Unexplained child health issues. Can you help

[sadscotmama]

Hi. I’m a newbie. My DD 8 has had severe headaches and stomach pain every single day for months. . She isn’t attending school and i don’t know what to do.

AIBU to ask for advice here online to ask what you think the cause might be, maybe a parent has gone through the same with their child. Then I could go back to my doctor and say it could be XYZ.

They don’t seem to be investigating and calpol and ibroprofne aren’t helping with the pain.

She is nearly 9, was a happy very energetic active child. Now she spend her whole day in the sofa or bed, on the IPad or tv. She has headaches several times a day which vary in intensity. Last nights he cried jerked to sleep and finally does off around 1am.

Shw also has stomach pains and is very lethargic and has low energy.

Paediatrics told me to put her on a wheat and dairy free diet as she was intolerant as a baby but outgrew it.

Its not helped. I’ve also cut out migraine causing foods like chocolate etc. All bloods and her stool sample came back clear.

She is just deteriorating and DH and I are confused as some hours she seems like her old self then all of a sudden she looks and feels ill.

Has anyone gone through this with their child?

She always says she feels dizzy and has no energy.

Hi, sorry you’re going through this. I’m not a doctor but I’ve been through loads of tests myself. Is she anemic? I would be pushing for an autoimmune panel, to check for autoimmune disorders, which are notoriously difficult to diagnose. Celiac was my first thought although you say you’ve tried gluten free. But if you’ve ruled out other things and what the things you said I would try autoimmune - check a list of them through a reputable source like the NHS website and go through symptoms, to have something to discuss for your gp. Do you have resources to get private testing?

You have to insist on an examinations and areferral to a pediatric ward with your doctor. Have the doctors considered celiac disease?

I was going to suggest stomach migraines but it sounds like maybe that's been eliminated? Have they tried medication for migraines to see if it helps - triptans I think?

Have they done blood tests for coeliac?

Have you kept a food diary? Years ago I did a low fodmap diet to try to find triggers for my Colitis, it's really restrictive for about 6 weeks and then you systematically introduce types of food. Might be worth a try?

She tested negative to celiac and excluding gluten and wheat has made no difference.

I want her to have a CT or ultrasound scan because I’ve noticed when she is going to the bathroom before bed, she is in pain and that’s when her headaches are worse. I called Spire but they said to call back on Monday now.

Ive pushed for an MRI and it’s not available in Scotland privately.

re

My DD had something similar but was younger. We had bloods done to check for iron /coeliac / liver panel / full blood count etc.

Then a referral to have an ultrasound of abdo - full digestive system and kidneys / bladder review. If you have had basic bloods done I would push for this to the next step.

After that as other PP said autoimmune markers blood test would be my suggestion.

I would also look up the NiCE guidelines for stomach pains in children, this is what the doctors should be using so if they aren’t following that, mention it at your next appointment. I.e have we ruled out x,y,z following the NICE guidelines. Could help you feel more in control

Sorry this is happening. I would be pushing and pushing for more and more tests

Could it be anxiety/stress/bullying at school when they were going?

Have eyes been tested?

Could you get a pair of those blue light reflection glasses to wear during screen time?

Dyslexia can cause stomach and head issues

What about excercise ?

Too much/too little sugar ?

Vitamin d

Would those sleep patches for kids (usually for those with adhd) but anyone can use them, might be worth a try

Try changing your child's bedroom around and new pjs to get a fresh start

Lavender spray on pillow and temple and around the house

Dim
lights gradually in the house before bedtime

Rub on oils for temples and wrists

Could it be chronic migraine?
There are a range of different triggers, not just foods, especially in chronic migraine.

Stress, lights, noise/sounds, lack of sleep, certain websites, dehydration, even eating half an hour later than usual can be a trigger.

Look up "chronic migraine triggers reddit" to see people's range of experiences that you won't find on the NHS website.

Have you had her b12 levels checked? Look at symptoms of low b12 in children, I believe headaches, stomach aches and low energy are all on there xx

Was it just standard blood test for coeliac disease? As there is a possibility of a false negative some people don't produce the antibody they test for, so that needs to be checked too.

Thanks everyone for taking time out to reply. I'm not sure how to respond individually.

After the suggestions, I'm going to cut sugar out from today.

Also re chronic migraines, her dad did have them growing up but had triggers. I can't see any sort of pattern to DD head and stomach pain.

