What is wrong with my DS (9); long term headaches, stomach & more

[Freetodowhatiwant]

I know this isn't a medical advice forum and answers might be from parents rather than doctors (but if you're a doctor do shout!) but I am at a bit of a loss about my DS (9) and his ailments. I was hoping that someone might recognise the symptoms or be able to help in any way. I will try to be brief but there are rather a lot of them and I am pretty sure they are all genuine.

It started/became apparent when he was around 5 years old and he had Campylobacter (food poisoning) and a big bout of diarrhoea. He then started to have this regularly until at one stage he had had diarrhoea for about 5 months every day about three times a day. It was really awful for him. Various tests were done with no conclusion. He started to also have severe anxiety about going to school (possibly because of the toilet trouble) and also issues with sensitivity to shoes/socks/clothes that went on for a couple of years. He still is funny about shoes and socks.

We eventually cut out gluten and this seemed to make a massive difference to his diarrhoea. Lockdown and moving schools for some reason seem to have helped with his school anxiety and he now attends well. But he still has a variety of health problems, aches and pains and I feel so sorry for him. He was discharged from paedeatrics to do with the stomach ache (we also moved cities) but we are waiting for referrals for his achey feet and also his headaches.

His main symptoms at the moment are as follows. No idea if they are connected or not so I thought I would just list them:

Regular headaches. Sometimes a headache that lasts all day. Usually in the front part of his forehead. Eyes have been tested.
Sometimes blurry vision. (as above eyes have been tested)
When he gets the headaches he can feel dizzy and nauseous. He looks really tired at such times but says he doesn't feel tired, just dizzy and nauseous

Intolerances: Wheat seemed to be a big one but we recently did a hair test and it came back with gluten, all dairy, tomatoes, chickpeas, salmon, squid, rice and one or two other things. We are trying as best as possible to limit these.
He still gets regular stomach ache but no longer has the diarrhoea

He also seems to have had a cough and cold for well over a year and a half now. He often has a sore throat.

Aches and pains, especially in his ankles and feet and knees
His knee sometimes goes too far back and he can buckle when running
He DOES have an overpronation and a physio gave him some exercises but this doesn't seem to have made any difference

The GP suggested it might be abdominal migraines that start off in children with stomach problems and progress to headaches. It doesn't now stop him from going to school but to feel sick and headachy all day at school, which he sometimes says he does, must be awful. And although we do go on long walks and don't stop doing anything he is constantly giving a running commentary about his aches and pains.

Any help or experience or ideas would be appreciated! Referrals are taking months to come through.

Hi there..

I'm not trying to diagnose him and obviously doctors know more than me but I had a similar thing with my DD.

She had her appendix out and it seemed to develop from there.

She started having awful headaches and really fatigued all the time. Missed loads of school and had several admissions to the children's ward.

MRI scan etc etc.

In the end the consultant ran a series of bloods and discovered that she had antibodies for glandular fever. She said this could have caused the long term fatigue.

The other thing was her vitamin D levels were incredibly low.

She was prescribed a 3 month course of prescription strength drops to get her levels back up to normal.
She takes a supplement every morning now.
Some people cannot take in enough vitamin D from diet alone and need this extra boost.

She's like a different child now, thriving in school and out.

Such a simple thing. I can't believe it wasn't picked up by the GP in the first instance.

Might be worth looking into.

Hope he gets better whatever it is, nothing worse than a poorly child and you don't know the cause.

Thank you for your response @naughty40me. So glad your daughter is doing better now. He did have all his bloods done a while back but I will definitely get them to check again as soon as we get the long awaited referral. Yes it is awful seeing them unwell and not knowing what it is.

Has he been checked for hypermobility? If you Google the Beighton scoring, you can do it yourself.

Aches and pains plus foot problems sound like they'd tie in with that. It also has a load of comorbidities with gastro issues, food intolerances and migraines.

My DC has only just been diagnosed aged 10. Lots of aches and pains, v easily fatigued but also fidgety, migraines, v easily constipated, multiple food gastro allergies.

Have a Google....

Also, not a doctor.

The stomach aches, sickness and headaches does sound very much like migraines in children. Coupled with the tiredness and paleness you mention that goes along with it. I've suffered migraines for years and have got pretty good at spotting when I am going to get one and aching arms, shoulders and neck are something I get the day before I have a migraine.

Food poisoning can really knock about the balance of the digestive system. Hopefully cutting out the things you now know he is sensitive to will help.

I feel for you, it must be awful not knowing why or what to do.

