Having a rough time...long vent.
After months and months of not knowing what was wrong with DD, we finally got a diagnosis of her having an anterior placed anus. Basically, pooping was excrutiatingly painful for her and she conditioned herself to NOT poop at all costs. She would spend all day grunting, crying, straining, arching her back, going rigid, etc. The symptoms also were worse at night...she honestly didn't sleep for more than 20 minutes at a time. Finally a gastro doctor diagnosed her when she was 9 months. We've been trying to treat it for a month now and there has been no improvement! Despite being on medicine that is supposed to make it so she physically can't hold it, she still does!!! And, the medicine that is supposed to be odorless and tasteless, she started refusing to take because it needs to be dissolved in 4 ounces of liquid that isn't formula and she hates juice and would only drink an ounce or two of it if it was in water. It got to the point where I was trying to syringe 3.5 ounces of liquid in her mouth. A few days ago, we started a new medicine...one that can be administered by the teaspoonful. She takes it fine, but it is working even worse than the other! She is miserable all day and night. It's really taking a toll on me too. I haven't slept in my own bed since she was 4 months old (I sleep in the guestroom so that I can go to her without bothering DH when she wakes up every 20 minutes). She seems so uncomfortable all the time. The doctor says it's psychological/behavioral at this point and assures me she's not in any pain when she's pooping now. That makes it almost worse to deal with. And, because her tummy is all full of the poop she's holding, for the past 3 days, she won't eat. She went from drinking 24 ounces of formula to 10! I just feel like we're never going to beat this. I sit and cry because my kid is just so miserable all the time. And, I can't help but get frustrated with her even though I know it isn't her fault.
Re: Having a rough time...long vent.
Could you possibly get a second opinion? This may ease the comfort of really knowing that she isn't in pain. Or could they possible give her something else to help soften the stool?
I know you have probably asked all of this before, I was just shooting for something. I hope that both of you get throught this sooner than later.
By the way DD is super cute!
Poor baby and poor mommy. She's?miserable, you're miserable- that's a horrible situation.
When you have a baby with special needs it's all about baby steps. Try not to get too wrapped up in the overall situation. Otherwise, focus on the little accomplishments. If all she ate today was 10 ozs celebrate that she ate anything at all.
And was there ever a time when things were working? I know you have to give a new treatment a chance, but if it seems like it's making things worse or more difficult then I would go back to square one.
I think most of all you need a big hug. I know it's easy to get defeated when nothing seems to work. But you are doing a great job because you are putting her health needs first.?
You are an amazingly strong mommy! I hope it will all get better for you very soon!!! You have a beautiful little girl!!
Thank you for your words of encouragement. You're right...I guess we just have to take it baby steps at a time and not focus on a big picture...it's too overwhelming that way.
We go back to the gastro in a couple of weeks. In the meantime, his nurse has offered to check in with me on a daily basis to see how DD is doing and to alter the dosage of the medicine each day as needed.
I'm sorry you and your sweet little girl have to go through this.
My co-worker's sister just went through this same situation with her son and he had it surgically corrected. Have you spoken to a surgeon? My son was born without an anal opening at all and he had surgery also. It is actually a very common issue and, although nobody wants to send their child into surgery, it is usually correctable.
Let me know if you have any questions that I can pass along.