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concerned-mom061

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by concerned-mom061

  1. concerned-mom061

    Happy birthday and may God bless you today!

  2. concerned-mom061
    Well, thanks to you all. We are all so happy to have her back. It took her a while to get back to her old self....but once she did she came back with flying colors. And, yes, I have been told about the bone marrow transplant, but they have really cut back on that for many patients have contracted a form of leukemia. But, thanks for letting me know. ...
  3. concerned-mom061
    I am of Irish decent. My mother had ared tent to her hair....and several of her sisters have red hair. My daughter is the first known case in the family.....and she has a red tint to her hair......but after her diagnosis..many of my mom's sisters are being tested, for they all have the symptoms. My mother died at 41 of natural causes.....but in the end she...
  4. concerned-mom061
    Hello...I'm sorry to hear about your problem. Celiac disease can be very stressful. And, not everyone has the same symptoms or reacts the same way. My little girl started having symptoms at birth...then she got little better b/t 4-6 months...then got really bad at 8 months. She battled with all kinds of problems ranging from severe diarhea, constipation,...
  5. concerned-mom061
    I haven't heard from Cindy....I sure hope all is well w/her. It is a big relief. We have really enjoyed jsut being at home w/her. It's still really hard to know what she can and cannot have. We have been limited to so little. It's hard to know what is safe and what is not. But, we are making real improvement with it all.
  6. concerned-mom061
    I agree...and that is what everyone has been telling me. I do want to place a suit against her mainly so that she can never do what she did to us to anyone else. I often fear what might happen to the next child she takes away. However, right now I do not have the time that is needed to go forward with the lawsuit. I have to get everything w/Kylie to...
  7. concerned-mom061
    Hello...I haven't had a alot of time to get on here as of late..so I wanted to check in and give an update. Just to make sure everyone remembers....I am the mother from Georgia who was accused of MSBP by a doctor. My little girl was taken from me for 30 days, but I won in the end. First, I wanted to thank you all again for all the wonderful and kind things...
  8. concerned-mom061
    Thanks a bunch Andrea!! You guys are great! As I told Andrea...sorry I haven't posted in a while. I've been really busy w/Kylie and my little brothers, they are 12, and I am raising them. Kylie somehow caught the hand, foot, and mouth disease, and I have never seen her so miserable. She's been running a high fever, and wouldn't take anything by mouth...
  9. concerned-mom061
    Well, is a scope really the only way to tell? Is there not some other non-invasive way? I'll do anything in this world to help her, but I hate to put her through all that if there is something else we can do. I understand that you are not telling me to do it, and that you're not a big fan of it....I'm just asking if there is another way.
  10. concerned-mom061
    I don't think I want her to go through another scope. She's had one done several times, but always for a different reason. She has a really good GI doctor in Macon. He was her doctor from the beginning, and then we got sent to Augusta when she was 4 months old. That's where the crazy doctor that tried to accuse me of causing her problems is from. Now we are...
  11. concerned-mom061
    Wow...I just researched it, and that's scary. Either one could be it in a nutshell. I have never heard of either disorder. I am definitely going to bring it up to her doctor. They did a biopsy on every part of her GI tract except for her esophagus. Thanks for bringing this to my attention. And to everyone else who wrote....thank you for your support and...
  12. concerned-mom061
    Hello. Sorry it took me so long to respond. Kylie has been keeping me busy. The night before last she kept me up all night crying....which is really not like her. Then, at about 4 am she had a stool that was black and green. She had 4 more after that the same color. We went to the doctor yesterday morning, and she lost 4 ounces since we went on Monday. They...
  13. concerned-mom061
    No, my little bros are past that stage. She isn't exposed to much. Also, I know it's nothing from around here b/c when they had her in foster care for those 30 days, it got worse. The rash spread to her whole body..it was even in her ears. Though, I did get to see her twicw a week. She came home from the hospital w/the rash that bad. Yeah, Tanya seems...
