My 5 year old daughter is currently under going tests to see if she has ibd. The only physical symptom she has is very pale and tired and had a little bit of stomach ache. Our gp did a full blood count which came back that she was very anemic, that she had inflammation markers and was deficient in various things such as protein and certain vitamins. They have so far done non invasive tests such as an ultra sound (which came back clear) and all her stool samples are fine no blood trace. They think the reason behind her anemia is due to blood loss somewhere. Has anyone else experienced same blood results and very little physical signs of ibd. The doctors are focusing on this now and arranging camera tests to see if it is that and how you prepared your child for this. She had a meckels scan last week and was absolutely distraught through out the whole thing. Any advice would be amazing!!!
Any help would be grateful
- Thread starter fph
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So sorry your little girl is going through this. My son was 8 at diagnosis and anemic too, although he had a lot of other "typical" symptoms of IBD. IBD is tricky in that it doesn't present itself the same way every time. I'm sure there will be others coming along to comment who have a similar story to your own. And there is still a possibility it could be something else too.
Scopes with biopsies should confirm a diagnosis for you. It can be stressful for little ones going in, but she will be sedated and won't feel a thing. There will be prep ahead of time to clear her colon, but that can probably be accomplished at home the day before (my son didn't have good success with the prep, so had to have an enima the morning of the scope. He wasn't fond of it :0, but it wasn't painful).
Scopes with biopsies should confirm a diagnosis for you. It can be stressful for little ones going in, but she will be sedated and won't feel a thing. There will be prep ahead of time to clear her colon, but that can probably be accomplished at home the day before (my son didn't have good success with the prep, so had to have an enima the morning of the scope. He wasn't fond of it :0, but it wasn't painful).
As a young parent, I saw an episode of Mr. Rogers where he sang a song about being honest with children and I took it to heart. "I like to be told if it's going to hurt..if it's NOT going to hurt.."
So, I've always been very honest with my children about any procedure they've had to have. Even when doctors or nurses weren't. Age appropriate details, but the truth. And that I will be right there with them, or right outside the door etc. I also give gifts for bravery, or just enduring something yucky. Gives them something to look forward too..
The worst part about being scoped is getting cleaned out. The drink tastes bad and then pooping all night isn't fun, especially if you're already not feeling great. I'd just explain what has to be done and why, in basic terms, without too much advance notice, but also add something fun to do the next day or whatever.
My son didn't show many symptoms at first. Just wasn't growing properly and seemed to have low energy. He was also anemic.
I hope everything goes smoothly for her. Good luck!!! xx
So, I've always been very honest with my children about any procedure they've had to have. Even when doctors or nurses weren't. Age appropriate details, but the truth. And that I will be right there with them, or right outside the door etc. I also give gifts for bravery, or just enduring something yucky. Gives them something to look forward too..
The worst part about being scoped is getting cleaned out. The drink tastes bad and then pooping all night isn't fun, especially if you're already not feeling great. I'd just explain what has to be done and why, in basic terms, without too much advance notice, but also add something fun to do the next day or whatever.
My son didn't show many symptoms at first. Just wasn't growing properly and seemed to have low energy. He was also anemic.
I hope everything goes smoothly for her. Good luck!!! xx
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Big hugs
Ds was dx at age 7
There are books like toliet paper flowers
Pete has crohns
And
Ibd & me
We basically told ds he would take nap and we would be there when he woke up
Our hospital lets us stay with him til he falls asleep
John's Hopkins has a good coloring book on their website
Good bear or stuffed animal to hold once she is waking up if your not back there yet
Clean out
Videos so she can stay in the bathroom
Good luck
Ds was dx at age 7
There are books like toliet paper flowers
Pete has crohns
And
Ibd & me
We basically told ds he would take nap and we would be there when he woke up
Our hospital lets us stay with him til he falls asleep
John's Hopkins has a good coloring book on their website
Good bear or stuffed animal to hold once she is waking up if your not back there yet
Clean out
Videos so she can stay in the bathroom
Good luck
Thank you so much for all your help. I'm just worried on how to explain the tests to her (doctors tend to use terminology that I barely understand let alone translate it so a 5 year old can) but I will look into those books thank you. She's starting to get scarred going to hospitals and asks on a daily basis if they will be putting needles into her. We are seeing a specialist in a few weeks as the current hospital she is being treated at doesn't have the specialist or clinic there hopefully they will be able to give us some answers soon xx
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Have you tried something like EMLA or numbing cream for needles? There is also Buzzy in the US -- not sure where you are located, but this is the link:
https://buzzyhelps.com
I agree - the prep is the hardest part. I would have plenty of books/movies for her to be entertained for that day. And take a change of clothes in the car on the way to the hospital -- just in case!!
