Cerebral Palsy
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Severe muscle pain . Advice

TommyQTommyQ Member Posts: 9 Listener
Hi everyone Tommy here.
I have a little boy 3.5 years old. He is having a real problem with increased tone in his legs.
He has done 2 sessions of BOTOX injections. 
Around Christmas last 2 years .
Also he is on baclofen morning and night. He has started to get excruciating pain at night as we settle him for bed.
Very hard to watch him suffer so much. 

Any help ideas or suggestions would be greatly appreciated.
Also anyone with first hand experience with selective dorsal rhizotomy that can go through the experience and how it's benefited. 

He is beginning to want to exercise not just be made di them and is getting really strong in his trunk . Can stand aided but when he goes to step his legs pull across fouling one another in his steps . 

He is so happy and a joy to be around, but is getting really frustrated and lashes out  scrawls/ pinches / squeezes when in severe pain or frustrated  . 
We don't know what we can do or should be doing .

Tommy 

Replies

  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    Hi @TommyQ, welcome to the community!

    I'm sorry to read that your son is in pain, have you noticed if his pain at night is worse after a busy day and how long has he been on Baclofen?
    The really important thing at your son's age is that he has regular physiotherapy. Fun things like swimming or hydrotherapy (if there is a facility near you) are fantastic for stretches and low impact exercise. I loved it when I was a kid because it didn't feel like physio!
    Has he been measured for any orthotics yet? They may help support his ankles/legs lessening the strain on his muscles.

    We have some information about SDR which you might find useful. I haven't had the surgery myself but I have spoken to many parents that have been happy with the effect it has had on their child's mobility. The most common issue seems to be the sheer amount of follow up physiotherapy required to give the surgery the best chance of success and access to that.

    Really happy to discuss things further with you.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TommyQTommyQ Member Posts: 9 Listener
    Hi Richard,  thank you for responding so fast.
    He has new orthotics since april and they fit great. He had being doing loads of hydrotherapy up until February when this covid 19 put a stop to everything. all appointments stopped.
    I am think he has got a lot bigger since he was last prescribed the baclofen so maybe the amount may need increasing. We have been in contact with his care team.

    It's just really hard to see him in pain.
    He didn't like wearing the orthotic at night . Should we start putting them back on for bed ? 





  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    Covid has really had a knock-on effect for treatments. 

    If he has had a growth spurt this can also affect the muscles. Have you or your partner tried a gentle leg massage after his bedtime bath? It can help to ease the lactic acid build up in his muscles and I am loathed to say this because hated my night splints but if you were advised that he should wear it at night, I would put them back on for bed. Sorry, little fella!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TommyQTommyQ Member Posts: 9 Listener
    Thanks Richard. 
    We will put on his splints him moaning about them is better the pain he seems to be having at the moment. 

    We do massage his legs every night. 
    It's all so new to us and it is great to get insight from people who have lived with c.p.

  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    Anything I can do to help you guys, just let me know.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,354 Pioneering
    Hi @TommyQ
                            How are you? Welcome to the community and thank you for joining us. I'm pleased to see our knowledgeable and lovely Specialist Information Officer for Cerebral Palsy @Richard_Scope has been able to help you regarding your son. I'm really sorry to hear that he is in so much pain, I would imagine that it is not easy as a parent to see this. I hope things improve as soon as possible. I just wanted to say I have Cerebral Palsy so if you ever have any questions then please do ask and I will do my best to answer them or point you in the right direction. Thank you. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @TommyQ and welcome to the community!

    I have CP and I wasn't a fan of night splints. Sometimes it can help to gradually introduce them so the muscles are gradually stretched. I started off wearing them for an hour before bed, then built up to wearing them all through the night.

    Granted I had a tendency of waking up during the night and taking it off!

    Like @Richard_Scope said, physio and splints are really important and persevering when you can should help to stretch muscles.
    Scope

  • TommyQTommyQ Member Posts: 9 Listener
    Thanks a million everyone I will let you know how I get on with this.
    His consultant mailed me today and has increased his baclofen as he has grown so much.

    Up 10 milligrams. Thats 1 milligram extra per week until we get to the 10 extra on his current dose.

    Last night after he woke again at 3am until 5.30 in terrible pain I managed to sooth him and massage and stretch with him.
    I then put on his splints and he slept until 9 am without moving. 

    I'll put him to bed tonight in his splints and see how it goes.

    Thanks so much everyone 
  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    I know it's hard to remember through the lack of sleep and the worry but you are not alone in this @TommyQ. Please do keep us updated.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • RegReg Member Posts: 28 Courageous
    Hello

    As a child and adult I have had problems with muscle pain in one leg at night. I have found that with enough baclofen you are zonked out but it then affected work etc. What helps me most is keeping my worst effected leg very cold ( so no bed covers on it or an ice pack as an adult to add to the cold ). As a child I was told that it was growing pains and the only thing that distracted me was constantly moving the leg while in bed.

    I hope that helps as I know I wore my parents out as when I could not sleep with the pain I would sing to myself. For a while they resorted to sleeping tablets for me so they could sleep and I was no worse for that and it helped them cope! 

    Hope that helps 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I hope tonight goes okay @TommyQ! Like Richard say, you certainly are not alone.
    Scope

  • TommyQTommyQ Member Posts: 9 Listener
    Thank you @Reg and @Chloe_Scope.

    The nights have been really warm all week that's probably why he has been getting such severe pain. 

    Last night with The splints on he only woke once and went back to sleep very quickly. 

    I do hope that's the last of the waking up with pain.
    Thank you for all the insight.  We had hardly no sleep all week. 
    He seems way happier today too after proper rest.


  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I'm glad it went okay @TommyQ! I hope the cooler weather helps as well. :)
    Scope

  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,354 Pioneering
    Hi @TommyQ
                          I'm pleased to hear he had a better night, I hope it continues! Thank you
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