Discussions By Condition: I cannot get a diagnosis.

I need to know what is wrong with my daughter

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: softballmom73
  • January 20, 2008
  • 01:16 AM

Help!!! My 8 year old daughter has so many symptoms but no one seems to be able to figure out what is wrong. She is overweight but I can't seem to figure out why. Her diet is healthy. She is very active. She plays softball and takes 4 dance classes along with P.E. at school. Her weight gain happens in spurts and is usually 8-10 pounds at a time. She is also tall for her age. (She is 5 ft tall.) She also wears a womens size 9 1/2 shoe and her hands are the same size as mine. I took her to the pediatrician and voiced my concerns. Other symptoms are a hump on the back of her neck, very dry skin and scalp, red face, headaches, hair texture changed from normal to very dry, some pubic hair, and she snores. I was referred to a pediatric endocrinologist after her bone age came back advanced. She was 7 years and 10 months at the time and her bone age showed 11 years. Her cholesterol was extremely high at one check, then normal at the next check. Her insulin was normal the first check, then tripled the second time. Her c-peptide was also high, but her glucose was normal. After all this time, she will be 9 years old this month and all doctors want to see is an overweight child who needs to be on a diet. I took her to a nutritionist and kept a food journal for 2 weeks. Even she was stumped after seeing her diet was healthy and she still managed to gain 4 pounds. Her dentist did an x-ray that orthodontists usually perform and told me that there is something not quite right within the pituitary region. We have done numerous hormone checks and they always come back normal. I know that something is not right and that this is way more than just a nutrition problem or a lazy child. She is far from it. She has an older sister and a younger brother both who are of average height and in the 20th percentile for their weights. What am I missing? What else can I do to help her? What should I do next? I am not willing to simply give up and watch her get worse but I don't know what else the doctors are maybe missing. HELP!!!!!!!!!!!!!!!!:confused:

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20 Replies:

  • Cushing's disease? Have you seen an endocrinologist? Try here: http://www.wrongdiagnosis.com/symptoms/buffalo_hump/book-causes-8a.htm
    aquila 1263 Replies
    • January 21, 2008
    • 07:08 PM
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  • I see that you went to a pediatric endocrinologist? What did they say?I agree with Aguila and Cushing's should be checked for. Does your daughter drink milk regularly? Is it organic? If it is not organic, then she is ingesting hormones, and antibiotics...the highest ratio of these is found in fat free milk, believe it or not. Also, commercial red meats contain a lot of hormones. She may actually have a food intolerance and this could be affecting her endocrine system. A good holistic doc may be able to determine this better than an allopathic doc. It is hard to test for. Major food intolerance in kids include soy,dairy, corn, wheat, oats...is there somethings she consumes on a daily basis? Even though her diet is healthy, if she cannot tolerate a certain food it can cause all sorts of problems for her. How is her digestion? Does she have constipation or loose stools? Has she just recently gained the weight or has she always been like this? Hormones can be hard to test for...has she just had blood tests or has she had a saliva test done? I understand the latter are most accurate. Please consider trying NAET (Nambudripad Allergy Elimination Techniques) if you can fidn a practitioner in your area. NAET is noninvasive, safe, and very effective for a variety of disorders. Best wishesDOM
    acuann 3080 Replies
    • January 21, 2008
    • 07:27 PM
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  • Thanks for all the input. Yes, she has seen an endocrinologist, but unfortunaltely, she took one look at her, saw an overweight child, referred us to a nutritionist and told us to stay away from sodas and cookies basically. Like I said before, her diet is not the problem. I would take her to another endocrinologist but I am afraid of the same result. I did read something about Lyme disease and could not remember where I saw it to refer back to it. Thank you for all the links. I will definetely check them out. Also, out of my three children, she was the milk drinker. The other two never took to cow's milk after they were weaned but she did. She LOVED it. I often wonder if that started the problem. Up until then, she was perfectly normal in size. Her weight gain made drastic strides beginning between two and three years of age. It really never stopped. However, she did stop drinking milk. She drinks lots of water and Crystal Light now. There are two other symptoms that she has that never seem to occur to me that they might be related until just now. Her tonsils are huge but she never has tonsillitis. She makes a tremendous amount of ear wax. Maybe the tonsils could be associated with Lyme? I don't know.
