Would this raise a red flag?

[supernova]

Hello Parents,

Sincerest thanks in advance for considering my question.

I am a mom of two currently healthy toddler fraternal twin girls. My diagnoses are non-specific small intestinal inflammatory bowel (ulcerations consistent with either Crohns or Behcets) along with ankylosing spondylitis and congenital hyper-clotting to boot ...currently treated well with Humira and colchicine.

Our girls are our first kids. I am not certain what is 'normal' toddler-dom or possible initial presentation of something with which to be concerned.

My question for you is would the following raise a red flag (and prompt a call to the pediatrician)...?

My usually consistent great eater has recently (last week) stopped eating anything but smoothies, milk, and water...we chalked it up to teething. Today her mouth and lips started to slough skin in sheets. Personally I am used to the skin sloughing as it has happened for years. No fever for her. Nothing else.

My heart is feeling heavy. I am not sure if the skin sloughing happens at any other point in life (aside from IBD issues). And I do not want to put her through unnecessary exams and concern.

Any advice or words are greatly appreciated.

Sincere thanks,

Jessica-a mom.

 

[Johnnysmom]

Jessica,

My son has crohn's and my daughter, who does not, has sometimes exhibited some of the symptoms you have mentioned. She has had many episodes since she was about 18 months old where she gets mouth ulcers, no appetite and sometimes vomiting and tummy pain. When it first happened our Dr. always said it was just a virus. (she does not get fevers) But now that my son has been diagnosed I have been worried more about IBD. So I took her to the Pediatrician last time she had the mouth ulcers just so they could take a look and I could have on record my concerns. The Dr offered to do a Fecal cal at her next check up if I am still concerned. She is gaining weight and growing so they don't want to do a scope because it is too invasive.

I will say that toddlers can be harder to diagnose. We have one little one on the forum that is very symptomatic but normal fecal cal, bloods and scopes but abnormal biopsy.

Unfortunately I think it could be something or it could be nothing and you kind of have to keep an eye on her and wait and see. I doubt her Dr. would do anything more than a fecal cal considering her symptoms, unless she has lost weight or stopped growing.

I hope it turns out to be normal kid stuff. (((((Hugs))))))

 

[my little penguin]

Yeah that
Fecal cal is painless for a toddler ( not the parent haha)
My son has skin issues as well.
Other child had issues - we just watch closely and let the docs know

 

[CarolinAlaska]

To me it raises a red flag - are you sure this isn't a drug reaction? I think she should get checked out.

 

[Devynnsmom]

To me, yes it would raise a red flag. At the very least, I would talk to the dr or ped and start documenting everything. I hope it turns out to just be a fluke. Good luck!

 

[Sascot]

Yep, it would raise a flag for me. Neither of my kids had any skin sloughing off when teething - only red gums and little red cheeks. Can you ask for the faecal calprotectin test - at least it is painless and the poo should be easy to catch in a nappy! It would give a good indication of any inflammation in the tummy/intestines.

 

[araceli]

Hopefully is nothing. Some kids go thru faces, not wanting to eat and then eating a lot. They love some food for weeks and then hate it. But you know your babes better than anyone. Just to let you know. My son tests were all good, sed, crp, faecal, you name it. Biopsies were awful. Recently diagnosed but I have not change my signature yet. I guess I am still in denial.

 

[supernova]

You know what. I am so sorry if my question felt insensitive to anyone's experience! I thought about this a lot last night and today and I just want to send an apology.

My personal physiological experience has never been regarded as 'normal' and as a woman in her third decade of life I have long come to accept and feel OK with this. Truly! Except when it comes to parenting. This is a slow jog.

Parenting is beautifully challenging...and questions occasionally arise where I find myself at a complete loss to answer. Thanks for your responses and consideration.

I have thought about it a lot and realize that I am not worried that something might be amiss with my daughter...just that she might be or feel alone with it...that I might miss it and she will be alone.

And this is parenting.

I called the pediatricians today and missed the return call. There really is not anything they can offer to reassure and I realize this is what I asked of you. Thanks for your replies. But documenting is so important! Thanks for this as well.

 

[Devynnsmom]

Supenova, you have nothing to apologize for. This board is for questions, support, experience etc.
I am so glad you have accepted your diagnosis. Parenting is very hard, and when something like this happens (your daughters symptoms) you feel completely helpless. Your daughter is lucky to have you as her mommy. I hope she does not have any kind of IBD. (((hugs))))

 

[crohnsinct]

Wow! I read your original post 3 times and can't find anything you need to apologize for.

I am sorry for your diagnosis. Sounds like you are dealing with a lot.

As you know IBD symptoms can also be the symptoms of a lot of other things and could also be nothing. Your twins are young. No doc would fault you for calling and asking. Plus like others say then you have it on record should anything esle happen in the future you will get quicker action. This will save you a lot of heart ache and guilt later. Trust me...I chalked up plenty of symptoms to other things only to have my daughter in the hospital with severe Crohns. I would rather annoy a doc with a call than deal with mommy guilt any day!