Posted By Posting
Nov 15, 2004
Nan
Fundo recommended? Make sure your child doens't have Cyclical Vomiting Syndrome (CVS)
Please make sure you child does not have Cyclical Vomiting Syndrome (CVS) before you opt for the fundo surgery. Here is our story. I have an 11 year old with a confirmed case of GERD (by Ph Probe) but all other GI tests negative (Upper GI with Small Bowl follow through, motility studies (solid and liquid), abdominal ultrasound and a hydascann). She was hospitalized numerous times with vomiting episodes. The docs (Peds GI and Ped surgeon) recommended a fundo. The second opinion Peds GI doc recommended a monometry study (to test the stomach motility) be performed first. This is a very expensive test (lasting 8 hours), but it is worth its weight it GOLD. I had to jump through 100 hoops before the insurance company approved the test. The test concluded that my daughter■s stomach motility is normal and the fundo would have caused more harm than good. We declined the fundo surgery. My daughter was subsequently diagnosed with Cyclical Vomiting Syndrome (CVS). A fundo does not cure CVS and can be undone by the intense vomiting and retching. I know of another boy who had the fundo surgery (no monometry study performed) and was subsequently diagnosed with CVS. He ended up with an esophageal hernia when he had a post Fundo CVS episode. I am not against all fundos, as sometimes they are successful. However, please make sure that it is performed for a specific reason and not because ■nothing else is working.■ Good luck!
Nov 15, 2004
Anonymous
It was never mentioned to us
I find this intresting. Of course my son had the fundo, and now they are going to do the manomerty test next month. Unforutanlly for us the fundo was done first, and we are stuggling to stop the constaint vomiting that has only become worse since the fundo was done. Can you tell me what they found in this test? What did they recomend? What happened to the little boy who had the fundo. Was it taken down? Thanks for posting this Christine
Nov 16, 2004
Sarah
Oh my goodness!
Okay, I am so glad you guys posted these messages. I had no idea about CVS. My dd is 7 months old and has severe reflux. We have tried so many meds it's ridiculous, and none have worked. She is not gaining weight (just over 11 pounds at 7 months)and her ped is giving us a month before he sends us to a GI. He told us that the fundo is likely in the future if she doesn't start gaining quickly. I am terrified at the thought of surgery. No tests have been performed on my daughter except an ultrasound done at 2 months that revealed sludge in her gallbladder. When I go to the GI, what tests do I need to insist he perform before we go with the fundo? I had no idea it could get worse if the child has CVS. Thanks for informing all of us! Sarah
Nov 16, 2004
Sherry in PA
Testing
I'm no expert, but I've had to do a lot of research. My 13 yo daughter has just narrowly escaped fundo for the time being, but the possibility is still there for the future. Some of the usual tests are: pH probe-to confirm presence and extent of reflux endoscopy-to look for damage to esophagus and stomach, structural problems and biopsies are included (ask GI which ones he does) upper GI-supposedly confrms reflux, but only if they are refluxing during the test. Also shows structural problems of esophagus and stomach and also small bowel if they do a small bowel follow through (SBFT) Gastric emptying scan(Has several other names and can be a liquid or a solid test)- Shows if there is a delay in stomach emptying which can cause vomiting among other things. Manometry tests of various kinds-shows muscle weakness in different parts of the digestive system(ie peristalsis) Hope this helps. I really simplified that last bit as my husband is hurrying me to go...If you have questions I'll respond again and some of these other ladies know more than I do...Jump in!
Nov 16, 2004
Sarah
thanks a lot
Thanks so much for that information. I really feel the need to be as informed as possible going into all of this. She had a really bad day today, and I am so down in the dumps. I am ready to see the GI. It can't get worse, right?
Nov 17, 2004
Sherry in PA
Hang in there
It's a long story, but our Sarah and Emily didn't get help as early as they should have. I would see a GI and if it seems the meds aren't working I would insist on the endoscopy to make sure there's no damage. Hope you and the baby have a better day today.
Nov 27, 2004
Megan
Monometry
How does this test work? It sounds like a test I may need to do. If my gastroenterologist wasn't strongly against a fundo in all cases I would probably have one by now. I've tried three proton pump inhibitors and just had a pH probe that shows I still have severe reflux. All my other tests (upper endo, empty time, upper GI series, blood work) have been normal, except that there was blood in my stool. Now I am on Reglan with PPIs. We'll see what happens.
Nov 30, 2004
Sherry in PA
Manometry
Esophageal manometry works like a pH probe only you swallow sips of water and the probe registers muscle activity. The wire is slightly larger than the one for pH. I'm not sure about how it works for the stomach or intestines...probably similar.
