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Angi
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| Posted: Dec 23 2009 at 8:10pm | IP Logged
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Continued prayers for you both.
FYI: the doc is correct, it is extremely rare for the children to react to the fractionated coconut oil in the elemental formulas, and it looks like they all have it. My Ana drinks (when I can convince her to  ) EO 28 Splash (made by the same people as Neocate). She is allergic to corn and the first ingredient is corn syrup solids. She does not react to it at all.
If you have any specific ?s about the formulas, please feel free to pm me.
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drmommy
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| Posted: Dec 23 2009 at 10:34pm | IP Logged
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I am so glad the doctors had an answer, and I hope with all the changes it makes a difference. I hate it when children have the food/eating challenges!!
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Chari
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Glad to read all of the updates!
Continued prayers for your sweet girl!!
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Chari...Take Up & Read
Dh Marty 27yrs...3 lovely maidens: Anne 24, Sarah 20 & Maddelyn 17 and 3 chivalrous sons: Matthew 22, Garrett 16 & Malachy 11
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4 lads mom
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So glad to see there is progress!!!  Maybe you could try the neocate in the doc’s office....the allergist. I know my allergist would insist on it....do a scratch test with the formula, and then take a very small amount, and see how she does. I realize some reactions are a lot more subtle, and take time to show themselves, discuss that with your doc. I am very familiar with Neocate, it kept my little guy going for three years!! Call the company, I found them to be very easy to talk to.....I can understand your doc’s concerns AND yours.....maybe there is a middle road.
I’ll be praying, your story is near and dear to my heart. We have been talking A LOT about food allergies this weekend, with the news that Children’s Hospital, in Boston, is doing an amazing study where they give a med called Xolair for several weeks...and then desensitize the child to milk. The one child who was desensitized so far with this, who used to break out in hives and go into anaphylaxis with casual exposure to milk, (that would be my son’s story as well) is now eating PIZZA, pizza with cheese....it is unreal, such a story of hope for all of us with children with severe and life changing food allergies!!!! If you live near Boston, it might be something to look in to.....
In the mean time, I am very empathetic to your concerns and challenges...keep us updated!!
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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mathmama
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| Posted: Dec 28 2009 at 8:14am | IP Logged
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Thank you everyone for your prayers for my Anna Mary. For those of you who have used Neocate and who are comfortable talking about your situation could you PM me? I just don't feel that my dd needs it. She eats very well (now that she is feeling better) and eats a varied diet (considering her limitations) and eats nothing but super healthy foods (necessitated by her diet, she can eat nothing processed). When I go to the Neocate website they say it is for children with severe impairment of the GI tract. My dd just doesn't fit that description. She doesn't seem to have any issues absorbing nutrients and looks perfectly healthy. I can see how this can be a life saver for those who need it, but I just don't see my dd as being someone who needs it. So, if your child has been on Neocate and you don't mind could you please PM me your child's situation. Perhaps I am just being too proud, but I just don't feel she needs it. Thanks 
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Beth, wife to Tom and mommy to 4 beautiful girls:
Therese 11/04
Anna Mary 6/07
Veronica 10/09
Theodora 11/12
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drmommy
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| Posted: Dec 28 2009 at 8:45am | IP Logged
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Continued prayers and resolution to this issue.
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StephG
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Praying here...
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Mother Mary please watch over us
Steph
Wife to dh, mommy to dd '91, dd '92, dd '94, ds '94 and dd '95.
Patiently waiting to meet 9 more who have already gone home.
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mathmama
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Thank you for your continued prayers. I just wanted to give a small update on Anna Mary. We drove down to CHOP yesterday for an u/s on her thyroid. The radiologist was able to see us immediately for a preliminary report and all looks good  The only thing somewhat abnormal was a little extra blood flow to the thyroid that the radiologist believes is due to healing going on in the thyroid. I asked her about the size, but she was unable to comment on it due to the fact that standards are not set for the size of the thyroid in a child her age.
Next week we go for more blood work in anticipation of her follow up with the endocrinologist on the 20th. All and all she is doing great. Her appetite is totally back to normal and her energy is both boundless and exhausting  She is a normal 2 yo again! I have held off on contacting the nutritionist and definitely have held off on the formula. Our ped agrees that it might be good to contact the nutritionist both to keep a good relationship with our allergist and because it won't hurt and I may learn something.
Please pray for our appt on the 20th. Please pray for good news and for me as I will be going down there alone with Anna Mary and Veronica because I couldn't get an appt for a day when dh doesn't teach. Thank God Anna Mary is a model patient so I know won't be dealing with a screaming child, it is just nice to have an extra set of hands.
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Beth, wife to Tom and mommy to 4 beautiful girls:
Therese 11/04
Anna Mary 6/07
Veronica 10/09
Theodora 11/12
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stellamaris
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Thank you for the update, Beth. I am so happy Anna Mary is doing so well! Will continue to pray here for an easy time at your appointment on the 20th, as well as for a good report from the dr.
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In Christ,
Caroline
Wife to  dh 30+ yrs,ds's 83,85,89,dd's 91,95,ds's 01,01,02,grammy to 4
Flowing Streams
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4Real Forums : We Pray to the Lord
Topic: For my little girl--update
