Feeling frustrated

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

L

LauraJ

Joined
Dec 17, 2013
Messages
58
:ymad: well after 2 yrs of sore throats, sleepless night, joint pain, rashes, slow growth, low iron/ anemia of unknown origin, horrific constipation alternating with normal bowel habits, then diarrhea, a scope showing only redness in the duodenum
We saw a rheumy at our local kids hospital, the fellow said it looked like we were dealing with IBD, but bed go talk with the head of the rheumy clinic. They came back and said that the joint pain was growing pains, she wasn't growing because she wouldn't eat, she was anemic because she wouldn't eat, nd that the sore throats, etc and lacy rash ( kept telling her it isn't!) are all just coincidence!
For f****suck! She said give her tylenol or Motrin every night before bed and it will fix everything!!
So now we have a sick child who is in pain and isn't growing and the doctors are done with us! This happened with our eldest, now she has what looks like a skin manifestation of IBD on her bum cheek, thankfully we see a derm for her eczema so at going to have him look.
My poor little girl, I am so mad!
 
Gastro said my eldest has Encopresis, so won't see her again unless her issues persist into the teens, the one who has just been dismissed as growing pains, gastro did upper GI, won't see her again passed buck to ENT who said no it's a gastro issue
So out of 3 kids 2 have issues and we have been dismissed by the childrens hospital
Now number 3 has started with allergies and issues with solids.
Our kids hospital is really good, but
 
Wow! Is the GI and ENT in the same hospital? One would think they could confer together on your case. What about a 2nd opinion? Is there another childrens' hospital near you? I'm sorry you're going through this.
 
We are in canada, it's the only childrens hospital in our province. The departments are supposed to coordinate, but who knows if they actually do.
We see our ped about the youngest in a week, I don't know if she'll have the report from the hospital, but I'll fill her in, see what she says.
We are lucky to go to peds who have a great practice, and all the docs seem to be on the same page. They say it is not normal what is going on with my 3 yr old, and want a answer, the hospital on the other hand says give her a pill and live with it.
 
I'm really sorry. This was our story for 9 years as well. I get it.

My best advice is to keep pushing for answers if you feel something is wrong. Keep a symptom diary, switch doctors, take pictures for documentation. Do whatever you have to do. You are your child's advocate and you know her best. You aren't crazy (in case you've questioned it....I did at times) and you aren't alone. Be strong and don't give up!!
 
Grumpy1 the same beautiful province as you! We go to childrens. We've seen dr Israel and dr Guttman ( yes seriously!) in the gastro dept. dr guttman was considering an IBD referral, but wanted to rule out EoE first. When nothing showed up on the scope apart from redness in the duodenum, we were released from the gastro clinic.
We same dr Israel for our eldest, his exact words- celiac disease and IBD don't cause constiption, behavioural issues do. And we were told as our kids are female, young and half chinese they would never have crohns. Their chinese dad has it!
Dance mom, here in bc the ped refers you to the dept at the kids hospital, you see which ever doc is specializing in specific things. Even though they are all gastros they all have their own sub specialty ie IBD.
Once they are done with you, they are done. Which is why the ped sent us to a rheumy for number 2, as they looks at joint pains associated with IBD.
So far we know number 1 has asthma eczema and cycles of constipation and is gluten intolerant.
Number 2 is a medical mystery.
Number 3 has diahrea with solids, a probable milk allergy, and is at risk of anaphylaxis.
Now number 3 is showing food issues, the ped is really concerned about IBD in all 3 , but seems to be the on,y one. Our only other hope is our allergist who number 3 sees in October, she's also an immunologist.
 
Hi Laura

There are many causes for low iron/anemia a side from IBD. What is the treatment plan for the anemia?

My oldest child, dx with Crohn's disease after we treating low iron/anemia for 4 years.
She was dx a 16 years, she has never had any bowel symptoms. We had x-ray showing constipation.

My youngest child has for low iron/borderline anemia and low vitamin d. We are currently treating with iron and vitamin d supplements. Current dx low iron of unknown origin.

There are some blood tests to look at having done if they have not already been done.
- Inflammatory Markers
- B12
- Folate

Also a stool test called faecal calprotectin.

Because my youngest child inflammatory markers and faecal calprotectin results are normal. We are doing the wait and see approach. She currently has no bowel symptoms.
 
Many things can have similar symptoms to Crohn's, but I do know that you can't determine Crohn's by the person having diarrhea. My son has never had diarrhea. Our GI told us that constipation is more common than diarrhea if the Crohn's is in the small intestine, which it is in my son's case (the jejunum). And I fail to see how being Chinese, young, or female would make it impossible for one to get Crohn's-especially when it's in the family! Keep pushing for answers, and I hope you get the medical help you need soon.
 
