Post viral Fatigue/GF- help me get help from GP

[Partey]

DS who is 10 was diagnosed with GF in March of this year. It followed months of episodes of fatigue/illness.

We followed GP advice, had many blood tests and follow up appointments. DS hasn’t recovered really. I last spoke to GP in august, he still suffers with muscle and joint pain, horrific nausea, headaches and more recently swollen tonsils(which usually cause an awful cough). The GP said that it was normal post GF- it’s had an almighty effect on his mental health too and whilst she sympathised, was content that it was the GF.
This was backed up by the nurse practitioner a few weeks later when another bout of a virus reared it’s head.
We’ve just had another weekend of a huge throat, headaches, awful nausea and cough. He is totally and utterly fed up and chances are he will miss at least a couple of days school this week. This is now a monthly(at least) occurrence and has been for 12 months now- his attendance last year was in the low 80’s bearing in mind school closures and on top of the emotional toll it’s taking it’s soon going to affect him academically.

I don’t know how to help him, his diet is the best it’s ever been. The nurse suggested a multi vitamin which I’ve given for months with seemingly no impact. His concentration and mood is so low at times.

My concern is ME/CFS- from my admittedly limited knowledge but I’m wary of another brush off from the GP, is there a lack of diagnosis for this? I honestly don’t know what I’m asking, any advice, suggestions anything. I’m seeing my little boy absolutely battered by something I can’t seem to help him with

@Partey, some good info there from Tattoed lady and Clouds. I have ME and have been ill for 23 years, severely for the last 16, bedridden the last 9 years. However, thankfully, many don’t get as bad as me as people vary from mildly affected to very severely affected. Also it’s not uncommon for young people to take a good while to fully recover from post viral effects of glandular fever but they do recover if managed well at this early stage.

I’m glad the information on boom and bust resonated. As you are finding with your son boom doesn’t have to mean an extremely physical day, it could just be acts of daily living that are beyond the person’s limit. It may have been going to school 3 days in a row after coming down with the sore throat was too much and he needs to be on a reduced timetable at the moment. It’s really good you are going to talk to the school as you need them onside. It is also why it would be very helpful for your son to see a paediatrician and get medical support to share with the school. The only thing to be mindful of is making sure that your medical support takes seriously the need to pace and doesn’t wrongly psychologise the illness. If they do then seek different medical support with professionals who are up to date.

If you get appropriate medical support they will help you with working out what your son’s energy limits are and devising a plan that tries to spread his available energy across education and social activities, as both as you say are equally important to be able to do within his new limits. I’m going to attach a link to a medical primer for children and teenagers by doctors including the two that were interviewed in the link I sent you. The primer covers thing like diagnosis and management, it’s all good advice and I would definitely recommend reading the management section at least if you are unable to read it all. www.frontiersin.org/articles/10.3389/fped.2017.00121/full#B19

I noticed someone suggested using a wheelchair for your son’s bad days. This is good advice if the child needs it but it may be that your son’s energy levels are not reduced enough to need it. As said people can vary from mild to severely affected. All the best.

Thank you again everyone, so much information to process but all very very helpful.

So DS has improved as the day has gone on. We are now what I described earlier as his hyper mode. Not physically, more verbally if that makes sense. This is definitely something I’ve noticed many times before. I’ve said things like “I know you feel better because you’ve never stopped yapping”. And that’s exactly what he’s doing like he’s eaten 1000 blue smarties!

I had GF back in my uni days and very nearly had to give up. I found conflict and hostility the biggest energy drains - more than walking uphill. So it might be worth enquiring about the people around him at school...

Also worth investigating allergies - GF has a reputation for triggering these. Think about the health or otherwise of his gut.

In the longer term, he needs vision - something to really live for - if you throw your heart over the bar your body will follow.

I was actually off work sick for five months with the GF then post viral fatigue in my early 30s. Fortunately I had an excellent GP and workplace health team and had support from both to start doing little and resting lots and build myself back up. For me, the symptoms that floored me were complete inability to make any decisions or think anything through, headaches and muscle aches like I'd ran a marathon after walking to the kitchen, making something to eat and eating it then and there.

You've had some good advice but the main thing I wanted to share was don't listen to anyone who encourages a pushing past it approach. Makes everything worse for longer.

@SpaceshiptoMars the allergy thing has really resonated. I’ve noticed dairy having an impact on his nausea recently. And whilst going without hasn’t stopped it completely I’d say it’s lessened! Another thing to think about

@WTF475878237NC this has been my reasoning in keeping him off school this week. Although he’s not been well enough I haven’t given myself the hard time I usually would for making him stay home.

His football worries me- it’s his life basically. He was devastated when he couldn’t play for a couple of months during and after the GF. We then re introduced it slowly and have had to carefully manage it since. I think it’s something me and his coaches will have to carefully discuss this weekend

Not experienced GF but my ds had a lot of similar symptoms that ended when he had his tonsils removed. It took years for the doctors to diagnose this and they came up with all sorts of suggestions first. Has he seen an ear, nose and throat specialist as you mentioned tonsils a few times in describing his symptoms? Only a suggestion as l know you would try anything to improve his strength. My ds had desperate attendance due to constant illness. He, literally, never missed a day after having his tonsils removed. I know he didn't have GF but it's worth a check up with a proper throat guy.

@junebirthdaygirl this is definitely something I’ve considered. His tonsils are huge at the minute. Have been since June really, they maybe shrink to normal size for a week or 2. This is his throat currently. Sorry if anyone is squeamish!

Is it possible to get an appointment with a throat specialist? Especially when his tonsils are up like that so they can see them at their worst.

