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Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 5

post #81 of 198
Quote:
Originally Posted by DeChRi View Post
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!
post #82 of 198
Thread Starter 
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.
post #83 of 198
s

Let us know what happens!
post #84 of 198
Thread Starter 
I'm getting in tomorrow at 4pm!
post #85 of 198
Amazing news!!
post #86 of 198
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.
post #87 of 198
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.
post #88 of 198
Got my fingers crossed DeChRi that the specialist can help!
post #89 of 198
Quote:
Originally Posted by DeChRi View Post
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!
post #90 of 198


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.
post #91 of 198
Quote:
Originally Posted by DeChRi View Post
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.
I so hear you on this. Stay strong. Hold her skin to skin when you bottle feed her. Smile at her, love on her. She knows you are her mama, and will love you no matter how you feed her.
post #92 of 198
sending you good vibes, and wishing you good luck!
post #93 of 198
As an LLL leader, I was taught that it is an extremely small number of women who truly can't breastfeed, and extremely small number of babies who truly can't tolerate breastmilk. In your case, it appears that you fall into that extremely small percentage. I do still hope that it is salvageable, that the elimination will work!

One thing to consider...it might only be that her gut needs time to heal from the bombardment it was getting. So if you stay on the elimination diet for a while, keep her on the elemental formula, then perhaps start introducing your breastmilk very slowly (1oz BM, 3oz formula, for example) maybe she will tolerate it better. Inflammation is a cycle, once it starts, it's very hard to stop it. She might just need time to heal a little, then she may be able to tolerate your milk, and eventually even tolerate you having more foods in your diet.

Please be realistic with yourself, too. You can't live on chicken, turkey, and squash forever! Nutritionally and emotionally. And after the hellish time you've just had, your emotional health is just as important right now.

I had to cut dairy and soy for my second son, and there were moments when I was awake at night with a sick crying baby (he was very very sick as an infant with numerous birth defects) and I would be crying right along with him because I just wanted some <bleep>ing ice cream! I knew, logically, that ice cream wouldn't fix any of his problems, but it sure seemed like heaven's gates to me. It was like I couldn't handle stressing over his illness, so I stressed over my diet limitations instead. It was very hard. I remember sitting in the surgery waiting room when he was having surgery once, and I was trying to hide tears, and someone came up to me and asked if I needed any help. I politely said no, but inside I was screaming "you know what I want? I want to put some creamer in my coffee!!" It's very strange the things you fixate on when stress is overwhelming.

Please take advantage of this cry-free time to rest and bond with her, and also to pay attention to your husband and older child. You've all been through a lot.
post #94 of 198
Quote:
Originally Posted by DeChRi View Post
Eating 2100 calories a day of turkey, chicken, yellow/green squash, millet, rice, potatos, pears and water...
Wow you are amazing, I am on a gluten-free soy-free corn-free vegan diet and I thought THAT was tough!! But I wonder about the squash & potatoes. I know when I was over on the Allergies forum asking about elimination diets, a couple people mentioned potatoes or squash causing problems. I don't know if it would be worth it to you to cut out those 2 more foods for a few days, or not (you must be starving!!! drink some of that elemental formula yourself!!)

Anyway I don't have any other suggestions. My DS was a screamer for his entire first year+ so I know the torture that is... though he also cried all night, basically 'round the clock, and I never felt it was a medical issue but more a temperament issue for him. Either way -- super challenging -- and I just wanted to offer you lots of hugs.
post #95 of 198
One more thought and this might be absolutely insane & medically 'stupid' but I'll throw it out there just in case: You could try giving her small amounts of the foods (or extracts of the foods) directly into her formula (one at a time obviously) & see how she reacts?? Then you don't have to wait for something to cross into (or out of) your milk & you could zero in on whatever she's reacting to much more quickly. I don't know if that's at all feasible with such a young baby but the idea just popped into my head & figured I'd mention it.
post #96 of 198
Thread Starter 
Quote:
Originally Posted by 2boyzmama View Post
As an LLL leader, I was taught that it is an extremely small number of women who truly can't breastfeed, and extremely small number of babies who truly can't tolerate breastmilk. In your case, it appears that you fall into that extremely small percentage. I do still hope that it is salvageable, that the elimination will work!

