Discussions By Condition: I cannot get a diagnosis.

10 yr son has multiple gi symptoms

Posted In: I cannot get a diagnosis. 46 Replies
  • Posted By: cascade
  • August 20, 2008
  • 01:08 AM

our 10 year son has had multiple gi symptoms for the past 2 years from chronic diareha, chronic abdominal pain, weight loss and recently did a capsule endoscopy and they found prominent lymphoid hyperplasia in the small intestine. Blood work has steadily showed decreasing #neutrophils and that % also going down and now his wbc is low. His igG4 is elevated. Yet they say all blood work is ok. Ct scan last week has not been fully explained to me, it was of abdominal and pelvic area. One nurse read some of the report to me and it sound like they found some areas of question yet a second nurse with another doctor said it was a non specific findings and was considered normal. I am sure there is so much more that I am missing but there has been so much. He is scheduled early September for biopsies of the lymphoids, but I feel they are missing something. Does any one have any ideas. One more thing is that he often has leg pain and a few other bones hurt

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  • i'm no expert...but, it sounds like autoimmune...test for celiac's (gluten tolerance).
    Anonymous 42789 Replies
    • August 20, 2008
    • 11:18 PM
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  • He has been tested a couple of times for celiac and the doctors say the test is negative. His colonscopy and endoscopy along with capsule endoscopy reports said no signs of chrons or celiac. The blood work for the igG subclasses were to look for immunodificencies but only the igG4 came back elevated and they said it was not extremely high. We have asked several times to repeat tests and ask if they are 100% sure and we always get the run around. Up to the capsule study they were conviced it was just ibs, but as you may know ibs does not cause weight loss. He has lost over 10% of his body weight. We are scheduled biopsies of the lymphoid early Sept but we are hoping to go in and have any extra info that could point them to something they are missing. Thanks for your reply
    cascade 25 Replies
    • August 21, 2008
    • 01:02 AM
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  • He has been tested a couple of times for celiac and the doctors say the test is negative. His colonscopy and endoscopy along with capsule endoscopy reports said no signs of chrons or celiac. The blood work for the igG subclasses were to look for immunodificencies but only the igG4 came back elevated and they said it was not extremely high. We have asked several times to repeat tests and ask if they are 100% sure and we always get the run around. Up to the capsule study they were conviced it was just ibs, but as you may know ibs does not cause weight loss. He has lost over 10% of his body weight. We are scheduled biopsies of the lymphoid early Sept but we are hoping to go in and have any extra info that could point them to something they are missing. Thanks for your reply Have they done a full stool exam over several days period and tested specifically for clostridium difficile infection? This is a bacterial infection that causes pseudomembranous colitis and is DIRECTLY caused by certain antibiotic use. Most doctors don't test for this and it is becoming increasiningly common thru repeated antibiotic use. Symptoms don't often develop until up to six months after stopping an antibiotic so a correlation is often not found. I know because I had this, and thought I was going to die - it was horrible. My doctor told me the treatment for c. diff would be MORE intense antibiotics...I said no thank you and went to my Oriental Medical doc who prescribed me herbs to clear this up. I was symptom free in two weeks. C diff is just horrible. I hope your son doesn't have this, but he needs to be specifically tested to rule it out. Docs miss this so please just test him to rule it out. Sacchromyces Boullardi is the specific PROBIOTIC that will target c. diff. At the very least your son needs to be on a good quality PROBIOTIC with several strains of beneficial flora. If he has c diff the above s. boulardii is essential. If not, then any good probiotic should be helpful. IN addition to testing for clostridium difficile, I agree that celiac should be more thoroughly tested...I'd try to go gluten free and see if symptoms improve. Best wishesDOM
    acuann 3080 Replies
    • August 21, 2008
    • 02:19 AM
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  • We have had several different stool testing done but the one you mention I thought sounded familiar but I can't find it in his records. It is worth a shot to request that the doctor put in the orders for it. We have tried several natural remedies but no change. We have not tried a complete removal of gluten, the doctors have always said that since the tests come back negative for celiac that we should not put him on a gluten free diet. The doctors act like the tests they have done for celiac are the absolute and if they come back negative then he does not have it and all the procedures have not showed signs either, is there a more specific test that we should be asking for.
    cascade 25 Replies
    • August 21, 2008
    • 03:16 AM
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  • ok we still don't have any diagnosises but we did receive a copy of the written ct scan report and several things pop out on it.1.minimal linear atelectasis in the inferior lingula, right middle lobe and both lower lobes2.paucity of meseteric fat with numerous prominent ill-defined mesenteric lymph nodes noted. overall misty appearnace of the mesentry, can be seen in setting of lymphoproliferative disease. clinical correlation is requested by radiologist.3. distention of urinary bladder noted4. patient is skelletally immature. With all that his pediatrician says it all non-specific and wait to talk to his gi doctor. Well we fired his pediatrician and looking for a new one. if any one knows what any of the stuff above means please let us know or if you know anything at all let us know. things just seem to be getting worse and no answers
    cascade 25 Replies
    • August 22, 2008
    • 01:41 AM
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  • ok we still don't have any diagnosises but we did receive a copy of the written ct scan report and several things pop out on it.1.minimal linear atelectasis in the inferior lingula, right middle lobe and both lower lobes2.paucity of meseteric fat with numerous prominent ill-defined mesenteric lymph nodes noted. overall misty appearnace of the mesentry, can be seen in setting of lymphoproliferative disease. clinical correlation is requested by radiologist.3. distention of urinary bladder noted4. patient is skelletally immature. With all that his pediatrician says it all non-specific and wait to talk to his gi doctor. Well we fired his pediatrician and looking for a new one. if any one knows what any of the stuff above means please let us know or if you know anything at all let us know. things just seem to be getting worse and no answers Make sure you test for the c. diff.Sorry I cannot comment on your son's test results - I am sure someone here will be able to shed light. Has he been taking a probiotic?DOM