@Partey smart advice from JuneBirthdayGirl - in addition to EBV, I also had lingering bacterial strep throat that my GP initially (and reasonably) thought was a result of EBV not strep. So I'd advise you to ask for a full auto-immune blood panel and strep, lyme, parvo etc. if your doctor hasn't done them already.

I think what Zotter has said regarding 'it could just be acts of daily living that are beyond the person’s limit' is incredibly important for anyone with chronic fatigue of any diagnosis. My illness is moderate, now - I was bed bound initially and severely reduced in ability for almost 2yrs. I'm back at work full-time and live a relatively normal life but...I cannot go to work/get my groceries/do housework/drive a long journey in the same day. And don't even talk to me about getting back to crossfit! That level of normal daily living is beyond my capacity yet. And yet, none of these activities are outside the realm of 'normal' activities, requiring 'normal' exertion. But in my early days I overdid normal living, I overreached my capacity. And it's so important to limit the boom/bust cycle early on, even if it's just daily living that's the root cause, because ongoing boom/bust continues to inflame the autonomic nervous system and makes recovery that much harder.

To add to the analogies on pacing - I listened to a Bateman Horner post that described pacing as like having one dollar of energy a day that equates to four hours activity, and then asking how do you spend it. Would you spend it all in one go til you drop? Would you spend it in 2 x 2hr blocks? Would you spend it in 4 x 1hr blocks? Or would you pace yourself throughout the day by being active for 20-30 minutes and then recovering between activities so that you can get through a full day? They also described how if you overspend that dollar then you get into 'debt', and that people who are fatigued need to avoid debt because when they go into debt they eventually get ill (depending on how sick they are, and how much they over did things). But adopting a preventative rather than reactive approach can help prevent a worsening of symptoms and help long-term prognosis.

Also, a fitbit can help you monitor your sons sleep to see how he's really sleeping.

@Zotter I know this isn't your thread but you have my sympathy and also my admiration for your generosity in sharing information.

Thank you @TattoedLady, that’s v kind. I am glad your functioning has improved a lot in the 3 years you have been ill. You are right to stress the importance of keeping within your individual energy limits. 2 day CPET studies have shown the aerobic metabolism in ME is affected and pushing through just makes things worse. It is of course the antithesis of what is usually required with other conditions.

@Partey, good suggestion by junebirthdaygirl to investigate his tonsils further as important to rule things in or out. I am glad your son is feeling better. If - and I don’t know whether it is of course as he has not been diagnosed yet - PEM is part of what is going on with him then he could now be recovering from his PEM flare so all symptoms are much less. The key going forward as said before is to find what his activity limit is approximately, not an exact science, so he doesn’t keep getting PEM/crashing which will not help him heal nor is pleasant.

Finally, as Clouds says the feeling wired thing is often reported in ME. We call it the wired but tired sensation. I get it though if I overdo an activity. Or alternatively as your son is feeling less ill perhaps he is just happy to feel less ill and is more exuberant. You know your son best of course.

Ps Bateman’s money analogy for pacing is useful.

*@Partey * I had GF when I was 19 - really ill for a couple of weeks, couldn't even get out of bed, felt like I'd done ten rounds with Frank Bruno. GP (old school) was honest with my parents and said they couldn't give me any medicine as it was a virus and my body had to deal with it. I was off work for 2 months (basic office job) but for two years got every cold and bug going and was always tired. However what really helped was finding a GP who was trained in homeopathy. I know people scoff and think its a waste of time but for something that general medicine can't help it really did work for me. I also had a food allergy test and overhauled my diet

this has been my reasoning in keeping him off school this week. Although he’s not been well enough I haven’t given myself the hard time I usually would for making him stay home.

Glad to hear you haven’t given yourself hard time this time, rest important if is PVFS/ME and in flare.

Hear u about football, poor boy, perhaps he could still manage some but reduced and a v quiet timetable on day he plays? If he can without getting worse then ok to do.

Todays update- DS went to school. School fully aware of situation and happy to wait for more guidance from GP.

I let him train for 30 mins tonight after talking to his coach today. It’s usually 2 hours and so they’d planned a lighter 30 min session that DS could do. Was frustrated when I stopped him after the 30 mins but understands why. They have a game Saturday which he will start but me and his coaches plan to only let him play half. I’ve asked theo do this to play around with his tolerance really, I’m hoping that before any advice comes then that’s the right thing to do.

The GP left a message to say his blood work was fine- we are seeing her next week for a physical exam prior to a referral

@TattoedLady the money analogy is brill- and something DS would totally get. Gonna chat through that with him tonight thank you!

@Partey pacing and the dollar analogy starts at 18:10 :-

I know you said he has a good diet but to improve gut health you could try introducing a good quality sauerkraut (must be live ie not pasteurised) and live yoghurt or kefir (Yeo valley make one now, it’s very sour but nice in a smoothie)

Start with tiny amounts of sauerkraut - a teaspoonful a day. When you change gut bacteria it can be uncomfortable at first.....

Just want to mark on here as I'm going to need all this. Thanks to @CloudsOfCeonothus of giving me the link. I have my own thread if anyone wants to take a look m

Hope your son is soon helped and better @Partey.

@Partey, glad the school is fully aware and the GP plans to do a referral after a physical examination. Pacing the football sounds very sensible as a precautionary measure at this stage. I know it must be difficult for your son but hopefully if he does have PVFS this will prevent him from getting worse and hopefully will help him improve.

@SunshineCake1, glad the info in the thread will hopefully be useful for you too. Will look up your thread.

investinme.org/index.shtml

forums.phoenixrising.me/

www.tymestrust.org/

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf