Nobody Understands

[Anonymous]

Diana,

My son also gets raspy voice when his meds aren’t high enough– if he was unmedicated I’m not sure what would happen to his poor vocal chords. His upper gi showed regular reflux and also nasopharengeal, into the throat/nasal passages. As for your doc, if she’s willing to rx 3X a day, and read and listen to the stuff from Dr. Phillips, then you might stay with her and live through the attitude and CIO advice. Get what you need from her and you don’t have to do everything she recommends. On the other hand, we left a ped gi because she told me very flippantly on my first visit, “and you’re gonna have to get used to the crying at night, that’s what refluxers do”….and we never saw her again. Hang in there.

[Anonymous]

Christine – Thanks for your comments. I read your old posts and it strangely gave me comfort to see how miserable you were and how back to normal you are now…if that makes sense. Also, I also feel AWFUL that I cannot give more attention to my older son. It truly breaks my heart. He is so well behaved and understanding and loving towards his little brother in spite of everything…it’s truly unbelievable.

Erin – What did you do to “clean out his colon?” My son is exclusively breastfed and he poops very infrequently…on average maybe once per week. But the poop is normal color and consistency, no mucous. So I was told this is normal. My ped GI just labeled him as having a “slow gut.” His gas is smelly though…but it tends to get smellier the longer he goes without pooping, so I just assumed this smell had something to do with all that waste sitting inside him for so long? This is why I think he will not do well on solids, but what do I know?

I should say, my older son was also a refluxer. I played around with my diet and nothing helped. Then one day, I bit the bullet and took EVERYTHING out of my diet (TED) and within 2 days he was cured! Never figured out what the sensitivity was, because by the time I added everything back, I guess he had grown out of it. Anyway, this time around with my second son, I did the TED almost immediately (maybe a month after he was born), but it didn’t work. I had a traumatic birth and I was in the ICU for a day before I got to see my son. For that first day, they gave him formula. He had severe reflux from that formula and had to be monitored in the nursery for a short bit…they never told me why…maybe he choked or something.

Anne – yes, I agree, I’m sticking with this doctor. On my first visit with the first ped GI we saw, I was describing how miserable my son was and how he cried all the time etc and she said to me “What you need to do is hire a nanny, hand the baby over, and go out to the spa or the gym. That way you just won’t have to HEAR the baby crying.” Good grief…

[Anonymous]

The “slow gut” your doctor mentioned is probably something called DGE – Delayed Gastric Emptying. It means that food is digested and moved through the GI tract much more slowly than average which not only contributes to reflux symptoms but can cause constipation. My son was also very constipated due to DGE. When he got older and his pain was controlled on Prevacid I started experimenting with ways to get him to poop more regularly and I found that flax seed oil, Benefiber, and pear juice (a little of each twice per day) did the trick. Foods that always bound him up included rice, peas, corn, potatoes, bananas, apples and berries.

Eventually they outgrow DGE just like they outgrow Reflux, so try not to despair. It will get better. I remember when all the nice ladies on this board used to tell me that. It was little comfort at the time, but it did offer me some hope.

Hang in there and keep coming back for support and advice if things don’t improve!

Oh, and don’t worry about your older son. He’ll be fine. My two girls adore their brother and have never been jealous of all the time and attention he needed and they don’t even remember that they nearly had to raise themselves for a year!!

[Anonymous]

If it makes you feel any better about the guilt thing with your older child….I have this story. when my second was 8-11 months old I had chronic plugged milk ducts and just imagine a really bad scenario. I was taking scalding hot baths two times a day (or more if i could fit it in) doing all these natural/herbal remedies, on special diet, etc. and she had to be alone with me, in a quiet room in order to nurse — she was so distracted at this age, anyone being there made it awful for her to get a full feeding. If there was any noise or anyone else present, even an adult, she wouldn’t nurse as well. It was total misery. Anyways, I was always trying to explain to my son that he couldn’t interrupt me while nursing her in the afternoons after his preschool. He was 4 1/2 yrs old and sort of understood, but after 45 minutes or whatever, he would come into our bedroom to find me.

