Cyclic Vomiting Syndrome Message Board

Anyone in the North GA. area

Cgluvscook — Thur, 15 May 2008 16:33:15 GMT

My 9 year old daughter is a CVS patient and we live in N. Georgia about 30 minutes south of the Chattanooga, TN. line.

CVS it does get easer + pregnancy with CVS

coolcat — Thur, 15 May 2008 12:15:50 GMT

Hi,

Im new to the forum so Im going to introduce myself. Im Angie from England UK and have suffered from CVS for 16 years but I have only just been diagnosed. My CVS started when I was 14 years old. I have had all the tests you could think of nothing showed up but acid reflux and inflamed gullet. I have had 3 children while having CVS it was very hard but the reward is well worth the suffering. I would like to share my knowledge of CVS and help people by answering there questions if I can. CVS affects you life in ways that other people cant begin to comprehend. I miss out on a lot of my childrens life which is hard but you have to do your best its all you can do. People sometimes say how do you do it, but you have to and you do (in a funny kind of way) get use to it and it gets easer to handle. You find ways of making yourself comfortable. There is hope having CVS for 16 years has been very hard but I am proof it can be done. With the support and love of my family I have come through the hard times. I know there is more to come, but I know Im lucky to have my loving family to get me through it, thats what keeps me going. Even when the doctors didnt believe I had anything wrong with me my family were always there for me.

If you have any questions you think I may be able to help with then please dont hesitate to ask me.

Forum: CVSA - Adult CVS Patient Forum

please explain the "red" card

AAL12781 — Thur, 15 May 2008 04:10:25 GMT

okay Im starting all of the paperwork and meeting with people at school to get my little boy in pre-k and I heard about the Red Card program, what is this??

Forum: CVSA - Main Forum

www.ratemds.com

francismize — Thur, 15 May 2008 02:33:09 GMT

We should all go here and specifically comment on how our doctors do with our cvs problems!

Forum: CVSA - Adult CVS Patient Forum

CO-Q-10 article link

typatricksmom — Thur, 15 May 2008 01:54:44 GMT

I pasted this info from a website about a parent who has mito disease and kids with mito disease. So, I was wondering has anyone who is using the CO-Q-10 been tested to see if it may be effective? Also, since it may be that CVS be related to Mitochondiral disease I wonder if it is something that should be taked by all CVS'ers just so it does not progress?? Any thoughts from the supplement users?

Co-Enzyme Q10
Coenzyme Q10 is a very hyped thing right now. You can get it in face cremes, power bars, and numerous vitamins. But for those with mitochondrial disease, it is considered as a generally accepted effective therapy, although it may not be effective for an individual patient. It is usually prescribed is a dose range of 5-15mg/kg/day, not to exceed 200mg daily. It is important that you get your CoQ10 from a trustworthy source, not from an ad in a magazine. Generally, chain providers (such as Walgreens, Osco, etc.) will have forms of CoQ10 available without additives. Check with your doctor before beginning this therapy, and tell them the full ingredient list on the label. There is now a blood test that can be done to see if Co-Q10 will even help a person. We had the test performed on two of our kids, and have since discontinued the use for our kids. Still, there are a couple of trustworthy providers in the links at the end of this page. Despite the tests that showed CoQ10 would not benefit our kids, my neurologist has recently informed me of new studies that say absolutely everyone diagnosed with mitochondrial disease should be on CoQ10 AND Carnitor to help slow the progress of their disease. He says this with great conviction, and while I don't wish to advertise my neurologist (he is the head of a very respected dept and exceptionally hard to get into, I told him I would not use his name) I believe him

Forum: Cyclic Vomiting Syndrome and Mitochondrial DNA

HELP It won't stop

Skyangel — Wed, 14 May 2008 23:43:50 GMT

Help......We have not been able to get our teenage sons CVS under control. His cycle has been practically daily for about 4 weeks. Here's the pattern we have experienced over the last two weeks, it seems totally crazy to me at times. Goes to bed feeling fine, happy, etc...... Sleeps through the night wakes up and his is nauseated. Spends 20 minutes or so in the bathroom wreching, turns pale as a ghost, weak etc.... you know how this is. Sometimes he will stay in bed and I can get him Zofran before had and he won't have to spend the time in the bathroom but he is either way extremely nauseated until about Noon.

Then he feels better takes shower and is able to go to school for a little over 2 hours of the school day. He is back to his normal self for the rest of the evening up to spending some time with a few friends, going fishing, hanging out etc...... He eats lunch and supper and has been having a snack every night. Then we wake up and start all over again................I have tried to give him nausea meds all through the night several times thinking that the cycle is not breaking but I think that it is stopping. Because it doesn't make any difference when I give him the nauseas med around the clock he still wakes up feeling the same way and we go through the same routine again.

