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Ddirose

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Reply with quote  #1 
Hi everyone. My 17 year old is having a horrible time shaking an episode. She has had CVS since she was 5. Her normal pattern is start at night and go into the next morning to afternoon. She's sore a few days but then is ok. Over presidents weekend she had an episode on Friday that lasted through the night, a small break on Saturday then started again until Monday. Felt better, was able to eat for 4 days and then started this past Sunday night again. Had to go to the hospital on Monday. Got Ativan (sp), Raglan and benadryl. Went home and slept through the night. Was ok and then started the next night again. Got her back to sleep through the night, yesterday she woke up feeling great. Kept her on oatmeal and easy things on her stomach. She woke up this morning going again. We are back at the hospital right now. She has been belching just terrible for the last few months. Recently her doc upped her birth control to a higher dose of hormones because she was spotting a little between periods, but the BC helps with her stomach pain. She also says when she's having an episode it feels like her chest is fluttering and something is stuck in her throat she cant get out or past. This not if when she threw up water is was just green from acid. Any suggestions???? Is thus just one episode that won't quit??? She started her new BC about 2 weeks ago. We have been dealing with this for a week and half now. Could it be that??? Please, any suggestions??? I'm overwhelmed and desperate. My heart is breaking for her.
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ginny

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Reply with quote  #2 
I would be suspicious of the new dosage of her BC pill.  Some feel progesterone (others do well on progesterone) can be a trigger/irritant.

Maybe speak to her gyn about the change in dose and try her on the lower dose again.  With the vomiting she is probably not properly metabolizing the BC.

Will the hospital admit her and sedate her for a couple of days to break the cycle?

For more difficult cycles I think my daughter had thorazine added to her IV.  She too had Ativan and some other meds in the IV including an antacid.  At one time she did better on Atarax than Benedryl but later on Benadryl also helped. Zofran has been used, and there are newer antiemetics that we have not needed to try.   It has been years for us (yes, there is often an end to this awful condition) so I am not sure if thorazine is appropriate.

I think I would try this approach first.  Please let us know how she is doing.







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wynnak

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Reply with quote  #3 
Ginny, thoughts on her being stuck in coalescence? If it is the BC factoring in..

Didirose, I am wondering if they have added a PPI to her plan? Omreprozole or anything like that? Especially with her burping and the acidic reflux. Try to calm that portion of things down. 

My son says that it feels like something is stuck too. He eats tums like crazy. He says it helps with the burning.

How are they  treating her with preventatives? While my son went through his growth spurts during high school, his episodes were more frequent and most likely tied to the growing and hormone changes that he was going through. We were constantly changing preventatives and Acute meds. 


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Ddirose

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Reply with quote  #4 
Hi Ginny,
Thank you for the response!!! I talked to her pediatrician and she said she thought it highly unlikely that. 5 mg more would cause this.... (I do not agree) She did however leave it to me on wether to lower her dose back down, which I chose to do. Ot also seems to me that once she started the birth control her cycles adjusted. She had been cyclong every 3 months, since being on birth control it has backed down to 6 weeks. The one thing the birth control has done for her is that she does not have the abdominal pain with the episodes line she used to. She just gets really nauseated, vomits, and has the wierd fluttering / feels like something is stuck in her throat / chest feeling. I brought her back to the ER yesterday bevause she started again yesterday morning and her BP was elevated, so they kept her over night to see how she did. So far she is fine and they are discharging her today. It literally took everything but the kitchen sink thrown at her to get her to quit vomiting yesterday. What worked on Monday wasn't enough for yesterday. We did see a GI doc today, praise God. If she wouldn't have been in the hospital who knows how long the wait would have been. We really, really, liked him. He agreed to help us with her treatment and I felt like a ton of bricks was lifted off of me.

Would you mind sharing Ginny your daughters info? Age of onset, frequency, and what she did she stop having episodes, and how long has it been? I appreciate the help and info. I need all the hope I can get right now.

Thanks,
Rose



Quote:
Originally Posted by ginny
I would be suspicious of the new dosage of her BC pill.  Some feel progesterone (others do well on progesterone) can be a trigger/irritant.

Maybe speak to her gyn about the change in dose and try her on the lower dose again.  With the vomiting she is probably not properly metabolizing the BC.

Will the hospital admit her and sedate her for a couple of days to break the cycle?

For more difficult cycles I think my daughter had thorazine added to her IV.  She too had Ativan and some other meds in the IV including an antacid.  At one time she did better on Atarax than Benedryl but later on Benadryl also helped. Zofran has been used, and there are newer antiemetics that we have not needed to try.   It has been years for us (yes, there is often an end to this awful condition) so I am not sure if thorazine is appropriate.

I think I would try this approach first.  Please let us know how she is doing.






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ginny

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Reply with quote  #5 

One thing about CVS is no two people being exactly the same.  The feeling in her throat might be esophageal spasm. 
Wynnart-- I don't think this is coalescence.  Those I know of in that pattern don't get a break or much of a break.  Good reading is Dr. Fiona Mcronald's paper on her experience with coalescence but good to consider this as well.

First major cycle was age 5, this cycle lasted over 2 weeks and required inpatient care.  She might have had a couple of more minor cycles prior.  