One thing to consider...it might only be that her gut needs time to heal from the bombardment it was getting. So if you stay on the elimination diet for a while, keep her on the elemental formula, then perhaps start introducing your breastmilk very slowly (1oz BM, 3oz formula, for example) maybe she will tolerate it better. Inflammation is a cycle, once it starts, it's very hard to stop it. She might just need time to heal a little, then she may be able to tolerate your milk, and eventually even tolerate you having more foods in your diet.

Please be realistic with yourself, too. You can't live on chicken, turkey, and squash forever! Nutritionally and emotionally. And after the hellish time you've just had, your emotional health is just as important right now.

I had to cut dairy and soy for my second son, and there were moments when I was awake at night with a sick crying baby (he was very very sick as an infant with numerous birth defects) and I would be crying right along with him because I just wanted some <bleep>ing ice cream! I knew, logically, that ice cream wouldn't fix any of his problems, but it sure seemed like heaven's gates to me. It was like I couldn't handle stressing over his illness, so I stressed over my diet limitations instead. It was very hard. I remember sitting in the surgery waiting room when he was having surgery once, and I was trying to hide tears, and someone came up to me and asked if I needed any help. I politely said no, but inside I was screaming "you know what I want? I want to put some creamer in my coffee!!" It's very strange the things you fixate on when stress is overwhelming.

Please take advantage of this cry-free time to rest and bond with her, and also to pay attention to your husband and older child. You've all been through a lot.
One thing you said here jumped out. When I spoke w/ the woman today, at the place in Lincoln, she asked if I'd ever had an issue with oversupply/overactive letdown. I said yes, that my first call to LLL was because of this and then I started block feeding. She said ghat because of the foremilk/hindmilk imbalance this causes, it damages the gut. This will many time cause food sensitivities in babies that otherwise were not "allergic" to something, but instead, now the damaged gut can't process correctly.

Lots to talk about w/ her tomorrow, but her point syncs well with yours.
post #97 of 198
Quote:
Originally Posted by DeChRi View Post
One thing you said here jumped out. When I spoke w/ the woman today, at the place in Lincoln, she asked if I'd ever had an issue with oversupply/overactive letdown. I said yes, that my first call to LLL was because of this and then I started block feeding. She said ghat because of the foremilk/hindmilk imbalance this causes, it damages the gut. This will many time cause food sensitivities in babies that otherwise were not "allergic" to something, but instead, now the damaged gut can't process correctly.

Lots to talk about w/ her tomorrow, but her point syncs well with yours.
very interesting. pls fill us in when/if you have time after your appointment/talk.

nak
post #98 of 198
This suggestion is pretty "out there" but if you're not sure what she's allergic to, you could ring a kinesiologist and see if they can help. I talked to one who specialises in children and he suggested DD had a specific allergy. I took itout of my diet and she settled within a couple of days. Some can check you (as a pair) for different allergies.
post #99 of 198
Thread Starter 
Thanks again for all of the advice. I haven't had time in days to sit down at the computer, so I've been reading via my phone. Its hard to reply on here, but I have read and jotted down every single suggestion/idea/advice etc, even if I didn't comment directly on it, so thank you!

Heading out at noon, appt at 4pm, then 3.5hr in the car again so I will update on the drive. I am really anxious to visit w/ the Dr. The LC at our hospital had wonderful things to say about her knowledge and expertise in breastfeeding/allergy issues. When I went to the website the first thing I noticed was a note that said they will not refuse anyone based on an inability to pay. I'll definately be making a donation there if finances allow, this year. Pretty cool. So hoping to get answers. It just all makes no sense. 11 days on diet now and I nursed her yesterday for 10min and withing the hour she was stiff as a board, screaming, writhing, for 2 hours straight. Crashed out and was fussy the rest of the evening. I just don't get it!!
post #100 of 198
Quote:
Originally Posted by DeChRi View Post
Does anyone know, if I did a total elimination diet, how long it would before I notcied some kind of difference? I know it takes a couple weeks to truly eliminate some things from the system, but should there be a noticable difference of some kind within day?

If it is horrible gas, anything other than Mylecon?

And thanks so much for the prompt replies. I very much appreciate it. If nothing else it helps back me away from the edge of the cliff.
Have you tried Gripe Water. I get mine at Walgreens, it has no alcohol, and I get the one that has fennel, chamomile and ginger and it has worked great on my last two children for their gas issues.
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