Crohns in young females

[LauraJ]

My husband has crohns and we are starting to get worried our just turned 5 yr old has it, and our nearly 3 yr old. We raised concerns with our GI as our eldest suffered from chronic constipation and weird rashes. We were told there was no way she could ever have crohns as she is female, young and mixed race ( her dad is Chinese). They tried reflux meds, and on a whim we cut out gluten, which helped a great deal. But she still suffers from constipation even on PEG. She often complains of LLQ or RUQ pain. She often gets chapped lips, mouth ulcers and has a rash on the knuckles of her hands that's flares occasionally and her joints often help. She also has a rash where her butt and legs meet, that looks very much like the rash her dad had on his legs. Exec a cream has done nothing t help it. We were discharged from our local kids hospital GI clinic afetr cutting out gluten, and they keep telling us everything is excema& her holding in her poop.
We went with that diagnosis till outr second started showing similar issues. She also has yellowish stools, cries at the sight of food, refuses to eat wakes up screaming of leg pains, stomach pains. Our paediatrician is awesom, and lined up barium swallos with and without food. She has seen as respirologist as she has suspected sleep apnea, and an ENT as she has periods of regressing when eating. At one point she would only eat baby food.
Anyone have any idea how to approach this with gastros who just think we are being over reactive. We keep getting told it is normal toddler behaviour, but how can a 2 yr old turn their poop yellow? How the heck does a 5 yr old give themselves a rash and swollen knuckles?
Any ideas?

 

[SarahBear]

…They said she can't have Crohn's because she's young, female, and mixed race? I'd see a new doctor, immediately. None of those things rule out Crohn's, at all. She's not in the most common age bracket for symptom development, but that does not by any means rule it out.

Personally, I'd definitely seek a second opinion. What they told you really doesn't make any sense. I'm moving your thread into the Parents section of the forum for you, as you'll likely get more responses here.

:hug: I hope you find answers soon!

 

[Sophia]

Hi,

I have no experience with Crohns in young girls, but thought I would reply anyway. I was 25 when I got diagnosed, but as a young child (aged 3-5) I had severe constipation, and was really in a lot of pain. Mum had to come with me to the bathroom so I could hold around her neck for comfort. I don't remember what we did, but I did get rid of it, and had no such problems as I got older.

Does your daughter like prunes? There are some good desserts you can make with prunes that could maybe help her pass her stool. Also if you add malt extract to food, that can help with constipation, but I guess you have tried these things already. I guess it's important to try to go to the loo at least once a day. I know she probably doesn't want to because she knows it will be painful, but it only gets worse if she keeps it in. I have also heard of parents who have used enema to get the bowel movements going, so maybe that would be a kick start. Talk to the doctor about it. But constipation is just as bad/maybe even worse than having diarrhea, so the doctor should take you seriously here! Really sorry to hear he is ruling out Crohns just because of race and gender, I have never heard of that before. :/

I wish you good luck, and will keep my fingers crossed it is just a phase, and not a serious condition for your daughter!

All the best!

 

[my little penguin]

So sorry to hear this.
DS was 7 when dx and still has constipation. Not diarrhea.
Most of his tests were normal except did the biopsies from a scope.
Can you take them to a big Ibd center?
Ask the ode to run a fecal caloprotectin test?
It can tell if there is inflammation in the gut ( just a stool sample needed)
Has the ped tried miralax with your kiddos ?
That can really help .

 

[Farmwife]

Hi and welcome,
I was SUPER EXCITED to read that my girl can not possible have IBD.
It's like when my 4 year old (dx at 3) girl's doc said she can't have IBD because she doesn't have diarrhea.
Sadly, that turn out to be the case.
I'll tag in Polly13 and Mylittlesunshine, both also have girls under 5 when dx'ed.

May I ask why your DD has a PEG?

I second the second opinion and the FC stool test that MLP suggested. Please be warned that even these test can come back normal but it doesn't mean that it is.

Has your DD seen a rheumatologist? My girl has always had a lot of joint pain since walking. A few days ago she got dx'ed with JRA. JRA can cause rashes.

Also these kids can be prone to fungus infection. I now have both eczema (Grace has eczema and Asthma also) creams and fungus cream. My doc said if one doesn't work after so many days, then switch to the other one.

