Cyclical Vomiting Syndrome (CVS) is an uncommon, unexplained disorder of children and some adults, which is characterised by recurrent, prolonged episodes of severe nausea, vomiting and prostration, having no apparent cause. Vomiting occurs at frequent intervals (5-10 times per hour at peak) for hours to 10 days or more (1-4 days most commonly). The episodes tend to be similar to each other in symptoms and duration for each patient, and are self-limited. The patient is generally well between episodes.
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Simon is the eldest of 3 children. He has a brother, Mark, who is 19 and attending university, and a sister, Emma, who is 17 and doing her HSC. Simon began being sick at 3 years of age. When you have 5 isolated cases a year it is manageable. When the bouts run into each other, become more severe and unpredictable you become anxious and stressed. It is distressing to see your bright, happy son lose half his childhood to a mysterious undiagnosed disease. It is disheartening to visit doctors and specialists, to undergo numerous tests, to watch elimination diets and increasing drug doses fail – all in the hope of finding an accurate diagnosis and/or possible cure. It can be destructive to have hopes dashed when you thought you were "on to something", to feel alone and isolated, to have medical people question your child's emotional state and have your role as a parent questioned, to become angry with the sickness and yourself in not always coping. A days bush walk, a late evening, a school camp, a cold, or just plain nothing could send Simon and us into another cycle. It was like living with two individuals – one, a happy, bright, full of living, fun loving boy when well and the boy who was withdrawn, lying in pain for days, who despaired of ever being normal. Parents can go to great lengths to find a cure – in time, distance, expense, lost time and sleep – we were no exception. It took almost 18 years to find the answer. My sister, 1200 miles away, phoned to say she had read an article in a women's magazine and that it was important we read it too. It was an article about a little girl suffering from CVS. What a relief to finally know, to know there were other people "out there" who knew exactly what it was all about and that there were not only medical people involved in treating it but in working on research. At 23 Simon has been free from CVS for about 4 years. He holds down a job in the media, has just been married, leads a busy social life, is involved in sport and has a strong faith. He was married on May 2nd this year. The following are extracts from the speech his father gave at the wedding…….. "he gave us a great deal of joy, there was a lot of fun and laughter. Sickness played a BIG PART in Simon's childhood and overshadowed our lives but we learnt to make the most of the "good days". While he frequented a number of hospitals he still managed to go bush walking, camping, sat through a number of pantomimes and musicals, visited any number of animal farms and museums, earned pocket money from a paper round, participated in cricket, Boys Brigade, holidays and actually found time to go to school…." "In spite of his sickness and to a big extent because or it, Simon developed a BIG HEART and a BIG CAPACITY for life, family, friends, his faith and people generally. He has a compassionate, caring heart. It didn't stop him from pursuing his dreams – to be successful in his work, to have fun, to be involved in youth at church, to pursue dangerous sports such as rock climbing, abseiling, sky-diving and rugby and to see his cricket team win their division two years running……." "there have been many people over the years who have supported both Simon and us in a big way with their love, friendship and prayers – who have helped us get through the tough years…." "it is our prayer that the love, giftings, talents and abilities you each bring to this marriage will not only enrich your lives but those of your families, friends, workmates and all who come in contact with you. That you will experience much happiness, fun, health and prosperity and we look forward to seeing you enjoy many happy years together…." Jenny Hobbs Sydney, NSW. |
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Things are looking up! We have secured the child disability support allowance and as such can now afford to medicate Andie at home. Ondansetron is really working well for Andie. Although the last two episodes have been only 3 weeks apart we have been able to medicate her at home with an injection of Ondansetron at the onset of the episode and use oral Ondansetron for the saturation dose. This has reduced both episodes back to about 12 hours, a big difference to the 72 hours we were experiencing every 6 weeks. With the help of my sister (a nurse) and our local GP, Kathy has become quite an expert at giving injections. Better her than me! We have been able to buy the medication over the internet and although it still seems expensive, it is much cheaper than we were buying it before. The site can be found at http://www.pharmacydirect.com.au/~pharmacy. The Ondansetron 8 mg in 4 mls. costs us $39.90 and the 8mg tablets are $170 for 10. Peter and Kathy and Andie Yates. |
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Andie and her sister Bronte would love to receive e mail or letters from other kids with CVS or their brothers or sisters.
