Discussions By Condition: I cannot get a diagnosis.

I need help with a diagnosis for my 20 month old

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: A.Bray08
  • January 31, 2008
  • 04:46 PM

My son is 20 months old, he is 18 lbs and 28 and 1/2 inches tall. He has been listed as failure to thrive since shortly after birth. When he was born we could not find a formula he could hold down, even when thickened. He was given the diagnosis reflux. Given medicine and put on different formulas. Medicine did not help. We exhausted all of the formula choices. We finally ended up taken him off all together, and put him on 7 up, which was the only thing he could hold down. Shortly after he turned 9 months, we started him on solids, he threw all of the baby foods up too, and since birth along with the vomiting, he has had episodes of diarreah, by the time he was one he had been hospitalized 4 times with servere dehydration. We have just recently been through a 7 week bout of diarreah, during which we have had him in the er 2 weeks ago with severe hives. He saw a Gastoenterologist, but they said there was nothing they could do, they think everything is allergy related. So I made an appointment with the allergist, and he tested negative to the skin test, so they said there was nothing they could do, but me and my husband have noticed he has reactions to milk, eggs, anything with citric acids, and hotdogs, but I am starting to wonder if he might be allergic to preservatives in the food, because he is reacting to some foods, that have none of these things in them. By the way he is still on 7 up for his fluids. We have tried everything from watered down fruit juice to sunny delight, to caprisun, to everything else, and he either throws it up, or ends up with severe diarreah. Does anyone have any advice for me?:confused:

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17 Replies:

  • try him on a gluten free diet and take him to the gastranologist and get him tested for yeast my dr had the same prob with his baby girl but i forget what the problem was so i will find that out for you
    rachel125 112 Replies
    • January 31, 2008
    • 08:53 PM
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  • Hi Just for the record I am in medical school + a mother of two boys myself and I am positive that this is not Lyme or Electrical Sensitivity & Hypersensitivity; Blaze has done over 150 posts that contain the same information and she will be absolutly no help to you. She has something against all Dr.s now cause her case was so hard to solve. but anyways..What different conditions has your baby been tested for...has he had Ultrasound, CT scan, anything along those lines?If not then I suggest that you get him tested for (in very rare cases of failure to thrive) cystic fibrosis heart disease, celiac disease, or an endocrine disorder Just to be safe cause this has been going on all his life and alot of Dr.s overlook things. and the reason that I know for sure that this is not a case Lyme is because this has been a problem since he was born and i know that ticks can not be in your uterus compping on your baby. *~How much did your baby weigh at birth?*~were there any problems at all while you were pregnant.I am very sorry that you are going through this and I know this must be very hard for you I am also having difficulty finding out what is wrong with my youngest son Rachel
    rachel125 112 Replies
    • January 31, 2008
    • 11:56 PM
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  • sorry Blaze you have done actually done over 300 post with the same information
    rachel125 112 Replies
    • January 31, 2008
    • 11:59 PM
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  • Pyloric Stenosis? Surely they have already checked him for this, but I had the make sure that it was thrown out there. It is a simple ultrasound to diagnose. I hope you find the answer soon.
    buggysmom 7 Replies
    • February 1, 2008
    • 01:10 AM
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  • In answer to some of your questions, My son has had an Upper GI when he was born, where he was diagnosed with reflux. He has had 4 stool samples, all negative, and He has been tested for Cystic Fibrosis, (thank god that was negative too. He has had his thyroids tested (they are fine.). He has tested negative for Celiac Disease, and the newest test was negative to skin testing as of Yesterday. I had a hunch it might be something called Mastocytosis, but I can not find a doctor who will test him for it, because they say it is rare, but I saw Mystery Diagnosis today recorded from Monday, and it was like watching Gabes medical history on TV, but I called the doctors and they do not want to test him for it. Do any of you know of this condition?
