Back Again

[hellbennt]

leahsmom: I changed you signature- to remind me (& others!) not to ask you about pumpng

[Anonymous]

My next question is what to do next? Last night Ben acted like he was eating poison with the last bottle of expressed breast milk. My husband made him a bottle of elecare next. He was so much more comfortable. He ate 3.5 ounces and smiled while eating (that has not happened since this all started). We gave him Elecare for the rest of the night. I would like to keep up with some breast milk but clearly there is too much in there that is bothering him right now.

How do I proceed? I am pumping as we speak but can’t decide what to do with the milk. Do I dump it and wait a few days until I can get things out of my diet? I had been about 40 hours without dairy and 24 without soy (as much as I can)?

My daughter had so many foods that she was intolerant of that I am worried I can never cut enough out unless I am eating straight pear for the next month.

Please advise

Also off to fight with insurance today. Going to go through the ped office first.

[hellbennt]

to get it out of your diet, you need about 2 weeks – that’s for the proteins like milk, soy, beef, pork, poultry…

there’s a lot to read about what you CAN eat

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

there’s even TED (total elimination diet) forums!

TED Basics:

https://www.infantreflux.org/forum/forum_topics.asp?FID=43

TED recipes:

https://www.infantreflux.org/forum/forum_topics.asp?FID=44

[Anonymous]

so what do I do in the meantime?

[hellbennt]

I would continue along…work on your diet…give the formula…read all you can…

I don’t think *I* would dump any milk…yes, there might be something in it that’s bothering him, but it’s ‘just’ two weeks to clear it out…you’ve made it this far!

medicate your child…(you can always back off)…

have I helped you calculate proper zantac dose yet?

[Anonymous]

so freeze the milk that I am pumping now?

[hellbennt]

mix current milk w/ the formula? now?

and then, in 2 weeks, start building your stash/freezing it?

[Anonymous]

tried that yesterday- he screamed and refused it. Happily took straight elecare though.

[hellbennt]

not sure- one ounce breastmilk & the rest elecare?

1/2 ounce breastmilk?

[Anonymous]

I think in the meantime it’s really up to you and your LO, I nursed my LO through my elimination diet but he didn’t take well to a bottle, he prefered to nurse so it was easiest for us.

IMO you can supplement with Elecare and if your LO is comfortable and happy that’s a good thing! And if you want to continue pumping, contiue your diet and introduce bottles of BM, you may need to prepare yourself for possible reactions if your BM still has trace amounts of problem proteins, but you can use your LO’s symptoms as a guide to figure out what exactly your LO is having trouble with. And while every baby is different I would eliminate with whatever your DD was allergic to, it seems like a good place to start.

I used many of the recipes under the TED recipes on this site, as well as these:

http://www.godairyfree.org/dairy-free-recipes

http://www.mspimama.com/

http://www.foodallergy.org/recipes

allergy-friendly cookbook: http://bit.ly/d9QVFL

Hang in there 🙂 It’s tough at first, but there really are a lot of options and good things to eat even while eliminating.

[Anonymous]

So I am looking for something that will bring relief to my son. He is on elecare (this is week 3) and culturelle. We started on zantac and that stopped working so he has been on prilosec now for 8 days.

He is crying and whimpering at every feeding. He will eat an ounce or two and then just freak out. He is not sleeping at night. My heart is breaking.

The pediatrician tells me that he is too young for prevacid. What can I ask for? I just want to help him eat without pain. I want to be able to spend time with my older daughter and not spend all day feeding the baby. I want some normal. How can I help him?

Melissa

[hellbennt]

check dose of prilsosec

Marci Kids PPI Dosing Chart & dose according the the chart. give it a good 14 days.

hang in there! hellbennt2012-08-21 19:36:16

[Anonymous]

I am so sorry you and your little one are suffering so much! I feel SO badly for you! 🙁

I know that earlier you said you started reading my blog. Did you ever get through it? I often wish I wasn’t so detailed. 🙁 I would highly recommend that you try giving your little one some good quality probiotics and enzymes. And alkaline water if possible.

I am going to copy and paste something that I have on my blog….

This is something that a mom (Lorraine) sent to me after she sent it to another mom that is considering putting a feeding tube in her child. Lorraine has been wanting to take the time to write her whole story and whenever she does, I will post it here. But for now she said I could post this email she sent to the other mom.

Just yesterday (Aug 6) I sent our loaner alkaline water machine to Lorraine. She is wanting to give the water to her little girl along with the Digestive Health and see if it will help her even more.

The other mom at this point has decided to wait off with the tube while she tries to treat his problems naturally including Digestive Health.