I think next step is to ask for an ultrasound scan of her abdomen. She is worse after going to the toilet before bed and her headaches get
Worse around this time too. During the day it's medium pain I would say but at night it's stopping her from sleeping.

I do occasionally give b-/ drops, irons came back okay.

Celiac was tested when she had gluten in her diet and omitting it has made zero difference.

It's awful that the only thing she finds joy in now is drawing and now she has started drawing about being ill and medicine not working.

Forgot to say I paid for some private blood tests recently as I got really fed up of my IBS / sickness. I got a wellness blood test and an allergy food test (needs to be IGE and blood….ignore any hair or IGG tests).

It screened for 20 plus allergies and testing b12 / iron etc. it’s was around £200 for both. You have to lance your finger at home and drop blood into a vial. It’s not pleasant but gave me some answers by GP couldn’t. Two food allergy’s and boarderline b12 / low vit D.

https://www.yorktest.com/products/food-allergy-test/

www.forthwithlife.co.uk/health-tests/wellness/baseline-plus/

With b12, you will not get an accurate result if you have had supplements for maybe 4 months beforehand xx

I would also look in to whether it is Long Covid and consider posting in the Long Covid Kids Facebook group as well

Just to add please read up on Long Covid, POTS, MCAS etc as this could all be part of what you're seeing. The NHS is not set up for any of it and is often not interested/disbelieving in post infection illness and very frequently will decide it is psychological.
An initial thing that can help with the stomach pain is antihistamines.
Lots of information on the Long Covid Kids website.

Thanks for all the advice. We had to go to out of hours as DD was in severe pain for hours and nothing helped.

The doctor was brutal and was more concerned about us wasting time as DD looked fine. She said I come across as an anxious parent and that's what is possibly contributing to DD's poor health.

I'm just dumbfounded. She said I need to be careful I don't get labelled as a hypochondriac as if it's out in medical notes " no doctor will take me seriously."

Prior to this DD had rarely been seen by any medical staff.

They can't give anymore painkillers to manage pain.

She is going through ore- puberty. I'm wondering if this is causing her ill health.

Does anyone have experience of this?

Pre- puberty

https://www.alderhey.nhs.uk/conditions/patient-information-leaflets/migraine-children/#preventative-medications

I'd say migraine. Push for specialist if go can't prescribe preventative medication.

Has she had a stool sample taken? That will test for white cells present in her poo. Higher white cells count indicates diseased colon.

I have ulcerative colitis, but before my stomach got really unbearably painful, my main complaint was headaches. It was probably due to the dehydration and loss of blood via my colon (so slight you can't see).

You say she has a lot of headaches - how many hours a day does she look at a tablet or tv?

OP@sadscotmama how often are you giving meds and what meds? Neither ibuprofen nor paracetamol should be given on a long term regular basis for a child , both can cause headaches and other symptoms due to medication overuse. Im a bit perplexed about why your GP hasn’t referred you on to paediatrics ,considering she must be missing a significant amount of school, this would normally trigger interventions, has the school attendance officer not been involved?have you ever kept a diary for a couple of weeks of her symptoms, behaviour and medication / food ?

Migraine seems like the most likely especially as her Dad had them. Where I am, the GP couldn't prescribe for migraine so we were referred to the hospital and got sumatriptan nasal spray, although DSs episodes were monthly rather than daily. He also had stomach pain from about age 9 (migraine didn't start till he was 11). For the stomach pain, Gaviscon worked like magic but they didn't want him on that longer than a month and he eventually got omeprazole which sorted it.

Don't ever feel you are wasting their time. The Dr you encountered I think is thankfully rare. They are clearly in the wrong job. It's a desperate situation you are in and I hope you get the answers you need.

I would stop the ibuprofen immediately as it causes stomach pain and damage if taken for more than 3 days if you are not giving medication to protect the stomach.
I would also stop the screen time because if it is migraine the screens will be aggravating it.
Look up abdominal migraine.
Look up adenitis.
As pp have said, consider hormonal changes as this can cause headaches too.
Vit D deficiency is another consideration.
What colour and consistency are her stools? It is really important to check this if she has been taking ibuprofen for more than a few days because it can cause gastric bleeding, which in turn causes anaemia.

So sorry you experienced this OP, that doctor was seriously out of order.

What is your family set up like, do you have any other children?

Have there been any significant changes/stresses recently?