    A.Bray08 3 Replies
    • February 1, 2008
    • 02:32 AM
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  • Wow that is ridiculous!!!!!!are you in the states?have you been out of your area for Dr.s cause even tho I am becoming a Dr I know that there are many Dr.s that are very ignorant and they think that they know all when they don't, But I do know forsure this is not Lyme.You forsure need to get in connection with some good Dr.s cause this shouldn't be happening.Also have you and your partner been tested by the genetics Dr. you should also try that out. How is your son mentally developing is he doing everything that he should be is he walking is he saying anything.
    rachel125 112 Replies
    • February 1, 2008
    • 02:39 AM
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  • Sorry to dis agree but that wouldn't explain it at all...H-pylori causes bloating and heart burn after eating...this baby cant hold food down. it is a very common probably the most common infection in the world, but it is always safe to test for it.H. pylori is detected by a variety of means. At endoscopy (viewing the stomach and duodenum via a lighted tube), a biopsy of gastric (stomach) mucosa can be taken and assessed for H. pylori. Antibodies to H. pylori can be detected by blood tests. Non-invasive breath tests also can detect active infection with H. pylori. also does the baby get any rashes if so what do they look like.any other symptoms at all...chronic ear infection cough/cold???
    rachel125 112 Replies
    • February 1, 2008
    • 03:07 AM
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  • I have a VERY low opinion of Western allergy testing. I don't think it is at all accurate, and doesn't show if you have food intolerances. Have you considered trying a more holistic approach? Consider a treatment called NAET - Nambudripad Allergy Elimination Techniques. This is a safe, noninvasive technique that helps detect and reverse allergies. Visit www.naet.com. Even a good chiropractor who has experience in pediatrics may be helpful. One last thing: have you tried just plain distilled water? Have you tried pure goats' milk? At the very least you should be giving him a good quality children's chewable PROBIOTIC to help his intestinal flora. I like FloraBear's chewables and give them to my kids. He needs to take this every day, and a good multivitamin would be helpful, since he is not getting the nutrition he needs. Has he been tested for clostridium difficile infection? This is a SPECIFIC stool test, and is not routinely done. Please check to see that they tested for this, and if not, they certainly should. Sacchromyces boullardi is the best treatment for c. diff. Also, to check for candida overgrowth they would need to do a stool test to check for a range of candida in his gut...again, they may have overlooked this. Just because a stool test is negative doesn't mean much - you need to know specifically what they tested for. Please try the PROBIOTIC, and look into the other modalities I have mentioned. Best wishesDOM
    acuann 3080 Replies
    • February 1, 2008
    • 03:38 AM
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  • Has your son had a video swallogram? Are they sure the throat muscles are working properly?
    rad-skw 1605 Replies
    • February 1, 2008
    • 11:41 AM
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  • These are the tests done for mastocytosis: From this URL: http://www.emedicine.com/derm/topic258.htm CBC count: In systemic mastocytosis, CBC counts may reveal anemia, thrombocytopenia, thrombocytosis, leukocytosis, and eosinophilia. Plasma or urinary histamine level: Patients with extensive cutaneous lesions may have 24-hour urine histamine excretion at 2-3 times the normal level. Total tryptase level I don't think these are expensive or difficult tests. There is a pediatric GERD organization called PAGER here: www.reflux.org/ Wishing you the best.
    aquila 1263 Replies
    • February 1, 2008
    • 02:49 PM
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  • To answer some of your other questions, The stool test checked for Clostridium difficile, acid levels, and any kind of parasites or virus. We have not been to a Geneticist yet, I have asked to be referred to one but the doctors say that is jumping the gun, and they do not think we need one. Gabriel has had a history of severe ear infections which he has ear tubes for now, he also has a history of severe sinus infections, and he has had RSV twice before a year old, he has got to have Rocephin shots when he gets sick, because everytime he takes an oral antibiotic, it messes up his system so bad, he ends up in the hospital for severe dehydration. He walks and run like any child his age. He is not where he should be in talking, but he seems to be getting better, he has been behind on his milestones by at least 2-3 months. For the past two days I have managed to stop the diarreah by just giving what I know he can eat and drink, he has lived on Ramen noodles, and 7 up, last night I decided to take the breading off some nuggets and try him on that, 30 minutes later the diarreah started and the crying, and rash on butt, and pointing to his stomach, started all over again, so I guess until I can get to another specialist, he will be living on Ramen noodles, since I am scared to death to give him anything else now at this point.