Andie is 6, Bronte is 4 |
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To all CVS parents, For those who have not met us before, we are the Yates family, and our daughter Andie suffers with CVS. We would like to share with you our news of finally getting the Child Disability Support Allowance. We gained this after filling out many forms and interviews. The result has definitely been worth it as now we can afford to medicate Andie at home. I recommend to any of you that have children with frequent episodes to apply. Remember, the allowance is given on the basis of how much time is spent per week performing extra care for your child with CVS. The time is averaged and includes time spent visiting doctors, hospitals, specialists contact with support groups, shopping for special foods etc. I am also told that it may take more than one request to get it. If you get knocked back the first time, don't give up, appeal the decision. You are entitled to it if you spend on average more than 4 hours per week extra time caring for your child. This involves adding up all the time spent caring for the child during an episode and up until the next episode, and then dividing the time by the number of weeks between the episodes. Sounds complicated!! The form explains pretty much what you have to do. If you need more information, e mail at: Yatesfamily@bigpond.com or talk to a social worker at your hospital. Peter and Kathy Yates. |
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The following are available from Mary: CVS brochures CVS Fact Sheets International Research Registry Questionnaires Medical Literature Reference list Reprints from Medical Literature Newspaper clippings Videotape: "Cyclic Vomiting Syndrome" narrated by Dr. David Fleisher |
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The following is a list of the e mail addresses of CVS families around Australia that I know of and have been given permission to publish. |
| Mary Tuder | Tim | maryt@micromine.com.au |
| Peter Yates | Andie | yatesfamily@bigpond.com |
| John Gillard | Sam | jgillard@fastlink.com.au |
| Christina Centenera | Emma | jocent@arcom.com.au |
| Tracey Denby | Paul | info@weddings-info.com.au |
| Peter Cranwell | John | cranwell@netspace.net.au |
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To subscribe to the active American CVS listserve, the address of which has recently changed:- Send an e mail to majordomo@jatek.net. Leave the subject line blank, and then in the body of the message write: Subscribe CVSA Then send the message. To post a message to the listserve group, you send to: cvsa@jatek.net. Your message will be put on the "bulletin board" for all the group to read. You must be subscribed to post or receive mail which will automatically appear in your mail box every time someone from the group writes. They are averaging 5 –10 messages per day at the moment, but there are large fluctuations depending on the topics under discussion. |
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I have been corresponding with a lovely lady in America called Joyce Leeper. She has a sixteen year old son, Jeremy, with CVS, and she is a whizz on the computer and internet and web page construction. I have seen a photo of Joyce and her family on her web page and I would love to meet her. Joyce and another CVS mum Alice Perez have offered to make a web page for any CVS child or family who would be interested. They would like to see a big ring of interconnected pages as a way of spreading the word about our children, comparing stories and bringing families closer together. So far they have pages for their own families and several others which I have looked at. They are all wonderfully different, with Joyce and Alice working closely with the family to create very individual pages. As Joyce says…"all we ask is for you to tell us your story in your own words. You can give as much information as you feel comfortable with. You can leave off your location or last name if you wish. You can include what ever you like – your child's story, symptoms, medication trials, a photo, e mail address, guest book etc etc. Every site will be tailored to individual tastes in colour, background, font style, even music. If you would like something special, all you have to do is ask. If it is possible we will try to do it for you." You can read Jeremy's story at http://geocities.datacellar.net/Heartland/Hills/4975/cvs_home.html. Alice's daughter, Brittany is at http://geocities.datacellar.net/Heartland/9251/CVSA.html. If you don't have access to an internet browser you can e mail Joyce at jel@millcomm.com. This offer is free and the "girls" are very keen to help. E mail Joyce at the above address. I intend to have a web page made for the Australian Association and also one for our family. I think it a wonderfully generous offer to CVS families and thank Joyce and Alice very, very much. |
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There is a web page for the American CVS association. This contains a lot of information about CVS, resources, reference list and links to other sites. You can access it at http://www.beaker.iupui.edu/cvsa/. |
