Discussions By Condition: I cannot get a diagnosis.

Severe Constant Stomach Cramps - 16 Yr Old Female

Posted In: I cannot get a diagnosis. 56 Replies
  • Posted By: ParentOfSickKid
  • May 9, 2008
  • 02:28 AM

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
Constipation
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):
Abdominal sonogram
Numerous stomach x-rays: shows constipation
Cat scan of stomach and pelvis
Colonoscopy
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
Crohn's disease
Celiac
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.
Lumbar x-ray
Pernicious anemia
O&P parasite test
Colitis
Heavy metal test
Food sensitivities
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.

Thanks.

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56 Replies:

  • I have a few more things to add. Hopefully some of these may provide a clue.Additional current symptoms:Sustained colonus (after meeting with the neurologist this does not seem to be related but we have a few more neurological tests to confirm)She seems to have an itch in her throat and has to clear it to satisfy the itch.Painless swelling at the base of her back (started about 3 weeks ago, doctors have no idea)Additional prior symptoms:A week after leaving hospital she started experiencing sharp, jabbing pains in her rectum. These lasted two weeks but have since subsided but now she has a constant pain in her rectum.After eating she would occassionally have food come back up into her throat, as if she had vomited.Additional tests - both negative:MSMonoAdditional meds:Luvox: 200mg daily for OCD but has recently reduced to 100mg daily.Was on Yasmin birth control since May 2007 to try to help with cramping. She has recently stopped using this med.
    ParentOfSickKid 24 Replies Flag this Response
  • 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 headacheConstant rectal sensitivity and pain but severe during/after defecation (no roids or fissures diagnosed). Using topical lidocaine for painConstipationExtreme difficulty defecating but this may be due to a stretched colon from severe constipationBloating (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 touchInsomnia has increased in last two monthsOccasional tingling in extremities, arms and legs fall asleep too easilyRecent (within the last week) sensitivity to lightRecent 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 headRashes (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):Abdominal sonogramNumerous stomach x-rays: shows constipationCat scan of stomach and pelvisColonoscopyUpper 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 visitHershbong (spelling?) diseaseCrohn's diseaseCeliacGastric empty scanBrain 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.Lumbar x-rayPernicious anemiaO&P parasite testColitisHeavy metal testFood sensitivitiesInflammable 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 stoolsDoctors do not think this is IBS but if it is they say it's the worst case they've ever seenI'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.Thanks.First off,I wish the best of luck to you and your daughter. There are several things that have ran through my mind for these symptoms.A Few questions:1. Is your daughter sexually active?2. Has she been exposed to anything that could be causing this (toxins, MRSA or VRE)3. Family Medical History?
    Adriesse07 41 Replies Flag this Response
  • Thanks for the reply.Answers to your questions:Is your daughter sexually active? No. Has she been exposed to anything that could be causing this (toxins, MRSA or VRE). Good point! She could have been - she had volunteered at our local hospital for two years, 3 hours a week but stopped working there in December 2007. I'm thinking all of these symptoms started after she started at the hospital but that could also be a coincidence. Family Medical History? Auto immune disorder, colon cancer, colitis. She has been checked for all of these and all were negative.
