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September 17, 2011 at 4:04 pm #69053

Anonymous
Inactive

I’m feeling so sad lately and I think I need to vent. My son is almost 7 months now and his reflux is still out of control. This past week everyone in the house got a cold and his reflux got even worse. The cold seems to be subsiding but his reflux isn’t. He is miserable all day and all night. If he isn’t upright, he is arching/flinging himself backwards CONSTANTLY. His voice comes and goes, but is mostly very hoarse. ALL he wants to do is nurse. He barely sleeps. He can’t play happily for more than a few minutes here and there. He’s currently taking 7.5 mg of Prevacid twice a day.

Well, my husband and I are constantly at odds lately because he seems to think things are my fault. He thinks I obsess/care too much about keeping the baby happy…he thinks I need to feed him less and just let him scream…and he thinks he should be crying it out every night (I am up every 30-45min with him). I don’t think we could have more opposite opinions. So, I took my son to a new ped GI for a second opinion. She upped his dose to 15mg twice a day. Sounds great…except my husband refuses to allow it. Since the first doc said 7.5mg was the max, he thinks we should go with the more conservative opinion. To top it off, the new ped GI told me to Ferberize him at night (even though she admits that he is likely waking due to painful reflux). Then she told me the “main” problem was that my son uses me as a pacifier and he hasn’t learned how to cope with the pain on his own. More fuel for my husband’s fire. And the ped GI wants me to start solids, which my husband has also been pushing for. Apparently I’m the only one who believes adding new things to his sensitive digestive system is only going to make things worse.

All of my time seems to revolve around making my son more comfortable…but apparently this is the wrong way to be. My husband says I’m unbalanced. Whenever I say something like “Ugh, I feel so bad for LO right now” he will always say “Feel bad for yourself and me…we are the miserable ones.” The ped GI told me she’s more worried about me than the baby (I guess I looked like hell…haha). I feel like if an adult was as miserable as my son is, people would be paying more attention. But somehow because he’s a baby, people can just ignore it? Why does nobody care about him the way I do? Am I crazy? I’m not even sure this post made sense…haha. Thanks for reading!

September 17, 2011 at 4:26 pm #69054

hellbennt
Keymaster

I don’t know what to say…I’m so sorry you’re going through this w/ your husband…hugs!

September 18, 2011 at 1:50 am #69057

Anonymous
Inactive

I’m so sorry you are going through this! I hope finding this forum has helped that feeling of “gosh am I crazy?”…

I know it certainly did for me. I am happy to answer your questions but sometimes hearing some anecdotes is helpful, or at least knowing that you aren’t the only one who has gone through this and that others have actually come out of it with sleeping children, and intact marriages…imagine!

So I apologize ahead of time for the long reply. My first child sounds a lot like yours, he woke every 45 minutes until he was 18 months old and I think we had one four hour stretch of sleep during those months, and a few (maybe 5? That’s probably generous!) stretches of between 2-4 hours of sleep without waking. I thought I was going to lose my mind. I looked terrible, I felt terrible, it was just awful.

So I can fully relate to what you are describing! My husband was also not excited about medicating, at all. I think one strategy for you is to explain that doctors are all over the map with babies and meds. As you might have noticed on this forum, docs give everything from nothing to healthy and appropriate doses of meds.

There is a great website but it’s currently being rebuilt, http://www.marci-kids.com. They had such wonderful dosage info, and hopefully will be up and running again soon (laura, the moderator of this site, might have some of their old info?). The dr who invented zegerid (a ppo drug like prevacid/prilosec) recommended dosing babies three times a day and always recommended appropriately healthy doses.

To me, the medication spectrum of what some docs are willing to dose, is very similar to the differences you find in sleep recommendations. Some folks want babies to cry it out from nearly day one, and others have you sleeping with your baby in the family bed until they are toddlers or older. These recommendations vary so incredibly widely that in the end you have to find what works best for your family and your particular child with their temperment and health issues.

