I need a place to have a nice, quiet nervous breakdown: UPDATED

[nolabear]

Last edited Sat May 7, 2016, 02:03 PM - Edit history (1)

I haven't put this on any social media because I don't want to invade my son's privacy but since this is relatively anonymous I need to talk.

My son has Cyclic Vomiting Syndrome. He's 29 and had his first bout with intractable throwing up when he was two. It stopped for a few years but when he was about fifteen it started again and he has an attack once or twice a year ever since. He starts and literally can't stop. Sometimes he throws up, violently, every few minutes until the ER (yes, we end up in the ER) docs can get enough drugs into him to stop it and literally make him pass out for hours, until it passes. He's had everything you can name, Zofran, Atavan, xanax, phenergan, imitrex (because it's thought to be migraine related) and a host of other things.

So generally this happens, we stop it, he goes home the next day. Every now and then they send him home too soon and he has to go back, but they get it under control and he resumes his healthy, active life.

This time he has spent six of the last eight days in the hospital. They can stop it but they can't make it stay stopped. He's an incredible trooper but he's beginning to look desperate and I feel desperate. I'm home from the hospital while Mr. Bear stays with him until, we hope, he settles in for the night.

But frankly I'm scared shitless. I guess it's not possible for it to never stop but this is horrifying. And though we'll go back to doctors and maybe they'll come up with something to keep it from starting again, it's hard not to just freak the hell out.

Thanks for listening. Please throw up a good thought for my kid. He's such a good man and I don't know what's going to happen.

nolabear

Update: Following morning. They had to put a midline in since his veins can't handle any more IVs. That's good news. They can start the IV fluids and drugs again. He didn't sleep much I'm told but seems to be settling down some. We haven't been over because we want him to sleep. Sleep cures this. But we're staying checked in and I'll let you all know.

The good thoughts, vibes, prayers and caring words are like a tonic to me, though, and what's good for the mama is good for the kid. Many thanks to you all.

[Wounded Bear]

1. K & R ......

Wishing you and your son the best.

[nolabear]

2. Thanks. It's good to hear. I'll regain perspective somewhere in here.

But I might freak out a while first.

[Wounded Bear]

4. Understood...

as a parent, I'm lucky, my daughter is healthy with two sons so far.

I can only imagine the kind of pain you're feeling.

Again, best wishes.

[2theleft]

3. Your poor son.

And you and Mr. Bear, too. Sounds so stressful for everyone. It's never easy seeing someone you love in pain and not feeling well and not being able to do anything. Sending positive thoughts out to you all. Hang in there and keep us updated.

[nolabear]

8. Thanks. I feel like we have to re-educate the doctors every time he goes in.

I almost fought one last week who lectured me on how they didn't have beds and he should go home during a lull. He ended up being there two days.

[The Velveteen Ocelot]

5. That sounds just awful! I'm so sorry for your son

and for you, too. I hope there is or will be help for him.

[nolabear]

9. I appreciate it. I'm not above begging for sympathy right now.

[fizzgig]

6. good thoughts to your son

as well as to you and mr nolabear

[nolabear]

10. Thanks. I should hang in The Lounge more often. People are nicer here.

[blogslut]

7. Oh, man. I am so sorry.

blogslut jr had an epileptic epiglottis thing when she was a baby. Couldn't keep food down. They treated her with meds and she had to sleep on her tummy strapped to a wedge. I can't imagine what life would be like if the condition continued throughout her whole life.

My heart goes out to you and your family.

[nolabear]

11. Whoof. You know somehow they never stop being your baby.

I wish I had more confidence in the medical folks. Some are great and some just seem uninterested in hearing what we know works.

Thanks for the good wishes.

[blogslut]

12. Yeah. You have to keep on them.

I kept taking her to the emergency room night after night, week after week and they looked at me like I had munchausen's by proxy. Finally the day clinic (same hospital) calls me to tell me she has a legit condition and I better get it treated or they'll call child services on me. WTF?

[LuvLoogie]

16. Pardon me, but --Fuckers!--

[MissB]

13. I hope he gets relief soon.

Long lasting relief. And I hope you are able to sigh with utter relief sometime very soon. As a parent, I know it sucks to not be able to make them better, but I can only begin to imagine how difficult this must be for you. I'm sending many positive thoughts in your direction.

