Posted By Posting
Jun 03, 2004
mrsmh44@sbcglobal.net
slipped fundo and tonsillectomy???
My son has had GERD since 6 weeks of age. They did a fundo last August 2003. His tonsils are so enlarged and infected that they started bleeding last weekend and we ended up going to the ER. They stopped the bleeding but now want to do a tonsillectomy tomorrow and an endoscopy while he is already under anesthesia. His ENT is afraid that maybe the fundo slipped and the acid is causing the enlarged, red tonsils. I am so upset by all this. I don't think I can handle another fundo and hospital stay. I really need some emotional support right now and only have this site to go to. His dad is supportive but doesn't realize what it is like to be a mother and watch your child suffer.
Jun 03, 2004
Don and Marianne Bates - Northern VA
Our son had a second Fundo
Hi, Our son had his first fundo at age 7 weeks and the 2nd at age 1 1/2. He's now 3 1/2 and doing great (knock on wood). If you'd like to talk, please email us at Don.Bates@verizon.net. To be honest, the second fundo didn't seem as bad as the first; maybe it's because we knew what to expect. Look forward to hearing from you. v/r Don Bates PAGER Volunteer Don.Bates@verizon.net
Jun 13, 2004
Anonymous
5 mo old grandson getting ready to have fundo and g tube
Please tell me what questions to ask and what to expect. My 5 month old grandson will possibly be having his 1st fundo this week. He was born 12 weeks early and his weight was 3.1 lbs. He now weighs 9.12 lbs. At 14 days old he had NEC and had surgery which they removed part of the small and large intestines and he had the ostomy bag. ( This was in Jan 2004) In March we had the ostomy reversed, in May he started having breathing problems which was caused from scar tissue around his windpipe and he had to have a trach. He has had problems with reflux since he was born and we h ave tried reglan and zantac. The doctor who did the trach said the reflux has to be fixed because it is partly the cause of the reason which we had to have the trach. Please tell me what side effects are with the fundo and the g tube. Thanks Kathy Christmas KGC1255@bellsouth.net
Jun 05, 2004
Anonymous
HELP
My daughter is 8months old and has severe reflux in my opinion. She was in the RICNIC for 10 weeks when she was first born due to complications with spina bifida. However, she has always eaten well until March when she was hospitalized with pneumonia. Since then, we have had to use the NG tube. SHe would sometimes suck, but most of the time just gag when we put the bottle in her mouth. We have done swallow studies and everything looks fine. We just did a scope of her esophagus and stomach. She has a small ulcer near her dwadnum(misspelled) and esophagitus. We are now on prevacid and carafate and pump feedings at night and small amounts during the day. She won't suck the bottle at all anymore, but she will a pacifier. We are so frustrated as what to do or why she won't eat anymore. I read everyone's listings and they all sound like us. An hour after she eats, she cries out with pain. It breaks my heart that I can't do anything to make it better for her. She is followed by a feeding team at Children's Hospital in Cincy, and they aren't sure what is going on. They say to be prepared for a g-tube. We don't want that if we can help it. She drank so well before. I feel like she doesn't empty her stomach and they said we could do a gastric empting scan, but what will that tell us and what can we do about it? What does dumping mean? She use to drink her bottle and then become lethargic for 20 min or so. Does anyone have any suggestions as to things we may need to try or we can ask the Dr.'s? We try so hard for her to drink her bottle, but she refuses. Thank you so much for listening and helping if you can. You can email me at jchughes@charter.net. Thank you! Celena
Jun 06, 2004
Don and Marianne Bates - Northern VA
re: HELP; try reposting as a separate posting ...
Hi Celena, If you repost as a separate posting, you may get more feedback; also, if you put some details in the subject line, you tend to get more feedback. I'm sorry to hear about your daughter's spina bifada; I don't know anything about that, but will try with some of your questions. You ask about a gastric emptying scan -- for this test, the technician will give your daughter a small amount of radioactive fluid mixed some formuala to drink or via her ng-tube; she will then have to lay still for almost one hour while they xray her stomach (if she can't or won't, they can strap her down to hold her still). This is painful to watch, but I don't think any permanent damage is done. This test measures how fast the radioactive fluid leaves the stomach and, thus, measure emptying. There are a few medicines for motility (i.e. emptying), but most seem to work on only about 20% of the kids. I'm not sure what to do if the meds don't work; you might want to put up another posting asking that question. Dumping is when the food flows through the intestines very quickly. I think it normally results in diarhea, but am not positive. It does result in a very lethargic state, also. I recommend you get help from a speech pathologist to help with the feeding issues; a good speech pathologist can do wonders with feeding issues. Most counties have early intervention programs and this is normally available on a sliding scale, depending on ability to pay. Your pediatrician or other doctors should be able to put you in touch with them. If your daughter is still in pain from the reflux, that can definately have an impact on the feeding. I think that getting the reflux under control first should help with the feeding in the long run. Sorry you're having such problems. We'll keep you in our thoughts. v/r Don Bates
Jun 07, 2004
Anonymous
8 MONTH not drinking anymore
Thank you for responding! We have just begun being seen by a speech pathologist this week. i hope things will improve. It sounds like the emptying scan will tell us some information, but there isn't much to do about it. What do you know about a ph probe? How invasive is that and what will it tell us? It is so hard giving her medicine because she gags and throws it back up. I can't get prevacid down the tube, therefore, I have to dissolve in water and squirt in her mouth which causes her to gag. I don't know much about Dumping except what I have seen on this sight. What do they do for it? Do you know where I can find info on it? If you know of any things I could run by the Feeding Team, questions, thoughts, etc., please let me know. I am willing to try just about nything to get to the bottom of this. Thanks so much! Celena
Jun 10, 2004
Carla Gorecki
8 month not drinking
I read both your posts and can only answer one of your questions. The 24 hour Ph study is the most reliable test (according to my daughter's GI) that diagnoses reflux. It does more than that though; it tells the doctor how often your baby is refluxing, what actions trigger the refluxing, and what the Ph level of the acid is that comes up. You have to keep track of what your child is doing throughout the 24 hours (like crying, eating, laying down, sitting up, etc.) and they track it with what was recorded on a little computerized machine. It gives you a number in the form of a percentage. The percentage is how much they refluxed that day (for example, 20%). It is used in combination with the other tests, like the endoscopy, to give a clear picture of the scope of the problem. It isn't painful, and hardly irritating, other than the tape on part of their face that holds the tiny wire in place. It goes down their nose, down their esophagus, and hangs right above the LES muscle above the stomach. The only other thing I can encourage you to do is ask the doctor about the g-tube making reflux worse and causing hiatal hernias. My friend's daughter had a g-tube placed 1st and the reflux got worse. Her new doctor told her it can cause hiatal hernias, if one isn't already there, and those worsen the GERD. Her daughter ended up having a fundo, as did my daughter, but didn't find out the g-tubes can make reflux worse until after the fundo. She was frustrated, wishing she knew that information before the g-tube was placed. Just ask about it and see what kind of info you can find to read about it so regardless of your options, you can make an informed decision. Hope things get better, I know how frustrating it is. My email address is tccgorecki@cox.net if you want to contact me.
Check with your
doctor first!