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New to the forum - Confused and worried about my daughter

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
 

DJW

Forum Monitor
Hi and welcome.

I'm sorry your little one is sick. I find it hard to read. I can't imagin how difficult it is to live it.
We've got great parents here. They will be along.

Sending you both my support.
 

Catherine

Moderator
Sorry your little one is sick.

Could you please tell us what country your in as will help in knowing who to page for assistance.

I am going to guess your in Australia, as your mentioned a AU 10c. Each of our of states have a slightly different medical system so the state would help.

What testing have you had done?
 
I would check out the parents section and ask a lot of questions.
My words of advice is don't give up and keep pushing until she gets help.
My DD suffered for years. 2 years of sleepless nights.
Just know your not crazy and she deserves answers.

Oh, my dd has the same skin issues. What products are you using to heal it?

I will tag in cre who also has a young one.
 
My heart goes out to your little one and you. As Farm wife has said keep pushing until you get answers. We had to beg our PCP (he was our 3rd opinion in 3 months) to send us somewhere else. This after he had prescribed many antibiotics and treatments for what he thought was several different infections as sounds similar to your experience. We saw a pediatric specialist of infectious disease. He didn't diagnose our guy but knew that all these other "infections" weren't separate but did involve one disease and sent us elsewhere immediately and then D got diagnosed. My husband and I sat down and with every detail and date we could and wrote out a timeline with symptoms, medicines and diagnosis to the coordinating day. This I think was very helpful to the specialists that we saw. I also took pictures almost daily of D's sores, ulcers, abscesses, rashes and anything else not normal. I think this is very helpful because it is much harder to explain what something looks like when you can just pull up a picture.

Have you expressed your concerns with IBD?

Good luck in finding answers to your sweet one and again don't hold back when fighting for your child.
 
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