  14. concerned-mom061
    You made some really good points and suggestions. I really appreciate it...and again, I'm truly sorry about what you and your children are going through. Yeah, I have learned the hard way about foods. She doesn't get anything now except for formula. As for the rest of us...we haven't went gluten-free yet. I raise my 12 year old twin brothers who both...
  15. concerned-mom061
    Yeah, I understand what you are saying. I have often thought that the gagging thing had to be some kind of disorder b/c m along w/lots of other members of my family, have a very sensitive gag reflex. I can barely swallow a pill w/out throwing up, and if I eat or drink anything that has a bad taste, I get really sick. As far as her not having strong taste...
  16. concerned-mom061
    Yes..I can see what you are saying. I guess I just have a fear b/c of what we've already been through w/her...but I don't want to do anything to hurt her. I've been following her pediatrician's advice. I am new to this whole thing as this is my 1st child. I am raising my 12 year old twin brothers, but they are perfectly healthy besides asthma....and one of...
  17. concerned-mom061
    I'm truly sorry to hear about your daughter. I'm glad things are getting better for you. My baby girl had a NG tube at first at 18 days old, and then they placed a G-tube in at 6 weeks, then another GJ tube, and now back to just a G-tube. We've had nothing but problems w/it. She was on Neocate from 2 weeks to 8 months. It helped..but all the problems...
  18. concerned-mom061
    No...she was on neocate when the rash and diarrhea started. Then she was switched to a soy formula which made everything 10 times worse. Then they took her off of everything and fed her through her veins using TPN. The diarrhea got better, but the rash got worse. Her pediatrician is very involved in her care, and even she is not sure of what to do. Also...
  19. concerned-mom061
    Robin..thanks for taking the time to write. Sounds like you had your fill of stress and worrying..huh?! I appreciate all the advice. Desitin helps keep her bottom from gettig raw, at least a little bit....but nothing has made her rash go away. She has had it since she was 8 months old...and it never goes away, it just gets worse at times. As far as...
  20. concerned-mom061
    Well, I really appreciate you taking the time to tell me, but unfortunately she cannot have oats. She has not responded well to oats...so her doctor took them out of her diet. I was really excited, too....I thought I found something..lol. Thanks again, I'm sure there is something out there.
  21. concerned-mom061
    Actually...my daughter has 3 wonderful doctors...so I am very lucky. They all have tried everything they know. It is really hard to see her suffer and know that I can't help. We have cut gluten out of everything....and we are trying really hard to keep milk out as well. It's just so hard to find foods that are gluten, milk, and soy free. Best of luck...
  22. concerned-mom061
    Yes...we often let her run around w/her diaper off as well. She has pooped on just about everything.....but we have no choice. And, her bottom is so raw that even rinsing her w/water makes her scream. As far as the candida/yeast thing....she's been on Nystatin Cream, Nystatin mixed w/a steroid, and Nystatin Powder....it's not yeast. They did a biopsy...
  23. concerned-mom061
    The hospital did that for her when they took her from me as well as the foster parents. She was in care for exactly 30 days....and they tried everything to prove me wrong....but even they couldn't do it. Also....is not growing in length as well as weight a side effect of Celiac? She has not grown a single inch since she was like 8 or 9 months. She lost...
  24. concerned-mom061
    Thanks for the advice....but we've tried Allimentum, and she won't take Neutramigen. That is some really nasty stuff!! She would literally starve first, so we had to use her feeding tube 24/7, and we are really trying to avoid that again!! As far as her eating more foods once her stomach feels better....I sure hope so!! She is a texture baby, though, and...
  25. concerned-mom061
    Celiacgirls: Wow....I looked up Pregestimil and you are right! That could very well be the problem. She is probably gaining weight due to the MCT oil....but the soy and casein are probably the culprits for the runny stools and rash. However, I know the foods are adding to the problem. Now, what do we do? There aren't very many more formulas out there that...
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