Teen w (really) swollen lymph nodes (neck)

[Hoping]

Good evening, posting again hoping to get some kind of confort as we await to see how situation evolves, test results and upcoming appts. My 14 1/2 y old son who was diagnosed 1 1/2 y ago has Crohns, terminal ileum. Has been on Humira for 11 months and we had to escalate to weekly 40 mg dosing this last fall. He's also on methotrexate 15 mg weekly. His drug levels are high and no antibodies. Recent weight loss, fatigue. Whole family had URI/throat infections during the holidays and he had a sore throat w/o fever for a good 2 weeks. Resolved for about 3 weeks ago. Took him to see PCP this week d/t acne and to assess swollen lymph nodes I had noticed looking at his neck, bilateral. He's grown so much, thought might be part of changed morphology. PCP ordered blood work including rapid mono test, all came normal. Should get results second mono test this week. We are also awaiting results of calprotectin this week. I just felts his swollen nodes today so I could better assess improvement in next weeks and they are so swollen, hard, never felt anything like this on me. Being a nurse, my mind goes to the worst places and I am not at all objective when it comes to my son, and worried about lymphoma. Our GI tells us that his chances are not more increased d/t humira, that this is no longer supported by research. However I am not sure there is much research done on kids on such high doses... Standard dose for adults is 40 mg bi monthly and he's on weekly dose. Also, PCP said lymph nodes appeared normal elsewhere on body.

So calpro and second mono test results coming this week
Visiting PCP again in 1 1/2 week for follow up on lymph nodes/
I trust both our PCP and GI but am so worried, didn't sleep for 2 nights.

Any input? Should I request an in person visit w GI? Can Crohn's related inflammation cause swollen lymph nodes in the neck? If not lymphoma and if he is not sick, what could explain this?

Praying we do not get hit with another tough Dx.

Thank you un advance for any input. This forum has been the most helpful resource since this Dx.

Worried mom

 

[Maya142]

I don't have a lot of advice but I can confirm what your GI said. The chance of cancer due to these medications is tiny. I believe it is 2 in 10,000 for any regular person and 4 in 10,000 for someone on an anti-TNF. It is also now known that inflammation can cause cancer so that is why aggressive treatment of inflammation is necessary.

As for dosing, there actually have been studies done on adults on the weekly dose. And I'd be surprised if they hadn't been done on kids too. I know there are currently studies being done to test an even higher dose of Humira in certain diseases (I think it was UC).

Escalating from 40 mg every other week to 40 mg weekly is standard if Humira isn't working as well as it should be. Both my daughters were on weekly Humira. My older daughter was on weekly Humira and 15 mg MTX for over 5 years and didn't have any issues.

I would definitely make sure his GI knows what is going on - it sounds like he/she does since the calprotectin was ordered?

I'm going to tag some more parents so you can hear from them:
my little penguin
crohnsinct
Pilgrim
pdx
Farmwife
Jmrogers4

Hang in there!!

 

[my little penguin]

Big hugs
Request a referral to infectious disease specialist
Especially given humira
Woke up on day last year with a sore spot on his neck
Later in the day it was golf ball size sticking out of his neck

We were told it was from an infection
Ds hadn’t been sick
The docs told us as long as it was about 1 cm or less they were not concerned attribute it to viral infection .
Ds lymph node in his neck was 2.5 cm .
Things the ID doc looked at included cat scratch disease
They can do an ultrasound
This can give you an idea if it’s suspicious for cancer
A cyst /infection etc...plus a true size
Ds was monitored closely for a month
After that we saw ent
He started oral abx and had an ultrasound.
It continued to grow
So Ds was admitted given iv abx
Later they tried a needle biopsy (useless test gives them no info at all)
Finally they did excisional biopsy (basically removed it surgically)
It turned out to be 2.5 cm x 3.5 cm
After all that tons of tests it was determined to be autoimmune related (more than likely from Crohns )
No infection
No cancer
Nada

So please see ENT /ID docs at the same time
It would have saved us a month of waiting .

 

[my little penguin]

Ds was on humira at the time -every 5 days plus mtx
He was only 13

 

[my little penguin]

Things we also learned
Leave the lymph nodes alone
Continuing to touch lymph nodes would make them irritated and grow
Simply from being touched
If you need to measure them do that once a day or every other day with a sewing or flexible measuring paper tape.
Check with his doc how often they want you to check

 

[Hoping]

Very helpful, thank you so very much. Will request referrals to ID and ENT. Glad your child was ok!