HUGS

 

[Tesscorm]

I'm so sorry you are dealing with this! I can imagine your frustration when the GI doesn't believe that IBD is possible. Also encourage you to look for a second opinion; given his comments already, even if he were to finally agree that IBD is possible, you probably wouldn't want this doctor to be responsible for future treatment!

When my son was much younger, he did have some problems with constipation. While I don't really believe it was crohns-related at the time, what helped him immediately were glycerin suppositories.

I hope you can arrange for a second opinion soon. :ghug:

 

[Jmrogers4]

Have to agree with everyone else, second opinion is needed, when my son stopped eating they immediately sent us for testing and to GI for crohns since his dad has crohns.

 

[crohnsinct]

Seriously?! Any doc who would rule out a possible diagnosis so emphatically based on demographics should not be practicing! Time for a new doc.

My non IBD daughter suffered with constipation terribly for many years. Miralax helps a lot...also most kids do not get enough water so you may want to up water intake (especially when using Miralax), exercise also helps...my daughter did swimming and it would be nice and easy on he joints.

Just fixing the constipation though I am sure will not set your mind at ease. I would ask the ped to run some blood tests and definitely the fecal calprotectin test. The FC test is very good at identifying intestinal inflammation and with those results you will most likely get a GI's attention.

You could also use a back door approach to a diagnosis. Some parents here have found it helpful to go to a rheumatologist. They often will raise the suspicion of IBD. Given the joint pain probably not a bad idea anyway.

If you are treating you daughter's pain with NSAIDs you may want to lay low on those if you are concerned she may have IBD. They complicate matters with IBD and most patients are told not to take them. I would wait until a rheumy or GI gave me the go ahead on those.

The rashes can be anything. A lot of IBD kids have skin issues. Unfortunately a good derm is hard to find. I have found through the years most derms say eczema as a catch all and prescribe steroids. Well, steroids will work on just about anything so still not proof it is eczema. My daughter has psoriasis and has it in her privates. Unfortunately our derm says there really isn't anything to use to clear the psoriasis up...well...safely anyway.

Good luck with your journey and so sorry it is proving difficult.

 

[muppet]

I just want to add to the chorus: GET A NEW DOCTOR IMMEDIATELY. Yours is a quack.

It may NOT be Crohn's, but not for any of those reasons. Run, do not walk, to a new doctor.

 

[CrohnsKidMom]

Welcome to the forum! Your daughter's symptoms sound so much like my son's-except we have no family history. Within a couple days of seeking medical attention we had a dx of Crohn's. I agree with the others-time to find a new dr. Take care!

 

[LauraJ]

Thanks everyone for your input.
DD1 has been on PEG since 18 months for chronic constipation. She has tried a high fibre diet, prunes, additional fluids etc we worked with a child dietician. Nothing worked. PEG keeps things under control. As regards to the stool withholding, we saw none of the behaviours associated with it. She would actually cry telling us she needed to go but couldn't as it was stuck.
DD2 has been on PEG since a year old. She passes baseball sized stools without it. The behaviour when eating I have never seen with any other kid. Iam a kindergarten teacher, and have looked after many little ones. It's heartbreaking to see a 2 yr old hiding and screaming at the sight of food.
A side note - both recently had croup an sweet given a single dose of prednisone, thr following 48 hrs were the best we have ever had.

We are in canada, vancouver. Unfortunately there are few choices in docs when it comes to pied specialists. Our referral for dd2 to a gi was supposed to take 6 weeks it is now7 months and counting

 

[LauraJ]

Both girls are on a bowel management scheme they go to the bathroom no problem, they just have trouble when they get there.
We've tried reintroducing gluten but one bite of bread is enough to make them both ill.
Our local kids hospital is done with our eldest. They disagree with taking gluten out of her diet. I am seriously thinking of asking again for a gluten challenge and follow up biopsy, to rule out/in celiac, but she gets so ill so quick.

 

[muppet]

Put them in the car to Boston if it's even a possibility that you can afford it. Ruling out Crohn's in the way that you described in your OP is NUTS.