DS has crohn's and has constipation as part of it .
Can you have the ped run a fecal caloprotectin test( stool test)
It would show if there were specific gut inflammation .
Did they do any inflammation bloodwork ?
Another thing maybe the ped can help with .
 
They did run inflammation tests when she was not hoarse or constipated, she had blood taken during a good few weeks.
They can't figure out why her iron keeps getting low, they supplemented to get her iron up in 3 months it went from 3 to 8, they said 4-25 is normal for her age group, it took a further 6 months to get it to 12 . It was checked recently and it had gone back down to 8.
The stool test we have to pay for as it isn't covered by medical, and right now it would be a choice between my husbands remicade and this test.
The ped is work g down a list of possibilities and IBD is the next thing.
The growing pains comment just made me laugh, how can she gave growing pains when she hadn't grown even a mm in a year.
It sucks that we are stuck with a sick child and being told to ignore it and medicate her unnecessarily
 
She has had bowel issues and anemia for 2 1/2 yrs she's now 3 1/2.
Our eldest has had bowel and skin issues for 4 1/2 yrs.
The baby has had bowel issues since starting solids 3 months ago.
Spoke to our ped. The hospital does not support any further testing for any of the kids beyond the allergy testing for the baby.
The middle one not growing does not concern the hospital docs, they said everything is behavioural. She makes her throat sore, she holds her poop, she makes her rashes appear, and she is anemic because she refuses to eat. Force her to eat and the leg pains will disappear as she will actually start growing. And medicate for pain.
They also said the eldest has been holding her poop, we weaned her off of miralax without telling her, and she got constipated! We put her back on her normal dose and she was fine. Our ped says she has lost muscle tone due to prolonged constipation issues.
I guess it's going to take another few years of my 3 yr old not growing before we'll get any help.
 
I sympathise. I have been through this with both my kids. It took a year and a half to get my son diagnosed with Crohns, after rounds of doctors and my favourite "sometimes you just have to live with a sore stomach". My daughter had different issues and after 5 years she was about to be sent to a psychiatrist to help her 'deal with her pain' when they took out her appendix just in case and she's been fine since. I really hope you can get to the bottom of all these issues and get some help!
 
Sending over my support from the other side of Canada here in Ontario. Regarding the race comment that Chinese kids can't get Crohn's I would tell the doc to do more research! I just had Dr. John Howard speak at our environmental conference about health & environment and its connection. He has studies that are showing a large environmental component to Crohn's. I was in SickKids hospital yesterday and saw multiple races in the IBD clinic, Korean, Pakistan, African-Canadian, and Caucasian. There is more than the genetic component as a precursor to this.

Keep pushing for answers!
 
Thanks everyone.
Catherine, yes we were given something similar, as we saw a dietician as well as docs. Number 2 is the one that eats everything when she eats! And I mean everything, fish eyeballs, beef tendons, chickens feet, pork hoofs ( can you tell my in laws cook for her!)
She bearely touches dairy, it gives her eczema, and she loves meat. This is why the docs were puzzled. She always was very pale, and at her dental check up at 1 yr old they asked if she was anemic because even her gums were pale, we weren't too concerned as she'd always been like that! We only found out about the anemia because we jokingly mentioned to our ped that she been on iv antibiotics for an infection from her 18 month shots and the emerg doc had said her veins on her skin were so visible we should use her to teach med students the major blood vessels!
As soon as we stop supplements her anemia comes back, no matter what she eats. We let her devour oranges at a ridiculous rate for the vit c to help her iron absorbtion, but nothing seems to work.
We see the ped on Tuesday for number 3 so I'll find out what she has to say on everything.
 
Have you tried formula supplements ( pediasure , kids boost )?
These can help with weight nutrition etc...
Also did they look at malabsorption issues ( celiac lactose intolerance etc)??
Fwiw DS has a crohn's dx is on every strong meds but still needs daily miralax.
Some kids have slow motility and some have slow motility plus other stuff .
 
Celiac testing was negative, but our ped said in kids under 5 the testing is unreliable, even with a biopsy, as damage can be patchy. We were told if gluten bothers her, don't feed her it. She's not lactose intolerant, not that she has much in the way of dairy anyway.
When she is really hoarse, the constipation is at it's worse, so our ped is sure there's inflammation somewhere, if not top to bottom. She had croup and had to have an oral does of pred, it fixed everything for 2 or 3 days. We heard her normal voice! We had to stop the miralax as she had diahrea, and for a week she pooped fine.
She always points to the same spot when her tummy hurts, sometimes she's screaming and doubled over. It's always the right of her belly button, about an inch down. Once she was so bad we thought her appendix might be the issue. She screamed for 5 hrs in emerg, the triage nurse had to find her a doc and they gave her a double dose of tylenol. She was fine after that. The doc said it's just constipation, next time she's like that give her tylenol.
The nurse told us ignore the doc, bring her back next time she's like that! It's not normal.
 
