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concerned_mom061

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About concerned_mom061

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    breeh061@yahoo.com

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  • Interests
    My kids are my world! I love to read and learn new things.
  • Location
    Southwest Georgia
  1. Happy birthday and may God bless you today!

  2. 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. As far as the diet goes, if anyone has any suggestions..I would be grateful. She can not swallow solid foods very well, and she does not digest them....so she really is limited. And, she is a texture baby......so she is really picky! However, I know she has to be tired of the same old things. Thank you all again! Bree
  3. 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 suffered from bloody stools, an extreme amount of weight gain, severe anemia, horrible arthiritis, and many other things. My little brother also has red hair...and he exhibits many of the symptoms of an intolerance. So...maybe you are onto something!
  4. 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, extreme gas, chronic infections, weight loss, mouth sores, rashes, refusal to eat...etc.... She was taken from all foods and fed through an I.V. for a month....and her stomach was allowed to heal. The symptoms came back when she was put back on foods.....but slowly one at at time...then they all hit hard. Her dr. said what your sister said..she had time to heal...now she is doing the damage all over again. Some people react immediately....others it takes a little more time. But, I have found that it comes faster and faster w/each outbreak. Think of it this way....you buy a new belt....and it is in perfect condition and strong and unable to just tear apart...but over time it starts to wear out and continues to do so until finally one day you go to tighten it up and it just breaks. It's kind of like that...when the stomach is healed.it takes a little longer to get through and wear out all the villi. But, once it has been introduced to the gluten it becomes weaker and weaker until it cannot tolerate anything. *sighs* I think I got that out right..lol. Just b/c he isn't showing sypmtoms as severe as he was before does not mean his body is not reacting. If he was on Dairy and was allergic to it....then that would have upset his stmach as well....and made the outbreaks come faster and more severe. I, personally, would go forward w/the doctor.....for to me....it's something I would want to know one way or another. Good luck, and I hope everything works out for you and your family. I hope I helped in some way. Bree
  5. 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. 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 a point where I am not busy every day of the week w/appointments and such. Also, her doctors are still sorting through all of her records.....for the hospital would not allow us to have them until after the case was over. But, when we do move forward, we will be ready. Thanks again!
  7. 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 you all did to help. I still give you guys credit for helping me win. My little girl is 16 1/2 months old now. She has finally up to 22 pounds and 29 inches. She has been officially diagnosed with Primary Immune Deficiency and Hypogammagloblenemia. She has been started on Vivaglobin treatments...where a nurse comes once a week and hooks her to a little pump and injects plasma that contains the antibodies she needs. The immunologist can not believe that the accusing doctor just left that bit of information out...for the tests on her were done by that doctor before they took her from me. The immunologist done furter testing to confirm the diagnosis. She was also found to be highly allergic to milk, wheat, eggs, peanuts, soy, and fish. Her pediatrician along w/her immune doctor have unofficially diagnosed her with Celiac disease...for she does not eat enough foods to be able to give the official diagnosis...and they usually wait until the infant is at least 2 years of age. However, they have put her on the Celiac diet along with cutting out all the other things she is allergic to. They also recently found a test that was also performed by the accusing doctor that showed that Kylie was lacking an enzyme that breaks down sugars and fats...which explains why that doctor changed her to a formula for babies who can't digest fat. All this information was gathered from tests that were performed before they took Kylie..and then confirmed by another doctor. Everything they found explains exactly why my little girl was so sick all the time, and explains why she can't digest foods or does not grow well. She is still on 24 calorie formula as her main source of nutrition along w/certain stage one and two baby foods as tolerated. She cannot have solid foods, or any kind of food that we eat. She also still has her feeding tube which we have had to use on several occasions due to her chronic infections in which she either will not eat or cannot eat enough...but she primarily eats without it now. She still has many battles with diarhea, constipation, colds, chest infections, maintaining weight, vomiting, extreme gas, persistent rashes, mouth infections, and her button getting infected. The rash on her bottom has never left....it has been over 8 months now. They put tubes in both of her ears 2 months ago due to persistent ear infections that required antibiotic shots to get rid of them. But, all in all, she is doing so much better than before..and we have a lot of hope as to what the future holds. Family and Children services will officially be out of my life in less than a month. They have had very little involvement and have done everything but say that they know they were wrong. Theyhave only checked in on her by calling or asking me to stop by maybe 4 or 5 times since September. So, I hope this can maybe help someone else that has a child that has went through what my little one has. It took us over a year.....but we finally know what is wrong w/her....and we are making progress. Thank you all again! _________________ God Bless You All! Bree
