Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 Hi everyone, I am relieved to say the MRI showed no brain tumor or mass. WOO HOO! The relief is overwhelming, but as my husband was quick to point out " so what IS going on? " . I dont know if the neuro will investigate further for other causes, or try once again adjusting the meds is already on for the original diagnosis of CPH. It still doesnt explain his increasing balance problems or sudden severe attacks of eye pain on top of the 'usual' head pain. A visit to the ped today in the hope of reducing some of the meds is on ended up increasing them : ( To the long term med regime of 13 doses of various meds daily, she has added short term use of Nilstat, Difflam solution and Chlorhexidine solution to help with the mouth ulcers. She feels the cause of the ulcers may be viral, although unlikely( because he has had repeated flares in the past 4 mo), or linked to the Indomethacin (a NSAID) or the Septrim, or mucousa ulceritis, or possibly neutropenia. Take your pick........ now to rule each one out. has started a course of antibiotics to help clear her chest infection, and she continues with the nebulised ventolin treatments. The group seems so quiet lately! Is it still school holidays there? , mum to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 - congratulations on s results. I wanted to ask if either of your children have had a rectal biopsy for their bowel problems? Macey is having one a week from tomorrow and I'm wondering what type of pain she will be in or what is completely involved. She is having a full thickness biopsy instead of suction. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 - congratulations on s results. I wanted to ask if either of your children have had a rectal biopsy for their bowel problems? Macey is having one a week from tomorrow and I'm wondering what type of pain she will be in or what is completely involved. She is having a full thickness biopsy instead of suction. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 - congratulations on s results. I wanted to ask if either of your children have had a rectal biopsy for their bowel problems? Macey is having one a week from tomorrow and I'm wondering what type of pain she will be in or what is completely involved. She is having a full thickness biopsy instead of suction. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 , Thank God!!! I was so worried about and your family. I'm glad that he does not have a tumor, but of course it doesn't get rid of his pain. On the balance issues, does he have recurring ear infections? Maybe that could be causing it even just residual fluid in the ears? Just a thought, I'm sure it's already been thought of though. Yes, school has started back here, although not for my kids. Caelan is too young and we are homeschooling Grace. Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal antibodies, EA's, recent adenoidectomy, resolving almost total hair loss, penicillin allergy) Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut, Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's, recent adenoidectomy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 , Thank God!!! I was so worried about and your family. I'm glad that he does not have a tumor, but of course it doesn't get rid of his pain. On the balance issues, does he have recurring ear infections? Maybe that could be causing it even just residual fluid in the ears? Just a thought, I'm sure it's already been thought of though. Yes, school has started back here, although not for my kids. Caelan is too young and we are homeschooling Grace. Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal antibodies, EA's, recent adenoidectomy, resolving almost total hair loss, penicillin allergy) Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut, Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's, recent adenoidectomy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 , Thank God!!! I was so worried about and your family. I'm glad that he does not have a tumor, but of course it doesn't get rid of his pain. On the balance issues, does he have recurring ear infections? Maybe that could be causing it even just residual fluid in the ears? Just a thought, I'm sure it's already been thought of though. Yes, school has started back here, although not for my kids. Caelan is too young and we are homeschooling Grace. Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal antibodies, EA's, recent adenoidectomy, resolving almost total hair loss, penicillin allergy) Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut, Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's, recent adenoidectomy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 , So pleased about 's results!!! I'm very happy for you. I am curious about what is causing the headaches. Maybe it's something simple that's been overlooked? Just wondering. . . I don't know much about headaches or migraines & I'm clueless as to where you should start. Hope it gets better soon. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 3 months Quote Link to comment Share on other sites More sharing options...
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