Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 3 - Mothering Forums

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Old 08-14-2010, 05:32 PM
 
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I haven't had time to read all the posts, but it sounds like she totally has a food allergy!! My son was exactly the same. Does your dd happen to have runny stools (like even moreso than a regular bf stool)? Stuffy nose? Spit up? My son had all those symptoms (especially the crying - ugh!) and had a milk, egg, and soy allergy. My current nursling cried and spit up due to the dairy, egg, and peanuts I was eating. Once I figured it out, they were better within a matter of days. And the longer I went without eating it the better they got.

I know how awful that is... I hope your elimination diet works, and I really think it will!

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Old 08-15-2010, 12:11 PM - Thread Starter
 
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I've read through the new replies on my phone since I can't seem to find a time to open up the computer, so I apologize if I miss something! I'm going to go back over them once the little ones are a bit more calm (like 2014, lol).

Right now she is taking Prevacid 2x daily (15mg morning and 15mg evening). She has been doing this for 12 days now. During the day time she seems to be very similar in symptoms to my other DD who had reflux (cept DD2 was projectile, not silent), BUT she is soooo fine at night. My last DD was the worst at night.

As far as food allergies...she does seems a little congested all the time, but here is where I get all confused. My last DD was always congested from the contant spitting up that made it's way into her nasal cavity. and she cried then, causing more gas.

So the whole cause/effect thing throws me. Is it reflux & the other things are symptoms of that and we need to stay the course w/ medication options? Is it a food allergy causing everything and I'm dosing her up w/ Prevacid for nothing? She is on day 5 of infant probiotics as well. Today is day 5 of the elimination diet for me...NOTHING potentially allergenic at all. Clean as clean can be. My hope is that if it is food, there will be SOME noticable difference very soon. I'm tolerating the diet okay, mainly because I'm too worn out to really care.

Her poop seems pretty normal. Yellow, she doesn't seem uncomfortable prior to pooping, but she only goes every 4-6 days...not a daily pooper.

Tuesday will be 2 full weeks on Prevacid and a full week on the elimination diet and probiotics. I'm praying we have an answer.

I do know that her non-nursing random screaming fits are gas/gut related. Maybe more than one thing going on? It just makes me sad that she is never content. She never just sits there happy. Even when she is not crying for a period of time, it requires a sling, binky and walking about. I feel like she is missing out on discovering the world as she is upset so often.

Note- the last 24hrs have been near "normal" nursing patterns. If nothing else, having a day like that makes me feel good.
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Old 08-15-2010, 12:26 PM
 
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I had an overactive letdown that really bothered my ds. He has terrible gas, blew out his diapers several times a day.....and lots of crying. And he really started to hate nursing. I was a wreck because he did not sleep well for months. He also hated co-sleeping so that did not help either. I shall also mention he was an enormous baby! Even with all the pooping and projectile spitting up, he gained a lot of weight. At 4 months he was over 17 pounds.

I tried gas drops....all kinds of homeopathic remedies and none of that worked. After 3 to 4 months I was able to get him settled. What I did was pump first to get the sweet foremilk and to stash in the freezer, then with the intense letdown taken care of, ds was able to manage the milk better, get less foremilk and suffer less. It took a while and people were also trying to convince me to use formula. People also told me it was what I was eating. I eliminated lots of things and that made no difference.

I do not know if you have tried this or not.

Oh I just read your post from this morning! So glad things are improving.
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Old 08-15-2010, 12:38 PM
 
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I think you're trying a lot of wonderful things with diet and meds. But I still am getting caught up in the fact that she takes the bottle so much better. I think it's possible more than just nipple preference.

If the diet and meds don't help after another week or so (or whatever period you set for yourself) then ask for a referral to an ENT. A GOOD ENT, not just any ol' ENT.

My middle son is a *mess* with ENT-related issues, and it's taken a long time to sort them all out. He had *5* lip ties (couldn't even see two of them until they got him into surgery), a narrow and high arched hard palate, a submucous cleft of the soft palate, dysphagia with aspiration, and velopharyngeal insufficiency with nasopharyngeal backflow. Some of those issues are more obvious than others, but all of them can easily be missed by a Ped or LC who just don't specialize in ENT related issues.

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Old 08-15-2010, 12:59 PM - Thread Starter
 
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I think you're trying a lot of wonderful things with diet and meds. But I still am getting caught up in the fact that she takes the bottle so much better. I think it's possible more than just nipple preference.

If the diet and meds don't help after another week or so (or whatever period you set for yourself) then ask for a referral to an ENT. A GOOD ENT, not just any ol' ENT.