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We all have to deal with our children's vomiting attacks. How we do so and how often we have to do so varies in all cases. We know that, at the moment, there is no cause or cure for this syndrome. It is something that happens and we all, as individual families, want to be able to deal with it and cope with it. In our case, and Andrew's, he has had this problem for the full 7 years of his life and it occurs around every 14 weeks, give and take. Admittedly, things have improved because it used to be every 6 weeks. Unfortunately for Andrew it is more intense and lasts longer than the usual 12 hours. We have tried everything from diet changes, drugs, hospitalisation, chiropractor and everything else imaginable. The cause cannot be determined but we can make the attack more bearable. To cope with the vomiting attack, we have decided to keep Andrew at home (not hospital) and be with him constantly throughout the night, when his attacks occur. We keep up his fluid intake by insisting he drinks water between each vomit, even though we know he will bring it up shortly after. We feel that it is much better to bring up water rather than stomach acids or dry retch. Andrew is happy mentally to know that either his mum or his dad is right by his side every minute. Emotionally he is stronger in this familiar home environment as compared to the uncomfortable foreign environment of hospital. Hospital is probably the best place physically for him and the nursing staff do try to help as best they can. Unfortunately Andrew is not the only sick child in there and cannot be given 100% attention and surveillance. Because of this fact we know that he is better off to be emotionally strong whereas he can never be physically strong during an attack, either at hospital or at home. Andrew needs reassurance by his parents, therefore we have to be strong and cope with this ailment, in order to give him that reassurance. As parents, we have to help Andrew through each individual attack by being with him and assisting him with holding the bucket, keeping him composed, cool and comfortable. It is pleasing for us to see his tired, straining eyes look up at us and the following smile given as we wipe away the vomit from his mouth. An otherwise unpleasant task is made rewarding by the brave, reluctant smile given to us by Andrew under this painful experience. When the attack is over, we let Andrew have his well deserved rest and give him a nice quiet, dark room to have uninterrupted sleep. When Andrew awakens and recovers he is a strong, energetic, curious little boy. He is aware he will have another attack but he is able to cope with this knowledge as he knows we will always be there by his side. He is further strengthened by the knowledge that he is not a lone sufferer of this syndrome. He has seen the pictures of other CVS children who also suffer the same ordeals. This comforts him to know that other children, just like him, are also enduring the same experience. Until the next Attack!….. John and Michelle Moylan. |
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In the above letter from Michelle, she mentions the photos of CVS children. Several years ago we compiled a photo montage of our little (and not so little) CVS stars. Young Andrew obviously gets great comfort from looking at all the others like himself. It is time to make another one – bigger and better. Everyone must have grown up so much by now that we need to have a new photo of the gang. The last one looked really great. So, send in your STAR photo as soon as possible and we will try to get the collection printed in time for Christmas!! Your child will not want to be left out. Do not miss out on being in the gang photograph Your voluntary $10 annual sub. is now due. Do remember that all donations over $2 are tax deductible because we are a Public Benevolent Institution. Why not send your cheque, payable to Australian CVS Association along with your Star photo. |
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Nancy and I have two children, a daughter 17 and a son 15. We are all your typical normal sort of people except that John suffers from CVS. His story is as follows: Born 22 February 1983 and weighing in at 11lb 8oz!! No great dramas with medical condition until 24 March 1994 when he required admission to hospital as he had been vomiting for a long time and had started internal bleeding as well as dehydration. He has had 12 more episodes since then, in all cases the reason for admission to hospital was due to internal bleeding from a Malory-Weiss tear caused by the frequent vomiting. He has always needed treatment to prevent dehydration. We have always been happy with the attention given to John by all the medical profession. We do not have private health cover so he has always been admitted to a public hospital. At first it was a very traumatic thing for all concerned. To see your young son so sick, bleeding internally, the body withering before your eyes, was bad news. John obviously found it very hard to cope as well and we had some tough times to deal with. Eventually, the doctors diagnosed it as CVS after the 3rd or 4 th event. However they were honest with us in saying that not much was known about it but that the chances were that John would grow out of it in his teens. We were fortunate that a student doctor took an interest in John for one of her projects and she gave us some reading matter that she had found in a library search. This