Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, November 6, 2012

New medicine

It's called Periactin.  Generic name is Cyproheptadine. Technically it's an antihistamine used for allergies and sometimes is prescribed for migraines.  But in the tube feeding world, it's widely used and it works really well as an appetite stimulant and decreases vomiting.  Our new GI doctor, here in CA, prescribed it and we just started using it last Saturday.  I'm not sure why our previous GI dr. never prescribed it or even mentioned it.  Whitney obviously has slow motility because even feeding her the slowest rate, she vomits about 2 to 4 times a day.  So this med increases the kids appetite which means they are digesting their food better/faster to make them hungry.  Lots of kids who are trying to be tube weaned take this to increase their oral intake of food.  For us, it's actually helping Whitney to not throw up.  She still doesn't eat by mouth but she is finally digesting all the calories and nutrients her body needs to grow. It's only been a week but it's been wonderful.  I pray this medicine will work for a long time and that she won't get immune to it.  Every time we try something new, it only works for a little while before she's back to vomiting several times a day.  Like, every formula change (similac, alimentum, neocate, goats milk, compleat), or new medicine (prevacid, erythromicin) or different way of feeding her (slow or fast, bolus or slow drip, pump or syringe), or surgery (g tube, botox injections in her pylorus, removal of adhesions from her intestines), works at first, she'll stop vomiting, but a week or more later, her body still vomits.  In a previous post I asked which would be better; a fundo or a GJ tube.  I couldn't stop thinking about how much I wanted to avoid both of those options.  Like I couldn't even think of them being options because I really wanted something else to work, something like a medication.  I don't think the fundo or the GJ tube would really solve anything, she'd still vomit and retch with them.  But the thing is, I just can't stand to take my baby to the hospital.  I know she's been through all these surgeries and stuff before and I've tried to be super brave for her, but I just can't anymore.  It doesn't get easier every time, it gets harder.  Anyways, so since she has been on this med, she only throw's up once a day or less!  And it's usually caused by her getting hurt and crying too much.  "Normally" she'd vomit every single morning, and then a few times through out the day just randomly.  This past week she'll only vomit if, say, she falls of the couch or piano bench or accidentally pull her hair or stub her toes or fingers (you know toddlers).  She's also getting a little more adventurous at licking new foods.  So far the only side effect is that her nap time is different, like one day she'll sleep for 4 hours, then the next she won't even take a nap.  Which really stinks for me because I really depended on those naps at this stage in my pregnancy because I don't get much good sleep at night.  But luckily, Whitney will hang out in her crib happily for a couple of hours awake.  So we just try to make up for it by putting her to bed earlier, while still giving her a chance for a nap or even just quiet time.  I'm not exactly sure if this medicine working means that she has a specific diagnosis or not, but I'm just glad it's helping her (for now).  She definitely seems happier, because she doesn't vomit as much and because she is getting much needed calories and nutrients.  She is still being feed on a continuous slow drip all day and night.  I don't think she is ready to handle large amounts of food at one time yet.  But if this med continues to work, that schedule may be possible.  I just wish there was a better way to help her GI system to function better, but it all goes back to her CDH.  Every CDH baby is different which is way it's so hard to figure her out! Having your insides develop abnormally and then having them surgically "messed with" a few times really throws your body off balance.  I am so grateful this medication is working and that Whitney is feeling better.  Also thank you all for your support and prayers for her and us on this crazy journey. 





2 comments:

  1. *fingers and toes crossed* I'm so glad its working. I hope it keeps working!

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  2. That's what they put Em on! And you asked about the formula I'm using: Good Start - we use Good Start Gentle 2. Hooray for less vomit!

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