I'm desperately seeking clues about what can be wrong with my 16 year old daughter. For the last two months, she has been experiencing extreme, constant stomach cramping, severe constant headaches, and a constant rectal pain, especially severe during/after defecation. We've seen a number of gastroenterologists, a neurologist, a rheumatologist, a rectal specialist, and general practitioners but none have an idea about what is wrong.
She has been suffering from severe constipation since January and has been out of school since Feb. 11th. She visited the ER twice in Feb. with intense pain from the constipation and was in the hospital for 3 days in early March to clean her out (via enemas and a Go Lightly drip).
Before January she was typically out of school 4 - 7 days per month due to cramping or nausea. If she vomited she would go back to bed for the entire day with flu-like symptoms. We noticed over the summer of 2007 that she wasn't sick too often so thought school anxiety could be the cause of some of her problems (she suffers from OCD but meds, Luvox, have practically cured her).
In the past 5 days, we have noticed the cramping is getting progressively worse. She wanted to avoid using Vicodin (causes constipation) earlier but now needs it daily due to the intense pain. She has been taking Miralax to help with bowel movements. She is basically bed ridden now. She has insomnia but interestingly when she eventually does fall asleep she can sleep for 8 or more hours (the pain does not seem to wake her).
Her current symptoms:
Severe, constant stomach cramping in a circle around the belly button. Now it hurts to even move.
Severe, constant headache
Constant rectal sensitivity and pain but severe during/after defecation (no roids or fissures diagnosed). Using topical lidocaine for pain
Extreme difficulty defecating but this may be due to a stretched colon from severe constipation
Bloating (we went through a cleanse a few days ago and after she was cleaned out her stomach was still bloated, hard and distended. MRIs have shown her stomach and colon filled with air as if she's swallowing air. Her stomach makes tremendous noises at times.
Area where stomach cramping occurs is very sensitive to the touch
Insomnia has increased in last two months
Occasional tingling in extremities, arms and legs fall asleep too easily
Recent (within the last week) sensitivity to light
Recent sensitivity to motion (e.g., car sickness, never had that before)
Has had dimmed vision about 2 - 3 times per month where she practically blacks out temporarily. Not necessarily related to standing up suddenly.Symptoms early on but not lately:
Vomiting, nausea (we think recent exclusion of foods she's sensitive to have stopped these although taking Magnesium Citrate or Phopos soda seems to always cause vomiting)
Chest pain around the esphogus but had it where it spread out over her entire chest (this occurred a few times and led to an ER visit where nothing was found)
Canker sores (she rarely if ever had these before all of this)
Scabs on head
Rashes (almost looked like chicken pox on her chest)
Sweating (yeast-free diet seemed to cause this for about 3 days during the yeast die-off)She's had the following tests (all negative except where noted):
Numerous stomach x-rays: shows constipation
Cat scan of stomach and pelvis
Upper endoscopy: showed a slight inflammation in the stomach and troughs in the esophagus wall, nothing prescribed for either of these.
Flexible sigmoidoscopy (no hemerhoids or fissures found)
Anal manometry: Basically her colon's working fine but she's lost some sensation to push due to numerous enemas in her hospital visit
Hershbong (spelling?) disease
Gastric empty scan
Brain MRI: Showed a spot in temporal lobe that could cause abdominal seizures but neurologist wasn't convinced this was a problem because her cramping is constant. Also showed a cyst in the Pineal gland that is supposedly not a problem.
Spinal MRI (thorax, lumbar) - Negative but showed some suspicious asymmetric mass that could be ovary cyst but a subsequent lumbar x-ray did not show anything.
O&P parasite test
Heavy metal test
Inflammable bowel diseaseTreatments:
Miralax 3 or 4 times daily
Vicodin for the pain (she resisted taking this but has had to on a daily basis in the last 5 days)
Yeast-free detox diet (we're 3 weeks into this now)
Vitamin regiment (vitamin C, B?, Omega 3, Magnesium, digestive enzyme)
Gluten-free diet (we learned she was sensitive to eggs, dairy, wheat, bananas, cranberries, and spinach)
Just started taking a med for thyroid (she tested low on a thyroid test)
Just started taking an anti-seizure med (the thinking is maybe the spot in the temporal lobe could be causing seizures)
Luvox: 200mg daily for OCDHealth Background:
Has been taking Luvox for OCD for the past 4 years. This med has worked wonders and she barely shows any OCD symptoms.
She was given Reglan in her first ER visit in Feb. but this caused an immediate dystonic reaction. It took a good week before that was out of her system.Other info/clues:
She seems to have a slow digestive system. Colonoscopy prep meds like Magnesium Citrate do not seem to work at all (Phospho Soda does work)
She has had no blood in her stools
Doctors do not think this is IBS but if it is they say it's the worst case they've ever seen
I've recently brought up the idea of Lyme disease but 3 doctors have told me this is not Lyme disease (she shows 20 - 25 symptoms of the disease)I'd appreciate any ideas.
Recognize the risks associated with Crohn’s disease.
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