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12-24-2012 at 3:52 PM
joi717
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joi717 is not online. Last active: 05-18-2013, 8:11 PMNewbie

Thinking Dr.s are WRONG!

We had LO on nutramigen and he kept getting rashy and swelling. I took it upon myself to find a formula with no DHA/ARA. He did well on it, for a month. Then we went to actual allergist and they said he was allergic to milk, eggs, wheat, soy and peanuts. LO is almost 5 months.  So, fine, we switched off of  the natures one dairy based wit no DHA or ARA. And on to similac alimentum. After 6 days, he has the symptoms all over again! My gut tells me this isn't working..... Went to reg pedi today and tried to explain it, but he brushed it off. So frustrated!  Feel like I'm giving him poison and of course it's Xmas week, so not too many dr.s open.   Any thoughts?
 
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12-25-2012 at 10:00 AM
imimahoney
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Both nutramigen and alimentum are corn based with trace amounts of dairy proteins. He could be reacting to either of those things. 

You should probably switch him to an amino-based formula, such as Neocate or Elacare. They are by rx only and are not always covered by insurance. They are VERY expensive but if your LO is reacting to "safe" formulas those might be your only choice.

Have you seen a pediatric GI. They are the ones who diagnosed my LO with MSPI and who would have written the script for Neocate if it was needed.  
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12-25-2012 at 3:21 PM
joi717
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joi717 is not online. Last active: 05-18-2013, 8:11 PMNewbie

Havent seen a GI yet. The allergist said we may need to do elecare next. I just couldn't believe the bad reaction he is having to the safe formula. He was a 0 for the corn allergy, so I didn't think it was that. I think it's the DHA and ARA they artificially add. But not sure. Thanks for replying! I'm going to check with my insurance tomorrow.

 
 
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12-25-2012 at 8:46 PM
emberlee3
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I'm sorry.  I have been through a very similar experience with DD's pediatrician.

Thank goodness for our wonderful GI nurse practitioner who BELIEVES me about stuff.  DD is on Neocate, and still has blood in her stool.  I have no idea what the problem is.  DD is scheduled for endoscopy in January.  I hope you find a specialist who trusts your mommy instincts!
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12-26-2012 at 7:46 AM
joi717
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Thanks, me too. DS never had blood or mucus in his stool. Just horrid eczema.  How do you know whether or not you need GI instead of allergist?

 
 
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12-26-2012 at 11:26 AM
joi717
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joi717 is not online. Last active: 05-18-2013, 8:11 PMNewbie

Just got in tofu with allergist, switching to Elacare..

 
 
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12-28-2012 at 12:04 AM
tnd81
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Have you seen a dermatologist for the eczema? I kept going to the allergist for my DD's eczema. Then she had a huge flare up turned staph infection it was horrible. 3 trips to the derm over 6 weeks and we finally got her cleared up and her skin has never been so beautiful since she was born. She's 2.5 yrs now and never had a single day of clear skin til now. There is hope for the eczema. I didn't think so in the thick of it but the derm will help you figure out a plan that will help. GL

BTW, if you are interested I can list what helped us. But I've learned every kid has their own "miracle" concoction for what works. Ours is a cream called Cerave.
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12-29-2012 at 6:16 PM
joi717
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joi717 is not online. Last active: 05-18-2013, 8:11 PMNewbie

tnd81:
Have you seen a dermatologist for the eczema? I kept going to the allergist for my DD's eczema. Then she had a huge flare up turned staph infection it was horrible. 3 trips to the derm over 6 weeks and we finally got her cleared up and her skin has never been so beautiful since she was born. She's 2.5 yrs now and never had a single day of clear skin til now. There is hope for the eczema. I didn't think so in the thick of it but the derm will help you figure out a plan that will help. GL BTW, if you are interested I can list what helped us. But I've learned every kid has their own "miracle" concoction for what works. Ours is a cream called Cerave.

 

Thanks! I actually just picked that up today. I had a derm appt scheduled and the pedi told me to skip it and go to allergist first.  Last night and today his back was oozing, his ears look like they are going to fall off again. We did so well on an organic dairy formula and then allergist said, nope, he's allergic. Now on Elecare and eczema is back full force.  How did you know when it turned into staph? 

 
 
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12-30-2012 at 4:11 PM
Gap7
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I would put him back on the organic milk that was working ASAP. It could be the MSPI someone mentioned and its not cow it's the soy the cows eat and soy and boys don't mix anyway. 

 I thought I was allergic to chicken but turns out its whey. And came to find out they feed chickens whey protein. So I can eat cage free eggs and chickens because they are not consuming whey. They feed cows soy and perhaps the organic cows are grass fed and don't eat soy thus soy is your real problem not cows milk. 

Did I lose you? 

 Good luck!  
 
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12-30-2012 at 9:20 PM
tnd81
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I've never had oozing eczema. That sounds HORRIBLE what your poor baby is going thru. I would also go back to the formalula that was working. Eczema is torture for these poor kids.
With the staph episode, it was like all of a sudden her skin went from blotchy to head to toe rash. It was coming up so fast we almost went to the ER. It was really weird. The next day I took her to the allergist where they did skin cultures for staph, herpes and chicken pox. But they didn't give many answers or help at all. 2 days after it still not improving and test results not back I went to the derm because they were starting to ooze and become sores. They gave her antibiotics and tips like wearing wet pjs unde dry ones, same with socks, use All Free and Clear detergent, etc. stuff the allergist wasnt able to advise on. For allergy skin issues I will def be seeing the pedi derm over the allergist. They helped me so much. Like I said, it took 6 weeks to clear up and her skin has been amazing for months. GL!!
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12-30-2012 at 9:27 PM
tnd81
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Oh and the cerave CREAM is I think what was our saving grace. I also use the cerave cleanser. I apply the cream 23 times a day to her entire body. I'm glad you bought some and really hope it works for you!
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