[nolabear]

17. Thank you. I hope so too. I appreciate the positive thoughts!

[Little_Wing]

14. How frightening that is... feeling powerless to help our children is just the worst

My son will be 29 next month and I'm constantly surprised at my wanting to save him from the "bad" things in life, but he's never faced anything like this.

You are such a warrior! thank goodness he has you for support and love, for facing such a struggle alone would be devastating. Sending you lots good feelings and blessings, nolabear. You all will be in my thoughts.

[nolabear]

19. We'll get on top of it. Yes, 29 feels like 2 when they're sick. Thanks for the good thoughts!

[Skittles]

15. I had to Google that

are you going to that conference?
http://cvsaonline.org/2016-international-cvsa-adult-and-family-conference/

[nolabear]

20. No but I am going to encourage him to seek support. He wants to deny it.

You know, young man, otherwise heathy, doesn't want this to be real. But maybe this'll be a bit of a come-to-Jesus.

[Skittles]

22. men in general can be very resistant to medical intervention

us gals have to push them along sometimes; yes INDEED

[grasswire]

23. is this considered a rare disease?

I've never heard of it.

And I'm so sorry.

[mnhtnbb]

29. I am so sorry to hear that your family and your son are going through this. I know about denial.

My 26 year old son has Stargardt's disease--which is a juvenile, genetic form of macular degeneration--
which had a sudden onset at age 9 when he lost significant sight. He is legally blind and sees
with his peripheral vision. Obviously, there are things he can't do, but if you meet him, until you watch him
for a while, you wouldn't realize he's legally blind because he doesn't lead with letting you know it. So, denial,
yes, I understand that in a young man who appears to be perfectly healthy.

And now my husband is going through what looks like--from putting together early symptoms--Lewy Body Dementia.
He is in huge denial about it. He'll admit to the Parkinson's symptoms, but really avoids acknowledging the
cognitive symptoms. So, more denial.

When I first began to suspect that he might be showing early signs of LBD, I was pointed to an on-line resource
for the LBD Association. They have a list of MD's that are on an advisory council. Turns out that one of them
was in our own backyard and that's who I requested our primary doc refer him to when he was referred to a neurologist.
We have been seeing him for the last year--3 times now--and are very pleased with him. LBD is a difficult diagnosis to
make and is missed frequently until it has progressed quite a bit.

This is a long way around agreeing with the recommendation that you and your son really investigate the CVSA that was
mentioned upthread. There will undoubtedly be excellent resources available. I clicked through the site and found
Mollie's story particularly interesting: http://cvsaonline.org/blog/ You will note that Dr. David Fleisher, MD, a pediatric gastroenterologist from the University of Missouri, Columbia
that Mollie's mom mentions in her post is on the list of medical resources to the association, although he is now retired. There is an e-mail for him, and you might want to get
in touch with the organization to see if there is an MD in your local area that is recommended. Finding a knowledgeable doc to care for your son is really important.

Good luck with all of this. Hang in there. Finding the right resources can make all the difference in being able to handle the stress of living with this.

[nolabear]

45. Thank you. I'm sorry for your men's troubles too.

Good resources though. I'll encourage him to look them up.

[LuvLoogie]

18. Peace, Love & Wellness

[nolabear]

21. Merci beaucoup.

[Rhiannon12866]

24. Sounds terrible and so exhausting! Wishing for support and relief for you and your son...

I'm sure you already know about this, but I looked it up and found this:

Supporting Organizations

Cyclic Vomiting Syndrome Association
1050 W Bluemound Road, Suite 106
Milwaukee, WI 53226 USA
Phone: [phone]
Email: [e-mail]
Website: http://www.cvsaonline.org

[nolabear]

31. Yes. He hasn't pursued it but I hope he will now.

Any help or support would be welcome. At least to me.

[In_The_Wind]

25. Sending good vibes your way nolabear.

[nolabear]

32. ...

[silvershadow]

26. Breaks my heart. I am so sorry he and you all are going through this. You have my

thoughts and prayers this morning. Having watched numerous episodes of Real Stories of the ER and other medical mystery shows, I urge you to keep reaching out...find every medical professional to consult with...Many things have been solved this way, some with a desperate email to people around the world. Just some humble advice...take it or don't, my prayers remain Blessings.

