6 year old medical issues - any ideas?

[LM119]

Hello 🙂

Unsure if I’m looking for answers or reassurance or just ideas of what could be going on.

My son was born at 37 weeks, normal weight and normal development. Diagnosed with milk allergy at 4 months. “Normal” toddler years.

Around Jan a year ago (second term of reception) he started getting lots of upset tummy’s, lots of time off school, which resulted in him not wanting to go, but fine once he was in. Everytime he had an upset tummy it was 48 hours off school so understandable that he didn’t want to go on. Kept thinking it was exposure to milk as he often seemed okay in himself and no one else got sick.

By April roughly he was complaining of feeling sick all the time, he’d become quite pale and his energy levels seemed to be dropping. He didn’t want to do anything. Even on days off school, special occasions, holiday he just wanted to “rest”.

Spoke to the GP and we were concerned for Coeliac Disease, so they arranged blood tests early June. All came back normal, just a slightly elevated white blood count which could have been from tonsillitis the week before, no coeliac. GP referred to paediatricians who rejected it and directed us to dietitian.

In addition to feeling sick, tiredness and being very pale, he then started getting headaches around September. Had an eye test who said that it was barely a prescription but let’s try them out. They’ve helped a bit.

Dietician in October suggested removing other stuff as a trial but said they were unsure the symptoms were linked and to go back to GP.

Initially this was dismissed, because bloods were ok in June, try the dietitians eliminations.

Any cough, cold or sneeze he’s been near since September he has caught.

School then raised concerns about his attendance but also his tiredness at school. They said you can see through the day that even things like forming his letters become more and more difficult. They are concerned that he is struggling to retain information and something he practices in the morning is gone by the afternoon, not from lack of trying as he becomes frustrated that he knows it but “its stuck in his brain”

Fatigue is still a really big thing, lots of stomach pain, less headaches but still there and in late December he started complaining his legs hurt, at least once a day. People now comment that he “looks ill” because he’s so pale.

He’s always been a good eater, will try anything, loves fruit, veg, meat and still is but I would say he eats a lot less because when eating he complains his tummy hurts. No obvious weight loss.

Today we see a lovely GP who is going to put in a referral to the paediatrics as urgent “not because she’s worried but something’s not right and they shouldn’t have declined it last year”

I have fallen down the Google traps the last few months looking at things it could be. Has anyone had any similar experience?

My dd had stomach issues right through primary, random it seemed as we never managed to isolate any particular foods. It eased off gradually and by the time she hit secondary school it wasn't an issue. She's an adult now with no issues. She was also very tired napping after school. Do push for that referral because kids can say one thing hurts when it's actually something else that hurts

I was the same as a child, eventually diagnosed with multiple foods allergies aged 8. Transformed my life and my energy.

I'd recommend following up with the paeds to make sure they don't decline it again.

Also, make sure you get a repeat cealiac blood test done, it can sometimes give a false negative.

Have you tried him on a dairy free diet? He could be lactose intolerant

Gosh you must be so worried. Just a few thoughts...have they done a stool sample test? Have they checked for diabetes? Really hope you get some answers soon.

They did a stool sample around the same time as the bloods and said it was ok,
Diabetes was one of my concerns but they tested urine which was clear and said they wouldn’t do a blood test for it because diabetic children go downhill quickly.
Hopefully it’s nothing and I’m worrying unnecessarily

He was diagnosed with with a milk allergy at 4 months and has been on a dairy free diet since

Hope the referral comes through quickly. Couple of things, was his Vit D checked? Also it’s worth cutting soya. The proteins in milk and soya are so similar that there is a very high link to people who have a milk allergy to also have a soya.
Did they give any advice to what you should be cutting? Remember one at a time etc etc. you probably know all this from having a child with allergies. If you do want some allergy advice I’m happy to give some as a parent with a child with multiple.
What about his iron? What was it? Was it borderline? If they say “all bloods were fine” ask for actual numbers. Sometimes it’s just on the cuff of being abnormal. Ask school to write a few notes from what they’ve viewed and seen. Take it to the appointment, hand it to the consultant and make sure they read it. Sometimes a non parental input is helpful.