    ParentOfSickKid 24 Replies Flag this Response
  • I also just thought of the fact that your daughter has a pineal cyst. As quoted from http://www.cigna.com/healthinfo/nord1146.html "Larger pineal cysts are rare findings that may cause a variety of symptoms (symptomatic). Symptoms may include headaches, increased pressure on the brain because of accumulation of excessive cerebrospinal fluid (hydrocephalus), and vision abnormalities. Large symptomatic pineal cysts may potentially cause serious conditions such as seizures and loss of consciousness. The exact cause of symptomatic pineal cysts is unknown."Question 1: Do you know the size in diameter of this pineal cyst?Question 2: What age did your daughter go through puberty (Sometimes some of the symptoms she is having can be caused from precacious puberty-that is puberty before age 9)
    Adriesse07 41 Replies Flag this Response
  • I do not think your daughter has MRSA. Doing a follow-up on what the signs and symptoms are of MRSA, she doesnt show similarities. However, VRE she shows several similaritiesList of symptoms of Vancomycin resistant enterococcal bacteremia: The list of signs and symptoms mentioned in various sources for Vancomycin resistant enterococcal bacteremia includes the 22 symptoms listed below: FeverTachypnoeaProlonged capillary refillHypothermiaTachycardiaHypotensionDiarrhoeaCool extremitiesHypoxemiaClammy extremitiesShortness of breathDiaphoresisNauseaVomitingAbdominal painComaRashDeliriumDysuriaAbdominal tendernessFlank painConfusion
    Adriesse07 41 Replies Flag this Response
  • Has she ever been checked for any of these autoimmune diseases?Lupus, or Hashimoto's disease?
    Adriesse07 41 Replies Flag this Response
  • Answers to your questions:Question 1: Do you know the size in diameter of this pineal cyst? Less than 1 cm, the neurologist was not concerned with this but I have read about pineal cysts causing problems. Question 2: What age did your daughter go through puberty (Sometimes some of the symptoms she is having can be caused from precacious puberty-that is puberty before age 9). Age 12 so this is probably not the problem.Thanks.
    ParentOfSickKid 24 Replies Flag this Response
  • Luvox, the medication she has been taking for some time now could also be the cause for some of her symptoms. Has anyone ever tested her for liver enzymes or proteins to see where her levels were with this drug?Symptoms of Luvox:Headache Asthenia Abdominal Pain DIGESTIVE Nausea Diarrhea Vomiting Anorexia Dyspepsia NERVOUS SYSTEM InsomniaSomnolence Nervousness Agitation Dizziness Anxiety Dry Mouth
    Adriesse07 41 Replies Flag this Response
  • Regarding VRE, could she have picked that up while working at the hospital and it's still in her system after all these months? She has been tested for Lupus and Hashimoto's disease and both tests came back negative. I have to add them to my list.
    ParentOfSickKid 24 Replies Flag this Response
  • Another thing.Since these symptoms are worsening, I recommend taking her back to the doctor (Neurologist and Dermatologist) to get the neurological problems looked at (the blurred vision and black outs) and get a head CT and MRI. Have him or her give you their opinion. Have the dermatologist look at the back lesion and have them give you their opinion.Has anyone ever considered spinal bifida? Just a thought because of the back lesion and neurological problems.
    Adriesse07 41 Replies Flag this Response
  • Regarding VRE, could she have picked that up while working at the hospital and it's still in her system after all these months? She has been tested for Lupus and Hashimoto's disease and both tests came back negative. I have to add them to my list.VRE lives in hospitals. Why? because the hospital and doctors office is where people go who are sick and have weakened immune systems. VRE loves the environment of someone who has a weakened immune system. She defiantly could have picked it up at the hospital that she worked in. VRE does not go away. It lives in you and try's to mutate itself. In doing so, people who have VRE often get very ill and become worst. There are no drugs that cure this super-bug. If she caught VRE from the hospital and it is in her, it will stay in her system her whole life. It will continue to affect her.Not sure how up to date this document is but check it out and take a look:http://www.gentlebirth.org/vre/vremain.html
    Adriesse07 41 Replies Flag this Response
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  • Regarding Luvox, we're aware the side effects of the drug and are working to wean her from it. She was taking it for about 2.5 years before these symptoms started and it never caused problems before. She's already had her dosage cut in half in the last week and no OCD symptoms have returned.I know she had her liver tested annually because of the Luvox and the tests were always normal. I have to follow up with a doctor about the liver enzyme and protein levels though. As far as I know now they were always OK.Thanks for the help Adriesse07 - you're asking better questions and providing better clues than most of our doctors.