At our children's hospital, they even put in the IV after kids are asleep, so the actual scope is pretty easy - just a nap. Not sure all children's hospitals do that though.
My daughter had barely any symptoms when she was diagnosed -- just occasional constipation and belly pain.
Good luck!
https://buzzyhelps.com
I agree - the prep is the hardest part. I would have plenty of books/movies for her to be entertained for that day. And take a change of clothes in the car on the way to the hospital -- just in case!!
At our children's hospital, they even put in the IV after kids are asleep, so the actual scope is pretty easy - just a nap. Not sure all children's hospitals do that though.
My daughter had barely any symptoms when she was diagnosed -- just occasional constipation and belly pain.
Good luck!
CarolinAlaska
Holding It Together
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I'm sorry to hear about your daughter's struggles. Does she have joint pain? I was straight forward to my daughter but tried not to give her ammunition for worry ahead of time. The Miralax clean out was not bad tasting. I switched up the fluid it was mixed in so she had a variety. It is scary. I hope they don't put the IV in until she's asleep.
We're in the UK ☺ but yes tried numbing cream already but it doesn't work on her so they said next time she has those and blood tests they are going to try a freezing spray and see if that works.
I am going to ask them if they put her to sleep before she has to have the cannula put it so at least she's calmer for it all ( and selfishly so we're calmer too it was absolutely heart breaking last time with her screams) and see what they say.
She's not had any joint pain but she does complain sometimes her legs hurt a little, not chronically though and not very often. If you looked at her you wouldn't know anything was wrong apart from she's so pale and tired, even the doctors have said that.
Thank you for the advise on the prep. So far all these bribes for tests have cost me a fortune, best keep saving for some more xxx
I am going to ask them if they put her to sleep before she has to have the cannula put it so at least she's calmer for it all ( and selfishly so we're calmer too it was absolutely heart breaking last time with her screams) and see what they say.
She's not had any joint pain but she does complain sometimes her legs hurt a little, not chronically though and not very often. If you looked at her you wouldn't know anything was wrong apart from she's so pale and tired, even the doctors have said that.
Thank you for the advise on the prep. So far all these bribes for tests have cost me a fortune, best keep saving for some more xxx
CarolinAlaska
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The reason I asked about joint pains was that joint inflammation can also cause anemia. Maybe if the IBD doesn't show up, she could be evaluated by rheumatology due to the inflammation. Has she had an MRE?
CarolinAlaska
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The MRE is an MRI with contrast of the abdomen. I will show inflammation of the intestines where the endoscopy can't reach. My daughter's GI doc ordered it at the same time as the scopes.
No she's not had a mri yet but the consultant did mention it yesterday at the appointment. Until we see the specialist in 2 weeks I'm not 100 percent on which tests they will be doing. The last few days when she's been to the toilet there has been blood in her stools. Luckily I took a picture to show the doctor so they have more of an idea of where it is as it was bright red blood so it gives them more of an idea of where the inflammation may be xx
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This sounds like how my son was pre-dx, the GI was surprised even. Scopes with biopsy is the definitive way to dx. So sorry about your daughter. Hang in there! In the meantime, you can add a comprehensive multivitamin (one with iron and trace minerals like selenium), add boost/shakes, cut out any ibuprofen use. The bright red bleeding is usually from fissures and/or fistula vs bleeding from colitis, I think.
She's on maximum dosage on iron supplements so the consultants said not to give her any multivitamins with iron in. But we have to give her double the daily recommended amount of multivitamins because it helps the medication take. What sort of shakes do you do? We where thinking about getting a blender to do smoothies for her and hide greens in there (she will eat broccoli and red meat no problem but won't eat any other greens) thank you 
xxx
xxx
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Ds was in Peptamen Jr for 5 and 1/2 years
He now drinks neocate Jr chocolate .
Both have kept his weight up over the past years
He now drinks neocate Jr chocolate .
Both have kept his weight up over the past years
CarolinAlaska
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She's on maximum dosage on iron supplements so the consultants said not to give her any multivitamins with iron in. But we have to give her double the daily recommended amount of multivitamins because it helps the medication take. What sort of shakes do you do? We where thinking about getting a blender to do smoothies for her and hide greens in there (she will eat broccoli and red meat no problem but won't eat any other greens) thank you
Taking iron with vitamin C helps with its absorption, but calcium blocks it, if I remember right.
Boost and Ensure can be obtained over the counter. They are more palatable. I'd start with those. There are veggie gummies that help give those kinds of vitamins. Raisins are good for iron too.