 

[LauraJ]

Just got a call from our local children's hospital have GI appointment jan 13th
for dd2. Any suggestions what to make sure we ask?

Would love to go else where but husband is in hospital waiting on a resection as his crohns is no longer in remission an he had a stricture so his bowel is only 2mm wide. And have a 3 week old. It all happens at once!

 

[kimmidwife]

Laura,
I so feel for you. I have to agree with the others though that doctor sounds like a total quack. You cannot rule out an illness like that. Crohns can hit anyone and younger and younger kids are being diagnosed with it. Maybe you should google pediatric presentation of crohns disease and bring an article with you to your appt if you are forced to see him. I cannot look for one right now but when I have some time later I will try to find some things for you.

 

[muppet]

Especially considering your family history. Cripes.

Good luck with the upcoming GI appointment, hopefully you'll get some traction and assistance. Make your frustration and long wait for a resolution/diagnosis very clear, don't be shy about it.

 

[LauraJ]

Oh believe me I will! Our ped called 3 times to ask what the heck was taking so long. He even trailed zantac as that is what usually happens with a first visit. We have trailed and failed so hopefully the initial consult will be more than she's growing fine it's just reflux and being a toddler, here's zantac come back in 6 months.

 

[DanceMom]

I would suggest keeping a symptom diary to show the doctor at the appointment. Write down any unusual BM or pain associated with it, any other symptoms (fatigue, joint pain, rash, etc.), and temperature as well. It is best to take the temperature at the same time every day. You can track daily weights in your diary too if that is a concern. I would also take pictures of any concerning BMs or rashes to show the doctor as well.

At the initial GI appointment I would expect to go over the medical history and symptom diary and discuss a plan of action. Typically doctors like to start with basic labs and stool tests because those are non-invasive and relatively inexpensive. Good luck with your appointment!

 

[polly13]

Hi laura I am a little bit speechless in regard to what your GI is telling you. My daughter Lucy now 5 was diagnosed at 2 1/2 with crohns after displaying symptoms very similar to what you describe for 18 months or so- constipation, funny looking stools (looked like porridge and would go from beige to black to green) mouth ulcers, rashes around her mouth, she had a sore bum from the day she was born, screaming when going to the toilet, excema over her body, some joint pain she would complain of a sore knee, wrist , ankle. She was diagnosed by a paediatrician as having chronic constipation but the reality is that she was holding her poo because of the pain she was in when going. I was diagnosed as being a lunatic mother and was told I was paying her far too much attention when going to the toilet and if I chilled out she would, however deep down I knew there was something wrong - she's my second child and my first daughter suffered with constipation and it was nothing like what I saw with Lucy.
There is no family history of crohns in our family but it is one of the first things the GI asked me, so I would assume the first thing a GI would do where there is a family history would be at the very least do some bloodwork and check inflammation markers and do a feacal calprotectin test a all of which are non invasive. I cannot tell u if your kids have crohns but I can tell u if I was in your shoes I would be concerned also. I agree with other posters who are suggesting you change your GI. I think there are at least 5 people on here myself, my little sunshine, farm wife, izzie mom and queen gothal all who have little girls diagnosed with some form of ibd at age 3 or under, so that suggests to me that your is either trying to fob you off or is completely incompetent, either way I think you should get a second opinion. I hope you get some definitive answers soon. Apologies if this post is full of typos I am on my phone and don't know how to spell check. If I can help in any way let me know
Polly

 

[LauraJ]

Thanks everyone. I'm very jaded with the gastros here, our eldest had such bad diahreea it peeled the skin off her body wherever it touched and they said it was caused by too much juice, she had never had juice ever! We ended up taking her to timer because she was so worn out she just lay there. They said oh just see your ped this is something that needs extensive testing and monitoring not emergency treatment she seems to have a chronic condition(the appointment was a month away) I asked them outright if they thought she'd still be alive in a month given how ill she was. The suddenly found me an appointment for the next day.
With dd2 I am going to tell them imam not being fobbed off by the she is growing spiel. She is growing because we have seen a dietician for 2 yrs to make sure every morsel she eats is dense in calories and nutrients as it is so rare she actually eats.
Thankfully in British Columbia just about everything is covered by medical, extras are covered by my husbands insurance, the downside is its difficult to pick and choose docs. If you know someone you want to see most docs refer you, but if you have no clue it's a crapshoot which with my eldest we lost.

