Infantreflux.org | Down in the Dumps

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March 31, 2008 at 8:51 pm #49674

Anonymous
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Hello everyone. I haven’t really had a chance to post much on the board as I feel I can’t get on the computer as much as I’d like. I do want to thank you all though for such a great place to come to with people who understand so completely. I am severely in the dumps right now and everything looks so bleak for us.

Our dd, Libby, has been suffering from this miserable condition since she was about 2 weeks old. We’ve seen 3 different peds. who have not been much help. We finally tried her on Prevacid a second time (we were never told how to properly give her the med the first time). She is on day 17 of that at 7.5 mg twice a day. We thought we were seeing improvement but the last 3 days have been hell again! Tonight, she had an inconsolable crying spell for a good hour or more. Absolutely nothing calmed her down until she just finally wore herself out. The whole day has been like that.

I also have a son and I carry so much guilt where he is concerned. Poor thing ends up spending a lot of time playing by himself or watching way more tv than I would have ever thought I would allow. He is dealing with it really well, which I think makes me feel even guiltier.

I just feel like such a failure at everything right now. I know the reflux is not my fault but it has made me not enjoy the baby experience like I feel I should. I love my daughter dearly and will do anything to relieve her pain. But I find myself wishing away the days to where she’ll be better. But that upsets me because I know this time will go quickly and I won’t get these days back. It all just seems so unfair to these poor babies and their families who have to suffer through this.

I sorry to be such a downer and to sound like I’m just complaining. I just need to get things off my chest and who better to do that with than you all! I know people don’t really understand what we all go through day in and day out.

Well, I hope you all out there are having a much better day and that your babies are pain free tonight! Thanks for listening!!!

Jen

Ryan 07/03/2005: outgrew reflux at 1 year old
Libby 01/06/08: Prevacid 7.5 mg twice daily; awaiting appt with specialist

March 31, 2008 at 10:05 pm #49682

Anonymous
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Hi Jen,

I just want to say hang in there!!! So much of what you wrote hits home for me, as I had my second refluxer 10 months ago. My older son is the same age as yours, too, so I know how hard it all is on them. I let him watch way more TV than I ever thought I would and I worried so much about neglecting him, but he is fine and so is your son. Do what you have to do for now, and know that it IS temporary (even though I know it doesn’t feel that way).

Reflux really is so unfair because it robs us of those moments we should be cherishing, and the guilt we feel for wishing away the days is terrible. I have never yet been able to enjoy a baby — it’s always misery around here for the first few months. When I hear a mom say, “doesn’t the first year just fly by?” I cannot relate in the least. I’m saying all this to let you know that we really do understand how you feel, and you’re doing the best you can — give yourself a break! Vent here anytime.

On the practical side of things….I think your daughter’s Prevacid dose is too low. Have you checked the PPI dosing chart/calculator on http://www.marci-kids.com? My son saw NO relief on 15 mg/day nor 22.5 mg/day. He only improved at 30 mg/day (when he was 2 1/2 mos old), and even then we could tell when one dose was starting to wear off because he would be in pain again. Any good days prior to getting him on the marci-kids recommended dose were flukes, in my opinion.

Also — have you looked into the possibility of a protein intolerance (milk, soy, or other)? This also tends to go hand-in-hand with reflux for many babies, and the reflux meds won’t help protein intolerances.

Good luck and know that things WILL get better. Don’t give up — you really are doing great!! Heck, I didn’t even fully realize that my first son had (silent) reflux til he was about 9 months old.

April 1, 2008 at 10:32 am #49702

Anonymous
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Hi there!

You really aren’t alone in feeling this way! I swear I must’ve written this post when I first came here. DS#1 was 26 months old when DS#2 came along with GERD– screamed all day/apnea monitor…you name it. It was really hard. i rememember the guilt from letting my older watch too much tv, or him asking me to help with puzzles and I couldn’t! or constantly ssshhh’ing him b/c I finally got a refluxer to sleep after hours of trying. HUGS to you!!! I can totally sympathize! It will get better.

I ditto EVERYTHING Paula had to say about the meds dose and looking into intolerances to. Landen was not comfortable until on Neocate and a good dose of a PPI, and he had to wait way too long for a ‘good’ dose of a PPI!

April 1, 2008 at 10:53 am #49703

Anonymous
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Paula and Jill,
Thanks so much for your replies. You have no idea how much they helped!

I faxed the doctor today about increasing the PPI dose and she says she doesn’t agree with that. So, I’m trying to get in to see a specialist. Hopefully we’ll get a good one!

Thanks again!

jen

Ryan: 7/05; outgrew reflux at 12 mos
Libby: 1/08; Prevacid 7.5 mg twice daily

April 1, 2008 at 1:55 pm #49710

Anonymous
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Jen,

Good luck with the specialist! I really hope you get a good one, too.

But don’t wait for that! Is there another local ped you can make an apptmt with really soon, like this week? It’s worth a shot — you might find one who is aware of the marci-kids research for higher PPI dosing. After switching 3 times, I found a pediatrician who listened to me and gave me the Rx for 30 mg Prevacid. What really helped, I think, was that I had increased the dose myself so I KNEW it worked. So I told the doctor the truth — that I had given the lower doses ample time to work, and they did not. I listed all the other things (non-medicinal like elevating crib, feeding small amounts, etc.) that did not help, and I listed all the medicines we’d tried that didn’t help (Zantac, Axid, etc.) and told how long we tried each one so that the dr wouldn’t think I was jumping the gun. Then I told him that within 2 days of trying 30 mg/day, my son did not cry the entire day for the first time in his life!

Bottom line — I’ve had several doctors tell me that they just cannot go any higher than 15 mg/day, but it is not true. Find one who will!! I know it’s a lot of work to try out other drs, but it’s so worth it. I really wish I had done it sooner. Oh, and have you checked the thread under “pediatricians/specialists” to see if you can find a dr nearby that someone here has recommended?

I don’t mean to sound too opinionated, really I don’t. But these mamas really know what they’re talking about when they say that a high PPI dose can make ALL the difference.

Good luck again. I really hope things turn around for you soon!!

April 1, 2008 at 2:08 pm #49712

Anonymous
Inactive

Jen

Hang in there. Again your story sounds like somthing I would have typed several months ago. Prevacid did nothing for Ashlynn she has been on Nexium since she was about 4-5 months old. I saw a different baby the same day she started the Nexium. I hope things get better for you.

April 3, 2008 at 3:17 pm #49831

Anonymous
Inactive

Hey Jen, ditto to all that Paula wrote. Try looking for another doctor. Maybe even a family doctor, as they are usually more comfortable prescribing the PPI meds. Have you tried faxing the Marci kids info directly. Also, I know that Dr. Phillips has even called doctors before to explain the high doses, etc.

Hang in there. I also could have written your post.. actually, I know I wrote one very similar. you are doing a great job, and your little ones are very lucky to have a momma like you!!

April 5, 2008 at 12:09 am #49916

Anonymous
Inactive

I could have written your post a couple months ago. I was so there!!! I am still sad that I had such a miserable experience with both my boys in their first few months but it is much better now for the most part. Brian was on 15 mg Prevacid and getting not much relief so our pedi upped it to 22.5 mg (7.5 am and 15 pm) and that made a big diff. He weighed about 12 lbs at that time. We also gave Brian Carafate because he was refusing his bottle due to pain and the Carafate worked wonders for us. The Carafate was prescribed by our pedi GI. Good luck and hang in there. You are doing a great job in a very tough situation!
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