Not sure what to do

[crohnsdad109]

Hi,
I have a son with Crohn's. It's been a journey for the past five years. A couple weeks ago, his little brother developed nausea, and it's persistent and worsening. We spent yesterday in Urgent Care, where they noticed his appendix was tender, and they recommended getting an ultrasound on the appendix at the boy's primary care physician. As we probably all know, the ilieum is near the appendix. We spent today in ER, and they confirmed he has an inflamed ilieum rather than an appendix problem, and recommended seeing the PCP (primary care physician) again to see if he wants to schedule a colonoscopy to "rule out" GI issues. So I called the PCP today, explained my son's severe nausea and inflamed ileum, mentioned that an inflamed ileum is most commonly associated with Crohn's, and that his brother has Crohn's. I requested a colonoscopy, but first they have to schedule an appt with an alternate PCP for tomorrow afternoon. I assume that doctor go ahead and refer to a GI for a colonoscopy.

All that to say ... my son is absolutely miserable. he's shaking, nauseous, chills, vomiting, and D. I am thinking ... just possibly ... that if this is Crohn's manifesting, then maybe he has a blockage which could be causing the nausea and vomiting? I've not experienced that before, my other son's Crohn's manifests in other ways.

In any case ... let's pretend for a minute that the inflamed ilieum is going to lead to a Crohn's diagnosis, and that he has a blockage causing the vomiting and nauseau - which it may not be, perhaps it's just "a stomach bug" - but if it is a blockage, in the meantime, at what point do we go to ER? Like, at what point is it life threatening while we wait for our HMO process to play out? For anyone with experience with blockages, are there other symptoms to look out for?

I hope I'm not being hypochondriac, just wanting to be a responsible parent while acknowledging crohn's family history. any advice appreciated.

 

[my little penguin]

When you took him to the ER was it a children’s hospital ER or adult hospital ?
With your hmo do you have a university children’s hospital as a option ?
That would be what I have done in the past for my two kiddos .
Does your older child with crohns have a Gi ?
Can you message the gi explain the situation fir your younger child to be evaluated ?
Will your pcp refer you to your other sons Gi ?
I would want imaging mri /ct /scope to confirm .
Did they do a fecal caloprotectin test ?
Bloodwork for inflammatory markers and nutritional status ?
Why wouldn’t they just refer to a Gi to determine if a scope is needed ???

When at the ER did the do an X-ray to rule out obstruction ?
Was the ultrasound with contrast ??

I can say my youngest was dx with crohns at 7(now 17)
My older child had nausea and Gi issues
Our Gi for my youngest immediately scheduled took my oldest on as a patient and quickly scoped him
Not once but twice -second time was two years later still nausea sick etc … figured out severe lactose intolerance was causing the issue -thankfully no crohns but similar symptoms

no all Gi issues are crohns
But getting seen by a Gi is key -quickly

 

[my little penguin]

Did want to add
My crohns child vomited on and off with nausea for months prior to dx .
No obstruction just how his crohns presented
He kept vomiting unless he was on een
After adding remicade the vomiting stopped

 

[pdx]

My daughter has a short stricture and has had several partial obstructions and one total obstruction. With a total blockage, your son would not have diarrhea (I'm assuming that's what you meant by D?). The time that my daughter had the total obstruction, she was vomiting every 10 or 15 minutes for hours, and after a few hours the vomit was just green bile. At that point we took her to the ER.

That said, I am not a doctor and if you feel like your son is really sick, take him back to the ER. Even if he's just getting really dehydrated, that might be reason enough for him to need to be admitted (although COVID is complicating things right now as hospitals fill). That's what happened when my daughter was first diagnosed. She was pretty sick but not sick enough to get a quick referral to a GI doctor. While her referral was percolating through the system, her condition rapidly deteriorated and we took her to urgent care. The doctor there took a quick look at her, sent us straight to the children's hospital, and she had an emergency scope the next day which led to a quick diagnosis.

I'm really hoping that your son is already feeling a little better. Good luck over the next few days--I hope you get answers quickly.

