Any advice on these symptoms?

[rabbitrabbit]

Hello, am at a loss as to what is wrong with my ds (3.6) so, firstly, apologies for the long post. Since April/May this year there has been 'something' wrong and no-one seems to be able to work it out.

He had chickenpox in April though he seemed to recover well from that. We also went through periods when he would withhold his poo; again that seems to have resolved itself.

For the last six months, save a few weeks in the summer, he has been constantly exhausted, weeing all the time (this comes and goes, will last for a few weeks, disappear for a week or so, then return), he's either ravenous or not eating and doesn't want to leave the house to do any of the things he wanted to do before.
Previously he was always on the go. Always wanting to be out and about in parks, playgroup, soft play etc. Now he just says that he wants to stay in. His energy seems to come and go; he has a mad half hour of running and then suddenly his cheeks are bright red and he can barely keep his eyes open.

He has been checked twice for urine infections and once for diabetes. All were negative/clear.

I'm completely at a loss. I would appreciate any ideas or feedback.

TIA x

My DD had chickenpox in reception, pretty mildly. However afterwards she had loads and loads of time off as she caught every bug going and was totally exhausted. She was also checked for diabetes (DH has it) and whilst waiting for the test results I remember being pretty convinced that the test would be positive, but it wasn't.

Hi Kittypickle, thanks for that. I was absolutely convinced that he was going to diabetic. A google can be a dangerous thing!
Was your dd okay in the end? I hope so x

bump-be grateful for any advice or ideas

Was the diabetes test on urine or blood & how long ago was it? If it was on urine it might be worth doing a blood test instead if your poor ds can stand it.

could a child get post viral fatigue syndrome? could be worth asking your doc.

poor you, hope it resolves soon xxx

Thanks both noonar and liath. The last test, for diabetes, was Monday. I wondered if it were possible for it to be incorrect?
I know I'm going to have to get blood tests done but I am just dreading it for him. He's so low at the moment and he just sobs if things get too much for him

I looked into glandular fever and post-viral fatigue and it's worrying. Thanks for the responses x

slightly nasty thing to sorry about but I remember hearing that parasites (living in the intestine) can cause constant weeing/appetite fluctuations, though presumably there'd be some poo implications as well. May be worth looking into - I think I saw this on Holby or ER so could be a red-herring. Hope you find the answer soon, whatever it is.

Poor wee thing, hope you get to the bottom of it. I'd consider getting a paed referral if the GP draws a blank, if only for peace of mind.

Thanks again everyone. I've made an appointment with a recommended gp so keeping our fingers crossed. Thanks again x

Hi my daughter has just been diagnosed with post viral fatigue she is nine. She has been on and off ill since easter and hardly been to school as she intermittantly poorly and the school either send her home or I keep her off. After blood tests and mri and ultrasound and countless gp visits and me insisting that something was wrong she spent a night in hospital with severe abdominal pain after which I saw gp to insisted he speed up the neurologists appointment! As a result of a mistake between hospital and gps I was called to childrens ward who thought she was still in pain. As we were there a neurologist saw her and its so frustrating as she looked fine yet had been exhausted the hour before. He did the tests and said it was post viral fatigue but I have no information about this except to grade her activities and that if she had a good day with higher energy levels then she can't do lots as she will pay with several days of illness and fatigue. This was invaluable as I was encouraging activities on her good days. I would advise to try doin this and limit all activities and also keep a symptom diary my daughter has fatigue headache earache sore throat forgetfullness joint pain is unusually weepy and clingy and gets easily distressed. Keep going to the gp and follow your instincts.I am hoping the original neurologist appointment so I can maybe get more information and support x

Sorry your son is so poorly, what a horrible set of symptoms for someone so young to be experiencing. I have M.E (can be called CFS or Post Viral Fatigue, they are all basically umbrella terms for similar things) and do have friends with the condition who have had it since they were very young children. Because so little is known about it the medical profession don't really understand how it starts or who can develop it, at what age etc. Definitely mention it to your gp when you go and see what he says. Have they done any other blood tests? If they did diagnose PVFS then they will check for lots of other issues beforehand as there is no test for it, it is diagnosis based on exclusion of other things.

If he is getting exhausted easily then I would really stress that you encourage him to rest where possible- whatever is causing the problem, whether it turns out to be this or something completely different, if his body is getting tired then it will be because it needs rest to help recover. Don't push him if he gets upset and can't manage something. Perhaps look for activities that are gentle for the time being, until you have more of an idea of what is going on. Like angielou said the more you push the worse you end up crashing (I realise this is not an easy thing to do with someone so young, I can't imagine how hard it must feel right now).

I hope that you can get some answers soon; with these sort of symptoms it is the not knowing that is scary, it makes you feel very alone and vulnerable. I hope that it comes back as something that can be treated and he is on the right road soon x

Angielou just wanted to add to you that has your daughter joined AYME? It's the association of young people with M.E, it has a message board (free to join, is moderated- I used to be one of them!- and only accessible to members) where youngsters suffering with chronic fatigue can chat and get support from one another. They also have penpal/email services, they send a birthday card to members each year, there is a helpline for both members and parents to ring with lots of information about schooling issues, how to cope etc. It might be worth looking into- having to miss a lot of school gets lonely and I imagine your daughter finds it all a lot to come to terms with. I was 22 and i know I did! Just a thought, I hope she feels a bit brighter soon x

Thanx so much I will tell her about the group she loves the computer so that will be good. That's why I joined this site cos I wanted to get in touch with others going through this and to tell parents who are getting fobbed off or disbelieved to keep on goin. I have a file now or all a daily symptom diary and letters from her teacher supporting me and I will give that to doctors from now on . I am only guessing this is the same as ME ! Thanx again x

www.ayme.org.uk

This is the link . They were invaluable to me, despite being a lot older! But there are members starting from the age of about 7 so lots of people to chat to. It is worth checking out TYMES Trust (young ME sufferers trust) as well, I think they do newsletters and offer a lot of medical support. The younger you develop post viral fatigue the better your chance of a good recovery so hopefully in a few months or years this will all be a distant memory for her. You are doing a brilliant job trying to support her, you have no idea how many people- even people's families- are disbelieving. She's lucky to have you x

Sorry rabbit for hijacking.

Thank you so much its so lovley to get some support and information x rabbit keep on taking your poor boy to the doctors and trust your mothers instinct. Don't let anyone make you feel you are wrong and I would advise to do the daily diary it reasures you that you are right and proves to doctors something is wrong.