Discussions By Condition: I cannot get a diagnosis.

My 4 yr old little boy... please help

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: sandra dogg
  • January 12, 2007
  • 11:22 PM

My 4yr old little boy hasnt gained any weight in 2 years, hes 31lbs, and has been for 2 yrs, he also 40inches 3ft 4inch tall, tiny little guy, there was a xray done on his bone, and his bone structure is the size of a 2 1/2yr old, so hes behind in growth by 2yrs, hes had chronic diarreah for 1 1/2yrs, so there have been stool samples done on him, and results are: low ph levels in stool and high fat in stool, blood work comes back good or okay, hes been tested for: lactos intolerant-negative, diabetes-negative, malnutritioned-negative, celiac disease(allergic to fiber)-negative did a colonoscopy on him 2weeks ago, but they did find sighns of celiac disease or immature intestines. this christmas eve had 2tablespoons of red blood and 2 quarter sized blood clots coming out of his rectum after his stool, couldnt find out why he bleed from his rectum through the colonoscopy... we try to have him gain weight by giving him high calorie meals, carnation instant breakfast, also he drinks alot of whole milk with half and half & chocolate syrup in it and still doesnt gain any weight, now doctors are saying that hes also behind mentally for his age, he drools alot, i never really noticed it was a problem, but they seem to think so, they say he should be able to hold in his saliva at this age.... he also has leg pains usually while hes sleeping but also during the day, some days he doesnt want to walk around and cries cause hes hurting too bad..
i just dont know what to do or what to look for, i feel like all the things doctors are looking for come back negative, and still dont know anything, and if this is serious i dont want to get the answer too late, please help me...
Thank you ~Sandra~
sandraburton515@comcast.net

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14 Replies:

  • This sounds serious , I would definately get a diffrent doctor , as they are like auto mechanics , there are good ones and bad ones . All I can say is I hate to hear about infants being sick , especiaaly with all the technology out there , thats just not acceptable for a 4 year old to be sick like that . Just to show you ,I live near chicago in a small town , my dad came down with likemia (pardon my spelling) . The local hospital gave him 2months because of his age of 76 and not being able to tolorate chemo . I took him to northwestern hospital in chicago and 1 year later he is still alive and actually cancer free right now and doing quite good . Lesson learned , always go to the best hospital , even if its a hardship to do so . If you are near the chicago area , I would take him there . If you can't afford it , they havea freecare program that you can apply for online , I would definately do it .God Bless and I will pray for you !
    Anonymous 42789 Replies
    • January 13, 2007
    • 00:06 AM
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  • Has he had an abdominal 360 CT scan? It is impossible to see the jejeunum (middle intestine) during a colonoscopy. Also, if they saw signs of celiac disease-like damage (very distinctive raised "villi"), he might still have it - A simple celiac screening frequently gives false negatives. If nothing else, you know this is at least some source of the problem and probably the blood. Try a gluten-free diet. It's healthier than a regular diet, and you have NOTHING to lose. Ignore calories for awhile, and concentrate on nutrition. Make sure he is getting a gluten-free multi-vitamin (can be found at any health food store) for toddlers, along with calcium and D. How was he as infant? Did he nurse from breast or bottle? Any issues? Health food stores, and even many supermarkets have a large selection of gluten free items to replace bread, pasta, cookies, cake, etc. - ask the manager for help. Be very strict for at least 6 weeks and see if there is an improvement. If there is, report it to the doctor and go from there. Good luck.
    Anonymous 42789 Replies
    • January 13, 2007
    • 00:34 AM
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  • I am so sorry for what your little boy is going through. I have to agree with the previous post that celiac is often missed. I can not tell you how many Dr's tried to tell me my son had no allergies when he had much the same symptoms. We finally found a Dr. that helped us with an elimination diet. If he reacted badly to anything, he would take that out of the diet. Through this process, we have discovered that he can not digest certain proteins and while it is not a typically allergy it is none the less life threatening. He eats no dairy or gluten as well as a number of other foods. As a side note, we had an allergy test when he was a bit older that showed many more food allergies including soy. We are a Rice milk family. He is now 6 1/2 and is on the weight charts for the first time in his life. Find someone to listen to you or at least try eliminating the common allergens, wheat, dairy, eggs etc and then add them back slowly watching for changes in his behaviour and stool. I feel so badly for you all and wish you all the best.