    A.Bray08 3 Replies
    • February 1, 2008
    • 04:40 PM
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  • Hey everybody,In response to some of your questions, Gabe has had stool tests for Clostridium difficile, acid level, viruses, and parasites, all of which were negative. He has ear tubes because of recurring severe ear-infections. He has a history of severe sinus infections, and has had RSV twice before he was a year old. He has been behind on reaching his milestones by at least 2-3 months. He walks and runs now like any child his age, but his speech is still not where it should be for his age. As for the question about Genetic testing, I have been trying to get a referral for a Geneticist but the doctors say that is jumping the gun, and they do not think he needs one, so I have had no luck with that. I thank you all for your advice and caring, it means alot to me.
    A.Bray08 3 Replies
    • February 1, 2008
    • 10:20 PM
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  • My advice would be to find a new doctor. They should be testing him for what you think he may have. Just because it's "rare" doesn't mean it doesn't exist. I wish you the best of luck!
    Anonymous 42789 Replies
    • February 2, 2008
    • 05:02 AM
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  • To answer some of your other questions, The stool test checked for Clostridium difficile, acid levels, and any kind of parasites or virus. We have not been to a Geneticist yet, I have asked to be referred to one but the doctors say that is jumping the gun, and they do not think we need one. Gabriel has had a history of severe ear infections which he has ear tubes for now, he also has a history of severe sinus infections, and he has had RSV twice before a year old, he has got to have Rocephin shots when he gets sick, because everytime he takes an oral antibiotic, it messes up his system so bad, he ends up in the hospital for severe dehydration. He walks and run like any child his age. He is not where he should be in talking, but he seems to be getting better, he has been behind on his milestones by at least 2-3 months. For the past two days I have managed to stop the diarreah by just giving what I know he can eat and drink, he has lived on Ramen noodles, and 7 up, last night I decided to take the breading off some nuggets and try him on that, 30 minutes later the diarreah started and the crying, and rash on butt, and pointing to his stomach, started all over again, so I guess until I can get to another specialist, he will be living on Ramen noodles, since I am scared to death to give him anything else now at this point. Have you given him PROBIOTICS?DOM
    acuann 3080 Replies
    • February 2, 2008
    • 05:15 AM
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  • Mastocytosis is a VERY rare disease... but one of my uncles has it and it will probably kill him, (He often needs resusitation due to it and now lives very close to hospital due to it.. he's hospitalized weekly). As he lives in a different state to me and cause he now cant travel, I rarely get to see him but I will share what I know about the mastocytosis he has (thou ive heard there are different kinds.. he's got the worst kind, the one which worsens). With this he reacts to ALL kinds of things. not just foods, to the point of going into analyphalic? shock (complete collapse and stops breathing etc etc). I myself cause i have many allergy problems, (Ive been diagnosed with multiple chemical sensitivity, food intollerances and irritable bowel syndrome), have been advised by my uncle with the condition, to get tested for it. (ive not bothered asking my doctor thou as if i've got that.. i really just dont want to know right now) Apparently according to him (and he should know as being so sick and not able to be about others due to the severe reactions..so he's spent a lot of time studying his illness), the only way to really know if one has this problem is via a skin sample/anaylisis/swab of one of the rashes that are common in this condition... or by a bone marrow sample!! (that is what I got advised to have to be tested for it). Even with having those things, it can be hard to pick up as it as the samples may be clear when one has it somewhere else in the body.
