ASD girl with tummy pain

[spickles]

Hi everyone
I've an 8 year old DD, diagnosed ASD/ADHD last year. I find these boards such a comfort and resource, so thank you to everyone who shares and helps. A lifeline.
We have had many tests for her tummy pain in the last year. All blood came back clear, we were told to try gluten free then casein free for 3 months. started GF, then after a month it was clear it wasn't helping, then tried lactose free, and she was much better for a month. Now her pain has come back worse than ever (on lactose free). The Gaviscon, Zantac etc doesn't seem to help much. She has a v good probiotic every day (4m+)
Anyone else have this problem for their DC? I know tummy problems are v common with ASD. But I really don't think GFCF diet is the way to go now, and wonder if there is a general "tummy migraine" situation. i.e. not diet related. Strikes me I could tie myself up in knots with loads more investigations when we will never know the cause.

Thanks for listening. Any support or similar experience will be very much appreciated!
Sx

My DD complains of tummy ache/feeling sick all the time. Several times a day in fact. There's nothing physically wrong with her. I think it's anxiety. I've noticed she complains of it a lot more in situations that cause her anxiety: when things aren't going her way, when I ask her to do something, when she's expected to do a task she finds difficult (ie. Handwriting). She's 7.5 so similar age to your DD .

Could it be something like this?

Hi - yes it does sounds similar and certainly if she is distracted (i.e,. playing minecraft!) she will look fine and moan about it less. It certainly seems worse if she is in a stressful situation (friend ignoring her at school for eg). But her appetite is reduced during these spells of tummy ache so I do think there is some real discomfort there (which may be occasionally exaggerated). We tried using a scale 1-5 for how bad it was (5=hospital like her broken arm pain). she genuinely woke up in tears this morning and the zantac didn't help.
Feel hopeless!
But yes, maybe stress related.....

Stress and anxiety can definitely cause real physical pain. I also have a Dd who complains of pain when she is stressed. Headache, tummy ache, sore throat etc. Just about everything hurts sometimes

Dd3 will also stop eating and be physically sick due to anxiety! It is a huge problem for us!

Dont think for a minute that your Dd's pain isnt real, I am sure it is but it may not be caused by diet etc!

There is a new book available by The Girl With The Curly Hair called Aspergers and Anxiety. It is a really good book that is very easy to understand. Dont be put off by the aspergers title, all the way through she uses the term Asd.

I would highly recommend it.

Good luck

That's reassuring from both of you ilove and ineed. Although sorry your DDs have this too. I will do an amazon order now for that book, thanks for the tip. I'm trying to work out what the big trigger was this weekend (the pain has been constant, so she says) and can't believe the only thing different was her best friend came to play for 4 hours - they had a great time. But was it stressful?? Does she internalize her stress "keeping up with" her friend? Its such an enigma, I have so many questions, and of course she can't answer them.

Hmm, it is very likely that that would be quite stressful.

Dd3 used to really struggle with playdates at home, she could never understand why other children wanted to playin a different way to her, she would spend hours setting up perfect games to be played and the other child would ignore them.

Or worse they would be attracted to her wonderful arrangement of playmobil which she absolutely hated anybody touching

To be honest we found it less stressful to meet up in neutral spaces or go to other peoples houses.

Dd3 is 12 now and can manage other children around so long as they dont stay too long

Also agree with polter Dd3 can often on the surface appear to be coping, only collapse when we get home or people leave!

I rarely plan 2 socially demanding events on consecutive days oh apart from school which is a nightmare in terms of stress

My 8 yr old DD frequently complains of feeling sick and having tummy ache. It's definitely worse if she's stressed about something, eg spelling test at school, going on a trip etc. It will usually happen at bedtime and first thing in the morning, but can happen during the dreaded activity itself when it manifests more like an anxiety attack (nausea, sweating).

I'm pretty sure the nausea and pain are anxiety induced as she has an anxiety disorder, also it's noticeable how quickly it comes and goes according to thoughts and mood. It doesn't seem to be affected by food. I find the best way to deal with it is to provide lots of hugs and sympathy, but it does get very wearing, especially as it's often late at night. Oddly Calpol seems to help, I think it's a placebo effect though!

Gosh, it sounds very common then. Thanks for the messgaes too Blue and polter.
We've been capolling morning and night when she is visibly upset by it this weekend. It's just such an odd thought that her best friend (since 1) coming around could trigger this. But then, their differences are becoming more apparent. I'd say DD2 is now emotionally around 4/5 rather than 8 - I think it is starting to become apparent to her friends at school as the girls in year 3 are getting more sophisticated in their dialogue and emotions. Poor DD2 :-(
Thanks everyone for the moral support. x

Ah so she's not the only one Polter I discovered it out of desperation one morning when I couldn't think of anything else to do - she had sobbed for an hour about feeling sick and not wanting to go to school. I suggested 'medicine' and she agreed - one teaspoon of Calprofen and poof, she was fine and practically skipped all the way to school

Spickles - it's very difficult isn't it. The fact that there's no apparent 'illness' causing the symptoms makes it really frustrating, you just have to learn to deal with it in other ways. Distraction is the other thing that can sometimes work for us - favourite TV programme, computer game, joking around and being silly, playing with pets. Unfortunately saying 'don't worry about it' has zero effect (though I can't seem to stop saying it anyway)!