    Anonymous 42789 Replies
    • January 13, 2007
    • 06:04 AM
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  • :) Hello, this is so sad & @ such a young age; I feel he or she may be reacting to a vacine shot? or maybe an antibiotic of some sort. These two substaces can & will cause symptoms such as you describe. My thoughts on the subject are, a thorough body cleansing to refresh the natural defence system. Now go & see a qualified physician in the field of natural medicines, and they will advise you. Good Luck. As Always In His Service.:D
    hogndog 426 Replies
    • January 13, 2007
    • 09:16 AM
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  • does he tend to cry a lot?is there a high pain threshold?are there any unusual facial features?e.g.small pointed chin,small nose ,round or widely spaced eyes?perhaps a rather thin upper lip?i hope you have the sense to ignore the previous contributor.let me know about your observations.
    Anonymous 42789 Replies
    • January 13, 2007
    • 00:04 PM
    • 0
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  • :) You May Ignore Me Any Time; But please don't ignore this. It is a site that i just came across; http://www.4myheart.com Give it a go & let me know; As Always In His Service.;)
    hogndog 426 Replies
    • January 13, 2007
    • 00:12 PM
    • 0
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  • So, he tested negative for Celiac. Then the problem persists. Now he's 'maybe' for Celiac. I bet if you wait 2 years again, he will be 'definately' Celiac.Sorry to inform you, but that's how the diagnosis by biopsy works. :mad: It won't be a 'sure' positive until his intestines are completely flattened. Please try the blood and/or fecal tests for Celiac, or an elimination diet. For his symptoms to be so severe at such a young age, it would not surprise me at all if he had multiple food intolerences. Maybe wheat/gluten is OK for him, but then I bet its the milk, soy, or something else thats messing him up.Don't ever underestimate how severe food intolerences can be, or how many people suffer from them, undiagnosed & untreated. Its so common that its worth seriously looking into for these types of chronic digestive and developmental issues. In teenagers and young adults its called 'anxiety' and treated with depression medication, at older ages it develops into cancer and other auto-immune diseases. The doctors almost never call it what it is. From Europe (where they blood screen everyone), we know gluten intolerence occurs 1 in 100 times in a random sample of the Caucasian population (1 in 166 to 200 for non-white populations that do universal screening). In America, it is only diagnosed in 1 out of 4200 people. Thats 41 people per 4200 that are suffering, undiagnosed, from one single food - almost 3 million people. And that doesn't scratch the surface of milk, corn, soy, rice, potato, pepper, and other common food intolerences.I hope it works for him. Its very tough. There are support groups that specialize in the topic, they can be a great resource for moral support and technical advice. Food intolerence isn't a normal allergy so it won't show up on normal allergy screenings. The body is allergic to the substance, but it is only allergic to the PARTIALLY digested protein. It will show none or little reaction to the undigested protein, so you need a Celiac blood panel or Celiac fecal analysis - and that will only check wheat/rye/barley. I'm a real fan of the elimination diet, but it is not something anyone can do alone. You need help and guidance to do it right, its just too complicated to learn overnight (10 months in, I'm still learning with lots of help!). At the least, you will learn a lot about how food is manufactured and legally regulated and what the additives can do. Some doctors realize its value, if you can find one you can find a really cheap solution to a really bad problem. There are also free resources online, so you can do it for almost no cost at all - and it doesn't interfere with other treatments and medications.
    Azaral 152 Replies
    • January 13, 2007
    • 05:31 PM
    • 0
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  • :D Hello There; Well shall we begin? While searching for answers to some of your questions, i have found a few that may be of interest. Because your of your need i came up with a couple. http://www.lifeworkswellnesscenter.com The other; http://www.4myheart.com & still another; http://www.candidafree.net/index.htm Hope these help; As Always, In His Service.:)
    hogndog 426 Replies
    • January 13, 2007
    • 06:08 PM
    • 0
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  • Go totally gluten-free, Celiac diet, they say that if you correct his diet - his growth will catch up if you do it while he is yound!