Dec 06, 2004
Alex
Manometric Studies
Hi there, there is also a manometric study for gastric motility (testing for motility issues furhter in the GI tract). I like the first emailer have a child with MILD reflux, but contant/violent vomiting, which let her to a fundo and g-tube at 6 months old. At 14 months she was diagnosed with CVS. We have since been on very agressive drug therapy which has changed our world (she never ever responded to Reglan/propolsid/prevacid). She went from never being on the charts for her weight, to now being in the 50th percentile. She had the gastric motility study performed at Floating Children's Hospital in Boston by Dr Alex Flores (there are only 3 hospitals in the country that do it). If your child has a g-tube, they remove the g-tube for the study, and insert a long wire (that looks like a multi-legged octopus). There are many wires coming of the main line, of varying lenghts. The point being to measure motility at ever place in the GI tract. It was there that she was diagnosed with a foregut motility dysfuntion. It turns out that many children with CVS have foregut dysmotility problems. Again, the drug therapy has been miraculous. She went from vomiting 10 times a day (violent/projectile vomiting, at that). To maybe, 3 times a week now. It you would like to discuss this matter with me one-on-one, please email me at armissagia@adelphia.net.
Dec 10, 2004
Nan
Sounds like CVS
I completely agree with Alex (12/6 posting) that a monometry test might be of assistance to you. The frustrating aspect of CVS is that it is a diagnosis of exclusion. ALL of my daughter's GI tests (with the exception of the Ph probe) came back negative. The first endoscope showed tissue irritation which was resolved with PPIs (Nexium..) The Regland did not work for her either. This is logical because CVS is primarily a neurological, not GI, disorder. The only GI medicine my daughter now takes is the PPI. It took us four years (and many, many negative test results) to arrive at the CVS diagnosis. Although the delay was frustrating, it is important as the tests were performed to ensure we were not overlooking an underlying problem. Please refer to the CVS website and look in the research library for a detailed explanation of CVS (http://www.cvsaonline.org/.) My only regret is that without the CVS diagnosis, the ER doctors withheld sedating medication during her episodes. I am not blaming the ER docs - no one likes to sedate a child. It is just that without the sedation, she suffered unnecessarily.
Dec 10, 2004
Nan
Sorry for your pain
I am so sorry for your pain. Many of us completely understand how difficult this is for you. You are in the worst place right now. Once you complete the testing and, finally, arrive at the diagnosis, things will get much better. The circumstances may not change much, but you will know what direction you are headed. My most stressful moments were when we had to make the decision if we should proceed with the fundo surgery. Again, the surgery helps some children, it was just not appropriate for us. I found, over the years, some of my friends became tired of hearing about all the "medical stuff." They just could not relate to what I was going through. I am very fortunate to have found another parent whose child has similar problems. It has been great as we share the results of our research. We also support eachother during hospitalizations. I was not a fan of support groups before, but the information (medical research) gleened from them are invaluable. Perhaps your doctor can recommend a support group. With all the HIPPA constraints, the docs hands may be tied, but it is worth a try. Good luck!
Dec 10, 2004
Nan
Gallbladder can be the problem
Sarah, I have no expertise with babies. My child was much older, age 8, when she first started having problems. I know for a fact that gallbladder can cause a very wide range of problems associated with stomach disorders. I would insist a hydascan (SP?) be performed before resorting to a fundo. Again, I have no experience with babies, so the test may not even be appropriate for infants. Usually a wide range of test are performed before resorting to a fundo. Please refer to my first note and also another posting below listing all the test. Keep researching and, again, I would be VERY careful about having the surgery because "nothing else is working." I am sorry I was not more helpful to you. Good luck! Nan
Dec 10, 2004
Nan
Christine, I am so sorry that I did not respond sooner to your posting. I hope your test went well. It is a brutal procedure, but it takes all the guess work out of the analysis. You will know for sure if your child's motility is functinal - including the espohagus. Our monometry test was performed at the University Missouri in Kansas City (UMKC) by Dr. Paul Hyman. UCLA did have the equipment, but it was not operational in the summer of 2003. There are very few hospitals offering the test. For us, the test revealed my daughter's stomach is perfect and the fundo would only make it worse. They then diganosed her with CVS. The root of the problem is in the brain - not the stomach. If you child does have CVS, I believe it is imperative you have a written protocall from your doctor for the Emergency Room personnel. CVS is a VERY misunderstood condition which requires AGGRESIVE medication (sedation) upon entry to the ER. Without the protocall, you child will suffer greatly as they search for the cuases of the vomiting. They boy I wrote about earlier did not have the fundo surgically undone. They are trying L-Carnitine and CQ-10, and, I am happy to report, he is doing quite well. We are also on the same vitamins. It is really for meabolic disorders, but there is some research indicating the vitamins help lengthen the time between episodes and also reduces the sevarity of the episodes. The vitamins, in the proper dosages, cannot hurt the children. I hope this helps you. Nan
Check with your
doctor first!