My daughter Rebecca received a partial fundoplacation at the age of two due to reflux symptoms. Soon after she began 10 -12 day vomitting episodes with intense pain about two to three times per year. Surgically everything was cleared and it was diagnosed as gastritis. Two years later CVS was suggested. Subsequently we visited Dr. Li (then in chicago). At that point, all routine diagnostics had been exhausted (endoscopy, ultrasound of all organs in area, brain mri, ct of abdomen, ct of brain, and allmost all blood test.) He suggested possible CVS but the duration was very lengthy and reccomended mitochondrial testing.
Mitochondrial disease, mild stage 1 and stage 3 oxidative phosphorylization were discovered and she was put on Co Q 10 and Carnitore. This doctor said that her mitochondrial disease could be a trigger but not the cuase for lengthy vomitting and pain. He said her main symptom of the mitochondrial disease would be fatigue. After the Co q 10 was staretd and all other meds stopped, we went a year and a half episode free.
This July she began vomitting and was hospitalized. She continued vomitting with intense pain for three months. She was transported to Milwaukee for further testing of gastric emptying and motility test. (It is important to note that her mitochondrial doctor still does not believe that this prolonged vomitting and pain is caused by her genetic disorders). Both test in Milwaukee showed relatively nothing but her local GI continues to believe that at times her stomach stops working. It was suggested that she had developed visceral hypersensitivity and she was put on ellaville and neurontin. They have not helped even though the dosages were given at mega levels. We have stopped the neurontin but still give 50 mg of ellaville. Frankly, we are discussing with her doctors of stopping this as well but they want to try another increase.
Regardless, we have now inserted a j/g tube and feed her at home. Sh will go up to a week or so and feel fine with normal eating but most of the time has terrible pain and vomitting of bile.
Severe anxiety is now present and we have lost all hope. Not only are we now dealing with medical issues that no one can answer but we are also watching anxiety and fear take over her life. It appears that no one can help our daughter. My daughet has been in intense pain and vomitting for almost nine months now with very few good days. Truthfully, I feel as though we are loosing her. I no longer know what to do and wonder if dying wouldn't be better for this poor child.
Cyclic vomiting syndrome can be very difficult to treat.
Many of the tests you have had would rule out other causes of refractory vomiting.
It can be associated with migraine headaches, so antimigraine treatment should be considered if there is a family history of migraines. Amitriptyline has also bee studied on small trials.
Otherwise, there is very little consensus data supporting definitive treatment.
You may want to contact the CVS Association for more support:
Cyclic Vomiting Syndrome Association (CVSA-USA/Canada)
Debra Waites, Administrator
3585 Cedar Hill Rd, NW
Canal Winchester, OH 43110
Web site: www.cvsaonline.org
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
I am really sorry to hear about your daughter. I know how agonizing it is to watch your child be so very ill. My 12 yr old daughter has a very rare systemic autoimmune disease, as part of this overall systemic disaease she has severe disease in her GI. It is much more common to see just the GI portion of this disease, which is called eosinophilic gastroenteritis. It is a inflammatory disease of the GI tract, that can affect any or all of the entire GI tract. My daughter has had many syptoms just as yours. She too has been admitted twice in the past year for 3 weeks at a time unable to eat or drink even the smallest thing without vomiting, and the pain is horrible. Her drs also told us her stomach had just quit working. Then after about 4-6 weeks both times she recovered and although was still in pain, she was able to get off TPN and IV fluids. She lives for the most part every day in at least moderate pain, many times she is in agony with this pain. She also takes high dose Elavil and Neurontin, and I do think they have helped some. She is on 75 mg elavil and 800mg neurontin 3xdaily, these are huge amounts for an adult, and we have also had her on fentanyl narcotic pain patches to try and help the pain.
I wanted to tell you that on the parent support group for kids with this stomach disease, several other parents have mentioned their kids also have mitochondrial issues, and some have said their drs had thought it was cyclic vomiting syndrome. Many including my daughter also had nissons, thinking it was severe reflux, and that actually made things worse with the pain because it builds up with no place to go. Look up this disease on google, and especially read the info at www.apfed.org, which is the american partnership for eosinophilic disorders. ALso just wanted to throw out that there is also a condition called gastroparesis, that is just what it sounds like, the gut is paralyzed to a degree, and will not work. You may want to look into that to. ALso just wanted you to know that although your daughter has had a good workup, we have learned what one dr sees as normal, another can see as a severe disease. So I would consider seeing a major med center for evaluation. We have gone to the best in the country. actually not too far from you in CIncinnati, the GI team there is world reknown, and I think could help you get on the right course. They see many biospies that are previously read as normal, that are full of eosinophils, they were just stained wrong. Look into your daughter's blood results and see if her eosinophils were ever high. They are on a cbc with differential(where the white blood count is listed, and listed as eos in percentages and as a absoulute number. I hope you can put it all together and get her help. If I can help at all please let me know.
Thank you for the information. We have begun retesting but nothing new is showing up. It is interesting to note that after we read your post her very next lab test yielded a very high SED rate. We have retested and are awaiting the results. In the meantime, we are scheduling another visit to Wisconsin to visit the GI team there.
By the way, have you ever tried chlorpromaz and what were the results (beside sleep)At any rate, we would love to touch base with you. If you like you can contact us at ***@****
I am so very sorry to hear about your daughter. I am a 41yr old mother of 5 - all grown. In 1994 I needed a total emergency hysterectomy when they opened me up the abdominal adhesions had choked off my bowel so I had an emergency bowel resection. Was okay until 2001- started severe abdominal pain constant nausea no b/m for several days and vomiting for serveral days or alternate in days of vomit. I have gained 40lbs since 2001 - I still have constant nausea - back to black vomiting - severe lower abdominal pain - had surgery again in 2002 to remove gallbladder and a couple of months later to lysis some adhesions. 2003 - I became ill with c-diff and sepsi(staff infection) due to the appendical stump of an appendix I had removed in 1988? prolapsing into my cecum(part of my colon) this was removed and another bowel resection. I too have had so many test I can't count. So many hospitalizations to be NPO and to have an NG tube placed in my nose to release the bowels into a canister. I have had compassionate doctors in the hospital that will treat my pain while hospitalized anywhere from 1-2wks but until I was put on Soc Sec Disability for this problem - I got medicare 11/05 - could not seek care at private doctors. Since I have seen a few that act like I am indeed crazy. I had one treat me with Elavil - which made me not know who I was - now I suffer from depression - after 5yrs of being so sick - drs look at me in disbelief when I discuss my eating habits and the amount I vomit due to my severe weight gain. Ironic? Anyway now pain increase in upper rt quad - also persistent in lower rt quad - increase in nausea - vomiting black 2-3 times in a day every other day or every three days. Seeing GI again tomorrow. Don't think it will ever end. The pain and nausea are unbearable. Dr's think that if they treat your pain for a week or so it should somehow magically disappear - I had a surgeon last year insist that I was only being admitted to receive narcotics and removed my ng tube and took away all pain meds. Told me that no one ever found anything significantly wrong with me and that I was just seeking meds. Kind of hard to fake pain with a distended abdomen and obstructed bowels that require the use of NG tube. I do not drink, I do not use drugs. After that incident I fear having to seeking medical attention and being accused of being a drug addict. I pray for you - keep being insistent that they do more. If you have insurance keep seeking out doctors. I pray that they will take time to help you - Please email me if ever you need to vent - Sincerely - Susan W (***@****)
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