    Angst2Amity 12 Replies
    • February 15, 2007
    • 03:06 AM
    • 0
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  • My 4yr old little boy hasnt gained any weight in 2 years, hes 31lbs, and has been for 2 yrs, he also 40inches 3ft 4inch tall, tiny little guy, there was a xray done on his bone, and his bone structure is the size of a 2 1/2yr old, so hes behind in growth by 2yrs, hes had chronic diarreah for 1 1/2yrs, so there have been stool samples done on him, and results are: low ph levels in stool and high fat in stool, blood work comes back good or okay, hes been tested for: lactos intolerant-negative, diabetes-negative, malnutritioned-negative, celiac disease(allergic to fiber)-negative did a colonoscopy on him 2weeks ago, but they did find sighns of celiac disease or immature intestines. this christmas eve had 2tablespoons of red blood and 2 quarter sized blood clots coming out of his rectum after his stool, couldnt find out why he bleed from his rectum through the colonoscopy... we try to have him gain weight by giving him high calorie meals, carnation instant breakfast, also he drinks alot of whole milk with half and half & chocolate syrup in it and still doesnt gain any weight, now doctors are saying that hes also behind mentally for his age, he drools alot, i never really noticed it was a problem, but they seem to think so, they say he should be able to hold in his saliva at this age.... he also has leg pains usually while hes sleeping but also during the day, some days he doesnt want to walk around and cries cause hes hurting too bad..i just dont know what to do or what to look for, i feel like all the things doctors are looking for come back negative, and still dont know anything, and if this is serious i dont want to get the answer too late, please help me... Thank you ~Sandra~sandraburton515@comcast.netPlease, don't take the allergy/intolerance tests as 100% accurate because they have huge margins of error. If he has not been treated for parasites, you have a good place to start- but do not use synthetic antiparasitics because they are dangerous.*Please don't feed him milk, juice or sugar. Juice some veggies.*Make sure you give him spoons of flaxseed oil and cod liver oil because that will heal his membranes.*Cut back on wheat and other cereals.I would strongly recommend you trying Nambudripad's Allergy Elimination Technique on your child. Those leg pains or foot pains at night is the child's body way of reacting to allergies. Please do not feed him processed food.Take Care.
    Anonymous 42789 Replies
    • February 15, 2007
    • 03:25 AM
    • 0
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  • All of the posts dealing with nutritional imbalance: I have to agree. He is not processing certain foods and needs a total overhaul in his diet. He also needs the best quality children's chewable acidopholus you can find. This will help build up his damaged intestinal flora. Absolutely nothing with high fructose corn syrup, no dairy, no soy, corn or gluten....you may well ask (and I KNOW this is hard) What the heck CAN he eat? Please visit www.wholeapproach.com. They have a food list you can print out that is very helpful and focuses on Greenlight foods he can eat, with yellow and red light foods to avoid. YOU MUST READ LABELS> I recommend making a brown rice porridge: take 1 cup ORGANIC short grain brown rice and add 4-5 cups pure spring water. Bring to boil and simmer over low heat at least 5-8 hours. This is a highly digestible, very fortifying Chinese food therapy. It will really help give his digestion a break. If you must sweeten this use only a small amount of raisins. Carnation Instant Breakfast and things like Boost and Ensure are pure crap, and very toxic...look at the ingredients and you will find high fructose corn syrup is near the top. If he was fed formula, the second ingredient in childrens' formulas is...high fructose corn syrup! Our bodies just can't process this form of sugar, and I believe it is the #1 reason we have such a high obesity/diabetes epidemic in the Western world today. Please get him on a probiotic asap. www.vitacost.com has several to choose from and very good prices. Best wishes.DOM
    acuann 3080 Replies
    • February 15, 2007
    • 03:40 AM
    • 0
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  • All of the posts dealing with nutritional imbalance: I have to agree. He is not processing certain foods and needs a total overhaul in his diet. He also needs the best quality children's chewable acidopholus you can find. This will help build up his damaged intestinal flora. Absolutely nothing with high fructose corn syrup, no dairy, no soy, corn or gluten....you may well ask (and I KNOW this is hard) What the heck CAN he eat? Please visit www.wholeapproach.com. They have a food list you can print out that is very helpful and focuses on Greenlight foods he can eat, with yellow and red light foods to avoid. YOU MUST READ LABELS> I recommend making a brown rice porridge: take 1 cup ORGANIC short grain brown rice and add 4-5 cups pure spring water. Bring to boil and simmer over low heat at least 5-8 hours. This is a highly digestible, very fortifying Chinese food therapy. It will really help give his digestion a break. If you must sweeten this use only a small amount of raisins. Carnation Instant Breakfast and things like Boost and Ensure are pure crap, and very toxic...look at the ingredients and you will find high fructose corn syrup is near the top. If he was fed formula, the second ingredient in childrens' formulas is...high fructose corn syrup! Our bodies just can't process this form of sugar, and I believe it is the #1 reason we have such a high obesity/diabetes epidemic in the Western world today. Please get him on a probiotic asap. www.vitacost.com has several to choose from and very good prices. Best wishes.DOMYes- What is he going to eat? :) There is plenty! Starting with the leafy greens, which by the way are very feeling.*Broccoli, water cress, yams, green beans, leeks, beets, green collards, spinach, onions, basil, parsley, avocado, cucumber,taro, yucca, tofu, a hand full of legumes,lamb, and goat. The ratio of omega 3 to omega 6 fatty acids is totally off in most people and that is because we eat too much cereal.Have a good one everyone.
