Posted By Posting
Mar 16, 2002
Debbie Goins (degoins@yahoo.com)
The use of anit-reflux medications
Hi my name is Debbie Goins. My son was born with GERD. He got a Nissen when he was two. After the surgery I thought things were going to get better. He was on so many medications since he was 4 months old that I was afraid I was frying his brain but it was either give it to him or he would die. He was in constant pain. All the medications (bethanachol, propulsid,tagamet,zantac,carafate,mylanta,reglan) to just name a few were given in high dosages. The reglan he took for so long that it eventually started to give him tremors so we had to discontinue it. At one point he was taking five of the listed meds at everyday. Poor little guy was taking something almost every hour. My point is I need some help. Now that he is older (six) he has alot of learning disabilities, not to mention a severe behavorial problem. I feel that this is due to the medications the recieved when his brain was still developing. I feel guilty cause I love him so and feel like I've done him so much harm. We have been to may psychiatrists and all the symptoms that I have found on this website he has. I need to know if anyone knows who I can contact and talk to about what to do. I think that the FDA would be interested in knowing that parents like me were given no choice but to help our kids with meds that they approved safe and then decided later after damage had already been done that it wasnt safe. I love my son dearly and I'll take care of him forever but someone needs to be helt responsible. I can't hold this guilt alone. Maybe I was the final decision to let him have them but that was when I thought the FDA wouldn't allow an unsafe medication on the market. If anyone has any information at all, please contact me.
Mar 17, 2002
Anonymous
effects of meds
As a mom who also uses a number of meds w/concern I'd be curious to know which meds you think were most responsible for your son's current problems. I also think you will have some difficulty getting support from the FDA only because your son was on so many meds it would be difficult to pinpoint which one caused the problems. But who knows. I'm very curious to know how many out there also have similar problems. My child is too young yet to know the long-term effects of the meds.
Mar 17, 2002
Debbie Goins (degoins@yahoo.com)
reflux meds
With my son he was also to young to know what kind of affect the meds were having on him. He was on propulsid the longest tho. He was on it for almost 2 years. He even continued to take it after his surgery. The reglan he took for almost a year before the propulsid. The concern I always had was the dosage levels he was recieveing. All the meds he took were adult dosages and he was still an infant. I voiced my concern since I work in a hospital and looked up these medications to see that there were no studies on the effect they had on children. When I asked his GI doctor he gave me good reports on how it had worked with other children but still that did not mean without side effects. I some how always knew in my heart I would never see the full impact until he got older and now I feel my nightmare has come true. Its like watching mental torment with him and it is very hard on me. I just don't want to see this happen to anyone else if any of the medications are harmful but like I said before, we as parents do what we have to to help our children cause we believe what we are told and trust the medical field. What other choices do we have?
Mar 17, 2002
Susan McLane
reflux meds
Please, please do not feel guilty - you have only tried to help your son - as you said, you had no choice at the time - I was in the same boat with my premature triplets, all of whom had/have severe GERD and multiple other medical problems. I agree with you 100% about the Reglan, and I feel in my gut that it will be taken off the market someday - it also gave my girls severe tremors. My kids at age 3 1/2 have many continuing health problems, and I agree with you that some of the meds may have contributed to some of the problems - at the same time, however, how do I know where they would have been without one or more of the meds? It's impossible to know. I wish I had known more about Reglan, b/c I wouldn't have allowed my kids to have it. My kids were in the NICU for their first 4-6 months of life, and I wasn't exactly in a position to be researching meds and the like. Do you know about the Propulsid litigation? I can get you specific information about that if you want it. Susan (mclanes@cch.com) Mom to Bryan, Bonnie and Shannon, age 3 1/2
Mar 17, 2002
Debbie Goins (degoins@yahoo.com)
re: use of medicine
I had heard of the litigation but dont know if it would apply to me or not. All I know is that I am looking at long term care for my son now that he has been diagnosed with bipolar and adhd. Also too the state I live in tested him and has listed him with having mulitple disabilites. He functions at a lower level than what he should be and I feel very discouraged cause I try so hard to help him in any way whatsoever but feel that my hands are tied not only in an emotional way but mostly in a financial way. If you have information I would appreciate it. Thank you so much.