 

[boysmom4]

I'm so sorry for your worry and your sons troubles. I teared up while reading. You're both warriors tho, don't forget that when trucking through this season <3
I don't have a lot of advice right now either, but a few questions may help if I know some more info.
#1- has he been tested for other autoimmune diseases as Crohns may be a secondary AD? (Also, I personally have very high lymphocytes on blood draw my whole life and 41yrs old; my sons have visible nodes a lot too)
Has he had a blood draw for specifically- an ANA (antinuclear antibody test) with "full antibody panel?"
#2- where do you live?
#3- has he had all you mentioned after starting humira? Has the dr ever said any of his current symptoms could be side effects?
-#4- have you had a rheumatology consult?

I may have some more feedback.
Stay strong, momma.
God bless you both! (((Hugs)))

 

[Maya142]

Actually that is a good point - has anyone tested for drug induced Lupus? Does he have any other symptoms - fatigue, joint pain? Any rashes? You mentioned fatigue in your post - is he still really tired? It's rare to have lymph node swelling in drug induced lupus but it can happen.

My daughter got drug-induced Lupus from a different biologic, Entyvio. They diagnose it by doing blood work - ANA, anti-histone antibodies, anti-dsDNA antibodies etc.

A rheumatology consult is a great idea - they may have more ideas and will definitely have more experience with drug induced lupus.

 

[Hoping]

Thank you so much Boysmom4 for your resplu.
To answer your Qs:
#1- has he been tested for other autoimmune diseases as Crohns may be a secondary AD? (Also, I personally have very high lymphocytes on blood draw my whole life and 41yrs old; my sons have visible nodes a lot too)

No but does get systemic manifestations (joint pain, red eyes) when inflammation high.

Has he had a blood draw for specifically- an ANA (antinuclear antibody test) with "full antibody panel?"

No
#2- where do you live? San Francisco Bay Rea
#3- has he had all you mentioned after starting humira? Has the dr ever said any of his current symptoms could be side effects?

Lymphedema started after Humira indeed, about 10 months into it, after dose increase to weekly. Need to converse more about GI on this, though he is aware of what is going on. I think we will touchbase post calpro results later this week.
-#4- have you had a rheumatology consult? No, my understanding from his GI was that "we treat the Crohn's, we treat the joint pain" and thus far that has been the case indeed.

I appreciate all the feeback. Thanks a million for the info and the support, so very much appreciated.

 

[Maya142]

-#4- have you had a rheumatology consult? No, my understanding from his GI was that "we treat the Crohn's, we treat the joint pain" and thus far that has been the case indeed.

So that is sometimes true but not always true. There are certain types of arthritis associated with Crohn's which flare independently of the Crohn's. They have to be treated as independent diseases and have to be treated by a rheumatologist.

My younger daughter has a form of axial Spondyloarthritis that flares independently from her Crohn's. In her case, the Crohn's is mild and her arthritis is severe.

CCFA has a good explanation of the various types of arthritis: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

I think waiting for the Fecal Calprotectin is a good idea. However, if it's negative, then I would ask for ENT and Infectious Diseases Consults and maybe even rheumatology.

 

[CarriefromMI]

Sore throat and fever 2 weeks but “resolved”. Reminds me of my mono at 17. It took months for doctors to realize it was mono. Quick test always came back negative. Sore throat long gone but swollen lymph nodes. Some days I was tired and some days not. Eventually the longer mono test was done and confirmed. By then I could barely get out of bed and missed probably 2 months of school

Could also be strep throat. If strep throat isn’t treated it can lead to a strep blood infection. Did he have a strep test and not a quick test but the longer test?

 

[crohnsinct]

Hey there! Another Bay Area family here! What hospital are you guys at?

I would be looking forward to those cal pro results also!

It is not unusual for kids to need the adult dose or more to control their disease. Crohn's tends to be more aggressive in pediatric patients than adults.

As for the lymph nodes, both of my girls have done the same thing to me on numerous occasions. GI usually sends us to the med, sed checks it out and we "wait and see". Always turns out to be nothing. One of my girls has severe psoriasis in her scalp and believe it or not they say they think her scalp drains through those nodes. The other daughter...no explanation.

I also think if he was getting any of the cancers that they are concerned with, with Crohn's drugs, something would have shown up in his blood labs.

Good that you are getting it checked out and watched and tests done.

Good luck and keep us posted!