What to do next?

[Anonymous]

I posted this in the introduction threads, but it appears this place gets more views. Hopefully someone can help me here?

Hi everyone! My name is Ashley, and I have been browsing your amazing forum here (which I was stoked to find!!!!) for several days trying to find something that will answer some questions. Unfortunately….I have found nothing. So I’m reaching out to all you who have obviously gone through a lot.

We’ll start off simple. I am a single mom of my 13 month old daughter, Evelyn, born January 24th, 2009. She was breast fed until August. Before August she has mostly a normal baby, but was really quite colicky, gassy, fussy…. Anyway, I had had enough with all the crying so I thought maybe it was my breast milk, so I quit nursing her. That’s when everything bad started. She (what I know is her reflux now) would throw up all night. I would change the sheets several times a night because she was “coughing so hard she threw up” is what I would tell her pediatrician. At first we thought it was a breathing problem and that’s why she was coughing, and so she was given an inhaler and a nasal spray. Those did absolutely nothing, so I went in for a follow up about a month later when the vomiting was just getting worse. After a lot of discussion, we came to the conclusion that she had acid reflux and so he put her on 2.5ml of Prevacid once daily. Nothing happened. Afterwards (about Nov) he put her on 5mg daily (2.5ml twice per day) and still nothing. Then he tried 7.5ml twice daily, nothing. So then onto 15ml dissolvable (sp?) tablets, (about late Dec/early Jan) and it got even worse. In the time she was on those tablets, she had about a week and a half of chalky white poop, constant vomiting, lethargy, CONSTANT screaming, diarrhea…. We ended up going to the children’s hospital’s ER where the Dr actually told us that there was nothing wrong because she was gaining weight, she wasn’t jaundiced, and she no longer had white poops. (they had been gone for less than a day) Frustrated, I made an appt with her regular pede once more, and I took her off the Prevacid tablets immediately, and she was put on “Lorec.” Right after that, she had some blood testing done to check for Celiac and Milk/Soy intolerance and allergies. They came back negative. He called that an end to his research pretty much. She’s on 2.5mls twice daily or Lorec, but she is still not better. Her pede told her “she’ll outgrow it,” even when I was in his office in tears of frustration.

Now, it sounds pretty normal and fine, but the thing that gets me more than anything is that she has been diagnosed with Sandifer’s Syndrome also, however, it just doesn’t seem right to me. I don’t have doubt that she has Sandifer’s, yes, but there is more to this than that.

Whenever Evelyn sits, such as in her stroller, carseat, high chair, ANY chair…..she will stiffen her entire torso, and pull on her clothes. If she isn’t wearing clothes, she’ll pull on anything that is near her. For example, if she is near to me, she’ll pull on my hair or my clothes. If I let her be, she’ll go as long as she’s in the seat for, until I take her out, and she’ll act as if she’s not in pain or anything. If I interupt her and take her hand off of her clothes, which usually has a death grip on them, she will cry real tears and is in obvious pain, and then she will resume back to what she is doing. She will pull her clothes right off. I live in a northern climate, too, and she doesn’t care what the weather is, she’ll strip all of her tops off in a matter of minutes if I’m not paying attention, and then she’ll cry because she’s naked and cold. It’s embarrassing, too, and I have had people ask me if she is having a seizure. During these (I call them fits) fits, she will usually have her eyes closed, and she will breathe in short, quick, grunting breaths. Sometimes she will give up and just start crying. It’s so very very frustrating.

She is currently 22Lbs and she’ll be 14 months on the 24th, and I just don’t know what to do. The medication does nothing. Absolutely nothing. Being a single mom (the dad has never seen her, and wants nothing to do with her, so it’s just me) I don’t get a rest from it. It has taken over both of our lives, but I’m just so tired of seeing my little girl in pain.

I’ll post a few pictures. The first two of her are from when she first started doing it and I had no idea what she was doing. The 2nd one in particular is an example of not necessarily pulling on her clothes, but she raises the link toys over her head and stiffens her body and rocks back and forth. The other two are as recent as I could find, but I don’t have a working camera anymore. They’re pretty much exactly the same as she does now anyway. I know I have a video on here somewhere, but it being 2am, I will look for it tomorrow.

Pictures:

http://img22.imageshack.us/g/phone026.jpg/

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