concerned about my sons state of health

[kathy79]

my son is 12 and has just started secondry school. he has never really had good health ever since being diagnosed with ketotic hypoglycemia at 2 yrs which affects him mostly when he contracts viruses.in the last 6 months he has been very tierd and lythargic, very pale, clamy skin, frequent severe stomach pains with bouts of diareaha. (apparently gastritus/ virus) he has bad headaches nearly every day(under investigation at hospital)
secondry school have been concerened as when he has done p.e he has become so tierd that he has unable to complete the tasks or he has pushed himself to the limit where he cannot keep his eyes open or difficulty moving. they seem to think that its due to his blood sugars and the fact his body cannot deal with that exhersion. the doctors say this isnt a concern as they have recently done a special diabetes check that checks the average 3 month levels and they say there is nothing unterward. he has also had a thyroid check and that was normal too. he seems to catch every virus going which always knocks him around something rotten.

its difficult to wake him in a morning even though he has the right amount of sleep, he looks like he hasnt slept in a month very pale and often continues to fall asleep whilst eating his breakfast. its a constant battle to keep him awake, but he never compalains and always puts a brave face on things.
he loves the new school and gets very distressed when he is unwell and cannot go.

im at my wits end, doctors are mystified, school are sympathetic due to his complex sen statement, but i just want my son to have some good health and wellbeing.

any advice welcome

Does he have any food allergies or intolerances? Has this been investigated?

Oh bless you, it's so horrible when your children are poorly and nothing or no one seems to be able to help. I'm not sure I can be much help but my 4 yr old was similar in that he would catch every virus goings and it would alway knock him for six but our main concern was his loose stools. We cut dairy out and this seemed to help everything but he was still 'going'far too much, sometimes 5/6 times a day so we were recommended to up his fat intake and this has made a dramatic difference. Among other things, we think that as his gut works too quick his body doesn't have time to process the nutrients and so he was deficient in vitamins meaning his immunity was compromised. This is just our experience and like I said not sure I can be of help but there might be some info here that you could use? Good luck, really hope you find a solution soon x

I am sorry you are going through this. It's heartbreaking when your little one is ill. This may be way off the mark but have you had him checked for cystic fibrosis? It don't want to alarm you and I suspect your GPs would have tested if they thought that was it but its one that is worth checking off the list.

Food allergies can also make you feel rough as you can't absorb nutrients etc so as the others said, good to eliminate that too.

Or Epstein Barr virus? Has he been checked for that?

Maybe some thing like autonomic dysfunction.

Defintly be thinking something autoimmune, with his current condition.

Hooe yiu can get things sorted out xxx

Could he be coeliac? It has very similar symptoms.

thank you to everyone for your kind words and suggestions. he is supposed to be going back to school tommorrow! but has been so tierd this weekend hes only got out of bed to go to the toilet (virus or not). he went to sleep at 9 friday night and slept til 1pm saturday.then was asleep for 2 hours in the day before going to sleep at 9.30 last night. like i said he never usually complains but he says hes really tierd.

either way i think its going to be another trip to the doctors if he dosnt show any improvement today. the doctors look at me as though im overreacting or nuts. might query some of the suggestions made though.

overall not a very good start to the term

Have confidence in your own instincts and don't let the drs make you feel neurotic. I've been fobbed off too many times to later find out I was right to push for more investigations. Good luck

Blimey any DP who thinks that amount of sleep for a 11yo is normal needs reporting to GMC.

I also second demanding full bloods including autoimmune checks.

I would also mention that the school are concerned your DS is fighting it too much and pushing himself so they don't just assume he's being lazy.

Good luck

GP not DP!

I would second what Booby says too. Good luck x

OP - A lot of his symptoms are consistent with Coeliac disease. Dd has coeliac disease, she had many of these symptoms before diagnoses. Ask for him to tested but do not put him on a gluten free diet before the test, otherwise the test will come back negative.
Agree that you should trust your instincts. Make a fuss with your GP. This is not good enough.
Hope he gets better soon.

So sorry to hear this - how worrying for you.

Think you have received great advice and I agree checking for coeliac.

Also could you ask for a stool test to check for parasites?

Don't let the doctors fob you off. Your instincts are always right.

Agree with the poster about getting enough of the right fats ie butter/coconut oil/olive oil. I'm currently getting our family onto a way of eating espoused by a guy called paul jaminet - google him for more info. Seems to help all sorts of odd health issues.

Very best of luck x

Some news after hospital appointment yesterday. The mri scan showed a problem , it apears my 12 year old has a wider apperature at the base of his skull causing slippage/ sinkage at base of brain causing pressure, resulting in severe headaches. He is now being refered to neurosurgeon at birmingham childrens hospital.

Oh bless him. I hope you get an appointment quickly.

Thanks for letting us know. I really hope it's something that can be sorted as easily as possible. Good luck x

Hope you DS gets sorted soon OP.

Thanks for your kind words.

My stomachs been in knots since ive been told, not sure what to expect really. But ive been told birminghsm childrens is excellent though.
X

How frightening for you all. You have a reason for his illnesses and hopefully they will be able to treat him, my own DS has a brain tumour and anything wrong in that area is frightening. Look after yourself as well as your DS.

Hi guys

my son last week had a fit and was taken to hospital. He has had tests regarding severe fatigue iron/ renal/ b12/caeliac and glandular fever all of which were negative.
He is still complaining of extreme tierdness, not being able to feel hot and cold sensations when his head feels like its on fire. He loses his balance with the head pain now and says he loses blocks if vision in one eye.
They did basic neurological exam at hospital and they said that was fine.
He is still pale and having stomach issues too feeling nauseus too.
Birmingham childrens appointment is 20th nov and all my son has said all week is he wants it all too stop as the pain is 9/10 and medcine isnt working.
He has also got appointments for eeg and ultrasound of tummy.
I shattered and am hoping we get the answers we need so hes not suffering anymore and he can recover as hes so miserable.

Can you push for the neurosurgeon to see him more urgently after the seizure. It sounds to me like a worsening of his symptoms given the seizure, and it is one possibility his other issues are related to pressure changes in the brain causing nausea etc. Not that the rest of the brain isn't important, but particularly that area at the back is extremely important. Maybe PALS can help you get him seen more urgently if you can't get anywhere with a basic ask yourself?

I would go back to a&e with symptoms like that and insist on immediate scans etc. it sounds v scary, best of luck.

Was your son an outdoors child before he got ill ? He also needs testing for Lyme disease but because it runs in cycles it's a tough catch