    softballmom73 7 Replies
    • January 22, 2008
    • 02:17 AM
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  • Thanks for all the input. Yes, she has seen an endocrinologist, but unfortunaltely, she took one look at her, saw an overweight child, referred us to a nutritionist and told us to stay away from sodas and cookies basically. Like I said before, her diet is not the problem. I would take her to another endocrinologist but I am afraid of the same result. I did read something about Lyme disease and could not remember where I saw it to refer back to it. Thank you for all the links. I will definetely check them out. Also, out of my three children, she was the milk drinker. The other two never took to cow's milk after they were weaned but she did. She LOVED it. I often wonder if that started the problem. Up until then, she was perfectly normal in size. Her weight gain made drastic strides beginning between two and three years of age. It really never stopped. However, she did stop drinking milk. She drinks lots of water and Crystal Light now. There are two other symptoms that she has that never seem to occur to me that they might be related until just now. Her tonsils are huge but she never has tonsillitis. She makes a tremendous amount of ear wax. Maybe the tonsils could be associated with Lyme? I don't know. Get her off the milk and Crystal Light asap. Crystal Light has absolutely NO nutritional benefit, and she may have an allergy to the artificial sweetener found in it. Please get her off these two things and see if it helps. Milk is very mucuc producing - does she get frequent colds and ear infections as a child? Often dairy is the culprit. If the milk is from cows that have been fed growth hormones, then it is VERY possible that she is ingesting the hormones and getting early puberty signs - this is becoming much more common and the FDA is doing nothing about it. Try organic rice milk for a month or two and see if there are any changes.It certainly can't hurt, and may really make a difference. Best wishesDOM
    acuann 3080 Replies
    • January 23, 2008
    • 03:14 AM
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  • Yes, go to another endocrinologist. Have they mentioned precocious puberty? Or, the Possibility ofAAcromegalyADAddison's Disease (Adrenal insufficiency)ANAcanthosis nigricansCFSChronic Fatigue SyndromeCCushing’s Disease or SyndromeCSRCentral Serous RetinopathyCRCraniopharyngiomaECExcess Cortisone, naturally occurring or from medsFFibromyalgiaGHGrowth HormoneGH-Growth Hormone DeficiencyGH+Growth Hormone ExcessIBSIrritable Bowel Syndrome (Celiac Disease/Gluten Intolerance)LLupusMSMultiple SclerosisPPCOS (Stein Leventhal Syndrome)PMPerimenopausePRProlactinomaRARheumatoid ArthritisT Thyroid DisordersThis is from Cushing's Children (www.cushings-help.org)var sc_project=1248554;var sc_invisible=1;var sc_partition=11;var sc_security="330b7e1a"; http://c12.statcounter.com/counter.php?sc_project=1248554&java=0&security=330b7e1a&visible=1/*Disable right click script II (on images)- By Dynamicdrive.comFor full source, Terms of service, and 100s DTHML scriptsVisit http://www.dynamicdrive.com*/var clickmessage="MaryO says: It's not nice to steal images!"function disableclick(e) {if (document.all) {if (event.button==2||event.button==3) {if (event.srcElement.tagName=="IMG"){alert(clickmessage);return false;}}}else if (document.layers) {if (e.which == 3) {alert(clickmessage);return false;}}else if (document.getElementById){if (e.which==3&&e.target.tagName=="IMG"){alert(clickmessage)return false}}}function associateimages(){for(i=0;i
    rad-skw 1605 Replies
    • January 23, 2008
    • 10:52 AM
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  • Softballmom,I forgot to ask if your daughter has been on any medications this past year? Anything at all, including prescription topical ointments and such. DOM
    acuann 3080 Replies
    • January 23, 2008
    • 11:30 PM
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  • One can get very technical with what is wrong, what to do etc.I lost my son to cancer, when they told us he would not live Brad and began our quest for a cure.1. Diet is the most important thing you can do for your body. I am speaking of a diet that will detox. Recently I was diagnosed with 5 points in one lung. From what Brad and I learned I knew that I had to detox my body and do it fast, this is what I do:1. In the am I take a probiotic(Megaflora), these are the friendly bacteria that live in our gut. Some people are born deficient and as we get older we lose the friendly bacteria.2. 30 minutes I juice 8 ozs. of carrot juice with the Jack Lalanne Elite Juicer. I put 2 tablespoons of barley green in it from Pure Planet. Start off with less, you do not want to detox to fast. I take a enzyme tablet with this so that my gut will absorb all the good stuff.3. An hour later I drink 2 ounces of Mangosteen with an enzyme tablet. This helps with inflammation and jumpstarts the immune system.4. I drink only Figi Water. It has a high Ph. Don't drink municipal water.5. If your child wants solild food, brown rice, dark green salad greens with lots of other veggies and fruits and nuts.6. NO SODA, NO CAFFEINE, NO SUGAR, NO WHITE BREAD, NO ARTIFICIAL SWEETENERS.Using this diet I have dropped 34 points in cholesterol, my triglyerides(sP?) which were in the danger level are now normal. I have more engery than ever.DETOX, DETOX, DETOX AND THEN GO FROM THERE.I go back for another scan soon and if the spots are cancer I have a MD that has taken it upon himself to educate himself in alternative therapies. I will do Dr. Keith Brewers High Cesium Therapy. Knowledge is power. Brad and I learned the hard way that doctors are not as knowledgeable as we might think. Study for yourself. That is what Brad and I did. Our knowledge was too late for Brad but I pass that knowledge along to those that need it.Keeping The Promise,Linda KimballBrad's Ma and champion
    bradacura 13 Replies
    • January 24, 2008
    • 04:51 AM
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  • did anyone suggest a neurologist to check for tumors??? I'm not sure if it is indicated, but I certainly would ask the question..