My middle son is a *mess* with ENT-related issues, and it's taken a long time to sort them all out. He had *5* lip ties (couldn't even see two of them until they got him into surgery), a narrow and high arched hard palate, a submucous cleft of the soft palate, dysphagia with aspiration, and velopharyngeal insufficiency with nasopharyngeal backflow. Some of those issues are more obvious than others, but all of them can easily be missed by a Ped or LC who just don't specialize in ENT related issues.
I will definately keep this in mind. My mother actually works in an ENT office (she heads up their Audiology Dept) and they are some of the best ENTs in a large area. I will definately tap that resource. I was a very unhappy refluxy crying baby as well. For over a year. And I ended up having some extensive ENT related surgeries as an older child, all breathing/nasal cavity/throat related. My 11yo also, I think, needs to get in as she breathes horribly, causing chronic throat infections.
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Old 08-15-2010, 07:13 PM
 
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Just wanted to say again, my DS who had silent reflux also nursed fine at nighttime. And it wasn't until 2 FULL weeks on Prevacid that we began seeing results. Keep going Mama, you are almost there to see some answers! Also with the elimination diet, it can also take 2 weeks to see results.

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Old 08-18-2010, 04:04 PM - Thread Starter
 
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pumping at keyboard.....
Back with new pieces to equation. I've spent much of the last few days with various LLL help and my Dr. I covered base after base with the LLL leaders. At the end they said that short of staying on the elimination diet, I had "turned over every stone". So much for a magic bullet. We hit 2 wks on 30mg of Prevacid w/ no help. Did no bottles at all for days. Again, tried everything over the last 8 weeks as advised by LLL and Dr. I am on day 9 of the full on emilination diet. Eating 2100 calories a day of turkey, chicken, yellow/green squash, millet, rice, potatos, pears and water...no seasoning, nothing....made sure vitamins are vegan and free of everything, etc. Did 2 visits to chiro. Went back Monday to Dr and they did stool tests and stuff. Dr said her gut is really inflammed. Something has her extremely torn up. It was so bad by Monday....just non-stop screaming....been 7+ wks of this now and not getting better.

At that point I really felt like I had given everything a go. Even the hospital LC threw her hands up at me. So as of Monday I agreed to do 48hr on hypo-allergenic formula. Within 12 hours I had a new baby. She has gone from 12 hr of crying a day to about 20 min. She is smiling, looking around, cooing...it was DRASTIC and amazing. Once the 48 hrs past I nursed her and she spent the morning screaming bloody murder.

SO...I feel pretty good about my steps so far and do not regret the formula trial. Been pumping every 2hr around the clock and taking supps recommended and supply is superb at this point.

Next step...WHAT IN MY MILK IS CAUSING THAT BAD OF A REACTION????!!!!! And after 9 days of being milk-free (well, everything free) in my diet, shouldn't it be drastic? I just got off with the LC at the hospital and she is at the point of recommending a clinic in another state near here with a ped/LC specialist. Right now I am pumping every 2 hr, and working on a next step. Dr is recommending formula for the next 12 days until I hit 3 weeks on the elimination diet, then go back full force to breastmilk and see what happens. Given the severity of her reaction, lack of then wanting to eat due to pain, slow weight gain, etc....the LLL person didn't think this was a horrible idea actually.

At think point I am thinking through everything. She may reject the breast in 2 more weeks of bottles and I may be an exclusive pumper/bottle feeder. I may have weeks of reteaching her to nurse. I know in that aspect I am creating an uphill battle.

I am just looking for any other thoughts, suggestions, ideas, advice moving forward in this process.

Thank you.
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Old 08-18-2010, 05:11 PM
 
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so happy to hear you went with elemental formula, not soy as first suggested. Will think about this some more. it may take 3-4 weeks to clear cow protien (dairy and meat) out of your system.

you are working so hard for your little one - hang in there!
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Old 08-18-2010, 05:26 PM
 
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Doesn't the hypo formula have proteins that are broken down? It may not be something you can replicate with your own milk. I think you did the right thing and I hope you can figure out a next step that makes you feel at peace.

I nursed two kids with dairy/soy allergies. Actually DD had egg issues, too. It's about as much as I could handle. For me I said that if there was any other major issue (/food group) we'd be thankful for medical formula.

I'm sorry you're going through this and I know you'll work it out!

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Old 08-18-2010, 05:41 PM
 
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I have no advice, but I want to say that you are a superstar. You are working So Hard for your daughter and that is amazing and wonderful. I hope you feel proud of yourself.

My advice may not be appropriate for you. That's ok. You are just fine how you are and I am the right kind of me.