helped us put it into better context. The first few times were associated with bad headaches, possibly migraines. We were referred to specialists to treat this condition, but his symptoms did not require continual medication. In fact, even now, he does not require any medication between events. After the first few times, the cause of each event was much harder to determine. In hindsight, we think that probably a stressor of some sort has been present, e.g. a school test, playing in the footy grand final etc., but nothing that you or I would consider extreme. The initial treatment was with IV fluids, Maxalon, Stemetil, Ranitidine and Mylanta. Later on they changed to IV fluids, Maxalon, Ranitidine and Phenergan. Currently we are using IV fluids, Maxalon, Ranitidine and Promethazine. The sedation from the Promethazine is what we think has helped most in the whole process. Whereas John used to vomit every 10 –15 minutes for hours on end, with the sedation it is less frequent and appears to reduce the stress on the body which allows a faster healing process to take place when the CV has finally finished. It is easier on all of us!! We rather hope John is growing out of it!! Peter and Nancy Cranwell. |
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In early 1995, the Cyclic Vomiting Syndrome Association of USA/Canada (CVSA) developed a questionnaire to be completed by all CVS patients who came into contact with the CVSA. All persons who had completed the questionnaire as of July 1997 (n=250) were asked to identify an individual of the same gender, race and age (+/- one year) who lived within one mile of their home to complete the same block of questions on demographics, patient history, family history and personality characteristics contained in the original questionnaire. The family history section of the questionnaire included specific questions on the prevalence of recurrent (non-migraine) and migraine headaches in first, second and third degree relatives. As of March 1998, 112 control questionnaires have been returned (45%). Upon verifying that the control individual matched the patient on the specified characteristics, the corresponding case data (n=112) was added for the control analysis. Twenty one of the 112 patients reported migraine headaches (18.8%), compared with 7 of the 112 controls (6.3%), a significant difference (p less than 0.01). Moreover, the number of first degree relatives suffering from migraines was significantly higher among those with CVS (39.9% vs 26.98% among controls, p less than 0.05) as was the percent of second degree relatives reported as having a history of migraines (48.2% vs 25.0%, p less than 0.001). This study confirms previous suggestions that migraine, usually a genetic disease, occurs more frequently in relatives of affected individuals with CVS than those without CVS. Together with the frequent presence of headaches or typical migraine in patients with CVS, and progression to classical migraine, affirms the hypothesis that CVS is a migraine equivalent. This is the abstract of a poster presented at the 2nd International Scientific Symposium held in Milwaukee, USA, April, 1998. |
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Our son, Thomas, has been suffering from cyclical vomiting for 2 ½ years. Recently we tried the herb Valerian for his sleep problems. In desperation we also tried it when he was getting a CV attack. The attack was successfully aborted. Nothing else we have tried has been so successful. We have been using Valerian now for some time and are very impressed with how well it has been working. We have managed to stop attacks before they happen on five occasions. Also, we are giving it to him before an exciting event and this is also stopping attacks from happening. The Valerian we have been using is Valerian Officinalis, but I believe there is a stronger, Mexican variety available. We have tried Herb Valley Valerian 500 mg tablets and Bioglan Valerian 1000 mg tablets. We give Thomas ½ a 500 mg tablet before bed every night with food, to help with his sleeping problems. Before an exciting event we give him ½ a 500 mg tablet about half an hour beforehand. When he is getting a CV attack we give him ½ - 1 500 mg tablet and encourage him to rest or sleep. I hope this is of some interest and could possibly help some other sufferers. Natalie Storey. (I believe Thomas is 7 years old, Mary) |
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It is important that you have all filled in and returned both the original 12 page survey and the newer questionnaire that a friend of yours was asked to complete. If you have not seen these papers, please contact Mary, 08 9389 1287, as soon as possible. Research is waiting for all the replies to come in. Let us all help our gallant scientists to find the answers that will help solve the puzzle of CVS. |