    acuann 3080 Replies
    • August 22, 2008
    • 01:43 PM
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  • will defiently have stool checked and he has taken probiotic stuff in the past to no avail. Will let you know how the stool test goes.
    cascade 25 Replies
    • August 22, 2008
    • 10:44 PM
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  • will defiently have stool checked and he has taken probiotic stuff in the past to no avail. Will let you know how the stool test goes. I highly suggest finding a different probiotic, one that is dairy free by Jarrow. I also recommend florastar for kids. A probiotic is not going to make any drastic changes, but it is important for immune health and you should see a difference after several months. DOM
    acuann 3080 Replies
    • August 23, 2008
    • 00:57 AM
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  • will look into getting a new probiotic. thank you so much for all advise. :)
    cascade 25 Replies
    • August 23, 2008
    • 02:59 AM
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  • what is your sons travel history?has he taken worm treatment?Did the doctors try a course of antibiotics?Dr G
    Anonymous 42789 Replies
    • August 23, 2008
    • 02:40 PM
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  • He has no travel history and he has not been treated for worms but has been tested for parasites several times and always came up negative. In past couple of years he has been on antibiotics for different things and now he has had his steroid treatment tripled and the prescrip is for a month.
    cascade 25 Replies
    • August 24, 2008
    • 04:30 PM
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  • Have they tested for porphyria, it is rare but look it up. I know of a 16 yr old that lives around me that has it. It took them a long time to diagnose, she has been really sick and lost a lot of weight. Good Luck.TButler
    Anonymous 42789 Replies
    • August 27, 2008
    • 02:12 AM
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  • so we talked to his gi doctor today and they are ruling out giardias and the immunodefiencies. And his doctor says he has no explaination at this point that we need to wait for the colonscopy and endoscopy for biopsies to be taken. in a letter from the gi to his pediatrician it stated 3 causes for what they found on the capsule study and the two listed above and lymphoma, we are praying its not that. Plus the gi doctor at the childrens hospital requested that I get the digital ct scans copied and bring up with us next week for the biopsies, because the ct written report is not very clear to him. So if any one has any input that would be great.
    cascade 25 Replies
    • August 27, 2008
    • 11:52 PM
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  • Do you know for sure that he was tested for clostridium difficile infection and if you have the results from that test? I can't stress how important this is - docs miss this and it is becoming increasingly common and is very nasty. DOM
    acuann 3080 Replies
    • August 28, 2008
    • 00:00 AM
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  • I actually have a phone appt with a new pediatrician tomorrow and I have it written down to see if tested for already and if not can the orders be placed to do so. We are trying a new pediatrician to see if this one will act more like an advocate for our son with the specialists than the other one did. Will post if he already has been tested or if they let us go ahead and do the test. One more thing, the gi specialist has tripled his entocort and since doing so, he seems worse. He is running regular fevers and he fills neausaus and more steady pain in his tummy. Does any one know if the steroid entocort could be worsening what ever is going on
    cascade 25 Replies
    • August 28, 2008
    • 02:06 AM
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  • Inregards to prophyria i do not believe that he has been tested for that. He has no skin conditions and his urine has never been dark. I looked the condition up and it does not really fit him, but with all advice it is worth mentioning to the doctors, just in case one never knows
    cascade 25 Replies
    • August 28, 2008
    • 02:13 AM
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  • so had phone appt with new pediatrician today and we got nowhere with that. Will not refer to have lungs looked at even though ct showed atelectasis in both lobes. No order to check his c. diff. Even though things have popped up marked low on his last blood work she said they are just not low enough or more things marked wrong to warranty anything else. We were told to just deal with gi and that it is not their job anymore that he is seeing a specialist outside the network. How frustrating. so right now we wait until wednesday to have the endo and colonscopy and have biopsies taken.
    cascade 25 Replies
    • August 28, 2008
    • 11:49 PM
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  • Just got back from the colonscopy/endoscopy. they should us pictures of the lymphoid hyperplasia and it is really prominent thru out the small intestine that they could get too. So biopsies were done but we learned after the fact that they were only biopsing the skin around the nodules, that they did not actually biopsy one of them. We wont get results for about a week. So if any one knows anything else about lymphoid hyperplasia and treatment please let us know. I can not find any good sites on it, treatment, causes.
    cascade 25 Replies
    • September 3, 2008
    • 06:36 PM
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  • ok, so the doctor called this afternoon with results of the biopsies and there is no sign of lymphoma which is great news but it also leaves us with they don't know what is causing the prominent lymphoid hyperplasia. the gi doc said that he wants to put our son on predisone at a medium dosage twice a day for two weeks and then switch to every other day. All he had to tell us was that the immune system is overactive for some reason which is causing it to fight something and is causing the lymphoids. He said as a gi specialist there is nothing more he can do but try and treat the symptom of the lymphoids with steroids and hopefully that helps with the pain that our son has been living with for the past few years. So we are going to call and see about getting him in to a immunologist to see if they can figure it out. We can't keep him on steroids to try the symptoms if they don't know what is causing it. so if any one knows more about prominent lymphoid hyperplasia please comment.
    cascade 25 Replies
    • September 7, 2008
    • 11:54 PM
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  • Hi... I am so sorry that I am unable to remember where I read an article about Lymphoid hyperplasia of the small intestine being associated with hypogammaglobulinemia, but I did read an article a few months ago. I am on my way to work, but you might want to google it when you get a chance... Kiera
    Anonymous 42789 Replies
    • September 8, 2008
    • 07:07 AM
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