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Mild cerebral palsy and tummy pain

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suzzieme
suzzieme Community member Posts: 2 Listener
edited April 2021 in Cerebral palsy
Hi, I’m looking for some advice.  I have a 10yr old son who was diagnosed with mild cp as a toddler.  He has a very slight left sided weakness and occasional leg pain, but it’s almost invisible to anyone else.  Since he was able to speak, he has complained of a “sore tummy” at bedtime and has difficulty getting to sleep.  We’ve spent 6yrs back and forward to the GP but they never seem to take it seriously and put it down to anxiety and said he would grow out of it.  I hate seeing him in pain and it just seems to get worse with age rather than better.  We really don’t know much about cerebral palsy as other than a foot brace as a toddler, we’ve had no need for any other input, and I feel a bit of a fraud posting on here at all, but I wonder if the tummy pain could be linked? Is this something anyone else has experienced?
Any advice would be greatly received.
Thanks for your time, Suzzie.
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  • Sandy_123
    Sandy_123 Scope Member Posts: 49,972 Disability Gamechanger
    edited April 2021
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    Hi @suzzieme
    Please don't feel like a fraud you have come to the right place and welcome to the forum. 
    I would insist on tests at the drs, if not change drs and get someone who will listen, it has been going on for a long time, needs investigating.
    Lots of topics  on the site also and feel free to join in.
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  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
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    Hello @suzzieme and a big warm welcome to the community! :)

    First of all, it's really good to have you with us and please don't say that about feeling like a fraud. If you've got a question for the community, then we're very happy to try and help with that if we can. 

    What I would also start off by saying is that none of us here are trained or able to provide medical advice, so your GP and other medical professionals are still going to be the best people to try and help you establish if your son's tummy pain might (or might not) be linked to his diagnosis of mild cerebral palsy (CP) when he was a toddler.

    That said, we do have lots of people on the community with experience of cerebral palsy, including our very own CP Specialist Information Officer @Richard_Scope. Hopefully, somebody will be able to offer their thoughts on this. Also, it might be worth having a read of some of the posts in the Cerebral palsy section on the community. You might spot something on there that's helpful to you. 

    Of course, the most important thing is to try and get your GP on board with getting to the bottom of your son's ongoing tummy pain. I know you say that you've raised this with them before now. So, if you do feel as though you're not getting the support you need from them, then it might be worth bearing in mind @Sandy_123's suggestions. Could you approach your GP about this once again and see what they say? Or could you ask to see an alternative GP within your practice, in case they have any additional input? And if that doesn't work, do you think that you're at the stage that you might need to change GP? 

    Hope that's given you some things to think about. You have a good Sunday afternoon suzzime. :)
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome 

    Hope some of the info above is useful 

    It's hard to watch your kids in pain 

    Just wanted to say hi and welcome 
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  • Welshjayne2021
    Welshjayne2021 Community member Posts: 85 Courageous
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    Hi @Suzzieme.  I have mild cerebral palsy and as a child according to my parents I had terrible colic.  When I reached adulthood, from time to time I would have terrible pain in my stomach which only lasted 20 minutes to half an hour but it could be very painful.  It turned out to be a hiatus hernia.  Now I don’t know if children can get this but it’s worth asking.  Best wishes, I have 3 children and it’s horrible to see your child in pain.
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hi @suzzieme
    Welcome, it's great to able to speak with you. I live with CP too. From what you have said, it's possible your son has acid reflux sometimes also known as GERD (Gastroesophageal Reflux Disorder), this is very common in all types and levels of CP. It is easily managed with medications. I would suggest that you see his G.P, and get a referral to a gastroenterologist 
    Scope
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  • suzzieme
    suzzieme Community member Posts: 2 Listener
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    Thank you.  He was on medication for reflux for about a year but it never made much difference.  We saw the paediatric surgical team at the hospital who then decided constipation and gave him laxatives with disastrous effects!  When none of that worked, the gp just shrugged his shoulders and decided he was just anxious about sleeping and would grow out of it.  Only it never seems to get better and I’m giving him calpol several nights a week not really knowing what’s wrong.  I’m taking him back to the gp this week to see what else they can offer.  He fell at school yesterday and ended up in a&e with a head wound so not been the best of weeks.  Seems when his leg is sore and tight, his tummy hurts more so maybe related or maybe just anxiety as the doctor said.  Thank you for all the lovely welcomes and advice, Suzzie.
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Too many G.P.s shrug their shoulders I'm afraid, @suzzieme. Please let us know how you get on when you see the G.P. this week. Sorry to read about the fall at school.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

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  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited April 2021
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    Hi @suzzieme

    I’m sorry to hear about your son’s pain in his tummy and his fall at school. 

    I’m not medically trained but am going to share my own experience to see if it offers any help for your son

    I have Hemiplegic Cerebral Palsy affecting my right side.

    From time to time when my muscles are tight in my right side eg leg and I am tired my right side abdominal muscles also are tight and physically hurt - I wonder if it might be this? I actually use a pair of Lycra stability shorts for when this pain kick in to relax the muscles (these were prescribed by an orthotist in conjunction with a physio) I had difficulty getting this diagnosed

    Does your son complain that the pain is one side - his CP affected side. I’d suggest seeing a physiotherapist or osteopath (you don’t need a GP to do this for you, you can self refer), as they’d be able to tell if the muscles are tight and offer some treatment

    Hope this helps


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