Hi all, I don't know how to make a long story short but I will try. My little man(and i say little because he has growth issues - born 8 weeks prem but 25 % for gestation was always 3rd % for weight, 4 % for height until he was 3yrs old, now after a year of zero growth he's 1 % weight and 2 % for height) has suffered recurrent bouts of diarrhea since before his 1st birthday, but we were told multiple times "virus", "gastritis" and with my reluctance to waste Doctors time I just did my best to manage his symptoms when they occurred - he would have a bout almost monthly. Fast forward to October last year he had a major "viral Illness"- (I loathe the words viral illness now!!) which was 2 weeks high fever 2 weeks low fever, "viral conjunctivitus", bleeding swollen gums and arthritis. We are now in limbo with an undiagnosed arthritis, he was diagnosed with Uveitis a month after his "viral illness", and his GI issues slipped off the radar, until his ped mentioned that his growth cannot be due to malabsorption because Tommy doesn't suffer from diarrhea?? With a big lump in my throat I told him about his long term diarrhea I just assumed was normal for him and which he had actually had when in hospital with "viral illness" and his diarrhea had been tested even. So his ped is now querying IBD we have had a fecal occult and calprotectin test done and awaiting results on those. His symptoms for the longest time have been - of course the recurrent diarrhea, painful bowel movements even when motions are soft, mucousy stools and daily nausea and pain just below the belly button. And I am now riddled with guilt that I have largely ignored his symptoms but he is such a tough little man that he very rarely complains of much, I hate to think that he is just so accustomed to pain that for him it is normal :frown: does anyone have littlies that have had similar presentation of IBD, any advice is greatly appreciated
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Undiagnosed 5 year old boy
- Thread starter tommysmum204
- Start date
- Location
- London, UK
Hi tommysmum,
So sorry to hear of everything your little guy has been through and is going through with this.
Something I've learnt over my time with Crohn's (19 years) is that there are so many different presentations of Crohn's disease - from those who present with only one symptom out of pain, fatigue, fever, weight loss, lack of growth (in children), the classic diarrhea or the atypical constipation to the patients who have a host of symptoms.
From what you describe, this could be Crohns - and of course it could be something else. Regardless of the diagnosis, this forum is a very warm and inclusive community and you are very welcome here.
We have an amazing parents' subforum here full of IBD parents with a wealth of experience and knowledge. I know that active members Pilgrim, Farmwife, My Little Penguin and Izzi'sMom have children of a similar age - and I'm sure there are many more.
A Crohn's diagnosis comes with a side of guilt for many of us and our parents. I think the best thing that we can do is to let it go. You clearly love your little boy and have done your best to fight for him and you're going to be right there with him through all of this helping him to get well. You shouldn't feel guilty and guilt only distracts from the task at hand - and from the good times that you can hopefully be enjoying with your little boy in amongst all the dealing with illness.
Do keep posting and let us know how things are going. :ghug:
So sorry to hear of everything your little guy has been through and is going through with this.
Something I've learnt over my time with Crohn's (19 years) is that there are so many different presentations of Crohn's disease - from those who present with only one symptom out of pain, fatigue, fever, weight loss, lack of growth (in children), the classic diarrhea or the atypical constipation to the patients who have a host of symptoms.
From what you describe, this could be Crohns - and of course it could be something else. Regardless of the diagnosis, this forum is a very warm and inclusive community and you are very welcome here.
We have an amazing parents' subforum here full of IBD parents with a wealth of experience and knowledge. I know that active members Pilgrim, Farmwife, My Little Penguin and Izzi'sMom have children of a similar age - and I'm sure there are many more.
A Crohn's diagnosis comes with a side of guilt for many of us and our parents. I think the best thing that we can do is to let it go. You clearly love your little boy and have done your best to fight for him and you're going to be right there with him through all of this helping him to get well. You shouldn't feel guilty and guilt only distracts from the task at hand - and from the good times that you can hopefully be enjoying with your little boy in amongst all the dealing with illness.
Do keep posting and let us know how things are going. :ghug:
- Location
- Montréal, Canada
hi I am so sorry about your little man. I am hoping you could get soon a consultation with a gastro-enterologist specialist even if the calprotectine test comes unconclusive. Uveitis and arthritis can both be extra-intestinal manisfestations of inflammatory bowel disease.
It does sound very much like IBD. My little one was diagnosed at the age of three but had a very different presentation. Her disease is mainly situated in the large bowel, so we didn't deal with the growth or weight issues at all. Her healthy appearance meant it took some time for everyone to realize how sick she was.
I just want to reassure you that once you reach a diagnosis, things seem to be a little better simply because you know what you are dealing with. Please come and visit us in the Parent's Forum with any question or subject. Some parent's there have seen it all, so there is support for you.
It's hard to not feel guilty. I know I ignored a lot of little signs I can remember in retrospect. I guess on the one hand no one wants to be that over reactive parent. On the other hand you get your child to the doctor and sometimes you get a ridiculous misdiagnosis. The problem is that the doctors have to work through the possibilities, too. So, they start from the most basic probability and go from there to the more rare possibilities. It all takes time. None of that is your fault.
In those early days when things were bad and we were waiting for a diagnosis, I tried to make her laugh and we did whatever she had the energy for... even if it was just cuddling in the sun and watching the other kids play. One of the doctor's "prescribed" that she give me lots of hugs because it's hard for a mommy to have to worry about her kid. She still keeps that up and it does us both good!
Thinking of you during this tough time.
I just want to reassure you that once you reach a diagnosis, things seem to be a little better simply because you know what you are dealing with. Please come and visit us in the Parent's Forum with any question or subject. Some parent's there have seen it all, so there is support for you.
It's hard to not feel guilty. I know I ignored a lot of little signs I can remember in retrospect. I guess on the one hand no one wants to be that over reactive parent. On the other hand you get your child to the doctor and sometimes you get a ridiculous misdiagnosis. The problem is that the doctors have to work through the possibilities, too. So, they start from the most basic probability and go from there to the more rare possibilities. It all takes time. None of that is your fault.
In those early days when things were bad and we were waiting for a diagnosis, I tried to make her laugh and we did whatever she had the energy for... even if it was just cuddling in the sun and watching the other kids play. One of the doctor's "prescribed" that she give me lots of hugs because it's hard for a mommy to have to worry about her kid. She still keeps that up and it does us both good!
Thinking of you during this tough time.