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Dear Lord, I have a chronically ill child. You know, we have been fighting this thing for a lot of years and for some reason that thought hasn't occurred to me 'til tonight….I've cared for him and sat up with him at night and nursed him. I've wished time and time again that I could only take his place. I've taken him to doctors, Father, and I've bought him meds…but it seems like things just get worse and I can't even picture how he's going to make it through this thing we call "life". How can he have a normal life? How can he do the things the rest of us all take for granted, like finish high school, go to college, hold a job? Sometimes it all seems to come down on me Lord, and I don't know what I am going to do or who I am going to talk to, or how he is going to have any kind of life at all. And I've prayed for him, Lord, and for all of us, you know I have. But through all these years I've thought about "what I could do for him" and "how I can get him through this" and all of a sudden, tonight, I thought "I can't, but You can." I love him Father, and as much as I love him, I know You love him more. That's hard for a mother to comprehend….how anyone could love her child more than she does. But if I truly believe that You are my heavenly Father, then I know that You are his Father too, and that you love him beyond all belief or human comprehension….and because You love him, You won't let him down. I can't say I'll stop worrying, Father, You know I won't. You didn't make parents that way. You are the One who gave us the ability to love and cherish and care for our children. But in the same way that we love and cherish and care for them, I know You love and cherish and care for all of us. Please take care of us, Father, my child and me. With all that's in me I ask You to lift this burden from us. No, I'm not saying 'cure him', I know things don't work like that. I'm asking You to give us, my son and I, the strength to go on when things look impossible. Give us the courage to deal with this and the sure knowledge that things will turn out in the end. Whatever kind of life he has, Lord, make it a successful one in Your eyes. And Lord, I'll try not to forget, when I wonder who I can talk to, that I can talk to You. Because You love me and You love my son. Amen. Joyce Leeper, USA (gratefully reproduced with permission from Joyce) |
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In a previous newsletter there was an article about Tai Chi. This time we have another piece in the same vein, about relaxation. Nancy, who gave us this, is happy to make a tape for people. If you send a blank tape to her at the address at the bottom, she will return it as soon as possible. A very generous offer, thanks Nancy. Relaxation can work wonders for some. I personally use it for migraines. Here is a script. Use it as a guide. If there is some place that your child likes to go or some thing that your child likes, use it. There are no wrong things or topics. Have the child /adult sit in lie an a comfortable position. Be sure that the legs are not crossed. (# = pause) In a calm, quiet voice, say: Take a deep breath in, #, and out. That's right. Focus your attention on the top of your head. Feel the tension and stress flowing down your head, it is slowly being replaced by a wonderful, warm feeling of relaxation. Notice the muscles in your forehead begin to relax, the muscles around the eyes, nose, cheeks and jaw. Feel the stress leaving your face and being replaced by a soothing feeling of relaxation. Now the muscles around your mouth and neck become relaxed. All the stress is leaving your neck and flowing down,#down#down. The muscles in your neck become relaxed and calm. Feel the tension leaving your shoulders, moving down your arms. If there are any areas of tension in your shoulder muscles, you will feel a healing warmth helping to ease the tension and allow the relaxation to come in. The sense of relaxation comes to your upper arm, as the stress and tension flow down toward your fingers. Your elbow is feeling relaxed and the tension is moving down your forearm, to your wrist and hands. The end of your finger tips open and you can feel the stress and tension flow out of your fingers. It is a wonderful feeling, letting all the tension go. Focus on your upper back and chest. Notice the tension slowly moving down, and feel the relaxation replacing the tension. Enjoy the relaxation and calm as it moves down your body. Feel the stress leaving your lower back and stomach, the relaxation moving down and replacing the tension. Now the stress is leaving your hips and the muscles of your hips become relaxed. That right. The tension is leaving your thighs, you can feel it moving down and being replaced by the calm and peaceful relaxation. The tension moves down to your knees, calves and ankles. Enjoy the relaxed feelings in your legs, the peace and calm. The ends of your toes open, to allow all the stress and tension to leave your body. All the tension leaves your body, simply flowing out and being replaced by a calm and peaceful feeling. Take a deep breathe in # and out. I am going to count from 10 to 1, with each number you will become more and more relaxed. Feeling better and better. 