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momtomany
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| Posted: Dec 15 2009 at 12:31pm | IP Logged
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Angie Mc wrote:
(A practical tip for consideration: ask Mary Ann R. to make you some of her spiked fruitcake - perfect for cheering a mother  .)
Love,
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For that nice recommendation, I should send you one! 
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Mary Ann in PA
wife to MIchael, mom to Elizabeth, Becca, Tim, Peter, Andrew, Sarah, Matthew, John, Leah and Joseph
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Donna Marie
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| Posted: Dec 15 2009 at 1:27pm | IP Logged
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Praying for her! God bless you, mama!
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God love you!
Donna Marie from NJ
hs momma to 9dc!!
Finding Elegant Simplicity
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mathmama
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| Posted: Dec 15 2009 at 3:28pm | IP Logged
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Thanks everyone for the prayers. We have a little more info. She is slightly anemic, is B12 deficient, and Vit D deficient. I think the anemia can be caused by the hypothyroidism. It is not clear why she is deficient in the other 2. I know she has no sources of them in her diet, but her ped is still surprised that she is deficient in them (especially the B12). We don't know what her iodine levels are yet. We do know that her thyroid antibodies are negative which means no autoimmune disorder, thank God. The endocrinologist has upped her thyroid meds and we are going down to CHOP to see him tomorrow. We are also going down there on Fri at 9AM to see a GI doc because our ped is worried that she has issues with malabsorption.
My head is spinning right now. Going down to CHOP twice in one week is a bit daunting, especially getting down there for 9AM. All of this the week before Christmas. Please pray for answers and for good weather for our travels.
Oh, and there is some good news. Anna Mary seems to be improving after being on the thyroid meds just since Sun. She seems more active, happy, and her appetite is improving. Thank you so much for your prayers. I am overwhelmed by the support I feel here 
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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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Mackfam
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| Posted: Dec 15 2009 at 6:14pm | IP Logged
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Oh, I'm so relieved that an autoimmune issue has been ruled out! And, very happy that she seems to be acting more and more herself!
I'll continue to pray that in spite of the appointments, you can maintain a sense of quiet during the last little bit of Advent...and I'll definitely pray that some solutions come from these appointments!
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Jen Mackintosh
Wife to Rob, mom to dd 19 , ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
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mathmama
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| Posted: Dec 15 2009 at 6:51pm | IP Logged
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Here to report more good news. I just got a call from the GI doc at CHOP and they can see her tomorrow before her endo appt, so we don't have to make that trip twice. I also found out my mom is coming out for my birthday :) My girls are going to be so excited to see her! Your prayers are so powerful, thank you so much!
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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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Angie Mc
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| Posted: Dec 15 2009 at 9:19pm | IP Logged
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Oh I'm so glad that you are finding good information and some logistical relief! I'm so happy that your sweetie is feeling better. My prayers continue for you Anna Mary.
momtomany wrote:
| For that nice recommendation, I should send you one! |
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...yes you should 
Love,
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Angie Mc
Maimeo to Henry! Dave's wife, mom to Mrs. Devin+Michael Pope, Aiden 20,Ian 17,John Paul 11,Catherine (heaven 6/07)
About Me
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SeaStar
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| Posted: Dec 16 2009 at 6:49am | IP Logged
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Oh, I am so happy to hear all this good news! I know it is no fun having a sick child. I will keep you all in my prayers.
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Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
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mathmama
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| Posted: Dec 17 2009 at 6:13am | IP Logged
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First I want to thank everyone for your prayers for my sweet Anna Mary. They definitely have pulled us through this last crazy week.
We spent a long day at CHOP yesterday. I thank God for that place. So many docs so focused on getting children well. Their bedside manner is top notch. We saw docs in the GI dept and a doc in endocrinology. The good news is that both concluded independently that her problems (deficiencies in iodine, Vit D and B12) are most likely caused by them simply not being in her diet. This is great news because it is easily rectified (well, easily if the supplements we give her are safe for her). Both depts are checking other things just to be sure that they aren't missing something. The GI dept is testing her for celiac and also ordered other labs. If these other labs come back askew they will test her for cystic fibrosis. There are other much more rare diseases that they will look for if none of these are the answer. The endocrinologist ordered a couple labs and an ultrasound of her thyroid just to make sure it looks fine (except for being enlarged).
I thank God for her enlarged thyroid because without it there would have been no outward sign that she was so deficient in these other things which are so very important. Her Vit D is so low I am thoroughly embarrassed. But, all these things are now easily solved now that we know what we are dealing with. As long as she continues to tolerate the iodized salt that will be the way of supplying her iodine. She will also continue on the thyroid meds until the doc is 100% sure she doesn't need them anymore. She will get a B12 shot at her ped. This seems like the safest route for that. I ordered a Vit D supplement that should be arriving today. I pray that she tolerates it. If not, we will find another way to get that into her.