I finally had a huge crying encounter with him one day where I was dealing with a plugged duct, trying to get her to nurse in order to loosen the plug– and he came into the room and she was then distracted and didn’t want to nurse again until the next feeding….which meant a huge block of hours until she nursed again on my affected side cause I only nursed one side at a time…. I end up yelling at him and crying in front of him (which are both rare and very upsetting to me!) and the next day he comes back to my room as I’m getting ready to nurse at that same time of day and says that he drew a picture to remind himself not to bother me while I was nursing. He shows me a picture of a stick figure with the circle around it and the line across the middle, like a ban sign….you know those? where you see a stick figure walking and the red circle around it with a red line through it on a sign in town or something? That’s what he drew, of himself and then he tells me matter of factly, “Mama, I just need the tape so i can put it right at my level on your door so I will remember not to bother you so everything will be okay.” I thought that was a huge low point. I felt soooo horrible for him. I think I cried again after he left the room after hanging up his little ban sign on my door. My point with this story is that they are more resilient than we can imagine, and yet, gosh it can be such a wash of guilt to try so hard to take care of one, while the others are fending for themselves!!!

[hellbennt]

any updates?

[Anonymous]

My heart hurts to read your posts. I know exactly how you feel when you say nobody understands.

When my daughter was born, I knew something was wrong. I kept telling everyone, including my husband and her doctors (which I was forced to switch so many times) and basically everyone started seeing me as, what I like to call, “Crazy Mom.”

After awhile, I was basically on my own. I was determined to figure out what was wrong with my baby, since apparently nobody was going to help me. My husband even got so irritated with my persistent — and at times, hysterical — search for the truth that, at one point, he snapped at me, “Everybody says she’s fine, she’s just a baby, except for you. So why do you keep looking for something? Do you want something to be wrong with her?”

That hurt, really badly. I felt like I’d been slapped. In a way, I had. The person who was supposed to be there for me — and especially be there for her — had just betrayed and belittled all that my baby and I were going through.

Well, in the end, it turned out I was right. My daughter had severe milk protein allergies that had caused GERD and Sandifer’s. If she had continued down that path, who knows what permanent damage would have been done?

My point is: you are his mother. You know. They don’t. DO NOT listen to them if your heart is telling you otherwise.

And don’t be fooled into thinking someone else will look out for him. I didn’t have an aversion to doctors until this nightmare happened, but I must have switched so many times and taken her to so many “experts” and “specialists,” and I was nauseated by how many of them simply refused to hear what I saying. You – and ultimately you alone – must help him. You and you alone know what he is feeling, what he is thinking, and what he needs most. I know you get tired of the guessing game, of the responsibility, and – worst of all – of his unending anguish, but you and your baby will be fine as long as you do what you think and feel is best for him, and ignore those others! Follow your sharply-honed maternal instincts, and listen to your heart.

You are not alone,
Jessica

p.s. — About the whole crying thing, read this article, and show it to your husband. It’s about the “cry it out” approach vs. the “crying in arms” approach. Important: Keep in mind as you read that this article IS NOT ABOUT BABIES WITH REFLUX. It’s about “normal” babies, so think about how much more traumatic it would be to use the “cry it out” approach for a baby like yours or mine, who suffer from so much pain and trauma: http://www.awareparenting.com/comfort.htm

Once again, you were right. Hug that baby all you want. Ignore those idiots who tell you otherwise.

[Anonymous]

Hi all, It has been awhile but just wanted to give an update. My son is now 8 1/2 months old and we FINALLY found some relief with compounded prilosec. He hates the taste, so it’s a constant battle, but he’s been doing better. Way happier during the day, arching less, his voice is much better
(though not perfect) and he’s babbling dada now! A huge relief because I
was so worried he would be speech delayed since he had no voice for so
long. I’ve also been seeing a therapist which has been wonderful. My husband and I are certainly doing much better. My son is still a HORRIBLE sleeper. I think his reflux is worst at night. We co-sleep now and I am the human pacifier ALL NIGHT!! Once in a while I can sneak away for 20 minutes or so, but usually when he sleeps, I have to be with him. He tosses and turns all night, but I’m still sleeping better than before, so progress. And just as things were looking good, we started having major issues with solids. He would vomit 2 hours after every solids feeding. We recently saw a great allergist who diagnosed him with FPIES. Ugh! Not sure if this is related to his reflux but it’s just another sign of his sensitive digestive system I guess. Thanks to all that have helped me! This site has been a true life saver!!
~Diana

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