Posted By Posting
Apr 18, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Isobels mom
have you thought about seeing a nutritionist to make a formula for her? Rice milk isn't nutritionally complete but they *could* add fats and vitamins to make it so. If Katie hadn't done well on EleCare we were going that route. She and my husband are allergic to corn but it is so broken down that they don't have reaction to it.
Apr 18, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I'm glad she does well on Elecare. We have gotten a refferral to a 'kid's' nutritionist but she was worse than useless. My GI has zero interest in her formula unless she shows blood in her stool so he won't even talk to me about how/what to feed her. When alimentum showed blood he said elecare and when elecare made her poo nothing but a blob of mucous he said "well, try a soy formula if you want" - totally dismissive. My ped IS usless- I use him because he's the only one I've found here in south Florida who will do a modified vax schedule. He's the one who gave me the name of the ridiculous nutritionist who told me mucous was ok in poo. What I'm getting at is that I have zero resources to help me find a nutritionist and frankly, zero energy to make it through the trial and error of finding one. My insurance won't pay unless med necc so it's OOP as well. I'm just really hoping that someone out there knows of a product that I'm missing- something I haven't seen. We are doing fairly well on the isomil advance but I can see the end of that coming. This is all part of why we're thinking of going to Miami childrens - they would hopefully be a whole body approach vs our current docs' one piece is separate from the other style. I have thought about doing a personalized formula for her but obviously need the help to do it right. Our current food plan (meaning my dh & I ) is to push solids a little more so there's less formula allergens to deal with. We'll see. I appreciate the suggestion - do you know of or have contacts with a decent nutritionist in the west palm/broward/miami-dade area?
Apr 18, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
This might sound a little crooked but...could you use this ped for vacs and another for her total care. I mean since this one seems less than interested in her well being for the most part, maybe someone else might take her current issues more seriously.
Apr 18, 2009
mommato3
I think you should go for the scope and probe. It is a "whole body" approach that's usually needed. A lot of times their are multiple issues-allergies, reflux, behavioral, slow emptying, etc and they're all related. Also these children's hospitals have nutritionists, therapisys, etc. that can help and maybe just a one-time consult is all you need. If she is truly allergic to that much stuff I would fight that it is medically necessary. Although if you're like me you may be too tired to fight insurance. Fighting doctors is enough!!
Apr 18, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
I don't have one, I live in CA but we have seen EVERY SINGLE DOCTOR AVAILABLE TO US. I would not/am not done pushing and if they don't care to help you then find someone who will. All formulas are made with corn, soy or are made for toddlers so they have food in them. At 6 months she still needs all of the nutrition/fat that formula has.
Apr 18, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Oh, and Katie has been scoped, probed and allergy tested and all came back negative even though my FIL died from reflux and we know that she has so many food allergies that it is hard to find food that she CAN eat. I too am tired but she is more than worth it!!!!!!
Apr 18, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
You know, I'm not saying my daughter isn't worth it. However, there comes a time when you're just tapped out mentally, physically, spiritually and financially. When that time comes it's important- even essential- to step back, take a deep breath and a short break before you press on. Failure to do so can lead to making stupid mistakes and rash decisions. I'm glad that the simple solution of elecare worked as a food remedy for your daughter, it certainly does not work for everyone as I can attest. The search for the best solutions for our children is a challenge and personal to each individual. I have made the decision that going forward, the doctors we DO choose to see are going to be highly recommended and thoroughly researched as I have no desire to drag Isobel through every waiting room in West Palm Beach. I believe that at this point the sniper approach is preferred to the shotgun approach, but everyone must do what works for them and their children.
Apr 19, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
/P/Completely not suggesting that you aren't trying/doing your best for her! Not saying that at all!! /p/ /p/Suggesting that you have seen 1 nutritionist who was a nut. We saw a geneticist because Katie stopped growing completely. Stopped gaining weight, hadn't gained an ounce in months. The doctor looked at her and told us she is a beautiful child who doesn't have downsyndrome and is using food as a weapon against us; at 10 months! Did not look into why my 10 month old had severe developmental delays, zero growth and took in enough calories yet hadn't gained an ounce. I understand needing a break, I have been doing this for 18 months!! No processed food for us, no easy meals, no going out to eat with our friends and our kiddo in tow because she cannot eat a single food out in a restaurant. I have been there but we don't get breaks because our kids don't get breaks in their pain!!/p/ /p/If your pedi won't listen find one who will!! THEY work for you, not the other way around!! Good luck!!/p/
Apr 19, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I know your dd is very young, but is it possible to use Ultracare for Kids and fortify it for a short period to let her system restabilize? Or trial some probiotics to rebalance the gut flora? There are very hypoallergenic ones out there - check out www.protherainc.com and look down the left side list under Klaire labs. You can read their mission statement and what ingredients they use. Sometimes the system is just out of balance from being unstable for so long and it's fighting everything put into it.

We all totally get the tapped out feeling - I was one step short of being straightjacketed when my dd was about 3-4 months old and nothing was working. I'm amazed my marriage stayed intact (I was that crazy from sleep deprivation and trying to find money that we didn't have to get all the meds and special formulas)

Vent away here, mom. Remember none of us are attacking when we offer advice, and we'll remember that sometimes the advice has been taken and didn't work, or it's just not time to tru it yet. HUGS and prayers coming to you!

Apr 19, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Oh yeah, and I lived in Boca Raton for 4 years - the medical care there is crappy too, esp for kids since it's mainly old retirees down there, so I feel your pain!
Check with your
doctor first!