With my own children we struggled with dosing, and I pushed my ped gi to try the three doses a day with my second child (by this point we’d been going to him with my son for 4 years already, so he knew me.) He agreed to it when I gave him all the printouts from marci-kids institute (Mid-West Acid Reflux Children’s Institute). He even thanked me several months later out of the blue and said that he’d tried the three doses with some other infants and had been successful. I was over the moon happy to think that we’d helped my little baby, but also some other little babies and their moms.

There are so many reasons for parents to be concerned about medicating their babies and many are totally legitimate. I was fortunate that although my husband wasn’t keen on the meds, he wasn’t going to try to stop me when I explained all the research I had done and all that the docs had said. I was going on instincts, gut feelings, documented observations of the children (both our children were on reflux meds as babies) and research. He was going on, “I don’t want our kids on medicine, it doesn’t seem good.” He was a very legitimately concerned father but for him there was a lot more wrapped up in the reluctance: seeing his wife so distraught, seeing his child not thriving and in obvious pain, seeing his life go so differently from friends of ours who had children who slept through the night at 8 weeks or 3 months…..

and being a first time parent its tremendously difficult to see everything go so differently from what you imagined prior to bringing home your screaming refluxer. I am certainly more compassionate to his difference of opinions now, now that everything’s basically okay with the children. At one low point with our second baby, he suggested I stop breast feeding “just to try it” because he wondered if the problem was my milk. I was completely mortified. And he is a really good guy, concerned father, involved father….but coming from a completely different place and opinion about parenting than I was at the time.

We have had to work hard at negotiating our parenting from day one. Thankfully, he has seen the success of many of my strategies—so the proof is in the pudding eventually—and hopefully it would go the same for you. But it’ll take you a bit to get there. The important thing is to outline your priorities together. Sometimes to get to point C or D, you have to move through some other phases A and B or try some things you thought you might never try.

And sometimes parenting is scary. You put faith in doctors, you put faith in vaccines (or not), you put faith eventually in school systems, or home schooling or whatever choices you make. There are a LOT of leaps of faith. Or I should call them, educated decisions where you aren’t certain of the outcome. It’s very difficult marrying two distinct opinions together, let alone when there is a traumatic event going on (babies who scream in pain all day!) and also when everyone is lacking humane levels of sleep.

In the end, I ended up feeling like I was crazy a lot of the time (unless on this forum) because even friends and family begin to wonder why your little angel can’t be like all the other happy babies. We ended up doing testing on both children and found out they both had unusually loose esophageal openings….in other words, all my observations and concerns had been totally legitimate for a physical anatomical reason.

My children also did markedly better on restricted diets—taking out gluten, dairy, soy and beef for my son (who is now 7 and can have dairy occasionally and is still gluten free) and my daughter did much better without dairy, corn and nuts. Neither of them are allergic to these foods, they just had major stomach issues, skin rashes and night waking when they ingested them.

We began solids with my son at 7 months, and stopped from 8-11 months and went back to exclusive b-feeding because there were too many variables causing potential problems and I couldn’t figure out what was going on. My daughter began solids at 7 months and was a very reluctant eater for a long time. She also wanted pureed foods for quite a long time, but by age 18 months and definitely by age 2, they were both eating a wide variety and eating well, eating on their own, etc. Both breastfed until they were 2, pretty much on demand until they were past 18-20 months.

I hope something in here has been helpful! If you have more questions, please post again. Sometimes venting is all people need, other times they really want to get some ideas, strategies, and answers to questions. Let us know what you need and hopefully as a community we can help. Another helpful site with reflux info: http://www.askdrsears.com, http://www.kellymom.com, search for reflux or GERD on each one. Hang in there!

[edited by laura, hellbennt, only to ‘break up’ the text to make it easier to read]

hellbennt2011-09-18 20:31:26

September 18, 2011 at 7:48 am #69059

Anonymous
Inactive

I had a very similar situation with my middle son. We were constantly at odds. I remember calling my mom every day and just crying because the baby was miserable, and not sleeping, which ment I was miserable and not sleeping.

