Posted By Posting
Sep 27, 2001
Reflux, breastfeeding, and Failure to Thrive (Long)
Hi everyone. I'm hoping to hear something, anything, from those of you who had babies with reflux who were breastfed and received the additional diagnosis of Failure to Thrive. My son is 13 months and was diagnosed with reflux (after badgering the pediatricians) at 3 months and put on Zantac and nothing else. At 6 months, his reflux peaked horribly after a series of illnesses (throat infection, brochialitis, roatvirus). Then, miraculously he seemed to be a different child. He began to catch up developmentally and was holding at the 25% percentile for weight. Our best months were his 7th and 8th. Then the reflux seemed to become episodic and I couldn't figure out what would cause it to flare. When we went for his 9 month visit, he had dropped to the 8% percentile for weight. The doctors said not to worry, kids lose a bit when they start crawling. (Although he wasn't and didn't crawl until 10 months.) At 11 months, his reflux symptoms became more consistent again (crying and flailing after nursing for a few minutes at night). He also became extremely picky when eating, whereas he had been a good (although not great) eater before. He also didn't want to nurse unless I was putting him to sleep and then it would only be for a few minutes. Again I questioned the pediatricians and they said "oh, he's probably drinking more than you think." When we took him for his 12-month visit, his weight had fallen off the charts. The pediatrician and the GI specialist are ballistic about his weight and are demanding I stop nursing him and force him to drink PediaSure and eat his food. Getting him to eat is becoming more and more stressful. He was put on Reglan, which has done nothing to get him to eat. This is breaking my heart. I've always read that breastmilk was best for reflux babies because it is easiest to digest. He has also been recommended for a PH-probe study, a milk scan, and an endoscopy, but it could be weeks before these tests can be done. And I'm so torn-up about putting him thru them when we KNOW he has reflux! The odd thing is he CAN swallow. He will eat SOME food--just not enough. He also doesn't have a "favorite" food that I can bribe him with to eat the "other" foods. If he has esophagitis, wouldn't he be unable to eat all foods and go on a complete food strike? Isn't he suppose to have grown OUT of this by 13 months? If anyone can share their experience with Failure to Thrive and reflux, I would sure appreciate hearing it. Thank you!
Sep 27, 2001
My little angels..
My story is a bit sad because I have not one, but two sons who are greatly affected by severe reflux. One lays in the hospital bed, as I write this, awaiting surgery tomorrow morning to have a feeding tube put in as well as a fundolplication being done. The other son is in the other room with his nurse whom he has 16 hours a day to care for his chronic medical problems. He is 2 years old and has a trachestomy tube, monitors, oxygen, feeding tube, gets numerous medications round the clock, breathing treatments, etc. His brother of four months is going down the same road, all because of what the doctors call an unbalanced translocation of chromosome number 15. Unfortunately, the two have this extra piece of a chromosome and it has been to blame for numerous medical problems. The worst being the airway problems and the severe reflux and aspiration that has greatly affected their lungs. My two year old has undergone numerous surgeries to try to stop the reflux, most recently he underwent surgery to remove the salivary glands in his chin. We received bad news this week that it didn't work like they had hoped so he will undergo more surgery in a few weeks. They both have been on reflux medicaltion for months, years with my two year old. Not all cases are severe as my children, but I want people to be aware that this is a terrible disease and if it goes untreated, it could result in a not so good situation as we are in. My children have undergone every tests possible, ph probes, upper gi studies, swallow studies, the list goes on and on. We are seeing the best of the best doctors around and they can't stop the excessive drooling, reflux, aspiration, and so on. My children have taught me so much, they have taught me more than I could ever read in some book or learned from some doctor. I have watched my children go through so many days and nights, fighting for every breath they took. I don't blame anyone or anything for their problems. I take one hour at a time, never forgeting that in seconds my children could take their last breath. We were told to call in Hospice for my two year old and we refused for we wanted to care for him, along with his nurses that have cared for him from the first night we brought him home. They have loved and nurtured him like I have and we feel that as long as we all can care for him, so be it! We have been told that if things continue to worsen with his lungs, that he wouldn't live very long. But you know what, we have to be thankful for the time we have spent with him. I know in my heart that I have done right by him, always! I have never heard his voice, for he can't make noise because of the trachestomy tube and the vocal cord injections that he has had. I take one look into his eyes and I see him smile and I can feel his love for me. He has never tasted ice cream on a hot summer day, for he can't have anything by mouth. All his medication goes into his feeding tube. He has never ran through the sprinkler, for he can't run. Instead, he scoots around on his bottom, for that is all he can do. Although, these are everyday things that many people take for granted, they are the things that children do every day and don't think twice about it. I pray that you all may take note of the little things that your children are able to do and realize just how lucky you are. I ask for your thoughts and prayers for both of my children, as my four month old goes into surgery tomorrow. I know this road all to well, for we have been down it before. It doesn't make it any easier, but I guess I know what we are up against. God gave these beautiful children to me, I am not to ask why. Instead, I thank Him for that gift. I am to love them and nurture them, not taking one moment for granted. God bless you all! Shelby
Sep 27, 2001
Susan Gunther
God Bless your little Angels!!