Lorraine’s story…

My heart goes out to you as i read between the lines…so much i know you’v endured! Glad you hav the courage to contact a stranger; and yet i feel i know you somewhat because of our kids food issues. i will try to make a long story short. I totally intend to post my story yet this summer but have been so busy that all i can do is flop into bed, when i know i shoud be typing when the house is quiet. Dont feel at all like a failure…my youngest is 18 mths and still only 20lbs. Mandy was born with a stomach ache! My oldest girl was too, and had same issues, but has seemed to outgrow em better. When my milk never came in on time, i went to formula after catching on she was severely dehydrated;even peeing orange acid crystals. went straight to Alimentum, a special formula for colic and food allergies. if you dont know about it, please look it up. It has been a total lifesaver. Things sorta ok, fussy tho. Then at 3 weeks old got RSV and quit drinking so bad had to be hospitalized for 3 days. so yeah, didnt get many calories so far! And the tears and the panic when you cant make em swallow…but you all about that. Tried different formulas in hosp, and seemed to drink soy. As time went on always fussing,not sleeping good. Went back to Alimentum on my own. Seemed to want to eat table food early. And i wouda never let her if i wouda known it was gona make her sick in the long run. as Martha Koehns articles explain how as infants were not born with certain stomach enzymes. They develop as babies eat. (((I, Martha insert here… I don’t think that she completely understood what I was saying but I plan to visit with her about this. As babies grow they develop probiotics. And it is possible, like with my children, that a baby can inherit and be born with a pancreas that doesn’t produce enough enzymes.)))) So Mandy started eating and got sick. And sicker. And i was stumped. No fever, just eating slowing down, crying and crying worse. Diarhea. Arching,drooling,raw&bleeding bum,and much more .What we went thru with Doctors too much to explain, i wil write my story soon. But they kept putting her on antibiotics and we was desperate too. Even MRI. Was in hosp twice for dehydration. lost weight. Woudnt take a spoon or syringe, the screaming and fight not worth the calories burned! Meanwhile we watched her helplessly fade. Finally got a Dr we liked that had seen her as an infant convinced to see her. He is GOOD. Sed lets start over. Take her off all the many meds except acid-reflux, which she truly needed, and also start simple with lotsa maalox. When we got to him, he found she had thrush so bad throughout her esophagus and digestiv tract. also painful ulcers in mouth and cheeks. This burned from acid outa control. Treated all this, and she started improving after a week. But i wanted to know why she got anorexia in the first place and correct the underlying problem. Dr also prescribed probiotics since all them rounds of antibiotics had bout destroyed her stomach,killling off all good bacteria. Then i found Marthas article and knew was worth a try. Made total sense to correct her system from the inside out instead of treating problems. And this one big thing i learned and was told by many doctors with my girl that i want you to know. Babies eat only wen tha feel good…their systems govern their intake, its as simple as that. Adults eat anyway or because it tastes good. So tiny Mandy as an infant,fro example, shut down because wen she ate, it hurt. or burned. or however it felt to her. So thats why the screaming at her bottle. Refusing anything for 6 hrs at a time. U still with me am i making sense to you?! So long story short Mandy was way over a year by the time Shan Strattons digestiv blend helped her utilize her food her body so badly needed. It took only a couple days and i noticed less crying. And tears of relief rolled down my face wen she actually opened her little mouth to WANT more! Shes not cured by all means, we still have to negotiate and distract sometimes. But its more that she would rather be playing like she doesnt have time to eat! Also realized she does not enjoy eating like some kids seem too. But the acid reflux symptoms are gone, and the sour poops. It is truly amazing. off all meds execpt i still giv her maalox sometimes wen needs. She stil doesnt seem to tolerate whole milk very well, but doc figures she wil outgrow that since thats common problem. So much more could be said and i left out lotta details even tho this seems lengthy! But i just want your little son to feel good. And you too. Theres help out there and i believe these pills will make a difference for him. Us moms feel so responsible wen our kids arent at optimum health, and that is why my heart cries for you. Because i understand the stress. Im just wondering if his not eating is habit from knowing from tiny on up that food hurts, like Mandy. She acted scared to eat too. Even wen he feels better after being on these pills, it may take a bit of time for his brain to process a differnt mindset that its ok to swallow. Know wat i mean? or he may take right off. Either way, every body coud benifit from more stomach enzymes and probiotics, simplly because of the stuff in our food nowadays! Thats why this blend of digestive pill is more good than harm anyway.

Update…… Aug 18

Lorraine is very busy and when I text her the other day and asked if the water was helping Mandy she text back “She hasn’t barfed once!! I will call you soon.” Today the mom that Lorraine had sent the above story to emailed me and asked if the water was helping Mandy. So I text Lorraine and asked if she had something good to say about the water and if she had time could she quick email the other mom and let her know. Here is what she wrote to her….

