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Feb 19, 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.
Allergic to Elecare
Argh!!!!! Isobel appears to be allergic/intolerant to Elecare. Her excema is flaring up quite badly and the butt burn is back. She also has the horrible noisy wet sounding respiration during and after her feeds. I can't tell if it's only in her nose/sinus or in her lungs too. The last stool sample was neg for blood, but I'm afraid it's only a matter of time. She seems to do great for a few days and then spiral downhill fairly quickly. At this point she's taking 5oz once a day but only 3 oz every 4 hrs for the rest of her meals.

I called in to the GI and left a msg wondering what to try next and the msg back was a generic "try a soy formula". Thanks. That narrows it down for me. We made an appt to see him today (where I will try not to be sarcastic with the man). My question is what should I ask him at this point?

Feb 19, 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.
Sorry. Technical difficulties with the iPod.

Anyway, I'm starting to think her reflux may all be allergy related. She's never had any diagnostic testing. I know allergy testing isn't reliable on one so young so how do we figure this out? She did better when I was BFing and I eliminated dairy and soy (I can't do that diet long term for health reasons) she did great the first few days on Alimentum (we did RTF the first 3 days then powder) then had blood in her stool after a week on Alimentum. She's been on Elecare for about 10 days now and it's just not looking good.

What should I ask the doc for? Should I be asking for testing? What kind? Only a new formula? I'm just at a loss and we see him today at 2:45 eastern. Any feedback would be appreciated.

Feb 19, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
Sarah,

Meggy has a great deal of trouble with Soy, dairy, corn, vanilla, strawberry, pork, gelatin, and shellfish. (Hope that is the full list)

We struggles for over 1 year trying to find anything she could tolerate before finally calling John Hopkins GI department in Maryland. While we still have our challenges-mostly pain- she is tolerating the Medical food they gave her and growing.

She still deals with a great deal of pain on a daily basis, but she is doing okay otherwise. Her nutritional status is way up compared to before. I wish that we had taken her to Hopkins much sooner. They are willing to think outside the box and to try different things when needed.

Meggy is currently on a medical food called Ultracare for kids. It is mixed like an infant formula, but fortified to be nutritionally complete. It is not nutritionally complete as is, but rather fortified with a recipe that the GI and nutritionist made to meet my daughter's specific needs. It does carry the warning of Vitamin A overdose.

As long as my daughter drinks 1 quart a day, she gets enough nutrition to continue to grow properly.

The Ultracare for kids is rather pricey. We have not been able to find it locally. Insurance refuses to pay for it. We buy it online and make sure to order 10 days ahead of when we actually need it. All that being said, it has been well worth the price and has saved us many hospital visits.

Have a great day. Hope this helps. Engi

Feb 19, 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.
Noor,

what were Meggy's symptoms? How did you figure out corn (or any of the other allergens?) I've seen you mention ultracare before, but at what point do I go there? Really, Isobel Amira isn't all that bad. Good weight, on target developmentally but starting to have feeding issues, bad excema, trouble sleeping, crying in sleep (even though reflux appears to be in control). The doc seems dismissive as if she's not bad enough yet, but I don't want her to get 'bad enough'. I just don't know what to do and that's a totally foreign feeling for me. I ALWAYS know what to do or at the very least know I can figure out what to do!

Feb 19, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
Sara,

Meggy wasn't growing. She wasn't holding down formula for more than week at a time. She was miserable all the time.

With Ultracare, I like it because if Meggy is gonna drink more than she eats, she still gets nutrition. We add some oil, salt, and sugar, all specified to her weight.

We figured out her allergies and intolerances through daily food diaries and symptoms journaling. I took every formula she had ever tried, and the baby foods from the jars. I did tons of research, and started to find out that there were very few ingredients that were common in everything.

Check with your
doctor first!