  8. 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. The only thing that kept her out of the hospital was me begging her doctor not to put her in and the fact that she has a feeding tube. So, we just put everything through her tube until she felt better. She has dropped more weight, but she's been sick, so we're pretty sure that's why. Also, she goes for her pre-op visit today, and they put tubes in next week, as Andrea has already stated. Her rash did improve w/the cream Andrea sent.......thanks so much, Andrea......and w/the complete removal of all gluten, wheat, eggs, milk, and soy. That pretty much cut everything out....but I did find some food from glutenfreemall.com that is from a company called, Enjoy Life Foods. She still will not eat much, though. I also took everyon'e advice, and I stopped giving her the little dried fruit and everything else that was suggested. Her diarrhea has imorived, but she still has several diapers a day. Some days are better than others. We are still waiting for the results from bloodwork they did last week to see if her immune system responded to the treatment that was started. Everyone please pray about that.....for if it hasn't she will have to continue getting an injection of antibodies for every week for many years to come. However, her reflux seems to have worsened. She gags and chokes a lot, and has even stopped breathing a couple of times. We are working on a mixture of new meds to fix that. All in all, I have seen a dramatic improvement in her....she sleeps better, her rash looks better than it ever has, she is happier, and her stools have improved. I thank all of you so much for everything!! It was everyone's advice and guidance that has gotten us to where we are, and I even told her pediatrician that. She told me that she agreed, for no one knows what it is like and how to deal w/it all except for a mother who has been there. She advised me to continue to stay involved w/all of you and heed to the advice that is given....while keeping her involved, of course. So thank you again, and please continue to pray. If I can do anything for any of you, please just ask!! God Bless you all!
  9. 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. 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 back w/the original doctor that we never should have left. I'm glad Megan didn't have it, and I pray Kylie doesn't either. We shall see. I appreciate your offer w/the powder, but I already had my local drug store order it. I'm going to pick it up later. As far as Neocate goes.....it's still being debated. If Kylie loses any more weight, we probably will.
  11. 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 ideas! You all have been so helpful!!! I feel so over-whelmed by all of this, and I stay so lost as to what to do for her. It really helps having other people that know what I'm going through to give support and advice in these trying times. I've learned more in this past couple of days since I've been talking to you all than I have since she 1st started having problems. Doctors may have the degree....and some are really awesome....but there is nothing like a mother's instinct when it comes to her child. God Bless You All! With lots of hugs to you all, Bree
  12. 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 took one of the stools she had in the office and sent it off for tests. I will hopefully hear something soon. Her stools are no longer black, but they still keep coming. She is acting better today, but her rash is really bothering her. I got the ointment in the mail today that Andrea sent me, and I'm hoping it will help. I hope all is well w/all of you guys and your children! With Much Appreciation and Admiration to you All, Bree
  13. 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 to be a real trooper, as does Megan. Then again, you all are amazing!
  14. 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 would possibly benfit from going on the diet, but it's not so easy w/them. I am very adamant about everyone washing their hands and faces before touching her. I'll have to look into the other products in the house. She started the D when she was 8 months old so we started trying baby foods to try and thicken up her stools....however, it just got worse after we started feeding her. I wouldn't mind giving it a try again, but I am almost positive we'd never get her to take it. It took us so long to get her to take it the 1st time, and then she'd never take more than 2-2 1/2 ounces at a time on her own. I am supposed to talk to her doctor tonight about it all, and I'll ask what she thinks. Her doctor is very close to us, and she knows how Kylie is about her foods.
  15. 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 buds, I don't think that's the case w/her. She hates her formula, but she likes pedialyte. She also has preferences with her medicines. Also, about 90 % of the time she won't even let the food ger to her mouth before she's made up her mind. I've tried to trick her in to tasting things, but she will fight me and spit it out, gag on it, or throw it up. There have been times that we had to literally force her to eat, but I don't like doing that so I don't anymore. I'm not sure about the whole spice thing. She has severe Reflux that she's had since birth. She had a nissan-fundoplication at the age of 6 weeks, but by 8 months she started vomiting again. It doesn't take much to make her sick, but it does take a lot of pressure to make her throw up. The rash is definitely not due to the diapers. We have gone to cloth diapers, and there is no improvement. Also, she will not stop going to the bathroom!! Her diarrhea is worse.....she's had 16 or 17 diapers every day since last monday. We are giving her Immodium twice a day at the request of her doctor. Also, she just started Levsin drops. It's not slowing down!! Maybe her past history will ring a bell w/someone. -She had a Grade 1 Bleed in her brain at birth -A heart murmur, Mild Pulmonary Stenosis, Moderate VSD -Severe GERD -Jaundice -Apnea -Anemia-5 blood transfusions -G-tube placement and fundo at 6 weeks -Spent the 1st 4 months in the hospital on tube feedings and TPN -Has had several blood infections -Blood in her stool -GI bleed -Chronic Gastritis -Chronic ear and sinus infections-soon to get tubes -Never responded to any of her vaccines and has Immune System Disorder....having to get weekly injections -Chronic Diarrhea and battles w/constipation -Pneumonia -Stayed in the hospital from 8 to 12 months due to constant dehydration, weight loss, uncontrollable diarrhea, was on TPN -The site around her G-tube site will not heal and always leaks and bleeds -Stays malnourished w/low protein, iron and calcium -Runs a fever a few days out of every month -Constant feeding intolerances -Food allergies:milk, wheat, eggs, soy, fish, and peanuts -Biopsy positive for villous atrophy and blunting, gastritis, deuodenitis, and a strange bacteria -Constant battles w/rashes on body and diaper area...diaper area will not go away -Failure to thrive...not maintaining weight and not growing in length -Has had seizures...but related them to electrolyte disturbance -Constant movement of the tounge -Excessive amount of gas...distended belly and found in all x-rays. -Slow motility until 8 months....now almost like she goes as soon as she eats..w/in the hour whatever she eats comes out -Doesn't seem to digest properly I tried to cover everything. Maybe someone else has had these same problems.
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