Hi from Texas finally! iv sure been wondering how u are doing with the enzyme blend. Give me an update when u can. Martha texted me this morn and said you were wondering what the alkaline water was doing for Mandy. Like i mentioned to you, the pills have obviously helped but not a total fix. She is on 3 a day.They have been a miracle to get her little gut repaired from antibiotics and thrush and yeast. But still having fits with food. Like projectile puke, especially after eating a meal and then taking a bottle for a nap or bedtime…and then throwing up right after drinking it all her food that she ate hours befor not digested. sounds gross sorry! But wanted to explain how didnt seem to tolerate food. Then after that woud keep a bottle down of Alimentum. Grrrr cuz it costs very much! Like what will finally FIX her that she can EAT normal! U know the feeling. My husband refused to ever put her to bed cuz he just ended up getn puked on! Frusterating cuz the severe acid reflux sy
mptoms gone,and skin rashes gone but ended up with touchy stomach, so after an episode woud pour maalox and Rinitidine down her throat and she acted better. Anyway got hubby finally convinced to try water machine. And i had to eat humble pie myself cuz thru the years iv known friends that claimed this water was a miracle for healing what ailed you, and a preventive for disease. Ok, so we were pretty skeptical. And let me tell u, i still have not read the information that was sent with it, or totally understand how it hydrates your cells, i just decided to wing it and use it without being persuaded by all the books and DVD’s and great success stories that are out there. And this is what has happened to Mandy, without me knowing what SHOULD happen when you correctly take the water. She started sleeping ALL nite EVERY nite since the water, waking about 600 or so for a bottle. she used to cry out a bit, or wake a few times and sip a couple ounces or occasionally refuse bottle with a sick look on her face. Now at 600 she drinks like 5-6 oz.,then naps an hour or two more. Also has not puked ONE time since machine. Even when she should!! Like iv been trying her back on reg cheese, and yogurt. which used to make her puke at nite. One thing it hasnt increased her appetite or make her want food or drink more,she hates to drink anything but her few bottles. She still will only drink when convinced a few swallows, never picks up a sippy cup on her own. Im not sure why, but it is obvious to us now that its not because sshe doesnt feel good. maybe stubborn?! maybe just taking a while to retrain brain its ok? She will eat or drink her little bit and be happy and KEEP IT DOWN! So thats been going on now for almost 2 weeks weve had the borrowed machine. Where to from here?! im wishing it wasnt so very expensive, me and my husband grappling with this, but it is helping her overall health. And one of these days i want to know WHY and read up on it completely. I do understand the basic theory, and i have a feeling once we dive into the benifits of alkaline water we will be sold on buying one! And here i am, a believer in oxygenated alkaline water! How have things been going for you? Have the enzyme pills helped your little tyke? Im definitely not taking Mandy off of them. Her pediatrician has diagnosed her with a weak or sensitive immune system so the extra boost of probiotics and stomach enzymes are essential. So hopefully you can make sense of my late-night ramblings here and if you have any questions let me know. Good luck to you and your family!

Hi again, i jus got thinking later about a comment i made in my last note and wanted to clarify. I wrote that the alkaline water hadnt increased her appetite? but it has definitely made her eager to eat the little bit she does, not that she’s turned into this huge appetite. i didnt want you thinking it would not help your boys appetite because i truly feel it is the ticket. But im trying to accept this,that is all she may need for her body and to trust HER instincts naturally now that she feeling good. Her pediatrician keeps reassuring me how my husband and i are both small, our oldest is slim,etc,but Its this deep fear, this “iv got to feed this child” panic us mothers have inside that wants to overwhelm me. I know she will not likely go back not eating at all and be so sick because of the knowledgs to treat it we have now…but the fear will maybe always stay with me! Just wanted to clarify that comment didnt explain it the way i wanted to when i read it over. Good day to you…talk to you later again im sure!

[Anonymous]

Leah’s Mom- I’m sorry I don’t have the time to read through all of your posts, just read the last one and wanted to say, how can your son be too young for prevacid? I’ve never heard that before. My 3 month old has been on it since day 8 and it’s the ONLY thing that works. we tried prilosec and had a horrible rebound so went back to prevacid. I would imagine when switching from zantac to a PPI you are going to have this reaction -expect two weeks to see a difference. are you giving zantac at the same time to create smoother transition? I would personally give prilosec another week or two to start working, and if it doesn’t insist on prevacid. what dose is he getting now?

[Anonymous]

Thank you. Things have improved mildly. He is eating and gaining weight on the prilosec and elecare but every feed (except for the middle of the night) is painful and time consuming.

We are set to see the specialist next Friday. I lost patience with the pediatrician when they told me to put the prilosec in B’s bottle. I know you can’t do that– they should not be advising people to do that.

In the end, I am just so tired. He is waking all night long. It has to be better than this. Work is hard, parenting my older child is exhausting. It will get better right?

[Author]

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