Hi guys, I have been a reader of forums since my youngest was a few months old, and this is my first post. My 3.5 year old little girl, remains undiagnosed, and my instincts have been telling me for about 3 months now that she has pedi Crohns. I would love to get some feedback from anyone out there that knows more and possibly can tell me if I am crazy.
At 4 months old my baby stopped growing, putting on less than 1kg between 4 months - 12 months, so by 12 months she no longer registered on any growth charts. She has been an outpatient of the Children's hospitals since this time, under the care of paeds, endocrinology and for a short space Gastro.
It seems every time we see a new specialist they are convinced of a diagnosis until tests prove otherwise and we are once again left in the dark (with the Gastro she was tested for coeliac disease).
At the moment, at 3.5yrs, she sits at 7% for her height and 11% weight (best results since 4 months of age). She suffers daily cramping, 2-3 x per day. Diarrhoea anywhere up to 12+ x per week. Her Iron levels were first tested 16 months ago and were low and remain low, so she is now on supplements for anemia.
The poor darling has had some severe skin issues throughout her life, although not something we battle with consistently when something flares up, it's left with no explanation/medication, the last being about 10 individual open wound like sores over her body and face about the size of an AU 10c piece, that weeped. On her elbow a number of them congregated and spread to a severe dermatitis like weeping rash covering about 1/6 of her arm.
When she gets sick, she gets very sick, last bout of Gastro lasted 3 nights and 4 days and for the most part had diarrhoea every 3-4 minutes.
Unfortunately we are yet to have a night where she sleeps through, often waking (or half waking) with abdomen pain.
The joint pain symptom that I came across really hit home too as at least 4-5 times per week she wakes up complaining of pain, elbow, knee, hip and groin. When this happens she consistently tells me of the pain anywhere from 1 -3 days and then it just stops, never abrasions or anything to help explain.
I'm sorry to list so much (I've actually not even touched on most). I am just really struggling to continually to watch her suffer and still have no answer, still have no knowledge on what I can do to help her, if anyone that has been through something similar can shed any light, I would be eternally grateful xxx
At 4 months old my baby stopped growing, putting on less than 1kg between 4 months - 12 months, so by 12 months she no longer registered on any growth charts. She has been an outpatient of the Children's hospitals since this time, under the care of paeds, endocrinology and for a short space Gastro.
It seems every time we see a new specialist they are convinced of a diagnosis until tests prove otherwise and we are once again left in the dark (with the Gastro she was tested for coeliac disease).
At the moment, at 3.5yrs, she sits at 7% for her height and 11% weight (best results since 4 months of age). She suffers daily cramping, 2-3 x per day. Diarrhoea anywhere up to 12+ x per week. Her Iron levels were first tested 16 months ago and were low and remain low, so she is now on supplements for anemia.
The poor darling has had some severe skin issues throughout her life, although not something we battle with consistently when something flares up, it's left with no explanation/medication, the last being about 10 individual open wound like sores over her body and face about the size of an AU 10c piece, that weeped. On her elbow a number of them congregated and spread to a severe dermatitis like weeping rash covering about 1/6 of her arm.
When she gets sick, she gets very sick, last bout of Gastro lasted 3 nights and 4 days and for the most part had diarrhoea every 3-4 minutes.
Unfortunately we are yet to have a night where she sleeps through, often waking (or half waking) with abdomen pain.
The joint pain symptom that I came across really hit home too as at least 4-5 times per week she wakes up complaining of pain, elbow, knee, hip and groin. When this happens she consistently tells me of the pain anywhere from 1 -3 days and then it just stops, never abrasions or anything to help explain.
I'm sorry to list so much (I've actually not even touched on most). I am just really struggling to continually to watch her suffer and still have no answer, still have no knowledge on what I can do to help her, if anyone that has been through something similar can shed any light, I would be eternally grateful xxx
