InfantReflux.Org Forums: Update!

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kendramom
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Topic: Update!
Posted: 29 November 2007 at 9:54pm

Hello Moms and dads,

i am sorry i have not been around much. I have been doing food trials and since the food has to be wheat, gluten, soy, milk, corn free, i am spending most of my awake time researching food free of these and cooking!

Any ways,

Kendra is oficially off the the zegerid (has been for two weeks now) and it's going good!!!

We are working on getting her off the neocate, and using a potato based milk with hemp protein powder and coconut oil for fat.

We are working on this, very slooooooooooow of course, but i am hopeful she wil do well with this change.

She is tolerating:

organic quinoa, kasha (made from buckwheat), squash, green beans, pears and peaches. we are staying away from applesauce, bananas, tomatoes product among others.

She hardly vomits (90% vomit free) and is tolerating up to 6 ounces of fluids and food at a time. This is huge considering she had a hard time with volume.

She however is not eating as much by mouth and our therapy thinks it might be behavioral. I take one day at a time. We are working on a blenderized diet (food through the tube of course) an donce she is tolerating that well, we will look into a feeding clinic for more aggressive therapy.

She is getting great benfits from digestive enzymes as well as several suplements and minerals to help her gut. She is also on probiotics.

Thanks for reading this far. And thank you all for the support you have given us. it has really made adifference and i am planning on coming back more often, once i get this diet thing figure out!!!

Leo

Edited by kendramom - 29 November 2007 at 10:26pm

Leo mommy to:
Melanie 3/02. My sweetest girl.
Kendra 7/06 Former refluxer!

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s&h's mum
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Posted: 30 November 2007 at 8:08am

That's great news, Leo! I'm glad that Kendra is doing so well. Please keep us updated and good luck with the feeding therapy. It seems like the feeding aversion is a long road, but one day, they suddenly turn around. Hope that happens for you guys soon.

LORI, mom to:

Sarah-09/03-My sweet princess.

Hailey-05/05- My funny little girl. 4 years old, but still my baby.
Past feeding aversion. Now typical eater, off prevacid for 1.5 years!

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Cooper's mom
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Joined: 12 May 2007
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Posts: 2248

Posted: 30 November 2007 at 2:33pm

Great news Leo. I hope things continue to go well for you and Kendra... She has been through so much.

Beth
Cooper 2/07 (former refluxer and MSPI. out grew egg allergy at 3.5yrs old)
Caroline 1/10 Reflux FREE!!!

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Bensmama
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Joined: 05 November 2006
Location: United States
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Posts: 1831

Posted: 30 November 2007 at 7:47pm

Wow! That's great news Kendra. I'm glad that she is doing so well with the foods so far. I can only imagine what work it must be to figure out a diet for you. You go, mom!!! Thanks for the update.

Naomi - mom to

Claire 11/5/03 - former refluxer. Med. free at 9 months. Breastfed 17 months

Ben - 9/14/06 - former refluxer; TED for 6+months; med free at 20 months. Breastfed 21 months

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amy0013
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Posts: 1793

Posted: 30 November 2007 at 8:49pm

Great news!! Sounds like things are heading in the right direction!!! YAY!!

Amy
Sarah 4/25/06 Med free!
Emma 11/23/09 Reflux and Neocate

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evergreenie
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Joined: 27 October 2006
Location: Australia
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Posts: 1608

Posted: 04 December 2007 at 5:41am

Thanks for the update. I am glad Kendra is doing better. I'm sure it is pretty hard work some days, you are doing an amazing job.

Therese

Alana Nearly 3-Former refluxer and Milk Intolerant. No meds and full milk!

Nick- 8 weeks and milk and soy intolerant (we think!)

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monty123
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Joined: 03 August 2003
Location: United States
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Posts: 2673

Posted: 04 December 2007 at 8:38am

Don't know how I missed this. This is great news!!!! So glad things are working out for you!!!

Ann Marie
Dylan 2/28/03 (27 wkr, past GERD, NEC, ROP, GBS/meningitis, brain bleed)
Carter 3/25/06 (29 wkr, past GERD, Cardiac arrest w/Immunizations, syndromic features?, all neg tests so far)

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hellbennt
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Posted: 04 December 2007 at 8:11pm

thank you for the update!!

can you post what brands of things you are finding that work?