    Monsterlove 2921 Replies
    • January 24, 2008
    • 09:03 AM
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  • I think it is a very good possibility that she has a thyroid disorder. I wish you luck.
    Anonymous 42789 Replies
    • January 25, 2008
    • 01:26 AM
    • 0
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  • Thanks for all the input. The only meds she has been on in the last year were mostly antibiotics for things like ear infections or strep. Nothing major and no topical ointments. Yes, she has been baptized. No neurologists have been mentioned yet but, I am hoping that a recent visit to the dentist will trigger that. Her dentist did an x-ray of her skull region for orthodontia issues and told me that there is an area of possible concern in or around the pituitary region. Like I said before, only blood work has been done and none of it indicated any type of problem with cortisol or prolactin. However, all the online research I have done says to do the 24 hour urine collection or saliva. Hopefully, someone will look more into it. The endocrinologist and pediatrician both say it can't be thyroid because of her height. Children with thyroid disorders are short in stature not tall they say. She is very tall. (Nearly 5 ft and just turned 9 yesterday.) She no longer drinks much milk, only in cereal. But, I will try alternatives. The nutritionists all suggested Crystal Light. I will try something else. She has been put under the balloon diagnosis of "Metabolic Disorder" which I think is just an escape for the docs because they can't figure out what is wrong with her. I think this diagnosis is more fitting for an adult but not a child. Nothing aggravates me more than when the doctors and nutritionists tell me to get her off of junk food. My other two children, my husband and myself are all within our weight ranges and actually, my other two are thin very fit. I suppose the docs think the rest of us eat healthy and we just feed her all the crap and let her have as much of it as she wants. I am very concerned for both her physical health and emotional health. Being an overweight kid makes her a target for being made fun of as well as numerous health issues. Yet, nothing I have tried has worked. I will check into everything suggested. Thank you all so much!!!
    softballmom73 7 Replies
    • January 28, 2008
    • 04:02 PM
    • 0
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  • Please consider NAET or BioSET therapy as a way to treat your daughter. It seems she is suffering from "allergy" symptoms. Please hear me out... I am a nurse and was sick for a long time. I have Myalgic Encephalomyelitis (in the US we call it chronic fatigue syndrome), Fibromyalgia and Morgellon's disease. Most illness are "auto-immune". NAET/BioSET relieves allergies. The problem is, your daughter's immune system is confused and it is building antibodies to many things. Please believe me on this one.... try NAET or BioSET.. after all, at this point...what have you got to lose? www.naet.com www.bioset.net stay well... mommy cat
    mommy cat 1654 Replies
    • January 28, 2008
    • 04:21 PM
    • 0
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  • I had the same problem as your daughter. No one was able to put a finger on what was wrong with me. I felt like you were describing MY SYMPTOMS. I have recently been diagnosed with this and currently getting treating for it. Please take your daughter to a GOOD Endocrinologist and have them check for Polycystic ovary syndrome (PCOS). It can start very early on stage sometimes (like in my case) and it's VERY important to be treated for it otherwise it can put a person at a risk for HEART DISEASE, DIABETES, CANCER, etc.GOOD LUCK.
    Anonymous 42789 Replies
    • January 28, 2008
    • 06:41 PM
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  • Your daughter needs a MRI to check for a tumor of the pituitary gland.http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Cushing's_syndromeThey are usually benign and non-cancerous which causes the condition Cushings disease. The hump on the back of her neck could be what they call a "Buffalo hump" and should be pionted out to your doctor/specialist.Early or Precocious puberty can also point to cushings.