Shelby, i just read your story and I was crying by the time I got to the end of your story. My son has reflux but not anything close to what yours are going thru. My prayers and thoughts are with you and your family for tomorrow's surgery and I sincerely hope all goes well. You have two special angels in your care. Take good care of them, and i'll keep you and your family in my thoughts tomorrow. As I said in my story for my son Andrew, just keep looking at those smiling little faces and find the strength to go on for them. Pls keep the board posted as time goes on for those two special children of yours. God be with you and your son going into surgery tomorrow- Susan Gunther
Sep 29, 2001
My angel...Wyatt
Let me first thank you for your thoughts and prayers. Second, let me tell you that I sending them right back to you for your son, Andrew. I just returned home from seeing my son in the Step Down Unit where he was brought last evening after his surgery. The surgery went very well, the surgeon told my husband and I. He had the nissan done, but the surgeon left the wrap a bit looser than he did for my other son. In doing this, he hopes that he will control the reflux and make it easier for my son to swallow. Since, both boys have this chromosome abnormality, it only adds to the swallowing problems. The nissan makes it harder to swallow too. Right now, of course, it is too soon to tell if the surgery worked. They will start to use the feeding tube maybe tomorrow with running some pedialyte through it. He won't be able to take anything by mouth for a few months, but the surgeon and his doctors can't stress enough the importance of oral stimulation. Children that are strictly tube fed run into problems if they don't associate feeding with eating by mouth. I know with my other son, he is very defensive about having anyone near his mouth. He isn't able to eat or drink anything, not even small tastes. I pray that his brother can some day. I took my oldest child, who is seven, to see his baby brother today. It has been a real struggle for him, as he feels guilty because he doesn't have tubes and wires hooked to him. He often asks me why didn't he need a trachestomy tube or feeding tube. He has normal choromosomes and is almost never sick. As we sat in my son's hospital room today, he wanted to draw a picture on the board for his brother. I gave him the marker and as I watched him draw, he wrote in big letters...WYATT'S ROOM and underneath that he drew a picture of him with the feeding tube in his stomach and a feeding pump hanging on a pole, just like it was in the room. Then he proceeded to draw another pole and I asked him why there was two of them. He replied...there has to be one for Dalton too Mom. I guess it broke my heart, but at the same time it made me proud to know just how grown up he really is. The hardest part is knowing that no matter how hard I try, I can't take away all their pain. What I can do is try to find the good in every day, every moment, and cherish every kiss and hug. It is very hard to leave one hospital room, only to come home to another makeshift hospital room in my own house for his brother. My oldest son went to stay at his grandparents house for the night with his cousins, where for one night he can escape the sounds of monitors beeping. He is a boy, although a grown up seven year old, he still needs to be a kid. He is so proud to be a big brother and loves them so much. I couldn't ask for more. I pray for all of you out there suffering, all the parents and children who wake up each day wondering if today is the day that they won't have to suffer from relux. I know all to well what it is like and I have learned that no question is too ridiculous to ask or doesn't deserve an answer. Here I am today with two children who have had every test possible and countless surgeries. My two year old has been hospitalized 28 times now and his brother of four months is up to 7 stays and I still ask the nurses which medication they are giving my sons, what doctors have been in to see them, etc. As parents, we have a right to know everything and anything about what the doctors, nurses, and surgeons do for our children. Just remember when the nurses tell you to wait outside the door while they take YOUR child into the room to do ivs, bloodwork, etc. that you have every right to be with them. I learned this the hard way! The last person that told me to wait, I looked at them and said...I am allowed anywhere in this hospital, except the operating room! They have never asked me to step out again. Of course, you can't assist, but what are they doing in the room that you can't be present for? Just something to think about. Thanks for listening. God bless you all! Shelby
Oct 05, 2001
Susan Gunther-Mgharway
Response to Shelby-your son Wyatt-surgery
Shelby, I have been thinking about you and your family ever since I read your note about your boys and the recent surgery for Wyatt especially after I posted a response to your initial note. I have been so concerned for your family and I am glad to hear the surgery went well for him. I do hope it works and helps him. I do think that YOU are your boys guardian angel watching over them every single day and I applaud you for the terrific job you are doing each and every day. You are facing tremendous obstacles in your life as I am sure your family is as well, and if it were in my power to give you a "Mother of the Year" award I would give it to you. I am not a religious person, but I do believe that God put us on this earth for a purpose and yours is definitely guiding those little angels through the toughest times of their lives. After reading your story, I was alittle guilty to even think of complaining about my son's reflux problem as yours is much more complex. Keep being their Guardian Angel watching over them and stay strong for all 3 of them. They need you more than you'll ever know. I can definitely relate to the staying in the hospital room while the dr's., interns, and nurses asked me to leave while they performed tests on Andrew. I looked each and every one of them in the eyes and said "I am not leaving so don't even ask!". I only left once, when my son was a month old and they couldn't find his vein to take a blood sample because he was in tremendous pain from the needle, and his arm was turning blue. My husband stood by his side and I cried in the E.R. waiting room while they finally got it from his foot instead of his arm. I am asking you to please keep me and the Board posted on how things are going with your children. If you need to vent or just an ear to listen to please email me My story isn't like yours, but I can lend you an ear if you need one. - Take Care-Susan Gunther.