    ParentOfSickKid 24 Replies Flag this Response
  • Regarding Luvox, we're aware the side effects of the drug and are working to wean her from it. She was taking it for about 2.5 years before these symptoms started and it never caused problems before. She's already had her dosage cut in half in the last week and no OCD symptoms have returned.I know she had her liver tested annually because of the Luvox and the tests were always normal. I have to follow up with a doctor about the liver enzyme and protein levels though. As far as I know now they were always OK.Thanks for the help Adriesse07 - you're asking better questions and providing better clues than most of our doctors.Feel free to call me April. A=April Driesse=My last name 07=year i graduated from med school
    Adriesse07 41 Replies Flag this Response
  • Regarding Luvox, we're aware the side effects of the drug and are working to wean her from it. She was taking it for about 2.5 years before these symptoms started and it never caused problems before. She's already had her dosage cut in half in the last week and no OCD symptoms have returned.I know she had her liver tested annually because of the Luvox and the tests were always normal. I have to follow up with a doctor about the liver enzyme and protein levels though. As far as I know now they were always OK.Thanks for the help Adriesse07 - you're asking better questions and providing better clues than most of our doctors.Research is my specialty
    Adriesse07 41 Replies Flag this Response
  • Another thing.Since these symptoms are worsening, I recommend taking her back to the doctor (Neurologist and Dermatologist) to get the neurological problems looked at (the blurred vision and black outs) and get a head CT and MRI. Have him or her give you their opinion. Have the dermatologist look at the back lesion and have them give you their opinion.Has anyone ever considered spinal bifida? Just a thought because of the back lesion and neurological problems.We just met with the neurologist on Wednesday to discuss a brain MRI and EEG taken the week before. He actually did not have an opinion about the vision and black outs. We have an appointment with another neurologist next week to review the tests again. According to this doctor the temporal lobe spot could be the cause of the stomach cramping (abdominal epilepsy) but since the cramping was constant it seemed to rule that out. He did prescribe anti-seizure meds to see that that helps (it's hasn't after two days). Everything else in the head and the EEG were fine.I didn't think about the dermatologist for the back swelling (not really a lesion but I'm not familiar with how the term is applied) but will explore that on Monday. She has gotten scabs on her head too since this all started and a dermatologist should have an opinion about that.
    ParentOfSickKid 24 Replies Flag this Response
  • Has anyone ever considered spinal bifida? Just a thought because of the back lesion and neurological problems.Thanks April.I need to check into spinal bifida. I have in my notes from Wednesday's neurologist meeting that we need to have an xray to test for spinal bifida.
    ParentOfSickKid 24 Replies Flag this Response
  • http://www.kidshealth.org/parent/system/ill/spina_bifida.htmlhttp://www.asbha.org.au/Occulta.htmAs quoted from the website"Children with spina bifida often have problems with bowel and bladder control, and some may have attention deficit hyperactivity disorder (ADHD) or other learning difficulties, such as hand-eye coordination problems"Symptoms of Spina Bifida Babies who are born with spina bifida occulta often have no outward signs or symptoms. The spinal cord does not protrude through the skin, although a patch of hair, a birthmark, or a dimple may be present on the skin over the lower spine. But in other forms of the disease, there are obvious signs. In other wards, if your child has never showed any symptoms before and suddenly had them, she may have Spina Bifida Occulta. (which would be my best guess)Some of the other things which can occur around this site and affect a person’s functioning with this type of spina bifida are:To avoid confusion, the term often used to for spina bifida occulta with these associated problems is occult spinal dysraphism (OSD). In addition to these structures which are usually hidden from view, there are a number of signs which may appear on the skin (cutaneous signatures) and give a clue to the underlying problems with the central nervous system. These signs can appear on their own but quite often they appear in combination. Some common ones are: An abnormal hair growth