This is what I realized in hindsight: Dr’s don’t know everything. They tried to medicate my child 9 ways to Sunday. I agree he needed meds. I agree I was a PIA for the Dr. I took him to the allergist at 3 months old and demanded a skin test for peace of ,mind. Turns out he was VERY allergic to eggs and milk, both of which I was eating. Once I stopped thoes things, the meds seemed to help.

Hang in there..I understand where you are coming from, and you are not alone!

September 18, 2011 at 10:02 am #69061

Anonymous
Inactive

Thank you so much for all of your responses. I feel like the only people that can sympathize with me are on this site. When I see family and friends, they think my son is just having a bad moment or a bad day…not realizing all his moments are this way. Or I’ll see someone for an hour and they’ll think he seems fine, because they didn’t notice I was standing and holding and rocking him the whole time. My husband has always been my support system, but now I’ve lost that. He’s actually a great father (we also have a nearly 3 year old) and husband in normal life but our lives have spiraled so far from normal that our former selves aren’t even recognizable any more. My problem is that he actually is very involved and that leads to conflict. We have been mostly doing things “my way” and since things are awful, he’s resentful.

We just got into a fight this morning…he stormed out with my older son to who knows where. The baby was screaming his head off and he refused to hand him to me because he thinks the baby is too attached to me. Listening to him scream like that is like nails on a chalkboard for me…I just can’t sit back and allow it when I know I can make him feel better just by holding him. Eventually, he gave in and handed him to me but he’s angry that I won’t allow him to do it his way (let him scream himself to sleep).

Anyway, I’ve done all the research on medications and I believe that we just need to find the right dose. We had 6 weeks of pure bliss when we first started with a Prevacid/Pepcid combo but then it started to go downhill fast and now we’re worse than ever. I’m hoping my husband comes around eventually but I’m not sure he will. And I hate not doing what I believe so strongly is in the best interests of my child.

If we can just get through this, I know everything will be okay…but this reflux nightmare just never seems to end. I can’t imagine going 18 months like this!!! Thanks again everyone.

~Diana

September 18, 2011 at 12:45 pm #69063

Anonymous
Inactive

Your description of the morning breaks my heart. I hope I am not overstepping my bounds here….but there are times in life when we all need additional help. Looking back I wish I had asked or begged my mother or sister to visit or to help more (I live 3,000 miles from family). It is actually one of my biggest bits of advice now to new mothers….please don’t be like me and try to do it on your own and be miserable…ask for help when things feel so terrible. There are also times when huge amounts of stress can cause us to act in ways that are not our norm….these are the times when its okay (and sometimes the best idea) to turn to a trusted friend, pastor, priest, rabbi, counselor, therapist etc. The best interests of your children are for a safe a loving environment with the family intact….sometimes we need a bit of support in getting to that place. Is your prevacid compounded? It can be very ineffectual that way…I know Laura has a post on that one. Also, sometimes thinking outside the box is necessary, could you visit your parents? Any friends who could have you for a few days in order to spare your husband and 3 year old some of the crying? I slept in a different room for a very long time. Several friends and I am sure family (although not to our faces, but we got some interesting comments) felt this was waaaaay weird. But my husband had to go to work, and I had to care for our screaming refluxer. I slept in the baby’s room until he was two. Now it sounds incredibly dramatic, but at the time it seemed the one thing that was helping. At least one adult was getting proper uninterrupted sleep. I am not saying you should do what I did, just simply pointing out there are more than a few ways to do this, and sometimes things don’t occur to us when we’re so sleep deprived that we can barely function. Please hang in there and please let a close friend or family member help you if possible. Adults can hold crying babies for an hour. or push a stroller for an hour at the park. sometimes an hour is all you need to come up for air. 🙂