Mar 18, 2002
Susan McLane
Propulsid litigation
I also didn't know if the litigation would be something I wanted to do, and I'm still looking into it. The paralegal I talked to at the law firm handling the case said if you have a child who "ingested" Propulsid that is having ongoing medical concerns of any kind, you should participate. I have two kids who fit that description. I got the paperwork, and am having an attorney friend look it over before I send it in - I thought the class was already certified and it's not. So I'm waiting to see what he has to say. There is a link to the Propulsid website right on the PAGER homepage - you should be able to at least call and have the paperwork sent to you to look over. Let me know if you want more information. Susan
Jul 25, 2002
Anonymous
To.........Debbie Goins (degoins@yahoo.com)
Hello Debbie. I see that you stated you are suffering from a financial aspect of the GERD that your child has. You should apply for financial assistance from your local Department Of Human Services. Your child can more than likely qualify for MEDICAID assistance. I suggest you try applying for it to see if you will get approved. Also if you or your husband or significant other pays for Daycare for your child, you can ask the childcare provider to give you a written letter stating how much you pay for childcare per week and also any other on going fees that you must pay to the childcare provider. I have "helped" several parents as far as "paperwork proof" to qualify for MediCAID assistance. Regards; Brain Storm Learning I have a medical background, an educational background and a business background. Our website: www.brainstormlearning.com ============================================== ============================================== Submitted by: Debbie Goins (degoins@yahoo.com) Category: Advanced GER Subject: re: use of medicine I had heard of the litigation but dont know if it would apply to me or not. All I know is that I am looking at long term care for my son now that he has been diagnosed with bipolar and adhd. Also too the state I live in tested him and has listed him with having mulitple disabilites. He functions at a lower level than what he should be and I feel very discouraged cause I try so hard to help him in any way whatsoever but feel that my hands are tied not only in an emotional way but mostly in a financial way. If you have information I would appreciate it. Thank you so much.
Mar 18, 2002
Susan Gunther
Message for Debbie
Hi Debbie. Andrew who is not yet 2 years old, has been on heavy doses of meds due to his reflux and related stomach problems. He has behavioral problems also, and has had a ton of delays since birth directly related to the reflux. He is currently on 2x the adult dose of Prevacid and I'm in the process of getting Motilium/Domperidone to add to the med right now. I too, like you, feel guilty as well. You would think that the meds we are forced to give our children would help them, but instead you heal one thing, and they get something else. I know his behavior is directly linked to his reflux. Just today, his teachers finally noticied that "hey, maybe there is a connection between the two!". (I've only been saying that for about a year now..). I'm not really sure what the FDA will do for you as they probably will say it was your choice to give the medication and you were not forced or coerced to give anything that they have approved. But I do understand what you are saying and going thru. I'm here if you need me for a one-on-one.. Don't go at it alone. I've found that NOONE understands our children's problems better than a fellow Mom going thru the same thing. So take me up on my offer if you need someone to talk to.. Susan Gunther email: mgharway@aol.com
Mar 19, 2002
Debbie Goins (degoins@yahoo.com)
re: message
Thank you so much Susan for offering a shoulder. I've been so fortunate in a way that Michael's surgery went well and he doesn't have anymore problems with the refulx. He does suffer from the side effects of it tho. It's funny how things can be so bad that you are willing to accept the side effects as the alternative but he is doing so much better. If now I could just resolve his behavorial problems. Many many times I endure his violent outbursts even to the point that he stabbed me with a screwdriver. His father does as much as he can to help me but it always seems to be focused toward me. Then when things are over with he cries and tells me how I shouldn't love him cause he is bad all the time. I cry now just trying to type this cause its so emotional for me. I love him so much. He is my only child and I can't even help him anymore. Again he's been on mood altering drugs (geez, more medicines) and they have not helped. I've been to many psychiatrist even going as far as driving 2 hours one way 3 times a week to see a doctor and still could not get him help. The meds either upset his stomach or he gets worse. Right now we have opted to not give him anything. I can't stand the idea of giving him anymore meds that effect his brain. The more this carries on the more I feel guilty cause I know its my fault. I can't stop blaming myself. I can't get anyone to understand the strain its been on me and then I feel guilty cause I shouldn't be worried about me and how I feel, I should stay focused on him. Everything I do is for him. I think so often "why me" but it should be "why him". I just want things to get better and they aren't and there are no answers. I guess I just want to have someone else to blame.