over the thoracic or lumbar spine A dermal sinus or small tract which leads from the skin surface down through to the spinal cord. Blind sinuses or pits which do not lead into the spine are common in newborns especially in the crease of the bottom and do not indicate underlying problems. A fatty mass (lipoma) just under the skin A rudimentary tail A capillary haemangioma (stork bite) over the lower spine. Haemangioma over the back of the head are more common and do not indicate underlying problems. Symptoms: Weakness or sensory loss in the legs, feet Leg length difference Foot deformity Problems with gait (walking) Bowel or bladder infection or incontinence Constipation Scoliosis (sideways curvature of the spine) Back pain Continence problems Back pain Back pain may be a significant problem for people with OSD. It is sometimes present even in young children. It may be difficult or impossible to say that OSD is actually causing the pain. Back pain is very common in our society. Many people suffer back pain for a great variety of reasons and those reasons may be present with or without OSD. For a person experiencing back pain it is appropriate to look at what other factors may be influencing the pain. The fact that a person has OSD cannot be changed, but many other factors can. It is important to be aware of good back care eg correct lifting methods, good posture, appropriate exercise etc. A physiotherapist can give advice in these areas. Some of the symptoms of a tethered spinal cord are: Increased weakness or loss of muscle function Increased muscle tone Deterioration in gait Worsening of bladder function Progressing scoliosis Back pain All of these symptoms can have other causes and should be investigated. The spinal cord can be tethered with no symptoms. If it is warranted, an operation can be performed by a neurosurgeon to ‘detether’ the spinal cord. This procedure will usually not restore lost functioning, but in most cases it is able to halt the worsening of symptoms. Corrective surgeryOSD develops during the first month of pregnancy and cannot be corrected. However, surgery can assist with some aspects. Apart from spinal cord detethering, surgical procedures can remove fat or fibrous tissues which are affecting the functioning of the spinal cord, can drain syrinxes or cysts in the spinal canal to reduce pressure on the spinal cord can be performed on the legs or feet to improve their functioning
    Adriesse07 41 Replies Flag this Response
  • Thanks for the spinal bifida info April - we're definitely going to check into that. She just had a lumbar spine x-ray on Wednesday to check for ovarian cysts (it was negative), would that show spinal bifida?We're also interested in the endometriosis angle especially since her pain has increased substantially since ending the Yasmin about three weeks ago. She visited a gynecologist about a month ago to check for endometriosis but the doctor only performed a verbal test and determined she didn't have endometriosis. I'm thinking a more thorough exam and maybe even a laporoscopy may be necessary. Can endometriosis result in extreme, constant cramping in a circular pattern around the navel?
    ParentOfSickKid 24 Replies Flag this Response
  • http://upload.wikimedia.org/wikipedia/commons/e/e5/IMG_0746a.jpgPhoto is of a female with spina bifida in S-1It depends on the area they did look for Spina Bifida.I am attaching a photo of a 16 year old who has Spina Bifida I mentioned earlier. It may help.Also with Endometriosis-you walked into the right person. I have endometriosis and polycystic ovarian syndrome.Endometriosis symptoms are as follows:Pain may be felt: before/during/after menstruation during ovulation in the bowel during menstruation when passing urine during or after sexual intercourse in the lower back regionOther symptoms may include: diarrhoea or constipation (in particular in connection with menstruation) abdominal bloating (again, in connection with menstruation) heavy or irregular bleeding fatigueThe symptoms of PCOS include:Irregular or no menstrual periodsAcneObesity, andExcess hair growthOther signs and symptoms of PCOS include:weight gain,acne,oily skin,dandruff,infertility,skin discolorations,high cholesterol levels,elevated blood pressure, andabnormal hair growth and distribution.Hope this helps
    Adriesse07 41 Replies Flag this Response
  • As for the Yasmin aspecthere is a blog you can read. It may help. Its about people with negative Yasmin Experienceshttp://www.medications.com/effect/view/9620
    Adriesse07 41 Replies Flag this Response
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