Infantreflux.org | Lactation visit gone bad....

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May 31, 2007 at 7:46 pm #35182

Anonymous
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Okay Ladies,

Iknow I always post here but I truly ALWAYS feel like I’m in a desperate place for help.So, Kate’s feeds have been tolerable these last days and I guess I didn’t realize that untill today of all days when the LC comes to watch a feed and give suggestions. OMG, it was horrific. First, she was late so the baby had her meal after the alotted time I had to give the prevacid but I really wanted to hold off so this lady could try and help us. Second, I woke Kate up(in her magic swing of course!)and latched her on and the lady was holding Kate’s neck really firmly it seemed. Maybe to get a good look, I don’t know. After a few sucks she starts the screaming, arching, etc…..It honestly hadn’t been THAT bad ina while. I couldn’t calm her down for twenty minutes she was crying so hard. My husband finally took her and she was better after awhile. ANYWAY(sorry, the rambling again because I know I have a captive audience….)do you know what she said????? SHE SAID KATE WAS FRUSTRATED WITH THE FLOW!!!!!!!!!! Are you kidding me? After observing my daughter eat for three months and watching her pain, she decides to tell me that “she looks really healthy(where have I heard that before?), I think she’s frustrated with the flow….” Look, I know I’m not an expert in lactation, and I’m definately not trying to pretend I know everything, but I do know my daughter, and I’m so tired of every “expert” telling me they think she’s fine and not to worry. SHE’S NOT FINE!!!!

(deep breath…………………………..)Sorry, I’m just so frustrated. I know the prevacid takes awhile to work but should it be making things worse? Should I call her ped in the morning before the weekend to switch to maybe prilosec or something different? I don’t know what to do..AGAIN.Should I call the ped G.I docs office and see if we can get in sooner? I know things will get better…..kinda….but can I just have SOMETHING go right? That fifty dollars I spent on that LC was fifty dollars I don’t have to spare.

(another deep cleansing breath….)

Okay, I’m done ranting and raving. Thanks for reading everybody.I’m off to Wild Oats to get rice milk because turns out Rice Dream had gluton in it, go figure.

May 31, 2007 at 8:01 pm #35183

Anonymous
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yes unfortunately, the lcs know nothing about reflux and always say its the flow or the baby is just fussy, etc. i have read MANY experiences with lc’s just like yours.

as for your baby…have you eliminated all dairy and soy from your diet? i mean ALL-read labels and look for hidden dairy. this can really make reflux flair up and pretty much cancel out any meds. thats what happened in my sons case.if a baby is intolerant to milk or soy proteins, then when these are injested they actually damage the Gi tract and intestines become inflammed, and reflux flairs up.

also, how long has she been on the 30 mg of prevacid? are you timing with meals correctly? if timing is the issue maybe you can get caracream from marci-kids. thats what we do. its a compound you dont have to time with meals. and zegerid is too (zegerid is prilosec with sodium bicarb which makes it an immediate release suspension)

May 31, 2007 at 8:10 pm #35184

Anonymous
Inactive

Claire,

Unfortunately, I have had similiar experiences with LC’s myself. Everytime they tell me, “oh, it’s not true reflux, you just have OAL and he’s reacting to that..” Well, I’m sure the OAL contributes to the problem, but give me a break!!!

I’m so sorry that it didn’t go better for you. You do what you need to do to hang on, but, if it were me, I would stick with the 30 mgs. of Prevacid for the two weeks before you try to change things again. I remember in those early days wanting to do anything and everything to fix the problem, but sometimes, unfortunately, it just takes a bit of time. Have you decided to try giving it to her 2 or 3 times a day? Hopefully when that really gets into her system and she is able to heal a bit, things will level out for you both.

Meanwhile. Take a breath, eat some pears (ok, bad joke), and remember that your baby love, love, loves you and she knows you are doing all you can to help.

May 31, 2007 at 8:27 pm #35187

Anonymous
Inactive

Thanks guys.

