Jaw swelling,

[Crohns dad]

In December my son’s right jaw, right in front of his ear, was hurting and then his cheek swelled up. His GI doc didn’t think it was connected to his crohn’s so we took him to the dentist and called his pcp. No answers were found/given and the swelling went away in a few days. Then, the end of Feb his left side did the same thing on Thursday, looked better by Monday morning, then swelled up again during the day. That night he started having chills and his temp was 102.3. 30 minutes after Tylenol it was 103.4 so we called the on call nurse and then took him to the ER. The ED was thinking it was either a gland or a lymph node and if it was a gland it may be infected so he prescribed Amox but told us to watch for him for 24 hours before starting them just in case. We started the antibiotic Wednesday morning after the swelling got worse and by Thursday morning the swelling was greatly reduced. He finished the antibiotics this Tuesday and had his infusion Wednesday.

The antibiotics seemed to be the answer but we still don’t know what it was. I keep wondering if it was actually an inflammatory fever he was running and the swelling was a lymph node and related to his Crohn’s. His GI doc has referred him to rheumatology. His labs have been trending towards inflammation for several months but every time we ask about it they just sorta blow us off. I’m actually wondering if the Avsola isn’t working very well anymore but they did go up on his dosage to try and get his calprotectin down. His sedrate has been in the 30’s, his Crp up from less than 1 to a little over 5, his platelets up to around 400. While none of these are really bad they have been trending up for a while, and his albumin has been trending down.

A weird detail: In December he began getting car sick on the highway. He normally gets car sick on back roads but not on the highway. Since December, he’s thrown up every time he’s been in the car. He started the antibiotic on a Wednesday morning. The very next day he went to his pcp for a followup from the ER and he did not get car sick on the way there or back. Yesterday, he went for his infusion and did not get sick. These are the 1st car rides he’s been on since December that he did not throw up. We’ve mentioned the car sickness to his GI doc multiple times but they basically ignore us and tell us to get him some stupid wrist bands. My point to them was that this car sickness was new and has to be a symptom of something and whatever that issue was, has apparently been corrected by the antibiotic.

Any of you ever experience anything like this or have any insight? This IBD is so stressful. All I do is worry about my son.

 

[my little penguin]

Gi should have sent him to infectious disease or ENT
They can verify lymph nodes and cause
Was is swollen under the jaw bone on the neck ?
My kiddo had one show up (3.5 cm ) under the jaw bone and kept growing
No infection
After a month and a week long hospital stay
Ent removed it
Afterwards cultures etc for months
Nothing grew in it
Just non caseating granulomas present
Rheumatology said it was his crohns
Gi said it was his juvenile arthritis
And dermatologist said it was something auto immune or auto inflammatory
In the end his humira was beginning to stop working
Switched to Stelara and so far (6 years ) it has been quiet

car sickness could be gastritis in the stomach that is getting worse with inflammation or infection or or or ….

can you get a second opinion?
Leaving inflammation high is never a good thing
Maybe there is something else to be added or new med or or or
Point they need to calm that inflammation

 

[Crohns dad]

The pain was right in front of his ear right at the joint, a hard lump of sorts, but his entire cheek swelled up. His PCP said he thought it was a lymph node and viral but to finish the antibiotics and if it happened again he would refer him to an ENT. I just find it hard to believe that out of the 600 plus IBD kids UNC pediatric GI treats, my son is the only one they’ve ever seen with symptoms like this.

Do you think an sibo could cause motion sickness? While amoxicillin isn’t the antibiotic of choice I’m sure it would treat and sibo.

 

[my little penguin]

So not sibo
You need a test for that by the Gi

Crohns can cause inflammation of the stomach and duodenum
When the duodenum is inflamed the stomach is slower to empty and the person gets very nauseous.
Abx increase the speed that the stomach empties
Erythromycin (E.E.S. Granules ) is used specifically for slow gastric emptying
My kiddo was on it for years and after showing delayed gastric emptying on a test
Once his duodenum was healed
No more abx needed .

Once you get his inflammation under control
(Get a second opinion )
If he is still having nausea then ask about a delayed gastric emptying test

 

[my little penguin]

Oh and my kiddo randomly vomited before dx and once or twice a week even after dx fir a year until he was placed on remicade
The right med reduced the inflammation and no more nausea /vomiting

 

[my little penguin]

https://www.mycrohnsandcolitisteam.... in people,, abdominal pain, and malnutrition.

 

[my little penguin]

They don’t use amoxicillin for delayed gastric emptying since they try to “save” that drug for infections.
Erythromycin no one wants to use that much so it’s an easier drug to add

 

[Crohns dad]

I could add that he’s on a liquid diet primarily due to sensory issues related to Autism. Poor guy has been dealt some difficult cards. He drinks pediasure and Kate farms but does eat some goldfish crackers. The only time he vomits is in the car.

 

[my little penguin]

Liquid diet is more likely to produce sibo
Definitely ask for a test
Een should reduce inflammation.

 

[asadmom]

Hey @Crohns dad, I am so sorry to see your post about another bad experience. I agree with "This IBD is so stressful." I hope you guys will have peace real soon. I left UNC and am now with an awesome pediatric doc at Duke. PM me if you would like to consider seeing her for a 2nd or 3rd opinion. She is amazing.

I can comment on the nausea in car - you are not alone. My son for the longest time would get car sick, all the time. Being nauseated in the car is his trademark and we used to get so frustrated with him. I've always thought he's just too tired or not getting enough sleep or his sleep apnea... Then his diagnosis came and treated and he's never car sick anymore. It's day and night difference so I attribute it to his Crohn's. 100%.