High Honors with a special award in Social Sciences for having the highest GPA in the school in those classes. 

Let your daughter know that together you guys will find a way to help her be successful. That YOU aren't worried about school. That you will conquer it when she is better. All the while working on ways for her to be successful. It is more about showing them that you aren't worried. That they shouldn't be. 

Each time we tried a new schooling option, I would tell my son that if this didn't work.. we would try another. I wasn't worried about it. Knowing that there are other schooling options available, it was about finding out about them, and how they would work for our situation. 


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rdean

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Reply with quote  #10 
I am so sorry your daughter is going through this.  I really don't have any insight as to what might be wrong, but I do know all about that stress. My son had to be homeschooled due to vomiting in his 8th grade year.  When he would miss school, he would, of course, stress.  And that would make his symptoms worse.  We ended up getting a 504 which forced the teachers to send work home, but not all of them followed it.  I don't know where you live, but in florida, we have Florida virtual school.  That is what we ended up doing.  He had missed so much that on days when he wasn't vomiting, he felt overwhelmed to go back because he was simply lost.  The class was doing something that he'd had no introduction to as he'd missed so many days.  He didn't want to do virtual school, but it was actually a lifesaver because he could do it when he felt his best during the day.  They required three assignments per week per class.  He actually finished early and had a long summer. He is now back at regular school.  For him, a magnesium supplement turned a lot around.  I believe that he had chronic constipation as a contributing factor and zofran bound him worse.  We had no idea about the constipation until we tried magnesium.  He actually usually had diarrhea, but when we started magnesium, most of the vomiting stopped.  He still has break through periods, but not nearly as much.  I had a stomach bug a few months ago and I took a lot of zofran and honestly, it produced a lot of the crampy symptoms my son had.  Anyway, I would look into virtual school if you have to.  I even think that florida virtual may be available to people out of state.  The teachers were so compassionate with us and accommodations are already built into it. Assignments are already online as are notes, books etc.  My son really hated the idea of it and he was certainly ready to go back to regular school when he felt better.  But, it saved him from having to repeat or moving ahead and just being lost.  And they had "live lessons" which allowed him to participate in something daily.  Of course he would have rather been in regular school, but it kept him on a schedule, which helped him feel more productive.
Just a thought.  
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ginny

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Reply with quote  #11 
Thank you for posting this.  So many of the medications, prevention and treatments meds, do slow down and bind up the elimination system.  When there are symptoms often more meds are added.  Few are willing to consider how the slowed system works or that this can be a factor.

When there is diarrhea the cause can actually be bound up dried out stool just sitting and causing symptoms similar to CVS.

Allowing the diarrhea and not binding things up further can be helpful.  Reading posts through the years, many have diarrhea when the vomiting starts or the nausea becomes overwhelming.

A good thread on all this, including reluctance to consider slowed elimination, is from Bath Boy.

You might have helped many by posting about the magnesium.  Magnesium is various forms is a sometimes suggested supplement.  Chelated magnesium does not seem to get things moving but other forms might be more beneficial.

Some pediatricians are now adding ilk of Magnesia to the daily regimen of some children who are having issues with constipation



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Vogel_Mom_3

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Reply with quote  #12 
We went to the specialists at Cleveland Clinic on Friday. They changed some of her medicine put her on buspirone twice daily. They also gave her Lorazapem to abort. He also said to do benedryl to abort. We tried the lorazapem without the benedryl this morning, but that did not work. They said she has atypical cyclical vomiing with cohesion. They feel like her episodes are so frequent because it is always in the back of her mind. Not that she is intentionally doing it though. They suggested a psychologist and yoga or meditation. I am trying to find a psychologist local (in Indiana) that would have experience. Any thoughts or tips?

Thank you!


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wynnak

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Reply with quote  #13 
Here is the catch 22 of CVS. It creates that anxiety about it happening again, which makes you worry more about it happening, which can throw you into an episode. 

We tried looking for local people as well, but found that there is a limited amount of psychologists or Psychiatrists that treat adolescents. We looked for Chronic illness coping. Found tons for family members and spouses, but not a single one for the actual patient. We ended up looking for CBT or cognitive behavioral therapy. That is what a lot of doctors recommend now anyway. We found that a most of what they teach was what we were doing anyway. It was things that we did naturally to find triggers and find tune meds for us. I found a course online (I actually have certification in CBT) that we used. When you finish the course, you get the "certification". Not sure what it is good for.. the certification... but could be helpful for you.. It uses cause and effect.. If you are worried about this.. then this could happen. Or if this is what happened, what contributed to it?

I have since found that the local teaching hospital has different support groups that are for chronic illness. So I would recommend looking for that as well. 

There is an app that I think is called mindfulness, that helps with meditation. 

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abigaillinda

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Reply with quote  #14 
The HeartMath is helpful for my daughter's underlying anxiety.  It helps to calm the mind-- a mindfulness tool.
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