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Old 08-18-2010, 05:53 PM
 
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OP, we had quite a rough go in the early days with ds. He's now 8 mo and doing really, really well.
I spent several weeks on elimination diet with some improvement. It wasn't until a couple months had gone by that we saw major improvement.

I saw drastic results when we finally determined that I also have some intolerances. Once my gut was healed we saw dramatic improvement in ds. I believe that if your own gut is irritated and not doing its job well then your lo is going to get proteins and such in your milk that can cause some problems. I think that's what happened with us.

Hope you get things figured out soon.
Keep the faith.
s
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Old 08-18-2010, 06:03 PM
 
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Dr is recommending formula for the next 12 days until I hit 3 weeks on the elimination diet, then go back full force to breastmilk and see what happens. Given the severity of her reaction, lack of then wanting to eat due to pain, slow weight gain, etc....the LLL person didn't think this was a horrible idea actually.
Hi,

I know you are not sure exactly what the allergens are and my own experience with nursing an allergic child is limited to dairy only...but I wanted to share that when I had to totally eliminate dairy for our son, but never quit nursing, it took a full eight weeks to get it all out of my system, then out of his, before his allergic symptoms went away. So it can take a while. I hope that with the elemental formula/elimination diet combination, three weeks turns out to be long enough for you...I do not think it is too long. You are making a fantastic effort .

DS1 March 2003DS2 Sept 2005,
and 3 , in our happy secular
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Old 08-18-2010, 06:06 PM
 
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You mentioned you drink coffee. You probably don't drink it at night. Could it be a caffeine intolerance? My son cried for 12 hours the one time I had a Mt. Dew when he was nursing.

And I apologize if I am totally off- I haven't had time to read the other posts.

Busy mama to 4 boys, M 9/04, E 4/06, our angel baby N (passed 10/09 at 1 day old) & newbie C, 12/10
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Old 08-18-2010, 06:12 PM
 
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I have no advice, but I want to say that you are a superstar. You are working So Hard for your daughter and that is amazing and wonderful. I hope you feel proud of yourself.
I second this--you rock, mama!

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Old 08-18-2010, 06:31 PM
 
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You are doing an amazing job, and I really hope you get some solid answers soon. Could it be something you are eating now, even though they aren't "allergenic" that she is reacting to? Maybe the squash?

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Old 08-19-2010, 01:00 AM
 
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Ok, so the hypoallergenic formula in a bottle worked. But didn't you say that your pumped milk in a bottle also worked? If so, it seems the factor is the bottle, not the formula. Or am I mistaken?
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Old 08-19-2010, 01:22 AM - Thread Starter
 
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Ok, so the hypoallergenic formula in a bottle worked. But didn't you say that your pumped milk in a bottle also worked? If so, it seems the factor is the bottle, not the formula. Or am I mistaken?
when screaming she would stop tp eat from a bottle, but not to nurse. however, it didn't stop the screaming.
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Old 08-19-2010, 01:24 AM - Thread Starter
 
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You mentioned you drink coffee. You probably don't drink it at night. Could it be a caffeine intolerance? My son cried for 12 hours the one time I had a Mt. Dew when he was nursing.

And I apologize if I am totally off- I haven't had time to read the other posts.
boy i wish! i've cut caffiene out totaly for a couple wks before and again this last week and notta.
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Old 08-19-2010, 09:52 AM
 
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You've done an amazing job and gone so much further than nearly any other person would. What a fabulous gift for your LO!

I really, really hope you and another doc can track down the cause and get her back to the breast or your milk. But it's not a defeat to admit that your LO is one who needs elemental formula for some complex reason or combination of reasons. It's like medication -- there may be nothing that you can do to "fix" the need.

Good luck! I'm still amazed at how far you've pushed! Keep going!

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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Old 08-19-2010, 10:14 AM
 
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At think point I am thinking through everything. She may reject the breast in 2 more weeks of bottles and I may be an exclusive pumper/bottle feeder. I may have weeks of reteaching her to nurse. I know in that aspect I am creating an uphill battle.
This was one of my biggest fears when I had to pump for 12 days for newborn DD, and give her soy formula. She had a galactosemia marker and we were waiting for DNA tests, and I could not nurse her. I was terrified she would not go back to the breast. I know it is only anecdotal, but she took right back to breastfeeding. I had an LC lined up to help w/latch if needed, but in the end, we didn't need any help.

IMO, fight one battle at a time. Even if you do need help getting her back to the breast later, don't worry about it now. You will get there. I'm so, so sorry you're going through this. I know the heartache of bottle feeding your new baby when you didn't choose to, and having to pump around the clock. But I also know you can do this.