Oct 06, 2001
Update on my boys...
Susan, Thank you so much for taking the time to write to me and I must thank you for thinking of my family. My son, Wyatt, is still in the hospital awaiting to get nursing set up. It has been a very trying week, especially yesterday. I had to take my two year old, Dalton to the doctor to get a new mickey put in. The night before, the extension line got caught on the crib and the feeding tube pulled out. Of course, I was alone with my oldest upstairs sleeping. My husband had just left to go spend time with Wyatt in the hospital. I pushed the tube back in and called the doctor. He told me to come in the morning and get a new one so we did. After doing so, we went next door to the hospital to see Wyatt. While we were in the room, the ENT doctor came in to see the boys. She is going to hold off on putting a trach in Wyatt for now and just keep a very close eye of him. Then, we talked about my other son and it wasn't good news. His condition is getting a lot worse, his lungs are basically deteriating and now he coughs up blood and tissue. Over the last month, he has gone down hill and his body is really starting to shut down. His color is very pale and his skin is very pasty and cold. Unfortunately, the only thing left to do is drastic. I was told yesterday that in order to save his life, this surgery must be done ASAP. His lungs will have to be seperated from the trachea, voice box, etc. This will give him a fair chance, I was told. He aspirates all the timee, even after removing glands, injections, etc. He goes to his pulmonary doctor on Tuesday and then back to ENT on Friday to set the surgery up. I am devestated, but at the same time I know that this is the only way. If this isn't done, he wlll keep getting weaker and sicker. The day got worse, ten minutes after the visit from that doctor another one came in. The neurologist came in and said that the results from Wyatts' MRI were in and it showed hydrocephalus, which of course is fluid on the brain. Right now, they are going to keep a close eye of him and watch for any symptoms of further complications. They may need to put a shunt in, but not yet they tell me. I pray for strength each and every day. I know that things are in Gods' hands and I have to trust in Him, but tell that to my heart. Please don't think that your problems are too small, or feel guilty. Don't ever apologize for feeling that way, our children like all children, are special and need the reassurance of parents loving and hugging every step of the way. No sickness, tummy ache, headache, or whatever the case may be is ever too small for a parent to be concerned about. I will keep your son in my prayers tonight as well as the rest of you out there that have a child. Believe me, I feel your pain and my heart breaks for all of you. I don't have all the answers, maybe none of them, but I will tell who does...The Good Lord above! For when I get discouraged and find myself wondering why my children are so sick, I turn to Him. For I know that I can't do it alone. I thank you for listening and God bless you all! Shelby
Oct 09, 2001
Susan Gunther
Note for Shelby-response for update on your boys on 10/7/01
Shelby, I have been keeping a printout of the notes you have been sending to this board so I can keep up to date on the latest with your sons Wyatt and Dalton. Your story has deeply touched my soul and I feel for your pain right now. I know that God is giving you the strength to get through each and every day, but I can't say for sure that I would be as strong as you are. Your love for them is getting you through this very difficult time. It was so saddening to read the very bad news you have received this week, as if things weren't worse for them already. I do hope they do the surgery for Dalton right away since they said it will give him a fair chance. I can only imagine it working and him improving. Then as far as Wyatt is concerned, how long do they need to wait for complications to set in, and if they don't put the shunt in, what happens next? Right now, the light at the end of the tunnel seems like a light bulb needs replacement, but I assure you God does have a master plan for your angels. He will guide them in this journey right now until he sees fit for what holds next for them. You are such a caring person. I can only hope you do have a network of loving family to help you get through this, especially this week when you really needed it the most. Emotionally, if I can be of any assistance I do not want you to hesistate for one moment to contact me. In the meantime, please take care of yourself, and don't forget your other son who stands by strong for you and his brothers as well. You have each other, use the strength the two of you have together to get through these very hard times and whatever lies ahead for your two sons. - My thoughts and prayers are with you all every single day - Susan Gunther
Nov 14, 2001
Susan Gunther
Message for Shelby on your boys
