Posted By Posting
Aug 19, 2002
Logan's M&D
Testing and Surgery Questions - Please help, any info
Our ds is almost 21 months. His weight isn't terrible but he's lost weight over the past 3 months and his reflux has gotten out of control. We have 2-6 episodes a day with 1-2 of them lasting for 20 minutes to an hour. He's in acute pain and hysterical. He takes 3-6 doses of mylanta a day and 15mg of prevacid. The excess mylanta has caused diarrhea. The prevacid seemed to work wonders at the start, but seems ineffective now. We have him scheduled for a gastric emptying scan, endoscopy and ph probe. At this point, since meds aren't helping, we're leaning towards surgery if he's a candidate. If meds don't help, time to move on before permanent damage occurs . . . What can anyone tell us about the tests on a toddler and the various surgeries available? Any helpful hints how to get through the procedures would be appreciated. It seems as though everything we read about surgery indicates a very high success rate, are we missing anything?
Aug 19, 2002
Susan Gunther
Message for both parents concerning Fundo surgery
Hi. I just read two posts back to back about the fundo surgery. I'd highly urge both parents to read on the PAGER board under "NEWS" - Newsletters, Reflux Digest - Focus on Surgery first. I've been told that there is very specific criteria a child/infant with reflux must meet first before ANY surgeon will perform a Fundo. Failure to thrive is just one of them. All options must be exhausted first before a dr will perform this surgery. A parent should not go into this surgery lightly, and please know that it is not "reflux-proof". There are plenty of cases out there where the fundos fail, complications set in. I would highly urge anyone even thinking of a fundo for their child to get a second and third opinion FIRST from top surgeons BEFORE going into this. As bad as reflux is, with time, and trying different meds, and doses, can be the trick to controlling reflux. There is still a good percentage that outgrow this disease. I hope this helps you both. - Susan Gunther Mom to Andrew Age 3- a silent refluxer. (Surgery officially ruled out this past spring due to his NOT meeting the criteria for the fundo operation-got a 2nd opinion from a top GI in a top hospital).
Aug 20, 2002
ph probe
My son, age 19 months, very recently had a series of tests that I really dreaded but it went better than I thought. First, I got something called EMLA cream prescribed that you apply an hour or so before an IV is started (use a waterproof bandage or plastic over the EMLA-see the directions)--it deadens the skin so the IV is not traumatic. Second, we had the probe inserted while Connor was still anesthetized from another procedure--this takes some planning but it'll be worth it. Maybe when he's out from his endoscopy the staff can insert the probe and get the chest x-ray to check the positioning. Third, we bundled his hands in socks with extra padding, so he couldn't pull the probe out, and we got him a little toddler-sized backpack for the ph probe monitor. He scooted around very happily with his little pack on his back--I think he felt like a big boy. Sure hope things go better for your little one!
Aug 20, 2002
Testing Questions
At 8 mos. my daughter was not responding to meds and her weight was of some concern. Prior to increasing meds to a maximum level our doctor suggested an endoscopy. It showed esophagitis and made the case for an increase in both her Prevacid and Zantac dosages. At that time she weighed about 18 pounds and was prescribed 2.2cc of Zantac and 30 mg of prevacid a day. Shortly after the increase her behavior improved. After reading your posting I wonder if your child receiving the maximum dosage of medication available? I've also read that some children respond better to some meds than others. Perhaps that is an avenue worth exploring. The next step in our daughter's treatment is motility drugs, which our doctor suggests if the current medications seem inneffective. This is what OUR doctor suggests before sugery is considered. I'm hoping that one of the test you mention your son will be undergoing will provide some information to assist you in medically treating your child and will allow for the avoidance of surgery. For information on testing check out past PAGER newletters. The one that focuses on surgery contains information on some of the tests you mention. An easy way to scan through each newletter is to do a word search. Also look for information on testing on the web. There are some good sites out there. Best of luck.
Aug 22, 2002
What is being reported more and more is that the Fundo surgery is not a "perfect" solution. My daughter's doctor has told me he used to be much more excited about it. Now some studies are reporting 65-70% of patients receiving fundo surgery require acid suppression within two years of the surgery. My brother who has Barrett's disease finally had the fundo surgery after participating in 5 experimental surgeries. He tells me it is not perfect. He still suffers from reflux. Our GI has also told us, whereas my brother will get maybe twenty years out of his surgery, our daughter would only get 10 years and then do it again. We are hoping to manage her on medications until there is a better surgerical procedure. Perhaps some of the parents having experienced the fundo surgery could report what life is like post surgery. What happens if the child get the stomach flu but cannot throw up etc...
