Glandular bloody fever

[Partey]

DS is 18 months on from a GF diagnosis. He is 11. He gets tonislitis regularly. I don’t actually think his tonsils have ever reduced to normal size following GF.

He has 3/4/5 ‘good weeks’ before he has what I’ve termed a ‘crash’. These are textbook in terms of symptoms displayed. nausea, headaches, swollen tonsils (painful to drink even). This has gone on for the whole of 18 months post diagnosis and for 2/3 months prior.

GP visits in that time have ranged from “he may have Chronic Fatigue” to “oh it’s just because we have had a lockdown and everyone mixing again” to “his tonsils will shrink over time, water painkillers and ice pops etc etc”.

His attendance at his v understating primary was 92%. He is 7 days into secondary and is currently in bed after painkillers every 2 hours with yet another “crash”.

Would it be reasonable for me to insist on an ENT referral at our GP appointment later? Are there any others with experience of post viral issues?

DS is sick of being ill, sick of being absent from school, sick of missing out on activities. When I shared this with the GP last time she suggested I was preventing him/mollycoddling but I’m truly not- he just isn’t well enough. I’m also concerned the tonsil issues are not reported as such, which may impact any referral.

any ideas, any??

This was me at age 15! Honestly could have written your post. In the end DM paid for me to have my tonsils out privately, which helped immensely as I was getting chronic acute tonsillitis. My health improved massively after that but my fatigue did last another couple of years - improving all the time mind you. But the operation was the turning point.

Also there is a thread on MN somewhere of people who had this experience after GF, it's actually not unusual, but GPs never seem aware.

thank you both, I spoke with nearest private provider today who don’t operate on children, will explore private further tonight though.

My dad took DS to the GP today who was sympathetic and said she would refer. Took a throat swab but won’t subscribe antibiotics until swab back(the same happened in June, was in agony a week before swab showed antibiotics necessary)

GP said she doubted he would be given surgery to remove as he hadn’t had 3 documented cases of tonislitis. He has been to GP in person, or I’ve had telephone appointments 7 times since last April! All with identical symptoms! I was asked to be available for telephone appt next week so I will be reiterating this and probably put it in writing. I have pics of swelling going back months too thankfully.

even drinking hurts him today. It’s shit, I wouldn’t wish it on my worst enemy

I feel for your DS. I got glandular fever at age 7 and had frequent sore throat, swollen glands and ‘flu’. This dragged on until I was 25 and finally got a diagnosis of Chronic Fatigue Syndrome/ME.

It was (and still is I believe) extremely difficult to get a diagnosis. I had to change GPs as mine was a non believer in conditions recognised by NICE guidelines. (There is a lack of understanding and knowledge about these conditions.)Then I spent a very irritating year going to see the GP every time I had a flare so it was documented. Eventually they mentioned ME and I had to wait another 6 months after that point to confirm the diagnosis. But I was lucky to get it in writing and on record which has helped immensely with work absence, flu jabs, access to services etc.

I describe the feeling as having a flat battery, I can feel myself fading and slowing until the body just gives up. My ‘colds’ last at least 2-3 weeks and I’m not right for a while after.

If you think it could be ME, take a look at advice on pacing. There’s a website called the ME association where you can find lots of good information.

Thank you @RegeJeanPageMeOnMyCellphone

ME was actually mentioned, at some point by a GP but never since.

I admit that I do find it overwhelming to be honest, he’s so young. He already struggles with having to just stop, if that makes sense. That there’s no quick fix so to speak. Do you think having a tonsillectomy would have made any difference to how you felt or feel?

it seems to be the cause of pain, but absolutely he gets other ME symptoms, joint pain, restless sleep, nausea. It’s awful, thank you for sharing your thoughts on it

I'm sorry OP. DD had ME and I have the T-shirt on this. It's hard to know what to do, but if he's in Y7 now, I'd take some time out of school.

Basically if he can't do something without repercussions, it's the body's way of saying stop. So you need to work out his level of activity that doesn't cause worsening symptoms and stick to that.

Google the paediatric primer on ME/CFS and use that as your bible to getting medical support and getting the school on board.

It's easy to say, but education can wait. DD got it in Y9 at age 14 and she didn't ever go to school again. We rested and paced for years, but she did eventually recover 5 years later.

She is now doing an Access to HE course (with just 3 GCSES which she did at home over 3 years) and planning to go to uni next year.

Health comes first.

There's a good FB group for parents of children with ME. Very supportive and you'll get lots of good advice there,

I’m not surprised you feel overwhelmed, it’s an extremely difficult thing to experience both for him and you.

In my case I don’t think a tonsillectomy would have helped as enlarged lymph nodes rather than tonsils cause my throat issues.

I completely understand how he has trouble stopping himself from overdoing it. I’m 38 and still like to ignore the warning signs every once in a while! It’s a hard road to walk, trying to do things everyone else is doing so you can feel ‘normal’ and having to miss out on things when you crash.

I think I would definitely keep a keen eye on the pattern of illness. How long is each bout lasting? What’s happening in the days running up to the start of each episode in terms of physical activity, stress? The more data you can gather the more you might notice patterns or triggers that can help avoid or minimise future symptoms.

It’s a condition that varies greatly from person to person. I managed to get through school and uni but I found my health was the worst when I started full time employment. I was burning out by the end of uni and the long days, commutes and work stress just hit me. I had zero social life as I was just living to work. However, I took some time off, reduced my hours and found a great inclusive employer. I started understanding how to manage it better and reduce the extremes of activity.

I’m really sorry to hear this. I highly recommend talking this through with a lady called Norah wickerson in Derby if you can. I had glandular fever which didn’t improve and was diagnosed with post viral fatigue/me and later MS and she turned my life around. It was 25 years ago now but I think she’s still working.

Poor kid! I had similar after having glandular fever in my early teens. I remember having to sip drinks through a straw and let the liquid trickle down my throat. Exhaustion just like having a flat battery. The frustration of having it dismissed as something and nothing was awful, both for myself and my mum.

One thing that did help was taking vitamin d. I spent so long in bed or on the sofa I wasn’t getting much fresh air and sunshine. Vitamin d made me feel much happier, but it took having my tonsils out at 18 for the sore throats to improve.

Thank you all, I’m sorry you’ve also had shit experiences.

My dad took DS to GP yesterday who took swabs, brushed off other symptoms. Said viral Tonsillitis was common this time of year etc etc. Antibiotics wouldn’t help etc etc. I have a phone appointment next week to discuss referral which she more or less said would be fruitless. God knows what they’re recording his visits as because she said he hadn’t had enough episodes of tonsillitis to merit having them removed.

His symptoms are textbook ME I think? , it goes like this: nausea, pallor change, joint paint, malaise(tearfulness, irritability). And then throat swelling. The last episode was August- although this was short, maybe 48 hours. Prior to that June, for over a week(at which point he was given antibiotics but only after waiting a week for throat swab to come back).

i plan to write to GP bullet pointing the episodes and visits to GP and highlight that regardless of what notes they have they have ALL been for the same symptoms and that’s it’s almost 2 years it’s gone on for. My heart breaks, it sounds so trivial but it’s had such an impact on him and I feel so helpless

As an acupuncturist and having had a child with GF and mild ME following - I really recommend acupuncture!!

@Daysy my step mum is an advocate and the thought had crossed my mind. More googling, thank u