Shelby, if you do read this note-please respond on the Boards or privately as to how your boys are doing. I think about you often and pray they are ok. I even tried to send you an email to your submitted by name but you didn't respond to it. You and your boys are in my thoughts each day- Susan Gunther Email:
Feb 01, 2002
your sons to: Shelby
My heart and prayers are with you.. May god watch over you and your children.. Most importantly please take care of yourself.. Cathy
Sep 28, 2001
M Counterman
Reflux and FTT
The first thing I would recommend, only because I went through it, is to check into Reglan. My son was on Reglan. After a month, when they upped his dose, he became a monster child. And he started having leg tremors. I did some research and found out that Reglan can cause Parkinson's like tremors. But more than that, my gastroenterologist told me that it causes extreme irratability and neurological problems in 30% of all children that take it. The second thing that I did, because my son was half a pound below his birthweight at 22 days, was start feeding him rice cereal in hypoallergenic formula and gradually thicken it. I was also breastfeeding, but he could not keep that down. Currently, I breastfeed him 10 to 12 times a day. After every 3rd or 4th feeding, I feed him very thick rice cereal out of a feeder (Parent's Choice, Walmart $4.96) and this has cut down on his throwing up by about 75%. Sometimes I mix in carrots. He loves that. He is now between the 25th and 50th percentile for his height and weight, and seems developmentally fine so far.
Nov 05, 2001
Donna Germain, CSW, SLP
Breast feeding, Reflux, FTT
Dear Staci: I am a parenting and developmental specialist and do a lot of feeding work with babies and parents. Some doctors like to do a lot of tests for reflux even though there are clear clinical signs of reflux going on. Sometimes it is easy to pinpoint the cause of reflux, and sometimes it isn't. I realize that that is not helpful, but it is important to keep this in mind in terms of dealing with doctors. I feel (it is only my opinion) that among the causes of reflux are: food sensitivity or allergy (these are two different things), and/or low muscle tone and/or immature digestive system. Still, some babies vomit very easily (and sometimes volitionally!) and some are easy gaggers (followed by a vomit episode) Since I have not seen your baby nor taken a thorough history, I can't give you any recommendations. It is very common to see food refusal or picky eating in children with a history of reflux and/or unresolved reflux. There could be many things going on for your child in terms of the interplay between the psycho-social factors surrounding meals and eating combined with not feeling well when he eats. That combined with the stress of knowing that he has fallen off the growth charts means that your relationship is strained and that there is pressure to get your child to eat. Please consider your child's emotional age (he is at the age where he naturally wants to choose how much and what he eats ...your job is to decide when he eats) Make sure that he is offered 3 meals and two snacks plus water/milk daily. You have breast-fed a long time-you have given your baby a great foundation for his growth and development. It is hard to let go of breast-feeding from an emotional stand-point. You may want to consider a change - though I am not a fan of pediasure- you may want to be open to the possibility of a change and may want to explore options with your doctor. Please respect your instincts. If it feels like your doctor wants to do too many invasive tests and that s/he is not listening to you, perhaps you should look to a doctor that will be more supportive and informative in terms of management of your child's reflux and feeding issues. Hope this has helped. Donna Germain, CSW, SLP
Jul 15, 2002
Bindu Sunil
I understand
I have a 25 month old boy diagnosed with reflux when he was 17 month old, though He was loosing weight when he started on his solids( 7 month). He was given reglan and zantac with no results. He was on medicines for 3 months and then we discontinued as it was causing more harm( drowsiness and inactiveness) than good. Near his 20th month we discovered that he has cow's milk allergy, that explained his forcefull vomiting and skin rashes. Now my problem is he doesn't eat much and is off the growth chart. We cosulted a gastroenterologist who has put him on Prilosec drug(40mg) and peptomen junior(which he hates),this paticular diet supplement has whey protein. Right now I feel confused and feel that with no medication and with his min. requirement of calories would be the best life for him.
Aug 11, 2002
hi are you doing my name is teana I have a 13 month old daughter who was also diagnosed with failure to thrive. She weighgs 14.4 when she was born she weighed only 2lbs. she has other medical problems also that is causing the ftt.
Check with your
doctor first!