Mar 19, 2002
ptyler
to debbie
Debbie You sound very much in pain. I am so sorry for you and the troubles you are having with your son. I know it may seem impossible to do but please stop blaming yourself for your son's problems. You did what you thought was right at the time for the pain your son was suffering. Also you don't really know if the meds you gave him caused the problems he has now. There are many causes sometimes unknown causes for behavior problems and ADHD. What might help you and your son most right now would be getting yourself some counseling to deal with your guilt and to hook up with a support group for families with children with ADHD (like CHADD). Please consider it as you can't help your son until you help yourself first. Take care and please know that you are in my thoughts and prayers. PAM
May 19, 2002
Mason's Mom
GER and a laundry list of other problems
Hi, I'm Mason's mom. He was born on 31 Jan 02, like another mom, our experience was one of complication from the git go. Mason was born via emergency C-section. He wasn't breathing very well at first, but then pulled through and was transported to a large Medical University in our area. At first the diagnosis was Trisomine 13 and he had 7-10 days to live. The genitics all came back fine 46 XY, thank God! Once at the Med U, we were told Mason had PDA, VSD, GER, Bi-laterial Clef lip and palate, and undecended testies. At three weeks of age his PDA was fixed, he opened his eyes for the first time and he wouldn't quit vomiting. Mason used to vomit so hard he would spit out his NG tube that was down his throat. I felt so bad for him. My husband and I spent countless hours in the NNICU wishing him not to do this and questioning the doctors and nurses. Most of the time they told us that it was just something that babies did and that he would get over it. We didn't believe them and asked for a consult from the peds sugery. Our doctor ordered a ph-probe and Mason refluxed over 160 times in 24 hours. During all this testing, sugery, and placing of NG tubes our son developed oral aversion. When the ph-probe test results came back, the dr's said the only way to fix our problem of serious projectile vomiting was the Nissen and a G-tube. We didn't like either soulution but to get him home we agreed. On 11 March 02 Mason went from the NNICU to the operating room to get his proceedures done. After 3 hours of waiting, (they said tops 2 hours) I went to find someone who could tell me what was happening. A doctor from the team came out and said that Mason had piloric stenosis and wanted me to sign a consent form to fix this instead of the above mentioned proceedures. I signed and 20 minutes later I went back to NNICU to see him. He looked fine, only three little slits on his belly. No tube, yet. March 18th we decided to get the G-tube. After much thought and Mason not wanting to take a bottle either very little (5-10cc) or not at all. It was a hard decision to make because we were also dealing with the plastics team to fix his lip. Even if he could suck the bottle he wouldn't be able to for 10 days to 2 weeks. The peg went well and so did his lip. Mason started doing well. He could tollerate contineous feedings of 32cc q24 and we increased it all the way up to 97cc q3. We were so thrilled. The saturday before Easter he just quit vomiting, like a switch had been turned off. We went 10 days like this and on 5 April got moved to the step-down nursery, next step-HOME! We have always had a weight gain issue, that of not gaining the "recommended" amount every day. I will never forget the 9th of April, they dr's decided to change the formula to Neosure 24. BAD MOVE!!! Mason didn't tolerate that at all. We vomited every feed for 12 hours until they finally listened to me and the nurse that was taking care of us. Then they put us on sim 20 and he didn't do well on that either as he had before. Now our delima, do we go with sim 20 and let him vomit, or try a soy formula. Soy it was. At first he didn't look like he was going to do very well, but in the end he pulled through once again. We have been home now for 3 weeks, and let me be the first to say that it has not been easy. My husband's job keepes him away from home for 30-45 days at a time over-seas, he helps out a lot when he is home. We have meds begining at 6a and the last ones are at 