10 # 9 # 8 # 7 # 6 # 5 # 4 # 3 # 2 # 1 You find yourself in a special place, this place is just for you. This can be a place you have been before or a place you create. This place can be anywhere you want. As you enjoy being in this place, take a deep breath and smell the smells of this place. Perhaps you smell the fresh air outside, flowers. Listen to the sounds of this place, hearing these sounds is calming and peaceful. Enjoy these sounds. Look at the sights of this place, see the colours and textures. That's right, enjoy your time here, for this is your special place, made just for you and by you. (for CVS) Go into your body and find your stomach. That's right. Let me know when you have found your stomach. # Good, now find the wire that connects your stomach to your brain, it is right there. Let me know when you find it # good. Follow the wire to your brain, good, that's right. When you get to your brain you will find a dial or lever or perhaps a computer terminal. The setting may be at CVS, you can turn the dial, lever or terminal to healthy. That's right, move the switch, or dial or use the keyboard to tell your stomach that it should relax and begin to feel better. That's right, good job. Excellent. It is now time to leave this place. Look around and remember this place. You can come back any time you wish by simply taking a deep breath and thinking about this wonderful place that is your special place. I am going to count from 1 to 5. With each number you will feel more and more aware. When I say 5 you will open your eyes and feel rested and refreshed. 1,2, feeling more and more aware, hearing the sounds around you, 3,4, feeling more and more aware and remembering where you are, 5, feeling awake and rested. End. It sounds better when spoken. Change what you want to meet the needs of the child. Pacing can be tricky, but if you watch the person you can tell when the body parts are relaxing, and follow their lead. Ask the person afterwards if there were any parts they would like changed. If the person is going to sleep and you do not want to wake them, skip the last 1 to 5 counting. Also, if you count to 5 and the person is still relaxing, do not worry, just tell them that they can open their eyes whenever they please. I know from experience that after being completely relaxed, I sometimes want to stay a little longer. Nancy Hertz Please E mail Nancy for her address if you'd like to send her a blank tape and have a relaxation tape made: HertzTrek@aol.com |
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There is definite progress in establishing several studies and broader protocols for genetic and metabolic testing for CVS, based on the new developments at the symposium. I've learned some patience about research pace, but still have trouble waiting. My understanding is that the current technology for studying the genes that are involved in mitochondrial disorders (genetic disorders of the cell which can cause a wide variety of symptoms including cyclic vomiting, migraine, mental retardation, etc) are being improved moment by moment. Dr. Richard Boles (genetic symposium faculty) from the University of California Los Angeles will have some better technology developed by September to further enhance any studies that he does with CVS patients. He has drafted a proposal – yet to be finalised- for testing a select number of CVS patients who meet a list of criteria. To move sooner would be a mistake because of the value of having the technology in place. Dr. Piero Rinaldo of Yale University School of Medicine has also done a first draft proposal for studying a select group of CVS patients for particular fatty acid oxidation disorders. To have these draft proposals as far along as they already are indicated scientific excitement amongst our current and new medical advisory board. Other research proposals talked about at the symposium include medication trial with propanolol, a behaviour study of CVS parents (NO red flags intended!!), a population study, ongoing analysis of the research registry data. I'm sure there were others. This has been like an explosion of information and we are still trying to get the pieces sorted out to report on. Kathleen Adams, USA. |
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News on the International front has been dominated for the last few months by the International Symposium which was held in Milwaukee, USA in April. There were participants from all over the globe – from Australia, Japan, Canada, America, Britain, Lithuania and Estonia. Fiona (my 23 year old CVS daughter) and I attended this most productive conference. I find I now have over one hundred doctors on my mailing list. These are physicians not served by the national CVSA groups in Australia, USA/Canada, and the UK. International interest spans all five continents, with requests for information from about 36 nations. We are now in touch with families in 13 different countries. As well as the formal groups in Australia, USA/Canada and the UK, there are informal groups in New Zealand, Ireland and Finland. We know of individual families in Mexico, Japan, India, Germany, Switzerland and South Africa. Ruth Naude and her son, Timothy, from outside Durban, South Africa are the latest to join our International group. Ruth, a nurse, got in touch with us in October last year. Timothy, aged 11, has severe CVS and in addition has Down's Syndrome. Barbara Higgins of the Down's Syndrome Support Group, is on the e mail and helps us keep in touch with Ruth. There have been radical changes in CVSA-UK. September 1997 saw the resignation of Wendy Adams-Ryall. Wendy was a founding member of CVSA. It was largely due to her enormous energy, vitality and enthusiasm that the first International scientific symposium took place in London in July 1994. The treasurer of the group since it's inception, Linda Grindall, left early this year. Nicola Kipping, a physiotherapist from the south of England, who has a 5 year old CVS daughter, has taken Wendy's place as the new chairman. She is very enthusiastic and is planning a large national meeting in November and hopes to form a new committee to revitalize the group. Wishing you all some healthy months ahead. Gill McRonald, UK |
