Six-year-old constantly exhausted with tummy pain and poor growth

[Lcw29]

I've got a gut feeling something isn't right.
My son is 6 . He's exhausted all the time. He falls asleep in the car and asks to close his eyes to rest. He gets leg pains alot especially at night. He's emotional all the time because of tiredness.

He's behind in school and I'm sure it's down to fatigue. He's not growing as he should as the doctor has said he's not pur on weight in a year or grown much in height.

Bloods showed low ferritin but he's been on iron for a month and no change. Also had low ALP which they said could be low zinc but we're trying everything and no success.

Constantly complaining of tummy pain and yesterday was crying in pain then had awful diarrhea. He has lymph nodes visible in neck all the time.

The last week he's developed what seems to be an eye tic. Rapidly blinking both eyes and says they hurt. Doctor couldn't find anything but said if he developed a headache to go to a@e.

He's under ent for possible enlarged adenoids but not going until may for an appointment.

What would you do?

I feel I'm not getting anywhere with doctors but know that this is not right. A 6 year old should not be asking to rest!

They actually called me 2 days after so it shouldn't take too long. I'd give them a call if not heard after 5 days :)

DN who has ASD also has Ehler Danilo’s, you do have my sympathy.

Not sure if I mentioned in my previous post but low ferritin is often associated with ADHD.

I get so frustrated when GP’s dismiss symptoms like these when they know a stool sample should be tested for calprotectin levels ( inflammation levels of he gut)
My 12 year old daughter at the time had the exact same symptoms as your son. Blood test were done which showed low iron. Gp prescribed iron tablets which did nothing, if anything she became worse. Still gp just dismissed my concerns. Thankfully it was our dentist who referred my daughter to the dental hospital for reoccurring mouth ulcers, it was there they suspected crohns.
Turned out to be Crohn’s disease and the iron tablet was causing more damage to the gut.

So poster of this thread please request a stool sample is tested as your next steps, do not allow your concerns to be dismissed.

Low ALP can be genetic (I have it) and it's also associated with malabsorption conditions. Given the other symptoms you need to keep pushing for answers however hard it is. You can screen negative for coeliac but still have it for example.

Defo ask for a stool test - Crohns springs to
mind

As the coeliac test is negative, the next logical thing is a poo test for faecal calprotectin. If it's normal, that rules out gut inflammation, if it's significantly raised that would trigger rather more investigations.

Is he drinking more? How long has this been going on for? Just wondering about type 1 diabetes and whether his blood sugar levels have been checked?

Coeliac..you have described my granddaughter before she was diagnosed.

As an anaemic, i get aches in my legs when i’ve had a lot on that is running me down and using up my iron stores. I use it faster than i can get it back into my body. Takes ages to build up. Stress and lack of sleep really stops improvements. Orange juice helps. Eggs, fish, kiwis & red peppers too. Is he a fussy eater? Autoimmune disorders run in my family. I have the least detrimental out of the others but they include chrohns, type 1 diabetes, pcos & endometriosis… and lots of cancers unfortunately too. Has he had his white blood cells checked? The ceiliac option looks plausible also. I had a boss with it who said similar symptoms- could be even an intolerance instead of the disease so going under the radar a bit?

This so interestingly sounds a bit like my DD - low ferritin, possible ADHD (went on the Sen register at school in year one), tummy pains when younger, had bouts of dodgy tummy, no height or weight gain for a few years.

We did a dairy exclusion/dairy ladder for a while and she can have most milk now.

she had celiac and faecal testing through general peads - both negative. Does have some iron deficiency though.

she is much better now at nearly 7 at identifying an anxiety tummy.

She cannot drink Ribena though, which she used to like as gives her huge tummy pain - she swapped to apple and blackcurrant for a while but doesn’t really drink squashes now. She also finds icing on cake makes her feel unwell so she avoids cake.

she was discharged from general peads when her tummy pains improved but they sent her to the endo team for height - she is still being monitored by endo.

our gp was quite good at referring her to general
paeds as they were concerned she wasn’t putting on weight when I took her in for her tummy pains.

I hope some of that is at least slightly helpful OP!

My DS was diagnosed with coeliac disease at 6, also had negative antibody tests, as soon as I read your OP it sounded very familiar

Does he sleep well at night? The low energy and achy legs.. other than simply growing pains, could be a magnesium deficiency?
a magnesium supplement could help tremendously, but it’s a very specific magnesium.. a lot of them just act as laxatives, you need Magnesium Glycinate, not Citrate.. citrate will give an upset stomach in no time at all (talking from experience🤣)

I hax somewhat similar symptoms as a kid and it turned out to be Crohns. Probably that's not what this is, but worth checking.