Swollen Lymph nodes

[HiBear]

Posting here for traffic.
DS is almost 21 months old, suspected ASC, nonverbal, limited understanding and huge fear of doctors or anything that invades his personal space ie meltdown in shoe shop having his foot measured, freaked out when someone tried to put a sticker on him, etc.
He has unfortunately needed some medical appointments which hasn’t helped with his fear, has glasses and needed an awful eye test that he basically had to be restrained to do and hearing test that had to be terminated as he was so upset.

So onto my current problem. He has had swollen lymph nodes, two behind his ear since he was a few months old. He had them checked with an ultrasound at around 4 months and they came back as normal reactive lymph nodes. They are still swollen and I’ve also discovered a few more around his neck and behind ear. Rang GP, first GP said to monitor and come back in a few weeks. Got worried when I found more and second GP has ordered blood tests and ultrasound.

The last thing I want to do is have to restrain him and put him through potentially traumatising situations so I really don’t want to have to do this unless it’s absolutely essential - sadly my gut is telling me we need to do. However due to me having my own health anxieties DH thinks we should monitor.
I’m now thinking we should see a paediatrician to examine him before we do the further tests (although it’s an additional awful step in the process for him if they say yes we need the tests).

YABU - Take him for the ultrasound and blood tests asap
YANBU - Take him to the paediatrician first to examine and monitor in the meantime

I’m a FTM with very little support and this has all been extremely upsetting and stressful with so much going on with DS. He also has chronic problems opening his bowels and sensitive skin which he may need to see specialists for. Of course the main thing we need to do is make sure he’s well and there’s nothing serious going on but I’m so scared of the emotional distress and damage each of these appointments does to him - he can’t understand when we try to explain there’s pretty much nothing we can do to prepare him due to his communication delays 😭

Oh sweetheart, I've no advice but just sending a hug, and giving your thread a bump x

@NotbloodyGivingupYet thank you xx

I also have an autistic son so I know how stressful appointments like this can be 😔 sending you a hug in solidarity! I would probably bite the bullet and get the ultrasound done - are there any high value items like sweets/toys/watching a favourite cartoon on a tablet that might help distract him while it's done? Can both you and DH go to the appointment so DH can hold him still if necessary and you can reassure him and comfort him. Hopefully it should be quite quick and then you can reward him with lots of cuddles and praise

@Endofyear it’s so hard isn’t it. DH will have to restrain him and we will put on one of his favourite videos but I know he’ll be beyond hysterical. I’m actually not sure how they will successfully do the ultrasound as he won’t keep still. I just know how it’ll play out given how he was at his ophthalmologist appointment (which he needs a repeat of in a few weeks to see if his glasses have made a difference 😭). But yes I think you’re right and we just have to do it really. Thanks for the support and tips x

OP I don't know if you can get mnhq to change your title to include that it's your nd son who needs treatment? There may be more people who can help with that, even if they know nothing about lymph nodes. Or start another thread with a different title if that's simpler.

My son has bad eczema and pretty much constant swollen lymph nodes.

It seems they can go hand in hand - his immune system is always in overdrive.

I spent a lot of time worrying about it, but when we eventually saw the specialist consultant she was clear that there was no need to worry unless there were additional symptoms (night sweats for example) or they got beyond a certain size, which was quite significant.

So I would take him to the paediatrician and see what they say.

Can you talk to the GP/specialist about whether there's a possibility of some sort of sedation? I know they do this for young children for eg MRI scans as they're scary and they need them to lie still. I don't think it's usual for ultrasounds but it sounds like your son will find the the scan super traumatic.

Id chat to the pead about sedation. It would be much kinder for dc to be sleepy or sedated for ultrasound and getting bloods taken.

Sorry have just re-read your post properly, yes I would definitely go and see the paediatrician first. Talk to them, explain your sons symptoms and your son's issues with being examined. The paediatrician will have more knowledge than the GP (as they have specialised in paediatrics rather than general medicine). The paediatrician will hopefully be able to tell you whether it's OK, you need to keep an eye on it, or your son needs a scan. They might be able to do some of this without examining him. If your son does need a scan, the paediatrician would be a good person to talk to re sedation.

I really feel for you. My ASD DS has needed sedation, and even GA, for tests and dental treatment etc.
I think seeing a Paediatrician anyway is a good idea. Depending on how soon you can see them, proceed with the tests anyway.

Oh this is a good idea do you know how I can flag it to MNHQ?

Glad your DS was ok this is reassuring - he has no night sweats and generally seems well. He does actually have a rash that crops up around his shoulders that I’m thinking could be eczema and he still has some cradle cap too so it’s possible perhaps these are causing the swollen glands. Did your son’s lymph nodes remain swollen or did they go away eventually?

@noctilucentcloud & @Hankunamatata I agree sedation would be preferable given our circumstances I was trying to find information online but I found some old threads about children being confused and scared coming around from the sedation and even how they may need to be held down to administer it so I was wondering is that going to be an equally awful ordeal it’s hard to know 😩

@noctilucentcloud & @Davros thank you I have managed to book an appointment with the paediatrician for the end of the month. In the meantime his ultrasound appointment has been booked for April so I will keep it for now and we will hopefully have a better idea of how to proceed after we speak to the paediatrician. DS actually had an assessment with a wonderful SLT today who recommended a dietitian and said that they will probably want to run some blood tests as well so she said if we can get the list of tests from the gp and dietitian and do it all in one go. But she did say it will be an awful experience and we’ll only want to have to do it once. But I will speak to the paediatrician about the possibility of sedation and if they recommend it

@HiBear the plan you've made sounds a good one. Great to hear about the SLT and intro to dietician.

The ones I was particularly worried about eventually went down (after months) but they are always swelling up in new places, it's absolutely constant. His just seem to be very reactive 🤷‍♀️

Sounds like you have a good plan in place, all the best with it

Thanks everyone appreciate all the advice and support