Experience of post viral fatigue in a child

[FRANSINA]

Hi, my 9 year old DD has suspected post viral fatigue syndrome. It started with a 24 hour tummy bug in early December. She did not bounce back and now, nearly 2 months later she is blighted by abdominal pain, back pain, headaches, aching limbs and poor appetite. Blood tests show nothing and our GP, although concerned, isn't able to diagnose! Post viral fatigue has been suggested but it is by no means the clear diagnosis. And my poor girl! She has had an abdominal scan and spinal xray which revealed swollen abdominal glands. Cause unknown. She is barely managing 50% of the school day and her education is becoming very disrupted. Is there anybody out there with similar experiences? How did you manage it? Should I push for a referral and if so to who?!!! Thanks.

What things have been ruled out as treatment, are you sure she's not iron anemic?

Hi! She has had a full blood count, (definitely tested ok for iron), TSH, coeliac, bone function, other things which I cannot remember. Everything they can think of I think - she is going to have more bloods done to check she hasnt since developed any deficiencies as she is eating badly.

Your poor DD and it must be such a worry. Has the GP referred to a paediatrician? My 11 year old son was referred on to paediatrics after 2 months of persistent symptoms but 2 blood tests coming back clear. He'd been seen at GP surgery 4 times. The third visit was pretty dismissive (suggested because he was growing!) so I made an appt for the most senior GP who was concerned about the length of time it had been going on.

His presentation was different to your daughter's - started with a cold, developed persistent inflamed throat (but no pus), swollen glands in neck, fatigue and body aches. Paediatrician diagnosed him with Chronic fatigue syndrome. He did say it was a diagnosis based on symptoms and everything else being excluded.

Paediatrician was considering testing Ds2's vit D but told me just to ensure I got a supplement that includes it.

DobbinsVeil - thanks for your input. It is worrying. I think we may push to see a paediatrician. GP appointments are always 'fast-track' and rushed. I think diagnosis based on the length of time that symptoms are presenting is what the dr is holding out for. Meanwhile I feel that my management of whatever it is isnt very effective! How did you manage your son - lots of rest, reduced school timetable?

He's at secondary, so I've got him excused from PE for the time-being, though this was somewhat of a drama! His attendance is around 89% so it triggered the Attendance Officer. They were actually really understanding (this was pre-diagnosis). I've informed the school of the confirmed diagnosis, and heard nothing! But they may be waiting for the official letter, they had said previously when he got a dx they would be able to be accommodations in place.

He's not as unwell as your daughter sounds, he's just not quite well and if he gets a cold etc he's completely wiped out IYKWIM. The paediatrician recommended pilates/yoga, not too many carbs, plenty of fruit and veg, multi vitamin supplement, avoiding cold drinks (but that's probably because of his throat). Said not to rest too much and try and be active and keep a positive attitude. Bit hard when you feel like crap, but I can see what he's saying. He is going to write in his letter for the school to make accommodations in line with his needs, but wouldn't sign off PE indefinitely. Going back to see him again in 4 months.

It's hard to know what to do, as all the while you're hoping it will just resolve itself, or a test will come back with a minor yet treatable thing. If time is limited in the GP appt, I'd just put your cards on the table and directly ask for a referral to the paediatrician. "Can you refer to the paediatrician please". As waiting and seeing can only really go on so long. Can always cancel if she makes a full recovery.

And it was roughly a 2 month wait to see the paediatrician from when the GP referred, though that will vary area to area.

Thanks for your help DobbinsVei!

Ds was very similar this time in year 4. I remember taking him to the zoo at Easter. He was much better than he'd been even 1 month previously, but we walked from bench to bench sitting down to watch the animals. Before that he'd have run everywhere and not wanted to sit down at all.

He was never formally diagnosed, because he started getting clearly better about a fortnight after the first paediatrician's appointment, so it wasn't worth pursuing it.

We're 3 years down the line and basically he spends the winter being generally ill, and little illnesses floor him quickly. But most of the time he's able to keep going and you wouldn't know. It has left him with a strong tendency for headaches, at time pretty continuously. I'm hoping they will clear as he grows though.