September 18, 2011 at 8:39 pm #69064

hellbennt
Keymaster

hang in there!

show your husband the research, email dr philips and get HIM to speak w/ your ped GI and also perhaps HE could give you some ‘proof’ for your husband? I don’t know…

email dr philips Dr. Philips: [email protected]

and/or call the office: (573) 884-0672

please get some help! it helps so much to find ways to communicate to your husband other than what you’re doing- I went to counseling when it was time for me to go back to work- I didn’t want to (return to work) & my husband didn’t understand and, the more I told him, the more he got angry because we *needed* my income and then it was almost like I was telling him that he wasn’t making enought $$ etc, but that wasn’t it- it was that I finally had a happy baby (at 12 months!) and I wanted another year…long story short, I went to counseling, figured out how to explain myself and I did take another year off (we had to really budget but we did it)…please get some help! please find a way to help your baby…hang in there!

September 20, 2011 at 10:42 am #69080

Anonymous
Inactive

Thank you. I have been staring at this list of recommended therapists on my desk for months now, but now you all have motivated me to call. It’s hard to find the time when any free moment seems to go either to my 3yr old or to sleep, but I think I just need to make the time. I think my husband needs to come with me, because we really can’t make any headway any more. This morning DH told me he’s not even sure he has reflux at all! According to him, he doesn’t sleep at night because I don’t let him cry it out and he’s upset all day because I don’t leave him to fuss enough. He said “If I had 5 days with him on my own, he would be fixed.” How do I reason with this insanity?

Sadly, I don’t really have any good friends and no family close by. My parents and inlaws are only 2.5 hrs away, but we only get 1-2 visits per year. I’ve never in my adult life asked my parents for ANYTHING, until DS was born. They never offer to come and when I beg them crying they’ll come for a day (never stay overnight) and always seem inconvenienced. If I can manage to go to them, things are better. Maybe I’ll try to plan a trip. Last time I went, the baby cried the whole way, which made my older one cry. I pulled over so many times it took 6 hrs to get there. I swore “never again” but maybe it’s worth it…

A few questions for you, Anne. What kind of testing do you do to show the unusually loose esophageal opening? I feel like I have something to prove lately. Although my DH will never allow anything invasive. Also, during those 18 months of horrible sleep, did you ever just let the baby cry?

~Diana

September 20, 2011 at 1:33 pm #69081

Anonymous
Inactive

Hi Diana,

Please make the call….its very difficult to do and sometimes scary, but finding the help you need will only help things move in a positive direction. My husband and I have also gone and it’s been the best thing for our marriage. If family is not supportive, then maybe they are not the right route at this time. Only you can say for sure whether it’s worth it to use them at a time like this. Maybe another mother or someone in your church or preschool or neighborhood community that you feel connected to. Any babysitters you have used with your son? Responsible college girls who could take the baby for a walk around the block while you sit in silence for 20 minutes? Now is the time to think about how to help him but also how to help yourself. Counseling will go a long way, but also getting some breathing room in your everyday life will help tremendously.

I’ve included the whole story of testing for both my kids below….so this is my warning—it’s long! Read in installments if it’s too much! ☺Testing like this is very invasive & I personally would recommend trying the higher dose of meds, or trying zegerid at a 3X a day dosing, before going into testing. I also emailed and talked with Dr. Phillips, which Laura recommended to you. It was great to get his advice and perhaps his office can email you some of the dosing info that they used to have posted on their website. I would ask specifically about the higher dosing of the ppo so that your husband could feel better about that. Dr. Phillips invented/developed/discovered the mix for zegerid, which is just like prilosec (omeprozole) but with a stabilizer. You can take it any time of day, regardless of whether you have just eaten. Timing the feeds is very difficult for the babies on these meds but with zegerid you don’t have to worry about that.

