Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Preemie Got A Prescript For Formula


averyannsmom

Recommended Posts

averyannsmom Rookie

Hi,

DD having rarely been exposed to gluten and other allergens got a clear bill of health on allergy tests..d'uh. But the consensus at this point is that DD is certinly protein sensitive (soy & dairy), as displayed in her mucus and diarhea diapers over the past 2 months on Alimentum and then alimentum RTF (the latter being a lot better).

So we have been givn a precript for elecare...because they had the most sample cans of that brand and they gave me 8 cans.

So we are trying this for 2 weeks to see if it will clear up the problem. Any suggestions where I can get this for the best price? Of course, my insurance (Wisconsin) doesn't cover it (and our coverage is really good). The insurance company only recognizes elecare and neocate as an Over-the-counter medication....Even though you have to have a prescription and be supervised by a doctor...WTH!!!

I haven't been able due to DD compromised immune system (due to prematurity) and all her medical problems and appointments. I'm doing some work from home but it is on a commission only basis...so I haven't made a dime and now I am going to have to shell out $300+ per month to feed my infant.....sigh. We are not low-income (though used to living on 2 salaries) so wic is not an option.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

I'm so sorry to hear that things are difficult for you. Pardon me if I've suggested this to you before (I cna't remember)--how old is your daughter? Is there any possiblity that you might be able to lactate? Even if you could only supply some of her feeds, that would probably help her tolerate formula a whole lot better, not to mention protect her from food allergies, even if she gets your milk in a bottle.

I'm convinced pumping saved my first baby's life (he hadmultiple medical issues)--and he even latched on once I had something "in there" to drink!

I've been told that there is a 4-month window of oppoortunity, where you can re-lactate, even after you've "dried up."

Either way, good luck!

averyannsmom Rookie

It's been 5 months since I pumped, and even at that point she was not handling my milk well. I have health issues too and I could not cut out all protein including soy, all dairy except yogurt, and all citrus and still be able to supply enough energy for both of us. I didn't have a great supply to start with because I could only pump. DD was too small and weak to breast feed for a long time, and when she got bigger she was still only allowed to nurse 1-2 times per day. The weirdest part is that she tolerated alimentum for several months before we started having problems. I am not yet convinced that it will solve the problem, but we will see.

Thanks!

I'm so sorry to hear that things are difficult for you. Pardon me if I've suggested this to you before (I cna't remember)--how old is your daughter? Is there any possiblity that you might be able to lactate? Even if you could only supply some of her feeds, that would probably help her tolerate formula a whole lot better, not to mention protect her from food allergies, even if she gets your milk in a bottle.

I'm convinced pumping saved my first baby's life (he hadmultiple medical issues)--and he even latched on once I had something "in there" to drink!

I've been told that there is a 4-month window of oppoortunity, where you can re-lactate, even after you've "dried up."

Either way, good luck!

Fiddle-Faddle Community Regular
It's been 5 months since I pumped, and even at that point she was not handling my milk well. I have health issues too and I could not cut out all protein including soy, all dairy except yogurt, and all citrus and still be able to supply enough energy for both of us. I didn't have a great supply to start with because I could only pump. DD was too small and weak to breast feed for a long time, and when she got bigger she was still only allowed to nurse 1-2 times per day. The weirdest part is that she tolerated alimentum for several months before we started having problems. I am not yet convinced that it will solve the problem, but we will see.

Thanks!

Wish I could help! :( AveryAnn is a beautiful name, BTW...

Satori Newbie

You can get it covered with a fight, check out www.kidswithfoodallergies.org and check the forums. Lots of parents who won insurance battles for formula coverage.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,113
    • Most Online (within 30 mins)
      7,748

    Vegan Brandy
    Newest Member
    Vegan Brandy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      That’s great to know. Thanks Scott
    • trents
      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
×
×
  • Create New...