Anna Mary's case is truly a rare one. You don't want to hear them say at a major research hospital that they see a case like your child's perhaps once in 10 years (this is what the GI dept told us). The endocrinologist has never seen a case of hypothyroidism caused by iodine deficiency. Everyone was very nice and no one acted accusatory towards me, but as a mother it is tough to hear those things. I know I can't beat myself up, but I am a bit disappointed in myself. But I have learned from this.
Please continue to pray that all the lab work comes back to confirm this preliminary diagnosis. Thank you so much for all your prayers. I pray that all of you have a blessed Christmas
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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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guitarnan
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| Posted: Dec 17 2009 at 6:53am | IP Logged
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Thanks for the update! I'm so thankful you have such great doctors.
Praying for all of you...
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Nancy in MD. Mom of ds (24) & dd (18); 31-year Navy wife, move coordinator and keeper of home fires. Writer and dance mom.
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amyable
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| Posted: Dec 17 2009 at 7:04am | IP Logged
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Just seeing all this now - adding my belated prayers! I'm a mom of several food allergic kids who also have other possibly related issues - I totally empathize! Sometimes it is SO hard. You are blessed to have doctors who are willing to help.
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Amy
mom of 5, ages 6-16, and happy wife of 
The Highly Sensitive Homeschooler
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Mackfam
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| Posted: Dec 17 2009 at 8:33am | IP Logged
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I'm so relieved to hear that this visit yielded so many answers that are all completely workable! Half the battle is knowing and having a direction to go! You're doin' great, Beth!!!!!! I'll keep praying as test results come in and the rubber hits the road, so to speak, as you try to offer some supplements and solutions to assist little Anna Mary!
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Jen Mackintosh
Wife to Rob, mom to dd 19, ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
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MarilynW
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| Posted: Dec 17 2009 at 10:47am | IP Logged
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Dear Beth - I have been praying for you and I am so relieved to read your updates. I will continue the prayers for your precious Anna - as the mama of 3 children with food allergies how hard the whole nutrition thing can be.
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Marilyn
Blessed with 6 gifts from God
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Paula in MN
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Thanks for updating. Still praying...
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Paula
A Catholic Harvest
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stefoodie
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We'll keep praying, Beth.
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stef
mom to five
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4 lads mom
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| Posted: Dec 21 2009 at 8:09am | IP Logged
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Oh, Beth.....it is all a bit exhausting, isn’t it??? You are doing a great job, hang in there, and update us when you get the rest of the test results. I’ll keep praying!!!! Make sure you check out that FAAN website, it is terrific! So much good info, I love it.
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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Angi
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Hugs - food allergies and other food related isses (for us it is EGE) are down right unfair. LOL I will pray that your little one improves with the change in her diet, and that you find safe supplements. Have you tried Kirkman's Lab?
Also, a great place for advice and recipes is kidswithfoodallergies.org
HTH
Angi
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aussieannie
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Praying for your Anna Mary, Beth ~ that she continues to make a good and strong recovery!
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Under Her Starry Mantle
Spiritual Motherhood for Priests
Blessed with 3 boys & 3 girls!
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mathmama
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| Posted: Dec 23 2009 at 4:56pm | IP Logged
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Thank you again for all the prayers for Anna Mary. My little girl is going to have a happy Christmas. She is improving everyday. She has her personality back and her thyroid has already shrunk considerably. Her color is better and her face isn't puffy anymore (I actually hadn't noticed it until it was gone). All test results that have come back continue to point to just a dietary cause for her problems. So far she is handling all the additions to her diet and I am waiting for Vit D drops in olive oil in order to remove a variable (that is her Vit D capsules have something in them that she could potentially react to).
Please continue prayers for her complete recovery and that I don't have problems with her GI docs and allergist. They are wanting me to start her on Neocate. For various reasons I am not comfortable with this, especially the fact that it has coconut oil in it and she is allergic to coconut. The allergist assures me that she will not react to it, but I am skeptical and not happy about introducing her to something they think she *might* need when there were so many new things I introduced to her because she *does* need them. As a mother I worry that if I don't follow their advice they may react badly and label me a negligent mother. Thankfully our pediatrician agrees that it is not a good time to introduce this to her and he shares my concern about the coconut oil. Thank God for him
She has an ultrasound of her thyroid after the first of the year and a follow up with the endo in the middle of Jan. I pray he has good news for us 
Please know that I will be praying for all your intentions and for a blessed Christmas for all!
Beth
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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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Mackfam
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| Posted: Dec 23 2009 at 5:39pm | IP Logged
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I'm rejoicing with you, Beth! What a wonderful Christmas gift!
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Jen Mackintosh
Wife to Rob, mom to dd 19, ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
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amyable
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| Posted: Dec 23 2009 at 5:43pm | IP Logged
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Beth, more prayers coming your way
You probably know this already, but there are several other elemental formulas out there, and maybe they don't contain the coconut? If I come across any information regarding that, I'll pass it along. (I apologize if this repeats something already said, I haven't read through the whole thread)
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Amy
mom of 5, ages 6-16, and happy wife of
The Highly Sensitive Homeschooler
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4Real Forums : We Pray to the Lord
Topic: For my little girl--update