Kate’s on 30mg of the solutab tablets. I have been on the elimination diet for over a week so know chance of dairy in sight. Yes, I did give her the prevacid twice today and yes I have to say, I’ve been super good about giving her the prevacid timed with the meals. Whew! Well, maybe we’ll just wait it out, which stinks, but I guess it’s just part of the process….? See, this would be the PERFECT time to binge on a big piece of cake and some doritos……maybe I’ll have some rice grits instead….

May 31, 2007 at 8:30 pm #35188

hellbennt
Keymaster

awwww! baked pear is good

maybe some sweet potato fries? hang in there!!!

May 31, 2007 at 8:51 pm #35191

Anonymous
Inactive

Try to hang in there. It really does take the full two weeks for most babies to turn around on the right dose of a PPI like Prevacid. And it can take several weeks for milk proteins to clear the system (yours and hers), so even though you’ve avoided dairy for a week it’s too soon to know if that’s going to help or not.

I know it’s miserable. I never got it right with my first refluxer and had to wait until she outgrew it at nine months before I had my happy baby, and with Myles it was five months of misery before I got him on the right dose of Prevacid. Hopefully it will just be a short while longer for you and Kate! I’ll keep praying for her.

May 31, 2007 at 11:12 pm #35194

Anonymous
Inactive

Claire,

I’m so sorry the LC was such a waste of money and hope. It still might be worth contacting LLL and asking the local leader if they know of another mom who has dealt with breastfeeding their refluxer. At least the “help/no help” would not cost anything…

About the Rice Dream, I’ve also switched since I’m concerned about that tiny bit of gluten. I know for a fact that gluten bothers my son so I’m using a store brand (Hannaford) from my local grocery store (Sweetbay/Kash n Karry).

Have you tried making the “rice crispy treats” that Luke’s Mom on the MSPI board posted recently? They might taste really good as an allowable binge! She said that this was “the Crispy treat recipe that Luke’s dietician gave me: Boil 1 cup of Rice Syrup (I use Lundburgs) shut off heat and stir in 3 cups of Erewhon’s crispy rice cereal (I use the gluten-free). Transfer into a dish to cool and enjoy! I have been eating a ton of these as we are still on a pretty basic TED.”

Congrats on getting the solutabs timed right – that is very hard to do with a fussy infant.

I know you’ll be able to do whatever you feel is right for you and Kate and your husband. And, believe it or not, the hard times do actually become blurry with time. Andrew is 15 months old now and those first 7 months of sheer misery are already starting to become blurry in my memory.

June 1, 2007 at 10:18 am #35233

Anonymous
Inactive

I am so sorry the meeting with the Lc went bad. I feel bad because I thought about asking you to ask before getting her if she had dealt with reflux babies before. I am so sorry that I didn’t. I agree with getting in contact with someone from the LLL that has bf a refluxer. If you have bf a refluxer you know what it looks like and how to help. I think I shared this before, one of my friends is a LLL and everytime I would call her she would ask me if I was doing the 5 s’s. The happiest baby on the block thing. I thought I was going to scream everytime she asked me that. The 5 s’s did nothing for him. I finally took him to her house and after she tryed the 5 s’s she said she knew something was wrong. He did eventually calm down, but it took a very long time and she had to do all 5 s’s. She said she had never had to do all 5 with any baby. Anyway, her last baby had reflux and she now understands. It is a true blessing to her and all the people she helps that her baby had reflux. Okay, I am so rambling. All that to say, maybe there is a LLL leader that has had a baby with reflux or at least knows of someone. You don’t have to pay them either. Now that I think of it, with my first son I had another LLL leader that had dealt with reflux come over and tryed to help me out. The sad thing is I was so tired that I don’t and didn’t remeber much of what she said. I remember being very frustrated with the whole thing because I couldn’t get Luke to eat. He just didn’t want to eat much. I felt like she was judging me too since I was using a pacifer. She ended up helping me a lot with the reflux part of it, but I ended up not bfing Luke. Something I have since learned is that there are relaxing hormones that are released when you bf that actually help you to calm down. Also, I kept thinking if he was just on formula things would be better, but it wasn’t. Not only did things not get better, but then I felt so guilty for stopping. I am in no way telling you what to do or judging you for any decision you may make. Only telling you my experience. You remind me so much of me with Luke. I know I have said this before and I’m sure it doesn’t help, but if you lived near me, I would be there in a heartbeat. It is so gut renching to read your posts because it takes me back to when Luke was a baby. I will be praying for you. If you need anything I am here.