    taniaaust1 2267 Replies
    • February 2, 2008
    • 11:11 AM
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  • Again, I will emphasize Mastocytosis is a VERY RARE disease. What is mastocytosis? The most common form of mastocytosis (say "mass-toe-sigh-toe-sis") is a disease of the skin. In very rare cases, mastocytosis can affect other parts of the body, like the stomach, the intestines and the bone marrow. This condition results when a person has too many mast cells. Mastocytosis can occur in people of any age. It's more serious in adults. It's usually mild in children, and they often outgrow it. What are mast cells? Mast cells are a kind of blood cell made by your bone marrow. They're part of your immune system that helps you fight off infections. There are more of these cells in the skin, the lungs and the intestines than in other parts of your body. Mast cells make a chemical called histamine. Normally, this chemical serves as a kind of alarm to let the immune system know that an infection is attacking part of the body. Histamine can cause swelling, itching and redness when your body reacts to something like an insect bite or a bee sting. What causes mastocytosis? We don't know why some people have too many mast cells. We do know some things that trigger the release of histamine from mast cells and cause the symptoms of mastocytosis. Symptoms may be triggered by cold or heat, certain medicines, emotional stress and insect bites. The triggers aren't the same in every person. What are the symptoms of mastocytosis? Possible Symptoms of mastocytosis Red, itchy rashRash that looks like frecklesHivesOne large lump on the skinDiarrheaStomach painFaintingDifficulty breathing The symptoms are different, depending on where the extra mast cells are. If there are too many mast cells in your skin, you might have a red and itchy rash. You could get hives or have a rash that looks like freckles. If you rub the rash, it may get red and swollen. Sometimes the mast cells collect at one spot in your skin and cause one large lump.If the mast cells are in your stomach and intestines, you might have diarrhea and stomach pain. However, this is rare. In some people, the extra mast cells cause a serious reaction, like a bad allergy reaction. Their blood pressure may suddenly drop to a low level, causing them to faint. They may have trouble breathing. This reaction can cause death if treatment isn't started right away. This kind of serious reaction is very rare. How does my doctor know I have mastocytosis? The symptoms of mastocytosis can be like the symptoms of many other health problems. Your doctor may do a skin biopsy to find out what is causing your symptoms. To do a biopsy, your doctor removes a small piece of skin and puts it under a microscope to look for extra mast cells. When an adult gets mastocytosis, a bone marrow biopsy may be needed to look for other blood diseases that might come along with the mastocytosis. If you don't have a rash but you have other symptoms, like diarrhea, your doctor may do a blood test or a urine test. Can mastocytosis be treated? Yes. Treatment can stop your mast cells from releasing histamine. It can also keep the histamine from causing problems. If your symptoms are severe, you should get treatment.Antihistamines, which are often used to treat allergies, are helpful. If a rash bothers you, your doctor may suggest that you be treated with ultraviolet light. If you have diarrhea, an oral version (taken by mouth) of a medicine called cromolyn (brand name: Gastrocrom) may help.The best treatment for mastocytosis may be to stay away from the things that seem to trigger your symptoms. It may help if you and your doctor list all the things that cause your symptoms. Did your symptoms start after you were exposed to heat or cold? Felt emotional stress? Took a certain medicine? Got an insect bite? Share what you learn with your doctor.Because mastocytosis can cause a severe allergy reaction in some people, it's a good idea to keep an emergency kit with you at all times so you can give yourself medicine to stop a bad reaction.Hope this helps.RegardsAprilp.s. Lymegirl or whatever, stop making posts that do not need to be here, they are not helpful. Thanks
    Adriesse07 41 Replies
    • February 2, 2008
    • 11:28 AM
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  • The skin testing which most of the medical profession does to test allergies can be highly inaccurate when it comes to food sensitivities, as they often dont show up on it. Even the type of blood testing for allergies which most GPs/MPs do, usually miss food sensitivities (only the most obvious types of allergies, type one allergies show.. umm i think these are called the IgE? allergies). IgG? allergy reactions are called "hidden allergies".. and there often can be a delayed reaction with them of up to 48 hrs (thou most commonly up to 24 hrs). These most doctors will miss. I strongly suggest to go to http://www.immunolabs.com/ and look into their tests. When i emailed them asking them about all this.. they actually sent me out an excellent free book explaining a lot of stuff about allergies etc, studies done eg studies done on finding food allergies and the success rate of cleaning up ear infections in children etc etc etc. Ear infections can be a strong sign of food intollerances!!! So contact them, get testing.. and finally KNOW all the things your child is actually allergic too. ....................... One can also slowly work out the "hidden food intollerances" by testing just one food out each day, (adding just one more food to whatever you already know he dont react too).. and then just seeing if there is any bad response to it. (Be aware that reactions can happen up to 48 hrs after a food). By testing out more than one food at a time, Ive found it to be near impossible when one is reacting to many things, to work out what is what esp with the delayed allergy reactions.
    taniaaust1 2267 Replies
    • February 2, 2008
    • 11:41 AM
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