Her teen and college/ grad school years were the worst.We were surprised that she could pinpoint the number of minutes from one vomit to the next-- usually ten minutes.  Vomiting lasted until the exact mix of meds was administered.   Cycles were violent, most required inpatient care.  She knew when she was in need of the ER.  A couple of times her MD thought he could stop the cycle in his office but that did not work.  We did not know about CVS.  I think symptom to official diagnosis was around 17 years.

As to the BC, a friend who is a gyn suggested a careful trial with BC. First couple of tries did not help.  It was decided to be very careful with the form of progesterone.  She was on Yasmin with great results until she developed complications and had to go off.

Within a month or two of stopping Yasmin she had a cycle.

One thing the gyn suggested was starting on ibuprofen up to a week prior to the time of menses would be expected.  If your daughter does not take a BC break every month, maybe try this around day 21?  Ask the doctor first.


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Ddirose

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Reply with quote  #6 
Thank you for sharing Ginny. How long has she been episode free Ginny? And how old was she when she stopped?
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Ddirose

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Reply with quote  #7 
They do have her on a PPI. She was on Omreprozole and switched her to something different. They gave her IV acid meds at the hospital and she was still burping a little. They ate going to scope her and check her to see what's going on in there. That feeling of something being stuck drives her crazy, and the fluttery feeling she describes. Does your son still have episodes?
Thank you for the reply.

Quote:
Originally Posted by wynnak
Ginny, thoughts on her being stuck in coalescence? If it is the BC factoring in..

Didirose, I am wondering if they have added a PPI to her plan? Omreprozole or anything like that? Especially with her burping and the acidic reflux. Try to calm that portion of things down. 

My son says that it feels like something is stuck too. He eats tums like crazy. He says it helps with the burning.

How are they  treating her with preventatives? While my son went through his growth spurts during high school, his episodes were more frequent and most likely tied to the growing and hormone changes that he was going through. We were constantly changing preventatives and Acute meds. 

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wynnak

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Reply with quote  #8 
My son tells people about the pressure as he calls it. That feels like something is pushing up but won't come out.

My son's Episodes have changed from the awfulness he used to experience. But for us it is still  everyday managing. Some days are worse than others. But we eventually got him "stable". we will take the everyday managing with out the vomiting, just periods with very intense nausea over the 7-17 week episodes that he used to have. That was horrific.

That is why I was asking Ginny about the Coalescence. I know that there is a period of seeming back to normal.. but when they thought my son was in it, he was still not quite him and threw up at least once a week. Those were not his episodes, so it seemed different and he hadn't quite returned to normal. Which is what it seems like you were describing to me. 

But we also went through many changes for his episodes. So I look at that too. His episodes were "originally" two weeks long. Then fine for two weeks. Then they started lasting longer. So.. yeah as you learn and journey through. 

I know that feeling of helplessness. We have all been there. My son is 19 now. He has spent the last week inhaling his anti-nausea meds. That tells me that there is a change coming for him. It has usually been about three days. His exhaustion levels are off the chart. He is struggling to not go into an episode. My uncle died this morning, and I am hesitant to tell him. It could be the one mare thing that pushes him into one. The weather right now is bad enough. Barometric changes affect the migraine side of things for him. 


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ginny

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Reply with quote  #9 

My daughter was probably close to age 30 when the cycles stopped.  We were told that because she had not "outgrown" CVS or changed over to migraine headaches by her late teens, early twenties, she would not outgrow the condition.  She might be the exception as I think a traumatic surgery might have triggered the harrowing teen acceleration.  The surgery was extreme, complications probably included a dramatic CVS episode, maybe she went into coalescence but little was known back then. 

She seemed to intellectualize her challenges.  The hospitals did allow her many personal chocies-- type of needle, type of surgical tape, unlimited use of heat packs, even at times her choice of room (at Childrens).  The environment was secure and respectful so instead of the awful ER treatment many adults receive, she was treated compassionately.

This all changed when she aged out of pedi care.  Local community medical care/hospitals were far better than the large teaching hospital ERs.

I think Dr. Fiona McRonalds paper on coalescence is the best I have (personally) read.

There is a form of CVS called SATO but it has been years since I have heard from anyone diagnosed with that form.

There are some diagnosed with CVS who have esophageal spasm as their primary symptom and do not have the vomiting pattern.


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ginny CVSA Moderator
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Ddirose

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Reply with quote  #10 
Hi Ginny,
I have been trying to find any info on the SATO cvs. Not having a lot of luck. Do you know the main over view of the difference of what they experience? I know with our daughter her blood pressure goes up during an episode, and she is regulated more by time than triggers. Right now she has been cycling every six weeks. About 90 percent of her episodes are around her cycle.
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wynnak

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Reply with quote  #11 
Didrose, did you do a search on the messages boards? If you click the search tab the page comes up to search different words.
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Ddirose

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Reply with quote  #12 
I did. It only brings up one page, with very limited info. Gosh, it’s hard to find anything on the SATO version of CVS.
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wynnak

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Reply with quote  #13 
Did you type just SATO in search? It brought up a whole page of topics.
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Blynda
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Ddirose

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Reply with quote  #14 
I got it now. Operator error. :)
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ginny

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Reply with quote  #15 
Sorry, I have been out of town on a family emergency.

Glad SATO info came up in your search.

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ginny CVSA Moderator
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