For testing, my son went through an upper GI, endoscapy, and ph probe test—all pretty invasive tests and all at the children’s hospital. He “had to get the upper gi” at 5 months just to get the ppo (prevacid) meds prescribed. When my daughter was born (second child with reflux) the ped wanted to do an upper gi and I felt certain that it was reflux, so I called our specialist and said that I wanted to try zegerid without the upper gi. She was only 6 weeks old and we felt the upper gi was so invasive and wanted to avoid it since I really knew what was going on. The specialist, who knew me well at this point, was fine with prescribing zegerid without an upper gi. Again, this shows a huge difference in docs and their approach, and also a difference between a regular ped and a ped gi.

OK, so after having that done when my son was 5 months old Lucas was put on prevacid –we weren’t truly helped until we got onto zegerid. Prevacid was ok, but it was compounded and that is often very unstable– Laura has a post on the science behind that. My daughter went straight to zegerid because we’d had such a great experience with it with my son. So she was about 9 weeks old and going on zegerid 3X a day. My husband wasn’t thrilled, but he soon saw huge improvements in her—you couldn’t ignore the results.

So, once my son was on zegerid at around 8 months his reflux started to be more tolerable and then I took out dairy and soy from both our diets, I was nursing. When things were still very difficult at 10 months old he had an endoscopy & ph probe. That’s the test that showed he has a hiatal hernia (unusually loose opening of the lower espohageal sphinctor or LES valve)– the opening into the stomach from the esophagus. An endoscopy involved IV, what they call “twilight” sedation, so they aren’t totally out, but mostly out of it, and the tube goes down the throat and into the stomach and has a camera on it. AFter this procedure, on the same day my son had a ph probe done, which tested acid levels in his esophagus. This involved sending him home from the hospital with tubes down his nose into the stomach and a little data box connected to it, he wore that in a tiny fanny pack. We had to go back the next day to take it all out and get the data. The ph probe showed that in 24 hours he refluxed 230 times (and this was at 10 months when he was sitting and standing most of the time!).

Between the hiatal hernia and this ph probe reading, I was finally justified in my concerns for him and totally legitimized with husband, family, friends, anyone. I wasn’t happy to know these results, but found incredible relief in knowing that it wasn’t “all in my head”. No one had ever said that to me, but after a while the implication from folks who say things like, “I’ve just never had that problem” “My babies just always slept when they were tired” and those sorts of things you can start to doubt yourself.

We were then sent to a surgeon to discuss surgically repairing the hiatal hernia, which is a bit controversial. He took one look at our son, who was 50% for growth, and said he would not recommend the surgery for our son and to come back in a year if things got worse. He said that although we’d had a tough time the surgery was for babies who were failure to thrive, babies who had been repeatedly hospitalized, babies who were more sick than ours. Turns out this was the best advice EVER. By age 17 months the sleep was still terrible and I finally took all gluten out of his and my diet. This was our magic last thing. Getting bigger helped the reflux a lot. But taking gluten out of the diet was AMAZING. Within a week he was sleeping better, not great, but better. Within six months I could see major improvements. I weaned him at age 24 months, and did the gluten/dairy/soy/beef free diet with him for six months. So we had a combination of food intolerances and reflux which really clouded the whole thing. He tested negative for food allergies and has been tested two times for celiac disease (a condition where removing gluten clears up a lot of problems). So, for now, he’s dairy and gluten free in his diet (he’s now ok with soy and beef). At this point he’s still on zegerid and could be for a long time. I get nervous about that, but the ped gi tells us that the damage from acid over time is much worse than the potential problems from taking the meds.

