Saturday, February 20, 2010

Sound Familiar?

Okay all of you reflux moms, I need your help. To make a long story short, we are still battling all of this with Claire. You know from my post a few weeks ago that they put Claire on 3 or 4 meds after all of her tests at childrens. I do see that her reflux is a little bit better because she does not scream during feedings as much and is pretty happy for an hour after the feeding. BUT...she is still having major GI issues. She is not able to sleep more than 30 minutes at a time for naps or night. We know about the "45 minute intruder" and trust me, this is not it. This is ALL NIGHT LONG. She hasn't slept in months, but it's just getting worse. She will go 1 hour to 1 hour and 1/2 at most and that is on a good night. She just is so uncomfortable, clawing at the sheets, grunting, pulling her stomach in, etc. And it doesn't seem to be gas at all because we know what that used to be like. It is just something happening when her food hits the digestive track. She has been constipated for weeks now and goes every couple of days even with miralax. And sorry for TMI, but I just need advice. It's always green. We thought the nutramigen was the answer since it helped with fussiness and gas, but it is still not doing the trick once it hits an hour after the feeding. SOOOO... does ANYONE have any similar experience with this? Some sweet girls from my community group at church seemed to think since the reflux was getting better, it was probably an allergy. BUT we cannot have an allergy test this early. Is there any other formula that would be better than nutramigen or the similac version alimentum? We are just wondering if anyone has any experience and maybe could enlighten us. We are at 4 1/2 months and it is so sad to watch her in pain so much and I'm really losing it with no sleep trying to take care of two kiddos! Poor Chris doesn't even know me at the moment! So I just thought I would throw it out to the blog world because surely somebody has either heard of this or been through it. In the meantime, please help us pray that God would heal this (of course in His timing and not mine:) and pray that we can stop the meds, the search for the perfect formula, and remember what getting sleep feels like! :) Thanks for all the prayers so far! Keep them up! We do go back March 1st to the GI and the next step will be to do an endoscopy where they put Claire to sleep to put a tube down her, and we would also spend the night at children's while they run test all night and watch her sleep, toss and turn. So any advice?

8 comments:

Kristin Coppock said...

Dana,
I am so sorry! Eva had 2 bouts with her reflux like that, but only for 24 hours. It seemed like rice cereal or anything with rice made her do that. We use Similac sensitive, orange (not RS because that had rice). It does sound a lot like reflux with her arching and all. something else that helps us a lot with tummy stuff is Gripe Water. For some reason it would work with Eva when mylicon and other tummy stuff did nothing. Have they given you Carafate to coat Claire's throat and tummy? It is I guess like a version of pepto for babies, but it is alternated with her reflux medicine and may give comfort... Just ask about it... I am praying for you and Claire!

Jill said...

Hey Dana! I am so sorry for what all you and little Claire are going through. The green bathroom you are talking about really sounds like a dairy allergy. I have a few friends that had babies with milk allergies and that's how they figured it out (other than the fussiness and discomfort) was by the way the diapers looked. Also, I have another friend who's baby dealt with constipation and got a prescription medication that worked really well. I'll get the name of it and email it to you. I hope you start getting some answers...and SLEEP!!
Love, Jill

Melanie said...

EVERYTIME Abby goes to the bathroom it is green. Our MD said it was fine. Not sure what is causing it!

Margaret Worrell said...

Dana, I am so sorry yall are still having a hard time! Owen had tummy issues when he was young too (they weren't as bad as Claire's though). Nutramigen made him spit up/throw up worse than any of them. I finally tried Soy and it worked great! He went to soy formula and ended up coming off his reflux medicine and his gas issues got a lot better too. I am not saying soy will be your perfect answer but you may want to try it if you haven't already. We also used the gripe water in each of his bottles. Hopefully, you will find something soon- I know yall are exhausted and want her to feel better!

Rachel said...

Dana,
Poor sweet Claire! I don't doubt that Claire has reflux (you've seen it live from the Upper GI), but I would try to investigate the possiblilty of a cow's milk allergy, too. Definitely mention the green diapers to Dr. Mestre. He put Reese on Nutramigen AA (amino acid) formula when she was really young. I had never heard of it...he gave me samples and then if it agreed with her it would be available by prescription. It is for babies with an allergy to cow's milk protein. It wasn't any more horrible smelling than the regular nutramigen, thankfully.
I know the endoscopy is scary, but it really helped us get the best plan in action for Will (his reflux was MUCH worse than Reese's). He actually had 2 done within 18 months.
Hang in there! You WILL get to the bottom of this!

Shireen said...

Dana,
This comment will be of no help in the advice area, but I just want you to know that I've read this update, and I'm sick to my stomach for you guys...I'm so sorry. I am already praying in Spirit, and I will continue to pray. I pray that the Lord would continue to give you and Chris the needed supernatural strengths, wisdom, discernment and everything else that HE knows that you need during this time. I pray that little Claire's body miraculously heals according to the Lord's will and as soon as He would allow for that.
I want to offer advice, but I cannot. I will be praying.
Love you, friend!

The Sylvesters said...

Hey Dana! You poor thing and Claire, too. My suggestion is try soy formula. It (green poop) sounds like a milk allergy which can also cause ear infections. Also, try putting her on her tummy to sleep. This really helped Joseph with his reflux. I am so sorry that y'all are going through this still. I will continue to pray for you, Chris, and Claire to get better and sleep for everyone.

Courtney said...

So sorry this is still so bad!! I read your friend Rachel's comment and I actually have a Nutramigen AA formula sample you can have if you want to try it. Clayton is on the regular Nutramigen and handles it well. He didn't really tolerate the AA. You are more than welcome to it to try. Just let me know and I can get it to you!!

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