I would start a good probiotic, order a comprehensive stool sample test to look at gut Flora, see a nutritionist or possibly naturopath, look into supplements, particularly amino acids. Not sure if a hair test is an approved allergy test - speak to allergy UK- he will end up with joint pain and other problems if restricting diet unnecessarily. Stomach pain can quite often be from constipation issues in children, sometimes hard to diagnose, get go to check and if unsure could try to request an X-ray, though they don't do this often.
I would investigate Ehlers Danlos syndrome as that can also have gut/headache implications. Keep an headache diary and limit any calpol so he's not having it more than 10 days a month. Very tricky, good luck getting to the bottom of things. Hope he improves, so hard when they're consistently struggling but not obviously sick.

Also, after a stomach bug it's common to be lactose intolerant- try changing to lacto free milk. Helps mine enormously!

Coeliac...but you would need to go back on gluten fir 6 weeks to test

agree @Embracelife Coeliac. You pretty much listed each (if not every one) of the symptoms my niece had a long while before diagnosis

Where did you go for this 'hair test' - this isn't a standard test for allergens. Usually rast blood tests and skin prick tests are used to detect ige-mediated allergies, and non-ige allergies (AKA 'intolerances') are tested using elimination and challenge diets. I'd be very skeptical at any one using a hair test.

Hypermobility maybe asd.
Celiac
Migraine starting abdominal.
Ibuprofen works better.and might last long enough for schoo l
l

I thought also thought coeliac, but if symptoms are persisting long after taking him off gluten, I'd be more doubtful about that (although some also react to oats...). Could also be non IgE allergy to something else - dairy would be a strong candidate. BUT the structural issues you're describing with feet and knees don't really fit with that.

I totally agree with @Dollpiglet that hair tests are not a diagnostic test - and I say that as someone with two kids with multiple non IgE allergies.

Having re-read your OP, the hypermobility/ehlers danlos would be the diagnosis that would pull all those symptoms together. Does he by any chance have very strongly fluctuating blood sugar?

Definitely try to get further referrals from your GP. He could have an intolerance or allergy, but I would have expected this to be picked up by now.

I'd also look further into his emotional state right now OP. A bit of a curveball suggestion, but it sounds like he really struggled badly with anxiety around school, there is potential that his symptoms could be psychological in origin. Have a Google about functional neurological disorders (FND) they're surprisingly common in the general population and can occur in children too. That doesn't mean he is "making them up", they will be as real to him as if he fell and broke a bone, but it can often explain difficult to diagnose complaints.

I have had children with similar symptoms. (Adults now.)

Ehlers Danlos, autism, POTS, mast cell activation syndrome, bile acid malabsorption, interstitial cystitis, vitamin D depletion are a few of the diagnoses.

I also thought ehlers danlos.

If you can get referred to the children’s chiropodist on the NHS, he should be able to be fitted with inserts to slip inside His shoes that willl help correct the overpronation which can cause leg, hip and back pain as well as foot pain. My children had them from 7 or so into their 20s for overpronation. I also think he sounds like he has hypermobility. Hope you get a correct diagnosis soon.

My child had very similar symptoms they now have a diagnosis of CFS/ME. Also EDS is worth investigating.

Could he have Coeliac? Would need to not only limit but remove completely - save oven etc no contamination at all

@Freetodowhatiwant just wondering how things are, and whether you felt any of the suggestions on this thread seemed a good match for your DS?

Apart from the longevity of symptoms it sounds like ds’s symptoms when diagnosed with glandular fever. Nausea I would say was his main symptom along with the forehead headache- migraine was mentioned too prior to blood test

SO sorry to have left it so long, just updating in case anyone is interested. Actually not much to update but over the summer we put him back on all foods we had taken him off just to see what happened. He's been on all foods for about 8 weeks now and is back at school. Nothing seems to have changed but he is still getting bad head aches and limb injuries. Still waiting for NHS referrals that were made mid June. Have finally persuaded STBXDH to let us use the private health care for him so am hoping to make an appointment.

Thanks so much for the input - I do think he his joints are a bit hypermobile so maybe EDS might be something we consider. I have found the thread really useful so thank you. Will update if we get any more info. Here's hoping we get help, his headache was so bad we had to stop on the walk back from school today and sit on the pavement.

Feel for you. I’ve had similar issues since the end of July. Will be watching the thread for other answers

Thanks Rivermonsters. Sorry to hear you're going through it too. I hope to see the private consultant on 27th Sept. but I am seeing if there's any cancellations for earlier.