    TerryG 120 Replies
    • January 29, 2008
    • 03:50 AM
    • 0
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  • I saw that another mentioned CFS.. please cross that off of your list of things to have her checked for.. with her doing so much sports etc, she certainly HASNT got CFS. (I myself have CFS) Also lymes is very unlikely I think (some at this site tell everyone it's probably lymes). Your daughters issue to me dont sound like lymes. One of my first thoughts when i was reading your post, was some kind of pituitary problem as I was thinking that maybe she had something like acromegaly.. (I was thinking that even before I read the bit about the dentist noticing something odd with the pituitary). Acromegaly which is a form of giantism, which I was wondering about due to some of her symptoms).. can be caused by problems with the pituitary. The dentist didnt notice what appeared to be some kind of growth on the pituitary did he???? or it enlarged?? Has your doctors scanned it to see whatever the dentist thought was abnormal?? Acromegaly causes snoring, headaches, quicker growth than norm and other symptoms
    taniaaust1 2267 Replies
    • January 29, 2008
    • 03:55 AM
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  • A friend of mine just recently mentioned PCOS. I was wondering if a girl as young as she is can have PCOS. My cousin was just diagnosed with PCOS and her GYN told her she probably has had it most of her life and she is 26. Did you get diagnosed with it by ruling other things out or did you have an ultrasound? Or is there another test? Please let me know. I will ask my pedi to please give it a try. Also, Mommycat mentioned an allergy. That is very interesting. I was just trying to think outside of the box and thought maybe the enlarged tonsils was an indicator of an allergy and then you posted those sites. It would make sense. When I asked her Pedi last week if she thought it could be an allergy, she said it would not present this way. She said she would be losing weight not gaining. (Gastric disturbances cause diarrhea and vomiting she said). I think there could be more to it. I will definetely check it out. I want her to have an MRI or CAT scan so I will just push for that and go from there. If there is no tumor, then PCOS or allergy will be next. It has also been suggested to take her to The Women's Clinic in Houston to have her checked for an auto-immune response. Thanks for all your suggestions. I REALLY appreciate all the input.
    softballmom73 7 Replies
    • January 29, 2008
    • 04:12 AM
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  • Re: I need to know what is wrong with my daughter. I am not a dr but I think taniaaust1 hits it right on the head with acromegaly Her symptoms are pretty right on. I would just go to different dr. and tell them she needs to be check. You take control. Not the Dr. Besides you're paying him not him paying you. Good Luck:rolleyes:------------------klschup
    klschup 42 Replies
    • January 29, 2008
    • 07:37 AM
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  • Read Cushing's disease, Pituitary Gigantism.http://www.endotext.org/neuroendo/neuroendo11a/neuroendo11a.htm
    TerryG 120 Replies
    • January 29, 2008
    • 11:45 AM
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  • hi: there was one thing I didn't mention was that my aunt had something wrong with her pituatary gland but I am not quite sure.She became very large. Vary large. She couldn't walk anymore. She was very skinny until her and her husband, I believe got into some car accident and something happened to the gland. I don't know if you know David Obey, but he is a congressman for northern WI. It was his mother.I doubt that this helps but maybe it is the pituatary gland.:rolleyes:---klschup
    klschup 42 Replies
    • January 29, 2008
    • 10:09 PM
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  • UPDATE: Finally, we are making progress. After BEGGING her pediatrician to run more tests, he called the other day to tell me he was sending her to an Endocrinologist. Her blood work showed an elevated Thyroid Peroxidase Anitbody level....normal is 35 & under....hers was 164. Doctor suspects Hashimoto's Disease. We'll see what the Endocrinologist says. I will keep you posted. Thanks for all the help!!
    softballmom73 7 Replies
    • October 17, 2008
    • 08:48 PM
    • 0
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  • Please consider NAET or BioSET therapy as a way to treat your daughter. It seems she is suffering from "allergy" symptoms. Please hear me out... I am a nurse and was sick for a long time. I have Myalgic Encephalomyelitis (in the US we call it chronic fatigue syndrome), Fibromyalgia and Morgellon's disease. Most illness are "auto-immune". NAET/BioSET relieves allergies. The problem is, your daughter's immune system is confused and it is building antibodies to many things. Please believe me on this one.... try NAET or BioSET.. after all, at this point...what have you got to lose? www.naet.com www.bioset.net stay well... mommy catNaet is great to get rid of the symptoms of a food allergan or irritant but, there are no known studies that show once you get rid of the symptoms the body can still produce an antibody the attacks the small intestines. If that is the case you are just put a bandaid over a huge open sore. If anyone knows of any studies that can show that NAET also stops the production of the antibody please let be know.
    Anonymous 42789 Replies
    • January 18, 2010
    • 06:12 PM
    • 0
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