I am feeling so drained from trying to figure this out. We have been to the Dr. and change his maintenance meds but we just don't seem to be making any progress. I know no one is a Dr. here, but I am just so frustrated, sad, and feeling totally helpless. Some of the family is starting to think that this isn't real and I am wearing tired of trying to explain that he really truly is miserable in the morning. Has anyone ever heard of this type of cycle?

Forum: CVSA - Main Forum

tired of explaining CVS

typatricksmom — Tue, 13 May 2008 20:31:52 GMT

Hi to all...
Just need to vent a little to all of my friends in cyber space!! I get so sick (no pun intended) of explaining CVS. I feel like if my explanation is too breif, it seems as though it is an occasional flu, but then if I say a little more, but maybe the wrong thing - or at least not taken the way I intended, it makes CVS seem as though it is psych related, then if I feel like I am thorough with an explanation I feel like I rambled on. We met with Ty's principal to request a 504 for next year just to be on the safe side since he was absent over 30 times this year, and describing this over and over again is wearing on me. I so want to find a way for it to all be over...Just as you all do as well. In hind sight I should have just printed the article describing CVS from this site and given it to the principal that would have been much more helpful then describing CVS regarding Ty personally.

Anyhow, just to add as well, my post earlier about hormones and migraines, I am absolutely never going to that Dr. in CA regarding hormones. They just give hormones without even doing blood tests, supposedly just because the Dr. can "tell" what a person needs. Crazy!! How many times have we all been surprised at test results regarding how CVS effects our bodies? I can think of three major medical issues that have been tested and the results are completely opposite what Doctor's have suspected - that is why we have pathologists in medicine, and tests. It is so sad that some Doctor's take advantage of families who are searching for answers. However, not to discount that bio-identical hormones may have their place in medicine, especially for women, but the way this specific doctor diagnosis with children is dangerous.

Forum: CVSA - Main Forum

VENTING!

francismize — Tue, 13 May 2008 02:57:27 GMT

I Do apologize for the following but i am so fed up with the entire medical establishment right now!
I wonder ,sometimes, which freaking happy meal box these moron doctors got there degree out of! I swear we must get all the "D-" medical students here in Cincinnati.You know, the ones that graduated but barely!
The doctor from the Cleveland clinic wanted my wife to SLOWLY step down her pain meds over the next few months and what does the idiot pain doctor do?He cuts her off completely in one day!Tells her she's been using the E.R.(another group of real winners!) as a "primary care physician" so she really don't need his help anymore!...Of course she has! You and your retarded office staff keep screwing up her meds , not filling them , canceling appointments to get refills and then getting mad at her when she ends up sick in the hospital for a week!DUH GENIUS!
Then you try calling other pain specialists and they tell you they don't like working with patients who have a history already with a different pain specialist!It's like their the freaking mafia selling crack and each "mob boss" has an agreement with the others not to come into their territory!I really wonder if any of these fools has ever even been in any "real pain".You know , besides chipping a putt on the golf course or loosing 10k from their 10million dollar 401k or I.R.A.!
Glorified , overpaid plumbers!That's all they are!At least a plumber gets his hands dirty from time to time and most will do their job or they will get fired!What would happen to me ( a cable guy) if i went around all day telling people their cable problems were all in their head and then on top of that wouldn't listen and was a complete douche bag to everyone i meet?...I would be fired!...And my jobs not life or death!It's just freaking T.V!
It's maddeningly ridiculous!For the tens of thousands (and for the insurance company the hundreds of thousands) of dollars we all spend on CRAPPY health care... it's infuriating to see the biggest investment in our lives going to these nincompoops!Let alone the fact that stress is an OBVIOUS trigger ,and to continuously see my wife coming home in tears from these quacks!...
If you don't like your job or "it's too hard" or too stressful ... QUIT!Save us all the time , money and trouble of dealing with you!You can make just as much money being a dick head bank manager or an a-hole stock trader but , at least in our time of greatest need we wont have to turn to your sorry ass!

Forum: CVSA - Adult CVS Patient Forum

Possible New Group

pixiegirlsc — Tue, 13 May 2008 02:52:22 GMT

A few of us in the Augusta, GA/ Aiken, SC area are throwing around the idea of meeting together. There are at least 5 people so far within 30minutes of each other. The Rock Hill, SC meetings are just too far away for me. I was just wondering what's the best way to go about starting a local support group. Thanks for any input.
Nicki

Forum: CVSA - Adult CVS Patient Forum

Doctor Tomorrow!!

pixiegirlsc — Tue, 13 May 2008 02:50:03 GMT

So I had to reschedule my appointment to see the new PCP, instead of last week it is tomorrow. Last week was just a rotten week, and the weekend worse than rotten. Not that this week has been much better but my mom is back in town and she can go with me to this new doctor.