Aug 23, 2002
Logan's M&D
Thanks for the responses!
We are certainly more concerned about considering surgery. I have read about several hospitals with great success implementing the Ashcraft-Thal version and doing so laproscopicaly. On teaching hospital in Galveston, TX has reported 70 out of 70 with the Thal technique. Logan had his gastric emptying scan today. It started off terrible, he wouldn't drink the sugar water solution. So after he was already pissed off and wouldn't calm down, he got an ng tube and they fed him that way. He was pinned on a table with sand bags and blankets and he was hysterical. After about 15-20 minutes he started calming down and went to sleep so the rest of the test went well. We don't have complete results but it looked like he was emptying well from what the tech could witness. Hopefully no pyloric (spelling?) issues. We are wondering if sometimes we mistake a full blown tantrum for a fit . . . but since we can't calm him down by doing anything, seems hard to believe it's just a fit but several of those episodes start with him getting mad. Has anyone else experienced anything like that? We don't want him to suffer in pain but trying to coddle him all of the time may be wrong as well . . . We are so confused right now. His endoscopy and PH probe is on Wednesday 8-28, so we'll soon know how bad it is. Thanks again for your comments.
Aug 26, 2002
This was the first you mentioned of Logan's agitation prior to an episode -- have you broached this subject with your Dr.? When did Logan's reflux begin? Has he always had problems -- or are these episodes of vomiting "new" or within the last 6 months? "Terrible twos" can manifest themselves between 18mo & 3 1/2yrs. -- (Not to say that Logan doesn't have a GI problem) -But please review history in light of age/development and physical/mental development. Also, explore possibility of food allergies -- i.e.- more episodes after eating "fast food" french fries?-may indicate "peanut" allergy from peanut oil -- or wheat(gluten) allergy after certain breads/muffins/cookies, etc.--or milk allergies after eating ice cream, cheese,etc.-- Easy "food allergy" testing---#1 Withdraw suspected food( any any associated with it) for period of 2 weeks (takes this long for food to get out of system) ---#2 Then, one day when you can micro-observe your child -- give him "overdoses" of ONE suspected food. Watch for trouble breathing(which could indicate anaphylactic reaction)WRITE DOWN all foods given and your child's reaction for 36 hours. All vomits, BM's,rashes,runny noses, coughing, HYPERACTIVITY, tantrums, complaints. For another suspected food--start at #1 again with next food. I would explore ANY OPTION before having surgery -- and ALWAYS get a 2nd or 3rd opinion!!!
Sep 02, 2002
Logan's M&D
Upset and then Reflux
We got Logan's Ph probe and biopsies back. He has mild to moderate reflux with mild esophogitis and no hernia. We've witnessed Logan getting upset and then it truns into a reflux episode and he's in severe pain. We video taped one of his episodes and showed it to the GI Dr. and her response was, that is not a siezure or a tantrum, that's a baby reacting to severe pain. Logan very rarely ever vomits, he has silent reflux. The Dr. agreed that he could induce an episode by getting upset. As for foods, Logan still takes 2-3 soy bottles/day. He is very limited on solid foods. either he won't eat it, or he can't have it. Dairy tears him up and may even aggravate his reflux, fried fatty foods also tend to aggravate reflux. He won't eat eggs, went on a waffle strike recently and may have just finished a banana strike (we hope). He want's citrus fruits or tomatoes . . . we just feel like we can't win. He's below the 25% in weight and we'd hate to cut out the soy and watch the rflux get worse and/or not gain weight. The Dr. said stick with the bottle for now. In addition to all of the above, he's intense and very strong willed. I (Dad) always wanted two kids, but between the reflux, some sleepless nights and his attitude at times . . . I think I'm done. I'd go crazy going through all of this again!!!!!!! Thanks for listening and your support. After his test, the Dr. said back on Prevacid and hang in there for another 2 years.
