Ongoing stomach/sickness issues with DS (14)

[MrsJBaptiste]

My poor DS (14) is suffering so much and I just wondered if anyone has had a child with these issues and what they might suggest.

For info, DS is coeliac but this is managed extremely well, he will not let gluten near him and his most recent markers show that they are now completely normal after being sky high before he was diagnosed.

Since the summer, he has days where he wakes up with severe stomach pains and/or is retching and sick as soon as he wakes up or as soon as he tried to eat anything. This isn’t every day but on the days he’s like this, he’s deathly pale and will go back to bed for an hour or two before waking after it seems to have passed. He’s lost a lot of weight recently too as he’s obviously nervous about eating thinking he’ll be sick. This is obviously affecting school and he’s had 6 days off so far since September. Sometimes he’ll plough on and get himself to school because he feels he should but we feel so awful and if I’d been sick and felt terrible, I know I’d want to stay off.

We’ve been to the doctors and number of times, had additional online doctors appointments and are currently waiting for an appointment with Peadiatrics Gastro. We just feel so helpless as the doctors don’t seem to know what to do but it’s awful seeing him like this. He’s gone quite withdrawn and says he feels so down with it all and just wants to burst into tears sometimes (so not normal for a 14 year old boy).

Does anyone have any experience of anything like this?

For info, he’s tried - Gaviscon before bed, Omeprazole (not currently taking these), anti-sickness tablets and is currently on iron tablets.

Thanks.

My son (14) is going through something similar at the moment. He has diagnosed IBS and it’s ruining his life just now. He is struggling to get to school and he rarely lasts a full day at the moment. He’s so down in the dumps. I really do feel for you, and your son, it’s the worst feeling not being to help your child. The impact health problems can have on them is devastating to watch. It’s heartbreaking. But I’m on a mission right now to get to the bottom of this. Obviously my ds is suffering in a different way and his condition is life long but it can’t carry on the way it is right now so here are a few things we have done to try and help him, there might be something that leads you to a solution:

-Allergy tests; both NHS and privately (still waiting for private test results). It turns out he’s developed an intolerance to wheat, tomatoes and peanuts which he didn’t have when he was younger. This was a skin prick test and the results were instant. He’s also had a full blood test done (again - 3rd time in 2 years) and if your ds is diagnosed coeliac he may have had all the tests done but it could be worth asking your GP to see if they’ve done allergy testing. My ds blood test will also check his thyroid as an overactive thyroid can be part of IBS and probably other health problems? Has your ds’s thyroid been tested?

• Faecal sample, we’re still waiting for results to comeback, hopefully this week. This test is for infection and parasites. It’s probably not the cause of your DSs problems but could this test flag something up? It might worth asking your GP to run the tests.

My DS has been tested for all the sinister illnesses like leukaemia. He’s been tested for coeliac disease and crohns, all negative thank fully. Have all tests been carried out?

• I’ve spoken to school and we have:

Arranged the use of a private toilet - the stress of having to go in the usual loos was a cause of anxiety . Agreed he will be in as soon as he can. If he can’t manage to get there for assembly or 1st period that’s fine. This helps him stay calm and knows there aren’t any consequences for being late in. He has my permission to call me at anytime if he’s not coping. Again this just reassured him he can leave if needs be and doesn’t need to convince the school nurse he’s unwell before school will contact me. His work is still available on Teams which he can do from home. All of these things just help remove the stress and pressure of being in school. Half a day is better than a full day off, a morning there is ok if that’s all he can do.

• Low FODMAP diet: it’s an elimination diet and there is a lot information online about it. If you look into this I would start with the Montash University website. I’m not encouraging anyone to try any diet without speaking to a professional first but this diet has been an eye opener for me, there is such a huge amount of food I’d never imaged could cause issues in someone with ibs.

www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/

I know it’s probably not relevant to your DS as low FODMAP diets are predominantly for IBS sufferers but it’s worth mention I think if you do suspect food intolerances.

Can you keep a food/drink diary to check if there’s a correlation between what he’s eaten the previous day and how he’s feeling the next morning? Dairy is a common trigger of stomach complaints. As are carbonated drinks and caffeine. Is he having a lot of foods containing these?

• small but more frequent meals. It makes it easier to digest. No junk food or highly processed foods.

• CBT therapy to cope with how he’s feeling about his situation. He’s struggling with feeling like the odd one out, always off school, up and down to the loo etc. Im really hoping this therapy will give him some coping strategies to deal with the emotional side of what he’s going through. Again, it might not be relevant to your DS, im assuming he isn’t suffering from embarrassment as my DS is but you mentioned he is feeling down about how he’s feeling so I thought I’d mention it.

Sorry that was so long winded and waffly but I just wanted to share everything I’m doing for my DS. Sometimes you have to shout the loudest to be heard - gps are struggling right now as we all know but it’s not an excuse to allow children’s health to suffer. If you feel you are not being listened to then don’t be afraid to shout louder. I have literally cried down the phone to the doctor to get the appointment my son needed. He then finally got to see a paediatrician and had the allergies diagnosed. Without being a bit pushy we would still be waiting and I’d still be giving foods that make him worse. I’m not prepared to leave any stone unturned until I’ve learnt how best to manage his condition. I really hope you get some answers soon.

I would try and good pro biotic, supposed to be good with IBS etc ..

Pedeatric gastro is the best person for stomach issues - in meantime GP shouid have done a poo sample.

Thank you for such a detailed post @Whydidyouask

I'm so sorry you're going through the same, although it does feel worse for your DS These years should be so carefree but I just want them over with and this all sorted out! I know schoolmattendance isn't the be all and end all but we're worrying that this will all affect DS's GSCEs (we're keeping this worry from him as he doesn't need that stress as well from us)

I really feel for the doctors and sometimes they don't know what's going on but God, it's hard. Believe me if tears get that appt, there will be tears and there sometimes are.

Your school sound fab and to be honest ours are great too. DH went in and spoke to the Head of Year today which was good as at High School you really are just another parent. Just telling them there are issues dilutes the problem sometimes and helps with the stress of school non-attendance!

Has he had his morning cortisol levels tested? (Specific blood test). Sounds very similar to symptoms of Addison’s disease which is another autoimmune condition like coeliacs and when you have one autoimmune thing you are often likely to develop others. Might be worth asking your Gp to do the blood test (it won’t have been done as part of routine bloods as it’s very rare but it happened to me and so I always query it when I recognise symptoms now)!

Thanks, I'll ask for this blood test. He has had bloods done but only routine so this is another they could try 👍

It was a little detailed, sorry, I just wanted to be thorough!
It terms of attendance, yes important but not the be all and end all. Their health is far more important than a statistic! My DS is already worried about the impact it’s having on his education but we’ve told him we will hire tutors a bit nearer to exam time so he’s not to worry. I’m also going to order some revision books for him to work through for when he’s not in school. But we are definitely concentrating on being well and happy over anything else.

If being a pain in the bum is what it takes to get help for your son then that’s what it takes. You really do have to fight his corner for him, if that means getting up the receptionists nose then so be it.

You will get to the bottom of this and then you can find a way to treat it or a way manage it. We have good days and very bad days but I will make this a bit better for him if it’s the last thing I do!

Lots of luck x