[nolabear]

33. We're thinking even trying acupuncture if we can get him on board.

He's a stubborn 29 year old who doesn't want this to be real. This one might just convince him.

[magical thyme]

27. that sounds just awful....poor guy

to him, you and all your family.

Not looking for answer or to intrude, but have his doctors looked into mitochondrial disease?

[nolabear]

34. No. But I'll look it up. We and they have always linked it to migraine.

Thanks for the idea. I'm into looking at everything.

[magical thyme]

43. iirc, it's a classic symptom

and migraines are common with it as well...

[redwitch]

28. I am sorry nolabear.

It's an awful thing to have to worry about your child and especially when doing everything you can do doesn't feel like enough. Hang in there, I'm pulling for him.

[nolabear]

35. Thanks. That means a lot.

[femmocrat]

30. What a difficult illness. I'm so sorry.

I send your son and you the very best thoughts and wishes for good health.

I have recently been through a life-threatening health crisis with my eldest son. We never stop worrying about them. My prayers for you both, if you do not mind.

[nolabear]

36. Don't mind a bit. I figure all positive is helpful.

You're right, they're always part of you. Hope your son is doing well.

[Phentex]

37. I can't believe you said

"Please throw up a good thought for my kid."

But I will send you positive vibes and I do hope you get some answers soon.

[nolabear]

38. BWAH! A funny aside...

Hey, if it works...

A funny aside, I have a friend who went to Jazz Fest this past weekend, knowing I was insanely jealous. He asked if he could bring me anything from back home. I jokingly said (son hadn't gotten sick at this point) that I wanted a voodoo candle because I'm working on a short story about a woman whose spells skip around and I figured it would inspire. You might not know but Jazz Fest was damn near rained out, wild thunderstorms. He sort of randomly picked out a candle for me in a shop he went into to escape from the storms, based on the fact that he thought it was pretty. It was "Santa Barbara Africana," a virgin saint whose story sounded a lot like Rapunzel. But I know my voodoun, and that the picture didn't match the story, so I looked up who it really was. (Voodoo hid a lot of their practices behind Catholicism) It's really Mama Erzulie Danto, who is a fierce lwa, known as a wild woman who's deeply protective of her children. You know she's there by the presence of thunderstorms, and she casts her curses by...yep...throwing up blood.

I'm not a believer but I appreciate a good story, and maybe I feel a leeeeetle better thinking Mama Erzulie Danto is around.

[Phentex]

39. That's really cool!

I love stories like this. So randomly perfect!

[CaliforniaPeggy]

40. Omigod, my dear nolabear, I had no idea!

My heart goes out to you and your son as you get through this awful time.

I really REALLY hope he has his come-to-Jesus moment and decides it's time to take this seriously so he can be rid of it!

Look at all the great ideas and resources that have been posted since you decided to speak up about your pain! So much good here that will hopefully help.

You have my complete support, dear girl.



?

[nolabear]

46. Thanks Peggy. I'm staying off of other media with it, for his sake.

I'm in the room with him now. He looks like hell but is sleeping, albeit restlessly. No barfing for the two hours I've been here though! Fingers crossed!

[oldandhappy]

41. Der Bear family,

OMG, hard to imagine. Prayers and hugs for all of you. Sounds exhausting.

[mahatmakanejeeves]

42. What a coincidence. I just threw out a newspaper article about CVS.

I'm clearing out old newspapers. I had saved all these articles that I never had the time to read.

Saving old papers is one of the worst forms of hoarding, and I need to get a handle on it. That's a story for another day.

I had never heard of the syndrome until I saw the article.

Your son is not the only one.

Years of vomiting began when child was just an infant

[nolabear]

47. Oh yeah, we know. It's not something I'd wish on anyone.

It'll likely be ages before it strikes again. When he's fine, he's fine.

[riderinthestorm]

44. (((((Big vibes ))))) I'm so sorry to hear this.

to all of you.

Hang in there!

[rurallib]

48. can't be much worse than feeling so helpless as your child goes through this

well, I will offer my hopes for a miracle cure.

Since that isn't likely i hope your family continues to have the strength to deal with it all.