June 1, 2007 at 10:35 am #35245

Anonymous
Inactive

Claire,

I’m sorry you had such a negative experience with the LC. Also, I hope TED helps Kate. Caden never improved when I was on it, although I’ll admit I couldn’t find free-range turkey over here and ate regular turkey, but seeing that Caden can tolerate more and more solids as he is getting older, I really think in his case it was digestive immaturity more than anything else. Originally I thought that maybe rice was the problem since I was eating so much rice on TED and he wasn’t improving, but now he eats rice without reacting to it, so that probably wasn’t it.

I just want to say that you are doing a great job and trying everything you can think of to help your baby. I know she senses that. Babies pick up on things like this. She feels loved and knows that you are trying to help her. So, you’re doing a great job

For us, the biggest and really only help for Caden was time. As he has gotten older and stronger (sitting up, etc.) his entire system seems more mature and is handling things so much better.

I know that some babies are truly helped by TED and medication, so I really hope that will happen for your little one too. I’m just sharing my experience with you too.

Please keep us posted and hang in there

June 1, 2007 at 2:47 pm #35263

Anonymous
Inactive

Claire,

I am so sorry that the LC wasn’t a help. YOu know, I found that the LC at the hospital really wasn’t worth much, but I contacted a private firm and that lady was wonderful..of course, this was before Brianna’s reflux had developed, so who knows what she would have said to me after that. I know it is tempting but I one thing I learned (and believe me it was the hard way) was to only change one thing at a time. Give the prevacid another week to get the full two in, and then if you are still having problems, think about another medication. Also, are you on the cancellation list with the GI? I got in weeks earlier than my scheduled appointment with two of hte GI’s (yes Brianna went to three befor I finallyl settled on one) because I was willing to be on the cancellation list. It is worth a try to see if they have one.

You know, things WILL get better. You are going to figure out what Kate needs in order to feel better. I will be praying for you.!

June 2, 2007 at 12:13 pm #35373

Anonymous
Inactive

God Claire, I could just cry for you. I am so sorry. It’s just too bad I can’t reach in and give you a hug. I really hope things turn around soon. This is so hard this reflux thing. I still cry all of the time. My family STILL thinks I am a nutjob that over exaggerates (my MIL is here right now visiting and I won’t even go into it ) speaking of the devil (lol) I’ve gotta run. Hang in there sweetie.

June 2, 2007 at 11:56 pm #35421

Anonymous
Inactive

Hi Claire. I haven’t been around for a long time and thought I’d check in. Then I stumble across your post of desperation. you poor thing!! Have you heard of Dr. Jack Newman? He’s out of Toronto. http://www.drjacknewman.com/index.php?option=com_frontpage&a mp;Itemid=1 Great videos to help with latch or other problems. You’ve found http://www.kellymom.com ? Also fantastic resources there. And lastly, this sounds crazy, but my dd did a complete positive turnaround when I started her on acidopholis. here’s the one we got… It’s dairy free:) http://www.fruitfulyield.com/index.php?action=itemdetail&amp ;item_id=15814&L=1 I got my best suggestions – no offense to the amazing girls here!!!!, but on this site… http://www.pregnancy.org/phpBB2/viewforum.php?f=69 this site also has an in-house LC that tries her darndest to help you via email. Lots of resources there as well.

It’s not easy BFing and most defitely not BFing a gerdling!!! Hang in there. If you are determined to make it work, then it will work.

the best thing for reflux is the milk momma makes

June 3, 2007 at 6:06 pm #35482

Anonymous
Inactive

HUGS Claire. I hope you find someone that can help you.

June 3, 2007 at 8:42 pm #35492

Anonymous
Inactive

Amy! Bless you! i’ve been hunting for a milk free probiotic for ages now!!

June 3, 2007 at 10:56 pm #35505

Anonymous
Inactive

Amy: Thanks for the interesting links!

FYI, Country-Life Power-Dophilus probiotics are also milk-free. Per their website (and the bottle) they are free of “Yeast, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color.”
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