Sep 04, 2002
I can relate
I read about these families with three and four refluxers and I wonder how the parents managed. My 4 year old non refluxer never had a tantrum. My 20 month old refluxer does. I have told friends many times that if the refluxer had been born first, she would be an only child. They laugh and think I'm joking, but I'm serious. My cousin, who wanted a tribe, stopped at one because of the reflux and severe depression that went along with caring for him during his first year (now a delightful kindergartner). I've also had problems figuring out how to discipline her. From about 10-15 months I let her get away with everything because she was frequently in pain. She had food refusal (dropped totally off the charts, now up to 8th percentile or so) and I would practically stand on my head to get her to eat or stop screaming. I appreciate she's spoiled, but you do what you have to do at the time. But it's much harder trying to set limits late in the game then it is being clear about them from the beginning. She really tests them and is so defiant. And then, of course, I'm always trying to figure out whether she's miserable because her reflux is bothering her or whether she's screaming because she's in the terrible twos. Reflux adds complexity to this parenting thing. Question: since the biopsy showed esophagitis and since your feeling was that the Prevacid wasn't working so well anymore, did the doctor change anything? You say "back on the Prevacid" but is it a higher dose? I sure hope it's not another 2 years for either of our kids.
Sep 16, 2002
After reading all of these letters from the parents of small children with reflux I would like to offer my thoughts about my children's battle. I have four children, two of them have/had reflux. My second child turned blue in the nursery the day he was born and spent the next twelve months of his life turning blue, screaming, and vomiting everywhere. I thought it was difficult until I had my daughter. My fourth child was born at 35 weeks. She was healthy when she was born but at two months she caught RSV. My life was never the same. When she came out of the hospital at four months she was still vomiting. The Dr. thought that it was due the coughing. At five months we put her in the hospital and refux and asthma were confirmed. We had her on medications of all sorts with varing results. She would do well for a while, but was never really well. We did all sorts of allergy testing. She was severely allergic to milk. I kept her off all milk products. It helped for a while. I have a wonderful pediatrition who often came to my house and would take to me for hours about my daughters treatment. Last summer she started to loose her voice. She now had polups growing on her vocal cords, was on four reflux drugs, five asthma drugs, allergy meds and still loosing weight(she has never gotten above the 5%). She was also having more difficulty managing her asthma. Only then did we consider surgery. I urge all families to exhaust all other possibilities before surgery. Last November, two weeks after her fifth birthday, she had a laproscopic nissen. She had it done at a major university hospital in the northeast, with the best docters. The surgery went well. The period after was difficult. She lost the ability to eat and had to relearn and wait for the nerves to regenerate. This took three months. My daughter, who always had a smile on her face would never complain. She wanted to be in school with her friends. She wanted to be like everyone else. Watching a child who has had a nissen get a stomach bug is not pretty. They get a version of the dry heaves that is so severe it is painful to watch. My now amost six year old daughter's body shakes like she is being hit in the stomach. I am very glad that we did the surgery,but we had no atlernative. She is now starting to reful again and has started to loose her voice again. We are going to see several of her docters this week and decide how to proceed. I wrote this to share my story. Surgery worked for a while for my daughter and it let her be on less medication for a while but I would never consider it unless things were really, really, really bad. Some days when my daughter cannot talk and I know that she is still refluxing I want to cry, but then I look at her beautiful face and her happy smile and I feel so much better. My advice to other parents is to take it day by day. Also find a Dr who really honest and truely cares about your child. Ihope that I did not ramble on too, too much but it has been a long journey. I am frustrated that she is still fighting this after all these years but I am thankful that I have her beauty, stregnth and joy in my life. Thank you.