12a. Reglin, zantac, prilosec, captripril, (for hypertension developed after piloris was repaired-no known cause all tests have come back normal), and an amoxicillin for provention of UTI. I am glad that I came to this web site and read the info on reglin. I had heard some things, but hadn't heard all the info you posted here, thanks. When Mason was in the hospital for all those days they always had him elevated in his crib, sometimes it helped, other times it seemed pointless. I begain to stay 24-7 in April until he came home. When we got home, I elevated his matress and it didn't seem to help. He now sleeps either on his back or in the prone position, he has an apneia monitor and I feed him between 92 and 95cc q3 via the G-tube and a 60cc syringe. It takes about 30 mins to feed that much because if you go too fast then he dribles out of his mouth. When he is awake and he thinks it's his idea, we try the bottle. My biggest question that I have that no one seems to be able to answer for me is ...How do I know when Mason is full? "Normal" babies who drink from the bottle drink unitl they are full and if they empty it, you give them more, right? The dr's say for his age it should be between 3.5 and 4oz q3, but he only takes just over 3 oz. If anyone has any suggestions I would greatly appreciate them. Also any ideas on infant oral averion?
Aug 01, 2002
Anonymous
Reflux meds
We are so glad we found this site. Our son (20 mo) is on 7.5 mg of previcid twice a day. He is still having one episode a day that mylanta can help with. After reading about Reglan, I don't think we'll be going there, just need to determine if any damage is occuring in his esophagus. Thanks for the help. Angie, Glenn and Logan boles@cowtown.net
Dec 10, 2002
Anonymous
Reflux meds
My husband and I have an 18 month old son who was diagnosed with Sandifer's Syndrome at 4 1/2 months. He too was prescribed Reglan along with Zantac & Mylanta from age 2 weeks to age 4 1/2 months. When our son turned 4 months we decided to take him to a GI specialist, this was after having chest x-rays (done twice)and an upper GI barrium test to see how advanced his reflux was. For some reason the pediatricians (in our area at least)don't want to listen to 'new' parents when they say things just aren't right with our child-there are things happening with our child that need some special attention from the doctors. They tried to tell us our son has a bit of colic (24 hours a day! I don't think so!), give him more Mylanta, Zantac. The Reglan made our son act extremely nervous, restless as well as he would start screaming fits that could last up to an hour and then another hour to get him calmed down. Having learned as much as I have now about Sandifer's Syndrome, as rare as it is, I cannot believe any doctor would prescribe a medicine such as Reglan to any infant or any child for that matter. Our son's GI specialist prescribed choco-based prevacid compound and within 1 week we started to notice our son's hands actually would go limp while eating instead of the tense fists and he would actually relax in our arms to sleep. I wanted to send the pediatrician a dozen roses for his faith in the prevacid and that we would finally have a child that was happy and easy going natured as we new he really was!! Our son finally started to sleep for longer shifts, now of course through the whole night! A month ago we took our son off the prevacid completely for a month to see if all symtoms were out grown and he did not reflux anymore but, the night wakings began again and coughing fits through the night started up again as well as he had a strange 'siezure-like' episode so we are now scheduled to see a neurologist in January. Once back on the prevacid, our son went back to sleeping through the night and he's happy and healthy! I must say prevacid is, at least for us and our friends son as well, the 'MIRACLE' prescription and it tastes a whole lot better than Zantac! If anyone out there has any helpful information for us on Sandifer's Syndrome I would love it, there is such limited helpful information.
Apr 11, 2003
heidi
reglan side effects with or without zantac
my daughter was just born and has ger. she is taking zantac and reglan. can you tell me of the bad side effects that you know of? my email is heidijoey@aol.com. please help me. heidi
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