 

[Pangolin]

Now seems like a good time to take him to a children's hospital ER. That would speed up the diagnosis process.

 

[Maya142]

I would echo what has been said above - if you feel like his symptoms are becoming unmanageable at home and he's getting dehydrated and is unable to eat, I would then head to a children's hospital ER (they will be best equipped to treat him).

My daughter had a suspected obstruction last year and she could not eat or even tolerate tube feeds (she has two feeding tubes - a G and a J) and threw up green bile (and was draining over 1L of green bile from her G tube) and could not have a BM, which is why doctors suspected an obstruction. She ended up being admitted because she was extremely, extremely dehydrated (her electrolytes were all over the place and potassium, sodium and chloride were extremely, extremely low) and could not eat/tolerate tube feeds - just that was enough for them to admit her.

The other option would be to call the on-call pediatrician - our pediatrician's practice always had a doctor on-call. They will tell you if they think an ER visit is necessary.

 

[crohnsdad109]

Thank you all for the good info and tips.

I'll check on the children's hospital. I believe it is an option for us, as my son with Crohn's just switched over to a good pediatric GI at one of the big hospitals with a pediatric IBD unit. It's a bit of a drive but the care is good. I'll see if I can get my nauseous son referred to that GI.

My Little Penguin -

> When you took him to the ER was it a children’s hospital ER or adult hospital ?

Just the local community hospital.

> With your hmo do you have a university children’s hospital as a option ?

I think it's technically out of network though it's listed on my insurance site - but they approved it for my son that has Crohn's when we wanted to switch to a GI there, so I'll check.

> Does your older child with crohns have a Gi ?

Yes. We started with a relatively local one - the only pediatric GI in our network - but got approved this year to switch to one at a large hospital with a pediatric IBD unit. Humira wasn't working anymore, so our new GI has switched my son to Stelara and added mesalamine. And gave us access to a nutritionist, mainly a mediterranean diet instead of what we'd been doing, a high-fiber diet based on a book by a GI called "fueled by fiber." We liked the diet but I guess fiber is tough when you're active Crohn's. My son's been flaring since December.

> Can you message the gi explain the situation fir your younger child to be evaluated ?

good idea.

> Will your pcp refer you to your other sons Gi ?

That's what I'm hoping now.

> I would want imaging mri /ct /scope to confirm .

They did a CT scan, had him drink some dye. They said the only thing they saw was the inflamed ilium. So I'm hoping that rules out blockage ... not sure if blockage shows on a ct scan.

> Did they do a fecal caloprotectin test ?
A stool culture was ordered that first day in Urgent Care, we brought the kit home. Not sure if it's the fecal caloprotectin. Also a test for "ova and parasites".

> Bloodwork for inflammatory markers and nutritional status ?

I don't think so. Nutrition wise they gave him an IV. I'll bet we won't get inflammatory markers checked until we get to a GI. I hope it doesn't take weeks. With Covid we waited a few months before my other son could get into the new GI.

> Why wouldn’t they just refer to a Gi to determine if a scope is needed ???

I was hoping we could just go straight to the GI. When I spoke with the PCP's office I asked if we could just get a referral to a GI for a scope but they said no he has to come in to the PCP first. i was looking at my son shaking, and going "i dunno..." but at least they got us in tomorrow.

> When at the ER did the do an X-ray to rule out obstruction ?
I don't think so. Just the CT scan of his stomach.

> Was the ultrasound with contrast ??
there hasn't been an ultrasound yet, just a ct scan. Urgent Care said our PCP might want to do an ultrasound - we'll see the PCP tomorrow.

What a couple of days. couple of weeks really. Thanks all for the help. really appreciated.

 

[my little penguin]

Ct scan with contrast would have seen an obstruction if there was one .
One thing to keep in mind
Most states have supplemental insurance for kids with chronic conditions through medical assistance
This is based on condition and not on parents income
Your state weddire should have it listed abd the social worker at the Gi department of the big hospital can help you fill it out
It covers alot of things the primary may big cover and can give you more options
Good luck today