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1882 "These cases seem to be all of the same kind, their characteristic being fits of vomiting, which recur after intervals of uncertain length. The intervals themselves are free from signs of disease. The vomiting continues for a few hours or a few days. When it has been severe, the patients are left much exhausted……Sometimes the pain is so severe as to throw the vomiting into the shade…….The conditions under which the vomiting occurs are not constant. They are:- 1. Exhaustion after travelling, or excitement of any kind, 2. Indigestible food, by no means a common condition, 3. Exposure to cold. But, in some cases, the closest observation fails to discover anything which can be called a cause." Samuel Gee. "On fitful or recurrent vomiting" Saint Bartholomew's Hospital Reports, 18 (1) 1882 1934 "The mother of the patient, on account of anxiety and loss of sleep, presents a pathetic figure as the curtain drops on the trying drama. The attending physician is subjected to the embarrassment of his conscious futility in answering the parent's question as to what measures may be taken to prevent the next occurrence." Philip Smith "Cyclic Vomiting and Migraine in children" Virginia Medical Monthly, January 1934. 1935 The suddenness and rapidity of recovery after almost all attacks seemed the most dramatic features of the syndrome. To visit and to offer unavailing treatment, for two, or even three, days, to a child who is vomiting almost incessantly and who appears to be steadily approaching an almost moribund state, to return from the evening visit full of pessimism and anxiety and to find the same child smiling and apparently well the next morning seems to savour of the miraculous. It is my impression that this dramatic and almost miraculous recovery rarely bears any direct relation to the type of treatment instituted, but is rather the result either of an abrupt cessation of an unknown underlying basic disturbance or the sudden functioning of some remedial mechanism." Lorimer Dods "Observations on certain aspects of the Cyclical Vomiting Syndrome" The Medical Journal of Australia, August 24, 1935. |
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The second International Scientific Symposium on Cyclic Vomiting Syndrome (CVS) was held in Milwaukee, Wisconsin, on April 17th and 18th 1998. This conference brought together clinicians and scientists interested in the problem of vomiting in order to enhance understanding of the knowledge of the possible causes and potential treatments of CVS. One of the major conclusions of the meeting was the recognition of the close relationship between CVS and migraine. Dr. David Symon, of the United Kingdom, reported his experience with a large group of children with migraine and a much smaller group with CVS, some of whom have evolved to classic migraine. One of the important differences between his groups is the age of onset of CVS, suggesting that this may be something that CVS may be specifically related to particular of brain development. Work from Perth was presented confirming the relationship of migraine to CVS through demonstration of the much higher rate of occurrence of migraine in family members of patients with CVS compared with healthy children in the community. Dr. Pierro Rinaldo and Richard Boles, both from the United States, presented information about newly recognised genetic disorders which may appear very similar to CVS, and discussed ways in which these may be recognised. Professor Louis Ptacek talked in general about conditions which may be suddenly switched on after nutritional or environmental changes and discussed how his research group had recognised that some of these conditions can be caused by abnormalities of the "gates" that allow salts such as calcium, sodium or potassium into and out of cells. It is possible that these sorts of disorders may be related to migraine, some forms of epilepsy and possibly to CVS, although this is quite unproven. There is increased understanding of the way in which anxiety and stress may work to produce cyclic vomiting. Quite extensive work in animals and limited studies in humans have shown that stress causes release of corticotrophic releasing hormone and other brain chemicals which in turn stimulate the vomiting centre of the brain. The types of drugs available for the treatment of cyclic vomiting are likely to change over the next five years. A new class of drugs called tachykinin receptor antagonists appear to be extremely potent in preventing vomiting in animals. Studies have already shown that these drugs are capable of blocking vomiting that is initiated by a whole range of stimulants, including cancer chemotherapy, radiotherapy and motion. The companies involved in the development of these drugs are about to initiate clinical trials and it is anticipated that these drugs will be ready for marketing in four to five years. In the meantime a number of issues which may be important