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lobo218

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Reply with quote  #1 
Hello all - my daughter is 27, formally diagnosed about 2 years ago. She has been in what seems to be a constant series of episodes for about a month now (coalescence?) and has been treated horribly by every hospital she has gone to. She is on Medicaid in Colorado and only recently established care with a GI who was of no help in terms of advocating for her.  She finally checked herself into a psych facility as she is having suicidal thoughts but had an episode there and had to be taken to an urgent care center.  I believe the nortriptyline is the cause of these new suicidal thoughts as she's never been that way before.  She cycles frequently and has pretty severe IBS on top of it.  The hospitals there have been so unaccommodating, even threatened her with police escort.  We tried to get her to Dr. V but Colorado won't give her the referral.  We are just lost and at the end of our ropes - don't know what to do to help her.  I am an RN and call every time (I am out of state) but they usually don't listen to me, either. Thanks for letting me vent, I know many of you are going through similar situations.
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ginny

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Reply with quote  #2 
Adult care was a total shock for me.  I had been reading the posts about adult care but we were able to stay with pedi care until our daughter was out of college. First cycle when she was living on her own was at a major teaching hospital in Boston.  It was an incredible eye opener.  Our doctor called in treatment orders and the ER ignored the orders.  A male RN spotted me standing by my daughters gurney.  Another RN had walked me to the treatment area and told me to be quiet so I would not be spotted.  When the male RN saw me he lost his temper and I was threatened with being removed from the hospital.

The RN had decided that my daughter was overdosed on recreational drugs.  Her drug testing came back negative.

There are a few on this message board, including Smoke, who are managing episodes with medical marijuana.  Being in CO, your daughter would be state legal.  I don't know if there are doctors who prescribe a type of marijuana for CVS.  I think Smoke uses cannabis oil. There is also a group who have symptoms similar to CVS due to cannabis use.  Of course the ER staff would test her for drugs and she would be positive for cannabis.  This can 
bring its own mistreatment and assumptions from the ER staff.

My daughter had nightmares on Elavil.  We did not try Nortripyline.  There are some who could not manage one but did fine on the other.

Has she tried the supplements, LCarnitine and CoQ10?  Chelated magnesium?  With the IBS, Dr. Boles links IBS and CVS to mito disfunction (not disease).  Have you reviewed his web site?

Your daughters doctor can call into one of the CVSA Medical Advisors for some guidance.  Unfortunately many of the adults have been threatened with and been admitted to psych hospitals, even against their will.

Sounds like your daughter is safe for now.  Maybe the doctors at the psych hospital would contact Dr. V for a telephone consult.

Please keep us updated.





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wynnak

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Reply with quote  #3 
I am so sorry to hear this. I am hearing more and more stories like this in legal states. Even when the drug test comes back negative.

Ginny gave great advice there. I will chime in here and ask if it is possible to get a different doctor, absolutely do that. If the GI is not supportive or helpful, try to get a new one. That is one of the most important things that I can say for her. She needs to have a doctor that is supportive of what she needs before the hospital. If it is not possible to switch to another GI, try a neurologist. Try and work your way around in the system. CVS could potentially be treated by either one. We went through several GI's and even a few Neurologist before we found one, that even though she was not familiar with CVS to begin with, she learned and learned and learned about CVS.

I'm so sorry that your daughter is struggling so much. Please tell her we are thinking about her, if you can. But, please don't give in. Fight harder. Find a new doctor. Please keep us updated.

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lobo218

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Reply with quote  #4 
Thank you for your advice and support. She is doing much better today, she had some great doctors at the crisis center who spent some time with her and did some holistic healing with her (which she responds well to).  We are all pretty sure it was the nortriptyline - she has responded badly to other antidepressants in the past. It seems she is one of those people who just can't take them.  She is being released tomorrow and my husband is flying out there to be there when she gets out. They are going to look into finding a neurologist as opposed to a GI this time as well as keep up with some of the holistic therapies (acupuncture and aromatherapy). Again, thank you all so much!
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ginny

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Reply with quote  #5 
Please let us know how your daughter does.  I am very interested in hearing about how the acupuncture and aromatherapy help. I was getting acupuncture at one time and asked the doctor about using this for my daughter with CVS.  

He said that the stomach and digestive system would not likely be the target point.  We did not know about the neuro part of CVS at that time.  My daughter was away at college so we did not have an opportunity to try acupuncture.  

I often wondered what he would have diagnosed as the problem.  I recall him checking out my tongue to isolate my problem.
And as wynnak said, change doctors! Glad she is going to see a neuro.

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wynnak

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Reply with quote  #6 
So glad to hear things are better today.

We tried laser acupuncture (my son has a separate condition that makes the use of the needles a very bad idea).. we use acupressure, massage and have peppermint oil every where.. My house smells like Christmas year round. The peppermint helps with the Nausea. But there are lots more to choose from. It is a good supportive direction. Helps us manage. So glad she is being exposed to this. 

Please keep us up to date on how things are going for her. 

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mahler1987

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Reply with quote  #7 

Hi Lobo,

I am also an adult sufferer and the care we get is more often that not nothing short of abominable.  That said, I could not function even on the smallest dose of amitriptyline, nortriptyline didn't do it for me.  I finally found something that is working fairly well.  Remeron.  It too has side effects, luckily I am not aware of my experiencing any of them.  I too am an RN, however, this does not affect the awful care that I sometimes get.  The other big turning point in my treatment was my husband pushed for a port.  Once I had the port we were able to get it accessed and fluids up in the matter of a few hrs.  I had it almost 6 yrs.  That said... when homecare nursing does not follow protocol, the patient pays the price.  I had an inexperienced nurse try to access me on a weekend and her failure to follow proper technique led to my port becoming infected and removed.  Everyone is hedging on replacement since you have only have so many in a lifetime.  So far I am managing.

 

2 of the newer meds they are finding good results in adults are keppra & remeron.  If nothing else is working perhaps dumping the existing meds and starting from scratch might help.  I also found that zofran after awhile wasn't always effective so we now use both phenergan and zofran.  

 

Pattie


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lobo218

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Reply with quote  #8 
Hi Pattie,

Thanks for the information. We are really afraid to try any anti-depressants at all at this point.  I will have her ask about the Keppra, though. Her doctor is having her try Topamax right now so we'll see if that does anything, along with prn Ativan and phenergan.
Melissa
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han

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Reply with quote  #9 
Hi
I'm an old message board user but I am also 27 and live in WA state. I can relate so much to what your daughter is going through. The last time I was in Colorado and had an episode I was treated with a drug that made me go unresponsive for over 24 hours and I am also a type 1 diabetic. They released me when I couldn't answer them, move or walk on my own, and I was vomiting in my sleep. But to them all I wanted was drugs. That's how my pcp looked at me in WA and even after seeing Dr. V and getting a great GI here my doctor started to refuse the protocol. I am currently on topomax as amitriptyline and nortriptyline had bad side effect on me and just started zosimine? (Can't recall exact name) I moved closer to my GI even though rent is double the price here in hopes I can be treated better at his hospital. Please message me anytime or have your daughter talk to me <3

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