I'm curious about: the potato milk, hemp protein powder,

coconut oil (what brand & what do you look for in a coconut oil? I don't know much about this oil),

digestive enzymes (what kinds? again what to look for)

supplements and minerals

Sorry for the questions

but as you know I love collecting information

YAY!!!! for Kendra

!!!!!!!!!!!!!!!!!!!!!!!!

~laura

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

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kendramom
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Posted: 04 December 2007 at 8:25pm

THANK YOU EVRYONE for the support!!!!!!!!!!!!! It really means a lot!

I need to whine a little

.. i am soooo tired!! this diet is really time consuming!! i am almost a nutritionist now

Leo mommy to:
Melanie 3/02. My sweetest girl.
Kendra 7/06 Former refluxer!

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kendramom
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Posted: 04 December 2007 at 8:59pm

Originally posted by hellbennt

thank you for the update!!

can you post what brands of things you are finding that work?

I'm curious about: the potato milk, hemp protein powder,

coconut oil (what brand & what do you look for in a coconut oil? I don't know much about this oil),

digestive enzymes (what kinds? again what to look for)

supplements and minerals

Laura

Kendra is tolerating:

Ancient Harvest Traditional Organic Quinoa. It tastes pretty good (like rice) and you can see the natural grain ring once is cooked! I have also tried Traders Joe with no problem, but that was a gift and we don't have a Traders Joe nearby.

Wolff's kasha, but i really have to roate this, as i found she does not to tolerates a lot of it at in a day, plus i read buckwheat can be a harsh grain on the tummy.

we have not tried some of this below yet as she is sick with a bug right now.

We were trialing the hemp protein powder, but have to stop beacuse of the bug.

i bought manitoba Hemp protein powder, they also sell milk. It's a canadian company. This particular brand has the lowest amount of sugar in their milk in comparison with the competiton.

I bought dairi free potato milk from www.vancesfoods.com It's a powder and you mix it with water. You can concentrate to increase calories a bit.I have not started on this yet.

ThaiKitchen organic coconut milk. we will be using this for the humungus amount of good fat in it (lost of good calories); plus i have read it has antibacterial properties and it's great for sensitive gut. The organic one does not taste as good as the regular, but Kendra is getting through her tube, so no problems here. We have been rubbing Spectrum unrefined organic coconut oil on her skin (i get it from my HFS)and she likes to leak it even. I notice her eczema is much better and her skin is not as dry. we also give her folic acid.

i started her on Acid soothe from Enzymedica and Lypo. I saw improvement with her reflux, but i have to stopped the acid soothe as she was reacting to the papaya leaf iin it. We contiue with the Lypo. www.enzymedica.com

[hellbennt editing this- foumd lypo, but it's lypo gold: http://www.enzymedica.com/products/Lypo_Gold?PHPSESSID=44bc6ea9765deca5ae75b4c55190be4b#tabsection

contact them General Inquiries: info@enzymedica.com
? and/or send a pm to Leo?]

She also takes zymes prime, no phenol as needed. http://houstonzymes.com/mm5/merchant.mvc?Screen=CTGY&Store_Code=hni01&Category_Code=zp

[hellbennt editing this- found zymes prime and a no phenol- which one?

contact them? E-mail: info@houston-enzymes.com ]

and maximum expectrum from kirkman labs http://www.kirkmanlabs.com/products/enzymes/MaxSpecZym.html

I also get their hypoallergenic probitoic and other suplements.

kendra had a hair test done and showed she was low in Selenium, copper and calcium. we are suplementing with that and i bought them from

www.iherb.com This website has excellent prices and quality product on most suplements you can think off. we just started on this new minerals so can't tell if they are working yet.

i hope that helps Laura

Leo

Edited by hellbennt - 22 January 2012 at 7:54pm

Leo mommy to:
Melanie 3/02. My sweetest girl.
Kendra 7/06 Former refluxer!

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Feeding Issues and Aversions
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Topic: Update!