You are probably right spickles about the maturity level, I read somewhere and Dd3's paediatrician backed it up that children with Asd are emotionally and socially roughly two thirds of their chronological age, Dd3 is 12 now but much more like an 8 yr old in the way she plays and communicates.
So a third off 8 would make it around 5 ish.

Knowing this has really helped us to plan for and support Dd3 more effectively and her stress levels at home and on holiday is much lower than it used to be.

School unfortunately is a completely different ball game

spickles ... my dd has suffered with tummy pain for years caused by stress and anxiety. It's horrible and very very real. Even worse for her, she has a condition called Globus Hystericus .. her anxiety gets so bad that it causes a very real feeling of a lump stuck in her throat. She can't swallow, can't eat properly and feels this constant sore lump .. yet there's nothing actually there It's all just caused by stress and anxiety.
I agree with pp .. dd can have her best friend round but finds it just so stressful that's she's ill the whole time and for a couple of days afterwards. We try distraction when she's bad. Also ignoring it and not talking about it. It's difficult to do that though when you just want her to be ok and not in pain
I also try not to have anyone round now, it's just too much. Life has so many other struggles for dd without giving her more at home. So if I can stop some of those struggles by changing things at home, I do. Agree with ineed ... school is a whole different ball game with it's own set of problems.

Wow thank you so much for all your supportive comments. Its reassuring to know this is possible (the stress related pain) but I am sad so many of our DDs are having to live with this. We are still quite new to the dx of ASD and finding our way. School has indeed become more of an issue only this year (3) and I can tell she is drifting away from her friends. So glad she has 2 other sisters at the school for now, but her eldest DD1 (DD3 is younger) leaves in July, and I will lose my ears and eyes on the playground......
I think you are right to keep things simple at home. Weve also cut back on after school activities, but because I work she does need to go to after school club twice a week. not ideal.....

I also think it could be anxiety. I think it is due to the fight or flight response. I read that the body is getting ready to run/attack as a response to stress and the blood is drained away from other parts of the body including the digestive system hence the stomach ache and feeling sick.
Have a look at this website it is really useful…. www.anxietybc.com. The best thing is to explain to her what anxiety is (good tips on this on the website) and when it occurs to tell her that it is anxiety and distract her with something she finds relaxing (I don't know about you but whenever I have paracetamol it also relaxes me on top of getting rid of the pain,it could also be why calpol is working).
As for the 4 hour playdate, she can both enjoy it and find it stressful (both feelings are not mutually exclusive think of a roller coaster!)…just let her have plenty of rest afterwards (including watching loads of TV if this does the trick).

So many similarities between our girls.

Interestingly my DD often complains of her neck hurting too, which I put down to that lump in the throat type feeling :( She will also vomit if very upset.

It definitely effects her appetite, she often goes to school with two mouthfuls cornflakes inside her because she 'feels sick'. And worry about her weight, she weighs 3 stone 4 pounds, still in the healthy weight category, but only just (she's average height of her age). She eats a very limited diet too, she's very fussy.

My DD is also in yr 3 but immature for her age, and the gap between her and her peers is definitely widening. She has quit all her extra curricular activities now, goes to after school club twice a week because I'm in work, which she HATES. We also having a very low key half term because she was so stressed last week that her behaviour was awful - she just screamed from waking up till bedtime :(

It really is great to hear your experiences ladies, thank you. Ilovemyshirt, we will have to check in with each other about how our girls are doing, sounds like they are at similar stages in year 3.

Frazzled, your poor DD, sorry she has the throat pain too.
mollyweasel, thanks for the link. I think distraction Is going to be our main trick, and calpol. But it is interesting how she doesn't complain when on minecraft or watching telly.

Can I just add another option - ds (NT) had years of bad tummy pain (abdominal migraine) and now age 12 has had a couple of proper head migraines. So it MIGHT be unconnected to ASD (I'm reading this thread as dd has ASD) but may be a precursor to migraines??

That's interesting 1805. Dd2s auntie (not blood related) has migraines and mentioned tummy migraines but I'm not getting much about that on Google.
We're seeing a paed later this week, just want to discount the obvious bad things, then work on keeping life simple and helping dd2 to cope or speak up if she's streessed. I tried talking to her today about feeling stressed and she had no idea what that felt like.
DD2 had some nasty seizures as an infant so I've always wondered if it was all related, or if the seizures affected her tummy system, we'lol never know.

yes, everything is more complicated when you mix in ASD!!!!
Ds had loads of tests to rule out other things, and everything was clear, so GP eventually reckoned they would turn into head migraines, and he seems to be right. We tried Gluten free diet too!! He was in a lot of pain with them and had days off school sometimes.

Ginger can settle nausea and stomach cramps, depends if the tingly taste appeals or not. For a child, chop a piece of root about the size of the end joint of your little finger, steep in hot water for a good 10 minutes, strain and drink.

If you're not sugar-averse, stem ginger is always a standby if you've no root handy and it's very sweet, one or two chunks chopped then the same procedure.