Nov 19, 2002
Chloe's mom
also curious
I'm backtracking through messages: also curious what the doc did with Logan's meds. We tried meds months ago for a while but didn't see any difference so we stopped. we even tried one to increase her appetite with no results. Her gastric emptying test results were fine (sounds like Logan did much better than Chloe - she screamed until the last 5 minutes of the test then finally fell asleep). BTW, I am very thankful her twin eats like a champ and has no problems (he's going on 24 lbs. while she's barely 17 lbs.) Like your child, Chloe is strong willed and can get out of hand (fussy, screaming, especially if she doesn't get her way) so we're doing the same behavioral balancing act. when do you coddle and when do you ignore or discipline/structure...? She is also not on the growth chard, but she would be 50th percentile if she were 5 months old... Last night she was throwing her typical tantrum late in the day so I removed her from her twin and the toys they were fighting over, took her to my room (dim lights, quiet) to cuddle her and calm her down. I thought for a few minutes that she was fine, then I heard the bubbling in her stomach and up it all came! (she had just had one of the best meals she's had in days - ugh!) Anything new with any of your kids? (it helps to focus on others sometimes =) Debbie
Nov 19, 2002
Chloe's mom
food refusal/allergies/vomiting/slow or zero weight gain
Hi, I just found this website - can't believe it took me this long to start searching but I guess sleep deprivation does that...we can really relate to your issues with your baby getting upset, then vomiting. Ditto for refusing foods that are OK for him to eat. I also feel like we can't win; I run myself ragged trying to find new foods or new ways to fix them and nothing ever works twice! I have a call into our GI doc in Atlanta to see where we should go for a second opinion or further studies. we can't seem to make any progress with C. She's 17 months old, has low level food allergies to many things, what she can eat she doesn't want, when she does eat (not much or often)she sometimes throws up. It's been an ordeal trying to figure her out; when we think we've nailed down her problem it seems to evolve into something else. Her reflux was so bad that she had to get a G-tube last December and we just started back on the night pump after trying her off of it for two months - practically no weight gain without it. We're exploring food allergies being the cause of irritation and vomiting but it's avery gray area. We are trying her back on some of the foods we've eliminated like wheat. so far nothing conclusive. She's had an endoscopy, gastric emptying test, breath halogen tests (I think - for sucrose and glucose). The elevated levels seen in the breath tests led all to believe she had a metabolic disorder but the biopsy was negative. so, we're still exploring. she's on NeoCate (prescribed by the allergist); I wish soy formula worked but anything with corn syrup solids make her vomit big-time. NeoCate is a 30-calorie formula (the One-Plus is anyway)that is safe for Chloe since it's free of dairy and other things that bother her - if soy isn't your ultimate answer you may want to look into it. Sorry for the length of this; didn't know how else to get out what we're dealing with...I just wanted to see if anyone has any suggestions for specialists or places that have been very pro-active in problem solving. we're in Atlanta but willing to travel if necessary. Thanks
Sep 23, 2002
Surgery Helpful
Hello I understand how frustrating this can be. I was a premature infant and it wasn't until college when I became dangerously ill due to GER that we determined surgery was a necessary option for me to be able to lead a normal life. Before having surgery my diet was modified to attempt to decrease the reflux and tremendous amounts of pain I was in not to mention I basically stopped eating and was getting IV fluids on a regular basis. Some foods that seemed to help more than others were natural juice nectars, jello, yogurt, bananas, and chicken broth. I had the surgical procedure called a nissen fundoplication. It was not bad at all since it was laproscopic. I was eating a much normal diet within a week and the pain went away fairly quickly. For awhile following the surgery swallowing hard foods like steak, chicken could be uncomfortable but that meant taking longer to eat and cutting everything into small pieces. Would be happy to answer any questions you might have. I had my second nissen about 3 years ago. Prior to surgery I underwent endoscopy which was fine because i was sedated. The Ph Probe was pretty uncomfortable. Barium swallow study was alright but the barium bothered my stomach, the emptying study is longer and you have to lie pretty still but meds had become completely useless in my case. Sincerely, Kimberly M. Montanaro Phoenix, AZ
Jun 30, 2003
Kim - How many years between fundos?
Kim - it is my understanding from your e-mail that you had two fundos. How many years transpired between the two operations? Did the surgeons tell you how long the recent procedure would remain effective? It would seem that you would develop scar tissue and other complications from having the procedure too many times. My 11 year old is scheduled to have a fundo in July 2003. Surgery seems a drastic measure if it is only a temporary cure. Please share your thoughts with me, Thanks, Nan
Oct 01, 2002
What have you decided to do???
My son is 21 months and is doing exactly what your son is doing. We are scheduled for anoth PH Probe and sleep study. My son is also taking 15 mg of Prevacid twice a day and Mylanta about 5-6 times a day. Like your son, he is having alot of diarrhea.The Prevacid is working better than the Prylosic, however, my son is still only sleeping 5-6 hours a night. He has a really hard time at night, therefore, he has circles around his eyes. I have been able to get him to eat rice and green peas. He does drink a good bit. Please share with me what you are doing at this point. My son is under the care of an excellent Pediatric GI doctor at Duke Children's Hospital. His doctor is really trying to keep him out of this surgery if possible...
Check with your
doctor first!