    Anonymous 42789 Replies
    • February 15, 2007
    • 03:50 AM
    • 0
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  • I wanted to re-emphasize some of the things others have said about food allergies. My daughter (now 10) has suffered from ear, bladder and kidney infections since she was born... hospitalized several times, and has been on antibiotics for years. She also wet the bed until just recently. We had her tested for food allergies, twice actually, because people kept suggesting that it was related to a dairy allergy. Both times she was negative for dairy and wheat allergies. Finally, a nutritionist, suggested we do a blood test (they call it delayed response testing) and sure enough she was highly allergic to both. We took her off and her bedwetting stopped right away, and no more infections... knock on wood! I was told that because her body was always fighting an allergy, her thyroid was always in overdrive, and damaged in the process. She has come a long way, and is doing great now. So, for your little boy, I would HIGHLY suggest you see a GOOD nutritionist... or a doctor of natural or holistic (spelling?) medicine. And I would HIGHLY suggest that you have delayed response allergy testing done for dairy and wheat. It's a blood test... I can't remember if that's IgE or IgG, but your doctor should know. The skin testing does NOT work for dairy allergies.Good luck, I hope that someone's suggestions here help your little boy.
    Sick&Tired 11 Replies
    • February 15, 2007
    • 03:54 AM
    • 0
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  • My 4yr old little boy hasnt gained any weight in 2 years, hes 31lbs, and has been for 2 yrs, he also 40inches 3ft 4inch tall, tiny little guy, there was a xray done on his bone, and his bone structure is the size of a 2 1/2yr old, so hes behind in growth by 2yrs, hes had chronic diarreah for 1 1/2yrs, so there have been stool samples done on him, and results are: low ph levels in stool and high fat in stool, blood work comes back good or okay, hes been tested for: lactos intolerant-negative, diabetes-negative, malnutritioned-negative, celiac disease(allergic to fiber)-negative did a colonoscopy on him 2weeks ago, but they did find sighns of celiac disease or immature intestines. this christmas eve had 2tablespoons of red blood and 2 quarter sized blood clots coming out of his rectum after his stool, couldnt find out why he bleed from his rectum through the colonoscopy... we try to have him gain weight by giving him high calorie meals, carnation instant breakfast, also he drinks alot of whole milk with half and half & chocolate syrup in it and still doesnt gain any weight, now doctors are saying that hes also behind mentally for his age, he drools alot, i never really noticed it was a problem, but they seem to think so, they say he should be able to hold in his saliva at this age.... he also has leg pains usually while hes sleeping but also during the day, some days he doesnt want to walk around and cries cause hes hurting too bad..i just dont know what to do or what to look for, i feel like all the things doctors are looking for come back negative, and still dont know anything, and if this is serious i dont want to get the answer too late, please help me... Thank you ~Sandra~sandraburton515@comcast.net____________________________________________________________________________Hi i am very sad to hear about your child's case but i am only a person with pyle's disease. I am 14 years old but i weight only 90 pounds which is really bad. I also aftenly have joint pain, mostly in the knee. and my doctor says i have knock knees. Please don't give up hope as i have not, even though everyday is a challenge. If u would like more information here is a site to look at http://www.wrongdiagnosis.com/p/pyle_disease/intro.htm
    Anonymous 42789 Replies Flag this Response
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