in general treatment were emphasised. The first of these is the importance of recognising that stress may be an important precipitant of vomiting for some children, and the role that psychological assessment and treatment may have in helping children and families deal with this. "Stress" may be positive, that is pleasant, as well as negative or unpleasant. During treatment of an acute episode of vomiting it is emphasised that it is important not to give too much fluid as this can, in fact, stimulate some of the chemicals which will perpetuate vomiting. It is important to ensure a good supply of sugar during this process. One of the interesting aspects of treatment that has emerged is the importance of placebo effect in treating migraine and cyclic vomiting. It is recognised that in migraine up to 40% of patients will respond to a placebo, reminding us of the importance of the mind, stress and anticipation in producing changes in how the body works. A clinical research trial in the use of Ondansetron (which has been used effectively in Perth) has not made much progress because many patients have got better and stopped having attacks once the Ondansetron has been used a few times and, it appears, that the patients become more confident that they can be helped. The 2nd International Scientific Symposium on CVS highlighted the important advances made in understanding the brain and bowel mechanisms involved in vomiting and in particular, the effect that stress can have in producing vomiting. The conference emphasised that in many, though perhaps not all children with cyclic vomiting, the underlying problem is of migraine. A few individuals will have very rare biochemical disorders which need careful assessment in order for them to be recognised. While there are no immediate breakthroughs in treatment, there are exciting prospects of new agents which appear to be very effective and safe in the treatment of vomiting. David Forbes Paediatric Gastroenterologist Princess Margaret Hospital for Children Perth, Western Australia. |
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Dr. Louis Ptacek is an Associate Professor in the Dept. of Neurology, Human Genetics Associate Investigator, Howard Hughes Medical Institute, Eccles Institute of Human Genetics at the University of Utah in Salt Lake City, Utah, USA. In the previous newsletter Dr. Ptacek asked CVS families to respond to him if we met certain criteria. If the CVS patient answers "yes" to any of the following questions, please contact him: Dr. Louis Ptacek, 2260 Eccles Institute of Human Genetics, Bldg. 533, University of Utah, Salt Lake City, UT 84112, USA, or e mail: ptacek@genetics,utah.edu 1) Do you have a family history of CVS (ie more than one family member affected)? 2) Do you or your family member have CVS and developmental delay? 3) Do you or your family member have CVS and developmental malformations? 4) Have you ever had an abnormal karyotype (chromosome test)? 5) Do you or your family member have CVS and agenesis of the corpus collosum? Here is his update: I have compiled a large number of responses from individuals with CVS and other associated findings. My initial interest grew from the observation by one of my colleagues that two CVS patients had translocations on Chromosome 7. Our hypothesis was that perhaps these translocations interrupted a gene that resulted in CVS in those patients. Similarly, a number of people have mentioned that their children have CVS and agenesis of the corpus collosum. For these reasons I solicited input from patients and families regarding karyotypic data, MRI data and other associated findings in CVS. Since that time, we have obtained karyotypic testing on the two Chromosome 7 translocation patients. With the newer and higher resolution technologies that are currently available, we demonstrated that the break points for these two translocations were in somewhat different areas of Chromosome 7; therefore, making it very unlikely that they disrupted the same gene. A number of patients and families have responded in the positive regarding other associated findings in their CVS family members, but nothing currently is showing a strong association. Collecting such data and keeping track of such observations is important, but at this point has not shed any new light on the pathophysiologic basis of Cyclic Vomiting Syndrome. Louis Ptacek. |
The Australian CVS Asociation has close links with similar organisations in other countries. The Australian headquarters is in Perth, Western Australia, with branches in Victoria and New South Wales.
The Australian CVS Association is a registered Public Benevolent Institution. |
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The Medical Advisor to the Australian CVS Association is: David Forbes, MB BS FRACP UWA Dept of Paediatrics, Princess Margaret Hospital, GPO Box D184, WA 6001 |
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Please note that any drugs or treatments mentioned in CVS newsletters are not necessarily recommended or formally guaranteed by our medical advisors.
They are merely suggestions from readers. The Association accepts no responsibility for actions arising from these suggestions. Any opinions expressed in the newsletter are not necessarily those of the editor. |
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