For my daughter, she skipped the upper gi, was on zegerid 3 times a day as a young infant, moved to 2 times a day maybe around 18 months of age. She had lots of ear infections. Double ones, and after a while she wasn’t responding to antibiotics. We did this crazy injection of super antibiotic for the last one, and then two weeks later she had a double ear infection again. The ped recommended ear tubes. She wasn’t in day care, she was home with me, she’d been breastfed, all the things that are supposed to help against ear infections like this. But reflux can really complicate ear infections as well. When they did the ear tube surgery, the specialist did an endoscopy as well—she was 17 months old. We didn’t do the ph probe for her, the specialist said the endoscopy was enough to see why she had the reflux and the ph probe would have been overkill for her. He then said she didn’t have the full hiatal hernia, but had a very loose, unusually loose, opening to her stomach. I’m not sure the difference between her loose opening and my son’s hiatal hernia, but they were both very justified in still showing signs of reflux and still being on meds. We are trying to cut back on her meds right now and I’m seeing signs of reflux again, so we might have to go right back to her old dose.

As for crying….I did not do CIO with my first at all. We all have our philosophies and I don’t want to start an internet uproar on this site, but my personal feelings with my children were that they were in pain and I did not want to leave them to cry. With my second, I tried the baby whisperer phil
osophy early on and it did not work for us well at all. I was so disappointed…really crushed that I couldn’t get it to work. I’ll leave it at that, it was awful. I also let her do some CIO with napping around 18 months old and after three weeks of hearing her scream at naptime I gave up. It was clearly not working for her and definitely not for me! We were the wear the baby in a sling, nurse on demand (within reason) sleep with the crying baby family. These choices are very different from lots of people. I certainly am not recommending them (except for the sling and nursing! I can 100% say those were great choices if you can make them). But I am in no way suggesting that sleeping with your baby is better. Or that doing CIO is “wrong” or that never letting them CIO is “right.” I did what felt right for myself and my babies. I can definitely say that both my children needed me in order to fall asleep. I fully agree with the thinking that they need to self soothe at some point. I guess lots of people reach that point before I did! Looking back, I probably should have helped them learn to sleep without me at an earlier time. That being said, they were so miserable as babies that I had no idea how to get them asleep without the nursing/burping/nursing cycle.

Ok, this is waaaaay too long! I hope something in here is helpful. I hope you can hang in there! Let us know what you need.

September 20, 2011 at 2:02 pm #69084

Anonymous
Inactive

I have held back on responding for awhile because this upsets me so much. Letting a child that is in pain scream it out is cruel!!!! And not supporting you is absolutly ridiculous. If he thinks he can solve it on his own, let him try. I know it will kill you to do so, but take your 3 yr old for a fun weekend somewhere and let the husband deal with this for 2 to 3 days. I am fairly certain that when you get home, you will have his full support to do whatever your instincts tell you. That is what it took at my house. Ok.. enough said about that.

I have been where you are. Everyone thought I was bat ass crazy except for one friend that always said “Listen to your gutt. You are his mother and you know best. Period.. End of story. Dont stop seeking answers until an answer is found. ” She stayed after me every day. After awhile I quit talking to my other friends and family about it and went at it on my own. I figured if they couldnt support me, then to heck with them. I have a ton of nurses and pharmacists in my family… One would think that would help but it made it worse.

The turning point for me was when I had 2 friends dying of cancer at the same time in the same hospice house. I knew that both of them were at the end but that morning I had to take my son to the ER yet again for IV fluids because he had not drank in 24 hours. When I got to the ER, I received a call that one of the friends passed away. His cancer was Esophogeal cancer caused from untreated acid reflux. When I got home from the ER I got a call that the 2nd one passed away. I didnt get to say goodbye to either one of them. I went to 2 wake services the next day and 2 funerals the day after. That night I hit a wall. I fired my GI and my Ped. I contacted the folks at MARCI-Kids and asked what it would take to be seen by the GI docs at the University of MO. I was willing to make the drive and not one person was going to stop me. They asked what was going on, I sent them all the information, they sent me the Caracream and told me exactly what to do, told me to try it for 2 weeks and if I did not see a 180 degree change in him they would work me into the schedule ASAP. 10 days later I had a completely different child on my hands. It was stunning to everyone around him. The screaming stopped and he stared to eat. I then found a new ped who was absolustily incredible. We were partners. I have never looked back. My son never went back to the ER after that and he never had another feeding strike. Between me, the ped and the folks at MARCI Kids, we had this thing beat. Ryan and I had a long road to climb to get him to trust eating again, but we got there together with the help of his big sister and a feeding therapist. That is story for another day. Ryan was 3 before I took him off his meds. I wanted him to be old enough to TELL me if he was hurting. No way was I going to just follow some stupid statistic that X% of kids out grow it by a certain age and simply take him off the meds.

