Does this sound like upper Crohn's? UPDATE
I'm so glad to have found this forum. My DD8 started having unrelenting nausea about five months. Every second she feels nausea, which has intensified, and interestingly, been unresponsive to IV Compazine. With the nausea, she complained of joint discomfort and eye pain. Her ped. found her joints flexible, though, with no signs of arthritis.
The joint discomfort in both hips and shoulders turned into constant discomfort with intermittent pain along with intermittent pain in her knee and elbow. When her joints were initially examined in Aug. and Sept. by a ped, she was flexible and supple with no stiffness. Now, the PT is saying she's very inflexible with greatly reduced range of motion. She cannot lift her leg to a 45 degree angle without pain. He's saying my historically mildly hypotonic child has Hypertonia.
The eye pain was short-lived initially, occurring intermittently only for about 3 weeks, but after about 4 months of nausea and joint discomfort, turned into intermittent eye pain almost daily during months 4 and 5. One point, I noted that her blood vessels on the upper white of her eye were markedly inflamed and red (compared to her other eye). She also started having double vision and blurry vision several times a day. (She does have strabismus for which she has only required monitoring, and in a phone call, her opthalm. said fatigue and illness could cause her to have trouble focusing her eyes, resulting in double vision.
She started having very severe headaches that became 24/7 during month 4. They became so severe we had to go to the ER multiple times for pain relief. The neurologist said they are NOT migraines, though several ER doctors were confident that the headaches were. The CT scan was normal, repeated neuro exams were normal, and her intracranial pressure seemed fine on the scan. The headaches did respond to giving her 7-up to help hydration and PT.
Month 4 she also developed abdominal pain. She had a lot of upper right abdomen pain and pain above her belly button. Later, this pain seemed to be more lower right, left, and mid-abdomen. She also complains frequently of pain at the base of her sternum.
Her generally stable asthma has deteriorated by about 10% in six months, and she complained a lot of rib pain and lung pain. This is the first time since her asthma was newly diagnosed as an infant that we've had such an occurrence.
She also developed in month 4 constant lower back pain, more of the sacral area.
For the first time ever, she has developed a slew of muscle-skeletal injuries. (Very active, she never injured before all this.) Now, she injured her back, she injured her Achilles tendon, then her plantar fascia, then her hamstring, then her knee. She also complains of pain at her non-dominant hand's thumb joint. I had read that some kids with IBD get a type of arthritis that causes inflammation in the joints, and most of these sites of injuries are almost a complete checklist of the areas frequently listed as problems with this IBD-related arthritis.
We see a GI for the first time in a few days. Her allergist thinks we may need to consider eosinophilic disorders because she has multiple food allergies. I would welcome, though, any thoughts on whether these symptoms sound like they may signal Crohn's or another IBD. Her blood work to date has been fine. She has not shown slowed growth.
Thank you in advance for any thoughts or suggestions!
I'm so glad to have found this forum. My DD8 started having unrelenting nausea about five months. Every second she feels nausea, which has intensified, and interestingly, been unresponsive to IV Compazine. With the nausea, she complained of joint discomfort and eye pain. Her ped. found her joints flexible, though, with no signs of arthritis.
The joint discomfort in both hips and shoulders turned into constant discomfort with intermittent pain along with intermittent pain in her knee and elbow. When her joints were initially examined in Aug. and Sept. by a ped, she was flexible and supple with no stiffness. Now, the PT is saying she's very inflexible with greatly reduced range of motion. She cannot lift her leg to a 45 degree angle without pain. He's saying my historically mildly hypotonic child has Hypertonia.
The eye pain was short-lived initially, occurring intermittently only for about 3 weeks, but after about 4 months of nausea and joint discomfort, turned into intermittent eye pain almost daily during months 4 and 5. One point, I noted that her blood vessels on the upper white of her eye were markedly inflamed and red (compared to her other eye). She also started having double vision and blurry vision several times a day. (She does have strabismus for which she has only required monitoring, and in a phone call, her opthalm. said fatigue and illness could cause her to have trouble focusing her eyes, resulting in double vision.
She started having very severe headaches that became 24/7 during month 4. They became so severe we had to go to the ER multiple times for pain relief. The neurologist said they are NOT migraines, though several ER doctors were confident that the headaches were. The CT scan was normal, repeated neuro exams were normal, and her intracranial pressure seemed fine on the scan. The headaches did respond to giving her 7-up to help hydration and PT.
Month 4 she also developed abdominal pain. She had a lot of upper right abdomen pain and pain above her belly button. Later, this pain seemed to be more lower right, left, and mid-abdomen. She also complains frequently of pain at the base of her sternum.
Her generally stable asthma has deteriorated by about 10% in six months, and she complained a lot of rib pain and lung pain. This is the first time since her asthma was newly diagnosed as an infant that we've had such an occurrence.
She also developed in month 4 constant lower back pain, more of the sacral area.
For the first time ever, she has developed a slew of muscle-skeletal injuries. (Very active, she never injured before all this.) Now, she injured her back, she injured her Achilles tendon, then her plantar fascia, then her hamstring, then her knee. She also complains of pain at her non-dominant hand's thumb joint. I had read that some kids with IBD get a type of arthritis that causes inflammation in the joints, and most of these sites of injuries are almost a complete checklist of the areas frequently listed as problems with this IBD-related arthritis.
We see a GI for the first time in a few days. Her allergist thinks we may need to consider eosinophilic disorders because she has multiple food allergies. I would welcome, though, any thoughts on whether these symptoms sound like they may signal Crohn's or another IBD. Her blood work to date has been fine. She has not shown slowed growth.
Thank you in advance for any thoughts or suggestions!
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Thank you for the invitation. I've been so touched and moved by the compassion and warmth of the parents here. The struggle for a diagnosis, a child who is ill, a child who is medically complicated, all resonant strongly with me. I wish none of us were in that situation, but the warmth and compassion and encouragement of the parents here who are in that situation is, simply put, profound. 
