Discussions By Condition: I cannot get a diagnosis.

severe lower abdominal pain

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: tjcmom
  • April 28, 2008
  • 04:18 AM

My 16 year old daughter recently had ligament reconstructive surgery on her ankle. She had some mild vomitting for a few days accompanied by lower abdominal pain mostly on her left side. She was taking Naproxen twice a day and Tylenol with Codeine for pain. I thought the meds were making her sick and we discontinued them 4 days after surgery. At this point, the pain was radiating across her abdomen to the other side, in her chest, and her back. I thought she made be constipated from the T3 and she took a couple of laxatives. She then had severe vomitting and diarrhea. I took her to the local ER. She was given Zofran and a green concoction to drink to soothe her belly. None of it worked. We ended up going home with a script for 40mg. of Prilosec twice a day and Zofran for nausea. She got progressively worse to the point that she couldn't get out of bed and everything she ate made her sick to her stomach. We went to the pediatrician's office and were set up to see a GI doctor. She continued to go downhill and we ended up being sent to the ER at Children's Hospital by the GI doctor. Initially they were unable to find anything wrong, but took anx-ray of her abdomen and believed she was still a little backed up and proceeded to give her a mineral oil enema as well as a Fleet. She passed nothing but bright red blood. She was admitted. Morphine did not even touch her pain. Her bloodwork was normal except that her hemoglobin level did drop then rebounded to the low end of normal. She was ultrasounded as normal She had an upper GI scope which found 3 stomach ulcers, but they were very small. In the meantime, the pain in her back had gotten much worse and she had stabbing pains in her side when she urinated. The worse pain continued to be very low in her abdomen. She was discharged with ulcer meds. The pain continues, she still gets sick when she eats, and she is still weak. I believed she might have Celiac disease activated by the surgery. She has a history of multiple fractures, very irregular menstrual cycles, and had reflux-like symptoms about a year and a half ago. She has a moderate-severe hearing loss. My husband has a yet to be diagnosed autoimmune disorder causing severe migratory joint and bone pain, bloody stool, and chronic fatigue. He has been bedridden for months on 2 occasions. My six year old son is also hearing impaired and complains of stomach pain almost every time he eats. I have a 15 year old son with none of these problems. To my surprise my daughter's Celiac tests were negative. Does anyone have any thoughts of a diagnosis? Please help! Thank you.

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10 Replies:

  • OMG my thoughts and prayers are with you and your daughter....apparently we ahve similar children that have "nothing" wrong with them...i too am wondering if we have celiacs disease...we started the end of february with sever lower abdominal pain...off to er ..cat scan showed swollen lymph nodes in her abdomen which was diagnosed as mesentericadenitis...should be gone in a few days they did blood work and catscan....since that tiem we have been to the er 7 times...the gi doc twice she has had another cat scan a pelvic ultrasound...a gi barium swallow...a hip xray ...an upper gi and colonoscopy everything is normal....take her for counseling...she hasnt been to schools ince the end of feb...her counditions have morphed into continued abdominal pain......rashes..no fever.....pain in her neck her back...hot skin to the touch..her skin brusn now she cant stand water touching her so she cant bathe had to get her a waterless based cleaner called cetaphil has helped with the burning skin although she still has it..lupus lymes rocky mt spotted and strep all negative...plus for the past three weeks almost every night we cant breathe the throat closes she starts gasping and panting all the while in horrible pain....help help i know this is not in her ehad and they are missing something but what????
    hollywood482 1 Replies Flag this Response
  • Thank you for your response. My prayers are with you as well. Your poor child. I know how frustrated I feel and cannot even imagine what you are going through! I can't help but wonder if we are not destroying our immune systems as we are our planet. There are so many incidents where our bodies are attacking themselves. I just hope and pray that someone will figure out what is going on and put an end to this suffering. I am also sick and tired of people second guessing what people are going through. My daughter sucked it up and played a whole season of basketball with what we later found out was a broken ankle. She is a tough young lady and is not making up the pain she is having. I am determined to find out what is happenning to her even if it means going to medical school myself. Again, I am so sorry for your child's agony and wish for help soon.
    tjcmom 3 Replies Flag this Response
  • As soon as you start talking about issues that run in families, you are usually talking about rare diseases which take genetic specialists to diagnose. Most doctors are not familiar with these issues. Best to find a good geneticist in your area. Meanwhile, I found this article for you: 1: Acta Paediatr Taiwan. 2004 Jul-Aug;45(4):249-52.Recurrent multiple hepatic abscesses, hepatic calcification and congenitalhearing loss in a child with chronic granulomatous disease.Caksen H, Patiroğlu T, Erol M, Poyrazoğlu MH.Associate Professor in Pediatrics, Yüzuncü Yil University Faculty of Medicine,Van, Turkey. huseyincaksen@hotmail.comChronic granulomatous disease (CGD) is a rare inherited primary immunodeficiency in which phagocytes cannot destroy catalase-positive bacteria and fungi. In this article, we describe a 6-year-old boy with CGD associated with recurrent multiplehepatic abscesses, hepatic calcification and congenital hearing loss because ofrare presentation. To the best of our knowledge, congenital hearing loss in CGDhas not been reported in the literature. In the treatment of our patient, acombination of antibiotherapy, percutaneous drainage and surgical interventionwas used, but multiple hepatic abscesses recurred during the follow-up. Onaccount of this case, we would like to reemphasize that recurrent hepaticabscesses are frequently observed and difficult to treat in patients with CGD.Additionally, we would like to state that congenital hearing loss may be a partof the disease, or it may be coincidental. To clarify the last point, we suggest that all patients with CGD should be tested for hearing impairment.PMID: 15624376
    aquila 1263 Replies Flag this Response
  • Just a suggestion...I think you should look into colitis. I had that last year and it was the worst abdominal pain you could ever imagine. Look into a disease called CDIFF! I hope this gives you a little more insight:) Good Luck!
    Anonymous 42789 Replies Flag this Response
  • We went to see a rheumatologist today. He thinks she has Reflex Neurovascular Dystrophy. She has been sick for a month now. In the past two weeks, she has added itchy, white hives 20 minutes after she eats all over her body, a blotchy rash that comes and goes, stabbing pain in her left side into her pelvic region when she urinates, and some edema in her hands and wrists started a few days ago. She is exhausted. She eats very little because her abdominal pain increases when she does eat, but she has gained 20 pounds in 4 weeks. She becomes dizzy and light-headed often and has visually blacked out on a few occasions. She has had ultra sounds, x-rays, and c-t with contrast of her abdomen an pelvic region. All have been negative except for some cysts on her ovaries that do not appear to be alarming. Her pain is internal-not joint pain conducive to my understanding of RND. Any ideas?
    tjcmom 3 Replies Flag this Response
  • Just a suggestion...I think you should look into colitis. I had that last year and it was the worst abdominal pain you could ever imagine. Look into a disease called CDIFF! I hope this gives you a little more insight:) Good Luck!Cdiff (Clostridium difficile) is a bacteria and many times it is caused by too many antibiotics which kill the good bacteria in your gut. Cdiff is a bad bacteria that takes over and causes a severe case of colitis (diarrhea).
    Beth56 272 Replies Flag this Response
  • I feel so bad when I read posts like this...I was fine up until I turned 28 and then my world tunred upside down with one elusive illness after another..I had the wierdest symtpoms and I swear I was contagious..It seemed like whereever I worked, my friends, my family started experiencing similiar issues on varying scale and it seemed to go on for so long..I was told I had mono- chronic epstein bar,IBS, a ureaplasma infection of the urinary tract, Divirticulitis, duodal ulcers, acid refulx, the list goes on. I had so many syptoms..The worse is the stomach and acid in the throat and burning, and coughing at night..I swear this was caused by the acid reflux meds they put me on. I have been off them for a couple months, and the burning had ceased..as well as the acid..They tried IBS drugs for me - slowed digestion...also made me feel like a zombie!! My latest diagnosis has come after months of trying to get pregnant. They say I have Polycystic Ovarian Syndrome. For once this diagnosis may actually be legit though. I have the characteristic ring of cysts around my ovaries, and theb ad ratio hormones levels to support it. This is the most conclusive diagnosis I have ever had...You can want to pick up a book on this condition and consider having your daughter see the best endocronologist you can find in your area for a work up - just to be sure this isn't the case....It's a hard diagnosis to come by, and I know some women suffer for years until they come to it..Mine was very straight forward after the correct tests were done. I haven't settled on a treatment plan yet...but die, exercise and diet alone can improve the situation. Maybe look into getting a nutritionalist on board to. I would make your concerns known, maybe see if you health insurance have a advocate program, I think mine does..and have your Dr's communicate with eachother..It's a long, hard path, but don't give up!!
    Anonymous 42789 Replies Flag this Response
  • Thank you all for your advice. I appreciate any help I can get. It's amazing what a challenge it is getting the doctors to work together. We found a good one today and I think she is determined to figure this out. I'll keep everyone posted. Thanks again!!!
    tjcmom 3 Replies Flag this Response
  • My daughter has also been diagnosed with RND. All I had read seemed to point to a moderately quick ending problem...most of them said it could last "months". This has not been the case. It has now been about 3 years. However, it could be because the initial injury site chronically gives problems. As for it being limited to joint pain, I have not read that. Although it primarily involves joints it can be painful anywhere. My daughters tongue even hurst sometimes. It sounds like your daughter is far worse than mine so her ability to exercise is probably severly limited but exercise has been the only thing to give my daughter relief. As our Rheumatologist told us, a liesurely after dinner stroll is not enough. The heart rate needs to be elevated to the point of prespiring. Start moderately but continue adding time until as much as 6 hours of exercise has been completed, depending on your condition. Good luck in your search for an answer. My prayers are with you.
    Anonymous 42789 Replies Flag this Response
  • Before I read through everything, I thought of ovarian cysts. And I still think that might be some of the problem. PCOS? Has she been to a gynecologist?
    rad-skw 1605 Replies Flag this Response
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