You guys, I am scared! I know it's the right move to make, I'll have one doctor in a regular practice rather than being shuffled around to doctors in training like I have been in the other clinic. That does not change the fact that I feel like I will just be sick thinking about having to go in and explain this Yet Again to someone and just pray he understands.

Wish me luck! I'll let you know how it goes.

Nicki

Forum: CVSA - Adult CVS Patient Forum

Hope for those with Positive Excitement Trigger

momofkatelyn — Mon, 12 May 2008 23:04:32 GMT

Hi all. As many of you may know, one of Katelyn's biggest and worst triggers is positive excitement. For years we cancelled or came home early from vacations, spent holidays and birthdays in the hospital and missed other exciting events.

However, over the past 10 days- Katelyn has managed to get through her own First Communion and party, three other communion parties, a second full communion with her class at school (a very big deal in school), two softball games and the first level in the New York State Music Association competition for violin.

Lots of really big events for her, no vomitting. Four years ago- we never would have had such success. My point in telling you all this is to let you know that there is hope for a better tomorrow for those who are going through the dark days of excitement being a trigger.

-Melissa

Forum: CVSA - Main Forum

Repeatidive drinking and purging in attacks

sheryl65 — Mon, 12 May 2008 17:07:57 GMT

Hey all,, I have brought this subject to the fore-front before,, and I was just wondering about this bizarre behavior,, that I definitely exhibit... This past trip to the ER my HUBBY KEPT TELLING ME NOT TO DO THAT,, BUT i cant HELP IT...... I have this super-intense urge to do it... What I do is,,,,,,,, I drink then immediately stick my finger down my throat and heave and heave,, Then drink again , etc & etc.... and do it over and over for hours and hours ?????????????????????? WHOA~~~ Any comments,, please

Forum: CVSA - Adult CVS Patient Forum

Joint pain?

drewswife — Mon, 12 May 2008 15:22:40 GMT

Hello all. I am new to the message boards, but have been appreciating this site for many months now (thank you; thank you!). My husband is newly diagnosed but has been suffering for four years. The doctors are considering whether his CVS is mitochondrially related for a couple of reasons, and I am wondering if anyone who has mitchondrially-related CVS experiences joint pain. One of the things that has continued to stump us is my husband's knee pain, other joint aches, and fatigue. These symptoms began around the same time as the vomiting & nausea, and we've always wondered if they were related. Any thoughts?

Forum: Cyclic Vomiting Syndrome and Mitochondrial DNA

Support needed

drewswife — Mon, 12 May 2008 03:37:55 GMT

Hello to everyone. I want to thank all of you for your extremely informative and comforting posts. Like many of you, we feel incredibly validated to hear the stories that mirror our own. My 27-year-old husband (of almost 3 years) is being treated as having CVS. He has been sick for 4 years and has endured all of the frustrating testing that lead to repeated normal diagnoses. It has been very difficult, but recently we have felt the hope of a certain diagnosis. After consulting with a specialist in another state and contacting Dr. Fleisher, we are convinced that his terrible abdominal pain, vomiting episodes that occur every 2 weeks, and relentless nausea are indicative of CVS.

I have read your posts for hours on end, trying to educate myself so that I can be an advocate for my husband. Although I have benefited greatly from your wisdom, I am now also requesting your support. As you know, this illness (and the misunderstanding and lack of proper care) is so difficult. I admire my husband greatly and am awed by his resilience and strength, but there are days that I feel so helpless that it is paralyzing. I am reaching out, hoping that your support can help us be more proactive and find our way towards better management.

Forum: CVSA - Adult CVS Patient Forum

Going to see Dr Feldman tomorrow!

Frippledip — Sun, 11 May 2008 17:43:08 GMT

Hey guys, I don't think I've ever been so excited about going to the doctor! I've been suffering with CVS for 3 years, and I am sure I will be getting my diagnosis tomorrow!

I'm also planning to get pregnant soon, so whatever treatment plan he puts me on won't include drugs not good for a fetus. I know there are some anti-nausea drugs you can take when you're pregnant, but I've tried most of them and I think they're pretty weak. I'm going to have to do this as naturally as I can, so I am doing everything I can to reduce my stress level. I found this place online, a retreat that I want to go on, if I can get time off work, I think it will be really helpful. Here's the link:

http://nurturingnest.com/retreats.html

Anyway, back to my Dr appt, I'm going to ask if I can videotape or record the session, for educational purposes. I don't know if he'll say yes, and I'm kind of embarrassed to ask but i really want to do it.

Keep your fingers crossed for me, and I'll let you know how it goes!

Forum: CVSA - Adult CVS Patient Forum