OK that is enough for now. Be strong Mom!!! Your baby is counting on you to be his voice. YOU CAN DO THIS!!!! Dont ever apolgize to ANYONE for doing what you feel is best for him.

vigilantmom2011-09-20 14:03:44

September 20, 2011 at 2:47 pm #69085

Anonymous
Inactive

1. My sons reflux was out of control until he was almost one. He was on high doses of meds and never responded the way expected. He wouldn’t nurse unless asleep, and we ended up in feeding therapy because this aversion persisted when we started solids around 8 months. He stayed on meds until he was two and was eating normally. And aside from my husband, I’m the only person who really always thought things were just not right. Now when family members look back at photos of my son that first year they say things like, “wow i never realized he looked so unhappy” and “look at that poor little sad face”. Well no sh#t sherlock! He was miserable! It was an AWFUL year, and that leads me to

2. Go to therapy. I finally went, once my son started sleeping better and feeling better. I totally cracked once my son didn’t need me to be crazy mama bear all the time. It changed our family’s life. Things were so depressing at home, and it really got me to talk about how much everything hurt, how helpless I had been feeling, etc. This time around I already told my husband to tell me if I get scary gloomy again…we are at it with reflux baby #2 now and though I am prepared, I am still terrified.

3. This will pass…

September 20, 2011 at 2:57 pm #69086

Anonymous
Inactive

PS. What area of the country do you live? With all the people on the boards perhaps someone lives near you and has a good Ped or GI that they can recommend to you.

September 20, 2011 at 4:05 pm #69087

Anonymous
Inactive

Anne – Thanks for your response. It is REALLY helpful to hear your stories. You are an inspiration for being so strong.

Vigilantmom – I tell my DH ALL of the time that I would LOVE to let him take the baby for a few days…because I KNOW it would prove him wrong. But I’m not strong enough to put my baby through that. Plus I BF exclusively.

This morning when I was talking to DH, I referred to the reflux as a “disease” (thus the “D” in GERD) and he said “OMG, it’s not a disease, it’s just baby heartburn.” When I read your story, the part about the friend with throat cancer from unchecked reflux got me thinking. I don’t think DH gets the possible implications here. The constant arching is definitely creating a muscle tone problem lately. He will prob need PT. I’m not sure when he will learn to sit because when put in that position he lunges backwards with superhuman strength. He has no ability to make progress on speech because he hasn’t really had a voice for 3-4 months now. He could be developing ulcers from the acid erosion etc etc. I’m worrying about all these things.

Livalil319 – Thank you. I’m going to start repeating your point #3 in my head. 🙂

I live in CT. I’ve been to 2 ped GIs. The second was recommended on this site (Dr Escalera) and while she was way better than the 1st, and she gave good doses and was very nice, she had a good bit of bad advice (let him cry it out, pushing solids etc). Mostly though, I just wish I could find a doc who treated the situation with more seriousness. Every doc seems to have this “Eh, it’s just reflux…he’ll outgrow it” attitude. Like, can someone explain why he’s getting worse instead of better?? And every doc seems surprised he’s lost his voice…like they’ve never heard of EER?

Anyway, thank you all!

September 20, 2011 at 6:34 pm #69089

Anonymous
Inactive

I didn’t read all of the replies, but I wanted to tell you that I understand the hell you are going through. If it weren’t for this site I would have lost my mind 6 years ago when I was struggling with my 2nd reflux baby.