Carrie SAHM to Nora Caitlyn (5) and Finnley Dax (2) homebirthing, breastfeeding, babywearing, intactivist, doula mama!         
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Old 08-19-2010, 11:33 AM
 
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boy i wish! i've cut caffiene out totaly for a couple wks before and again this last week and notta.
Are you drinking decaf? If so, I believe it has a fair amount of gluten in it.
May be something to consider.

Hang in there!
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Old 08-19-2010, 12:15 PM - Thread Starter
 
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Thank you all so much for the support. I didn't realize how emotionally hard this would be. When she is crying and my overwhelming instinct says NURSE and I can't. On the bright side, DH and I have agreed to drop and drive to Nebraska and pay (outta pocket ) for the specialist help. I'm expecting a call back this morning.
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Old 08-19-2010, 12:56 PM
 
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s

Let us know what happens!
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Old 08-19-2010, 04:01 PM - Thread Starter
 
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I'm getting in tomorrow at 4pm!
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Old 08-19-2010, 04:09 PM
 
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Amazing news!!

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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Old 08-19-2010, 04:17 PM
 
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I have nothing to add except you are a rock star. In the end you will know you did everything in your power and 99% more then most people no matter what the outcome. You have one lucky baby there to have a Mama like you.

Jenese Mama to Elliot 8/05 and Millie Jane 7/07 and Cecilia Kate 1/11
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Old 08-19-2010, 05:21 PM
 
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It's very rare in infants, buy maybe she's lactose intolerant like little Josie Duggar. I was shocked to hear about Josie being lactose intolerant because it is so rare in infants. Is the formula you are giving her lactose free?

Just curious, what form of Prevacid is she on? If it's the compounded version, it's not always compounded properly rendering it useless.
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Old 08-19-2010, 05:24 PM
 
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Got my fingers crossed DeChRi that the specialist can help!

hide.gif Me 41, single mom to modifiedartist.gifdd 4/2001 and demon.gif ds 7/17/2010

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Old 08-19-2010, 06:45 PM
 
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I've read through the new replies on my phone since I can't seem to find a time to open up the computer, so I apologize if I miss something! I'm going to go back over them once the little ones are a bit more calm (like 2014, lol).

Right now she is taking Prevacid 2x daily (15mg morning and 15mg evening). She has been doing this for 12 days now. During the day time she seems to be very similar in symptoms to my other DD who had reflux (cept DD2 was projectile, not silent), BUT she is soooo fine at night. My last DD was the worst at night.

As far as food allergies...she does seems a little congested all the time, but here is where I get all confused. My last DD was always congested from the contant spitting up that made it's way into her nasal cavity. and she cried then, causing more gas.

So the whole cause/effect thing throws me. Is it reflux & the other things are symptoms of that and we need to stay the course w/ medication options? Is it a food allergy causing everything and I'm dosing her up w/ Prevacid for nothing? She is on day 5 of infant probiotics as well. Today is day 5 of the elimination diet for me...NOTHING potentially allergenic at all. Clean as clean can be. My hope is that if it is food, there will be SOME noticable difference very soon. I'm tolerating the diet okay, mainly because I'm too worn out to really care.

Her poop seems pretty normal. Yellow, she doesn't seem uncomfortable prior to pooping, but she only goes every 4-6 days...not a daily pooper.

Tuesday will be 2 full weeks on Prevacid and a full week on the elimination diet and probiotics. I'm praying we have an answer.

I do know that her non-nursing random screaming fits are gas/gut related. Maybe more than one thing going on? It just makes me sad that she is never content. She never just sits there happy. Even when she is not crying for a period of time, it requires a sling, binky and walking about. I feel like she is missing out on discovering the world as she is upset so often.

Note- the last 24hrs have been near "normal" nursing patterns. If nothing else, having a day like that makes me feel good.
I could have written this myself. Am following your postings and keeping fingers crossed that the specialist will help!
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Old 08-19-2010, 07:25 PM
 
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My guess is one of two things: either it hasn't been long enough for the ED to have helped yet (say, you need to be off dairy for 3-4 weeks until the dairy proteins are gone, and it simply hasn't been long enough yet) or you're still eating something that bothers the baby. Just going by my knowledge of the Blood Type Diet, potatoes are an "avoid" for any body with A, AB, or O blood type, and chicken is an "avoid" for people with B or AB blood. Is it potatoes or sweet potatoes that you've been eating? If it's been white potatoes, then I'd suggest switching to sweet potatoes. You also may do better eating only turkey, rather than turkey and chicken.

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