Discussions By Condition: I cannot get a diagnosis.

Help my 10 yr old little girl

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Brie's Mom
  • June 7, 2012
  • 06:13 AM

My daughter started her life out by drinking 10 to 18 oz of formula once a day. When she started solid foods she would only eat once or twice per week, we could not get her to eat. She would drink but not eat. She refused to eat meat, chicken and fish, to date she still does not eat meat checken or fish. She has complained of gut pain since she could talk. Dr have pushed poked prodded at her stomach and she has no reaction yet it hurts. There are times when she is doubled over in pain. Every time she complains that her tummy hurts her temp drops to 92. Her normal temp is 96.7. She is 30 pounds overweight yet she hardly eats and her thyroid is good. She is active when she is not hurting. She has been in and out of the hospital with urinary tract infections. Her skin color is off almost looks albino yet she was tested and isn't.
She has had colonoscopy and endoscopy and more urine/lab test then any 10 year old should ever go through. The Gi doctor said that she suffers from constipation yet she has never been constipated has pretty regular bowel movements at least when she eats! Her immune system the doctors say is compromised yet they do not know by what. If she gets sick it takes her twice as long to get over it.
I also have two other children and neither of them have ever had any of the same thing.
She is in pain more then she is not. She suffers also from being flat footed.
We are stuck one dr puts her on meds the next takes her off. She only wants to feel better, as do we. If you know of anybody who has same type of symptons please let me know.

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8 Replies:

  • I wanted to say Im so sorry your little girl is suffering this way and your whole family as well. I am not a Dr. by any means but going off of the reading I have done it sounds like gluten intolerance although I would hope she has already been tested for all allergies. I know you said her thyroid tests have been good but from what I have read the standard test TSH is not enough to be positive and she would need several thyroid tests to confirm. There are also a lot of studies and concerns about vitamin B deficiencies being overlooked and the symptoms minimized by some Drs so if you haven't already have all her vitamin levels tested. Even if vitamin levels aren't causing any symptoms they should be addressed due to poor nutrition. My Mother had severe anxiety from a very young age which caused her to refuse food, have stomach pain and vomit after eating. These symptoms started when she was 2-3 I am told but I wouldn't think your daughter was suffering from this as she seems to have had symptoms since birth. These are some ideas I had when reading your post and I thought I would share. I don't know where you are located and what kinds or Drs she has been to but I would recommend taking her to a children's hospital I am in Seattle and ours is called just Seattle Children's Hospital and they seem to work on finding answers and solutions regardless of insurance or costs.Good luck I hope everything works out
    kadensmom 6 Replies Flag this Response
  • My daughter started her life out by drinking 10 to 18 oz of formula once a day. When she started solid foods she would only eat once or twice per week, we could not get her to eat. She would drink but not eat. She refused to eat meat, chicken and fish, to date she still does not eat meat checken or fish. She has complained of gut pain since she could talk. Dr have pushed poked prodded at her stomach and she has no reaction yet it hurts. There are times when she is doubled over in pain. Every time she complains that her tummy hurts her temp drops to 92. Her normal temp is 96.7. She is 30 pounds overweight yet she hardly eats and her thyroid is good. She is active when she is not hurting. She has been in and out of the hospital with urinary tract infections. Her skin color is off almost looks albino yet she was tested and isn't.She has had colonoscopy and endoscopy and more urine/lab test then any 10 year old should ever go through. The Gi doctor said that she suffers from constipation yet she has never been constipated has pretty regular bowel movements at least when she eats! Her immune system the doctors say is compromised yet they do not know by what. If she gets sick it takes her twice as long to get over it. I also have two other children and neither of them have ever had any of the same thing.She is in pain more then she is not. She suffers also from being flat footed. We are stuck one dr puts her on meds the next takes her off. She only wants to feel better, as do we. If you know of anybody who has same type of symptons please let me know.I don't know the answer to your question, but there is an organization which might be able to assist you. It is called The Children's R.A.R.E. Disease Network. Look here: http://www.crdnetwork.org/resources/solve.phpThere are tons of resources on this site to help you. They will also guide you through creating an electronic file for you daughter which you can send to experts around the world.Go to this site http://www.inod.org/need_help0.aspx and fill out the form. They will help you to look for a diagnosis as well. Good Luck and God Bless!
    drmonkey 1 Replies Flag this Response
  • Have you done the most extensive thryoid testing? T4 etc? Also what about chromosomal analysis? My son has very similar issues although he is on the other end with weight (very small). And we discovered after a year long journey that he has two chromosomal syndromes that were causing all of these mysterious symptoms, including the immunology issues. What about dietary changes? Does it make any difference whatsoever? You could try a celiacs test as well since those kiddos/adults tend to have pain that is hard to figure out. Remember though that even if a celiac's disease test comes back negative, she could still have a sensitivity. Good luck!
    cwleonard82 1 Replies Flag this Response
  • :oHello, I have never heard of this before, and, am not a medical person, just a Grandmother. Just my thoughts, I would suggest taking her to a Gastroenterologist (stomach, guts, etc doctor) as soon as possible. If there is a teaching hospital in your area check there first as they are usually really up to date on newer tests, etc. I don't think your GP is the person to handle this situation. Good Luck
    alphawolf 7 Replies Flag this Response
  • I wanted to say Im so sorry your little girl is suffering this way and your whole family as well. I am not a Dr. by any means but going off of the reading I have done it sounds like gluten intolerance although I would hope she has already been tested for all allergies. I know you said her thyroid tests have been good but from what I have read the standard test TSH is not enough to be positive and she would need several thyroid tests to confirm. There are also a lot of studies and concerns about vitamin B deficiencies being overlooked and the symptoms minimized by some Drs so if you haven't already have all her vitamin levels tested. Even if vitamin levels aren't causing any symptoms they should be addressed due to poor nutrition. My Mother had severe anxiety from a very young age which caused her to refuse food, have stomach pain and vomit after eating. These symptoms started when she was 2-3 I am told but I wouldn't think your daughter was suffering from this as she seems to have had symptoms since birth. These are some ideas I had when reading your post and I thought I would share. I don't know where you are located and what kinds or Drs she has been to but I would recommend taking her to a children's hospital I am in Seattle and ours is called just Seattle Children's Hospital and they seem to work on finding answers and solutions regardless of insurance or costs.Good luck I hope everything works out Thank you will have her vitamin levels checked for sure. Thyroid test are all negative she has had them rechecked a lot!! She does not have gluten intolerance totally ruled out through test and diet change. We have been to one Childrens Hospital where they diagnosed her as being constipated. We knew that it was wrong but tried the laxatives and no difference. She has a case manager now because she is costing our insurance company too much money!! The manager is working on a consult at another Childrens Hospital so we wait and see. We just want her well enough to be happy and able to go to school. Her doctor took her out because she missed 54 days and put her into the home hospital program. So hopefully we will get this new consult and start again but this time with answers. Thank you for taking the time to read and offer advice. God Bless You......Trish
    Brie's Mom 2 Replies Flag this Response
  • I don't know the answer to your question, but there is an organization which might be able to assist you. It is called The Children's R.A.R.E. Disease Network. Look here: http://www.crdnetwork.org/resources/solve.phpThere are tons of resources on this site to help you. They will also guide you through creating an electronic file for you daughter which you can send to experts around the world.Go to this site http://www.inod.org/need_help0.aspx and fill out the form. They will help you to look for a diagnosis as well. Good Luck and God Bless!Sorry it took so long to get back to you, but you have opened up a new world for our family. Thankfully we have requested and at time have had to demand copies of all her medical records. We have had a binder for a couple of years. Never realized how much we had until we began scanning it!!! We are so thankful for your links. God Bless You......................Trish
    Brie's Mom 2 Replies Flag this Response
  • My daughter started her life out by drinking 10 to 18 oz of formula once a day. When she started solid foods she would only eat once or twice per week, we could not get her to eat. She would drink but not eat. She refused to eat meat, chicken and fish, to date she still does not eat meat checken or fish. She has complained of gut pain since she could talk. Dr have pushed poked prodded at her stomach and she has no reaction yet it hurts. There are times when she is doubled over in pain. Every time she complains that her tummy hurts her temp drops to 92. Her normal temp is 96.7. She is 30 pounds overweight yet she hardly eats and her thyroid is good. She is active when she is not hurting. She has been in and out of the hospital with urinary tract infections. Her skin color is off almost looks albino yet she was tested and isn't.She has had colonoscopy and endoscopy and more urine/lab test then any 10 year old should ever go through. The Gi doctor said that she suffers from constipation yet she has never been constipated has pretty regular bowel movements at least when she eats! Her immune system the doctors say is compromised yet they do not know by what. If she gets sick it takes her twice as long to get over it. I also have two other children and neither of them have ever had any of the same thing.She is in pain more then she is not. She suffers also from being flat footed. We are stuck one dr puts her on meds the next takes her off. She only wants to feel better, as do we. If you know of anybody who has same type of symptons please let me know.Hi,I'm sorry to hear about your little daughter having so many medical issues, that's ******n everyone concerned. I am bothered by the fact that the doctor has stated that her immune system is compromised but doesn't know why, that's not acceptable. Unless she has a condition that you haven't mentioned here. She is not a diabetic? Also, what medications are they giving her for flat-footed? The factthat she is 30 pounds overweight (According to your statement.) is exacerbating that problem. I would take her to another pediatrician, or get a second opinion. I hope she gets well very soon.Good luck!Lindsay
    LindsayG125 4 Replies Flag this Response
  • The only symptom that you can prove is UTI's. What did the UTI culture? Most likely your answer is going to be nothing.My guess for the weight gain is fluid build up (gout) and that is painful.From everything you describe, she has nephrotic syndrome.http://kidney.niddk.nih.gov/kudiseases/pubs/nephrotic/#whatThey will tell you there is no known cause or cure however you will have found that high doses of anti-biotics for long periods will make the symptoms go away for a time with the UTI's.My suggestion is to look into oral vancomycin along with IV vancomycin. It is caused by an occult staph infection located in an encapsulated area such as the bladder.Oral vancomycin works inside the gut and IV outside the gut. The infection plays both sides of the line and so unless you do both, it is going to keep coming back. Eventually her heart may become infected and she will die. Keep an eye out for fast irregular heart beat or feeling of out of breath in the child until you get that cured.The problem with the medical system is insurance companies decide who gets what and the doctor goes along since they like to get paid. It is corruption beyond your wildest dreams and something I may write a book about. We have known how to cure most disease since 1930. Google Royal Rife - The cure for all disease.The government controlled by the same crooks goes along. They call it eugenics and Rockafeller's zionist eugenicas program is alive and well. He is "The overpopulation czar here in the US".
    Einstein 7 Replies Flag this Response
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