Tell your husband that I was a nanny for 15 years before having my own children and I FULLY believe in teaching babies to sleep alone in their own beds, and I prided myself on being able to teach almost any baby (friend’s babies, babies I cared for as a nanny etc.) to sleep through the night. UNTIL I had my first reflux baby. My middle child had severe reflux, aka baby heartburn. Not to be a smart *ss but ask your dh how well he sleeps when he has heartburn). Anyway, my ds was up every 20 – 60 minutes all night long, every single night of her life and it was due to reflux, not being spoiled or too attached to me. One night I put her to bed when she was 8 or 9 months old and she slept through the night and she did every night since then because she had finally outgrown her reflux. It’s not that dramatic with every baby, but it was with her. She just outgrew it and started sleeping. She had lots of other reflux symptoms which also disappeared at around 9 months (arching, refusing to eat, chronic irritability, etc.).

Then I had a son and he also had severe reflux. He slept better than she did, but still he slept poorly and he developed a severe feeding aversion. He would not eat, period. He almost ended up on a feeding tube. I managed to avoid that by pumping my breast milk and feeding it to him by spoon because he would not take anything from the breast or bottle.

Anyway, Prevacid did turn things around for my son, but he needed three doses a day. Per Dr. Phillips recommendations I talked my doctor into giving us 30 mgs per day which we divided into three 10 mg doses daily. Have you shown your husband the research and advice of Dr. Phillips?

I’m so sorry that your husband is not being supportive and is actually making your hell far worse. I say hell, becasue I remember what caring for a baby with reflux is like, and it is hell, and no one understands. I felt like I was on an alternate universe in my own little hellish world where everyone thought I was insane because my baby never stopped crying, wouldn’t eat and never slept. No, I wasn’t crazy. My poor baby was suffering and so is your’s. I pray your husband comes to his senses and lets you up your poor son’s dose of Prevacid. My husband also was not supportive and actually made my life even more miserable by minimizing what was happening and by refusing to offer any assistance whatsoever. Here’s my very first post here in case you’re interested. You will see that I truly understand what you are going through.

https://www.infantreflux.org/forum/forum_posts.asp?TID=4806&KW=every+feeding+ordeal

Reflux can reak havok in families. It makes me so sad to hear that your husband used to be supportive until reflux came into your lives. I would hightly recommend that you let him read some of the stories here on this forum so he can see that you are not crazy, that you’re not imagining it all, and that your son is not spoiled or overly attached.

Also, work on getting that dose of Prevacid up, and preferably three doses per day. And make sure you are giving it on an empty stomach and then feeding him 30 minutes later. This is what Dr. Phillips recommends.

I hope you find relief for him soon. I know how hard it is.ndrose2011-09-20 18:40:05

September 20, 2011 at 7:57 pm #69090

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I’m so so sorry you’re dealing w/ this! 🙁

I don’t know what to say to you re: your dh. I can tell you what I would do but not sure that would help (I would probably take baby, leave for weekend even if it meant to a hotel, give max dose of PPI, etc).

Anyway, as far as reflux control: are you trying small shots of Mylanta to give him some short/small relief (to hopefully alleviate permanent damage)? Also, have any ped GI recommended pH probe &/or scopes? Both my refluxers had these eventually & they at least help to confirm (& the biopsies give peace of mind ruling out bigger things- EE, etc).

As far as his comfort- is he constipated? My exclusively breastfed son (my 3rd) was EXTREMELY constipated. It was still soft, just only went infrequently, strained, foul smelling (but no mucous). Once we got that under control he literally went from up every hour @ night to sleeping 11 hrs straight – it was crazy. (that being said, he was also on a high dose of PPI & I was on very limited diet… BUT I had been doing both those things prior – so the cleaning out his colon was the new change).

Speaking of poop ;)… are you doing any dietary modifications? How’s his stool? normal? mucous? blood? stinky gas? (no solids correct?).

Okay- hang in there mama- you’re doing great.
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