Yes but when they biopsied did they specifically run the tests on the samples for lactose intolerance etc..,,?
My oldest recently had a scope upper GI issues - had a previous dx of Ibs .
Drank milk daily but avoid cheese etc so we assumed all the well with milk.
Biopsy results showed next to no lactase enzymes in his system.
From what we saw never would have thought of it at all.
Did they ever xray to prove the constipation?
 
We had the same experience - M avoided cheese and butter, but tolerated milk. We were also surprised to find that she didn't have much lactase enzyme - now she takes Lactaid and that helped.
M is also another one who has constipation and Crohn's. Honestly, it seems much more common than doctors say, especially in kids.
M also was very anemic and required iron infusions before she was diagnosed.

I don't understand the half Chinese rationale - my daughter is half Indian (like from India, not Native American!) and no one ever questioned whether it was possible for her to have IBD! I know it is not at all common in India.

I can imagine how frustrating this must be. Keep pushing! Sending hugs!
 
Samples showed no lactose intolerance. Constipation diagnosed through palpitating stomach you could feel how much was in there, plus she was passing hard baseball sized stools. And at one point she was going once a week
 
Once a week with miralax daily?
Using a kitchen gram scale or the cap?
Also keeping a maintence dose going and she was still constipated ?
Not changing dosage until at least three days at the dose were done ?
Xray is the only way to know if its constipation .
And whether it's truly cleared vs loose stool going around the built up hard chunks.
Typically DS has a clean out ordered the starts with a maintence dose.
Stopping the dose will bring back the constipation quickly.
Also pushing "P" fruits
Pears prunes -lots of juice from pears etc..,
Formula will also soften things up for some kids .
 
When we started miralax she had a 3 day clear out, until Lear fluid was running out. Her maintenance dose is 17g a day using the lid. We had to stop when she had the diahrea from the croup virus as she ended up dehydrated.when it stopped we did the clear out, then back on the maintenance dose, we never miss a dose. Even doing the daily dose she still gets constipated.
Diet doesn't have any effect, we had her drinking 200ml of prince nectar at one point.
I trust our ped when they say constipation, whenever her belly has been checked a hard piece of stool has been felt, and softer stuff behind.
If she gets jorrifically bloated she gets a clear out for 3 days again the. Back to the mainena ce dose
 
This sounds a lot like my kid. She has even had a small bowel abscess. and mild to moderate inflammation on biopsies at last scope. We are stuck with the IBS diagnosis and they say she has anxiety. I think I might be anxious too if I had tummy pain every single day. So frustrated at this point, i feel our only option is to wait to see if anything gets worse. She has to take Miralax daily too and has weight loss issues.
 
Poppers mum I know how you feel. We got told she's anemic and not growing because she won't eat, would you eat if you were constipated and had a sore throat.
I'm peed off that the fellow was adamant the the IBD team needed to have a look at her then when the senior doc walked in and said growing pains, tylenol, and make her eat mire she backed down
 
Well, tried sending number 2 off to preschool. In the last month these are the reasons she has been sent home.
1) diahrea no fever or othe symtoms - this I understand, but it was her normal diahrea, obeyed the 24 hrs begore return yo class rule
2) constipation, her grunting and crying and being in the bathroom for 30 mins was disturbing the other children.
3) pale no fever or other symptoms - a normal occurrence for her
4) fatigue, complaining too tired to walk - normal for her
5) hoarse - normal for her
6)pica - normal
7) tummy pain in her usual spot
8) having a hard time eating without choking - a recurrent issue
9) rash with no other symptoms - another issue I understand her being sent home for, but again a recurrent problem.

She's only allowed back if we get a note from our ped stating that
1) she has a gastrointestinal condition that causes constipation and diarrhea
2) her pica and choking have been assessed and if she has or has not got a developmental or behavioural issue
3) her pain and fatigue is normal for her md she has been assessed by a doctor

Getting the letter will be no problem, but my main concern is that if preschool notices that this isn't normal why are we being dismissed by every doctor except our ped. The rheumy said not to be surprised if she gets diagnosed with crohns as a teenager, but according to our ped she has all the signs now that warrant investigation
 

Similar threads

M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
S
Two year old with symptoms
Replies
22
Views
3K
J100
J
L
Starting Skyrizi next week.. need some support and some questions
Replies
27
Views
5K
momsa
M
S
Occasional blood in stool has returned, frequent BM and false alarms persist
Replies
19
Views
3K
Stressedmom
S
C
14 year with some lingering issues and unanswered questions
Replies
6
Views
2K
crohnsinct
C

Latest posts

Back
Top