We are going to our family doc about the rash. She's really a FAMILY doc, sees the entire family! She hopefully will listen about our crohns concerns especially for our eldest and get us referrals to see someone better than the clown we saw last time. If dd2 has to see him I'm walking out of the appointment or demanding someone else.

 

[crohnsinct]

I would ask family doc to order the fecal calprotectin test if they can under your system. It takes a while to get those results and just puts you a little ahead when going in to GI.

You poor thing! So much going on, three ill family members, post partum and the holidays upon us...ugh...the perfect storm. Try to get some help and make sure you take care of yourself. You will be a much better mother, wife and care giver! :ghug::ghug::ghug:

 

[LauraJ]

Thankfully number 3 was fast and drug free! I was good to go after an hour! My in laws have been awesome taking one or two of them at a time so it can get stuff done, and usually they are all out for the count by 9. Number 3 sleeps well which is a huge help, and willing takes a bottle which the other 2 never would.
I'll ask our doc about the tests. She's really good.

 

[CDJ]

Both girls are on a bowel management scheme they go to the bathroom no problem, they just have trouble when they get there.

This is exactly what happened with my son! He had chronic constipation, would literally scream in pain when he had to go to the toilet. I spent many hours in there with him just holding him, rubbing his tummy etc just to calm him down. It got to the point where he was terrified of needing to poo as he was in so much pain, hence the constipation!! He was referred to what was called " toilet training clinic" to retrain him how to go. He was on massive doses of movical, a laxative of sorts in the UK, though this helped a little as it softened his stools he never got rid of the constipation. We were told to give him large amounts of fibre which really just made things worse.
He also had a fistula, though I didn't know what this was at the time. He also developed sores and ulcers in and around his mouth to the point that he couldn't actually open his mouth much at all.
We were told none of this was related, the sores on his mouth were put down to him licking his lips too much :confused2:

Eventually we were referred to a gastro specialist and after colonoscopies he was found to have crohns disease with ulcers and inflammation in his whole tract from mouth to anus! Not once was this thought of. Once he was on pred and the right meds the constipation disappeared and he has never suffered with it again.

Your story sounds so similar to what we went through I would push really hard to get a second opinion. I really hope you manage to get help as I know how helpless you feel when your children are ill and no one will listen.

 

[araceli]

I agree with every one. Find another doc. if possible. My daughter was diagnosed at 14 she is mix race, Iranian/Mexican. No Crohn's in family prior to her but my son has early Crohn's and suffers from constipation. Best wishes.

 

[Ki3]

I'm 13 female and I was diagnosed this year. Just thought id say to prove it doesn't affect it, I wish you the best of luck!xx

 

[LauraJ]

Well, I was all set not yo even bother showing up for our gastro appointment next month for DD2. We were so sure we were just going to be dismissed by the docs like we were with our eldest. But we got a letter from the local kids hospital and we are being sent to theIBD and liver specialist! I was shocked, but good shocked!
Also hubby found out the name of the rash he has on legs and DD1 has and it is IBD related. So now can go to doc and ask for her to be investigated fir IBD. We don't want either of the them to have an IBD but would at least appreciated all possibilities being investigated given that her dad has crohns and his side of the family has lots of autoimmune disorders
Plus we managed to find most of the stuff for the kids Xmas!!!

 

[DanceMom]

Is the rash you are referring to erythema nodosum? From experience, it would be a good idea to see a dermatologist and have a biopsy done so you can be sure of what you are dealing with.

 

[my little penguin]

Also add a rhuemo appt being what looks like crohn's can be other autoimmune stuff

 

[kimmidwife]

So happy to hear the god news. Whatever is going on I hope they can just give you guys some answers! Hope your family has a very happy holiday!

 

[Rocking on]

Stool sample to test for c diff should be first on the list

 

[Twiggy930]

Fecal calprotectin can be done at Life Labs and is not covered by MSP so it costs $120. You do need a doc to request it for you but the family doc could do it. It is a simple stool sample test. It takes 3 weeks to get the results.