Cerebral palsy and pain management

As a mom, it’s a given that at some point your child will get injured. For my son Trace it’s almost inevitable. Trace has cerebral palsy. And although no mother likes to see her child in pain, when you are a special needs mom, you are on double alert duty when it comes to watching your kids to make sure they don’t suffer.

For those of you who don’t know, cerebral palsy is a neurological condition that affects muscle coordination and body movement. It’s usually caused by a traumatic birth.


CP falls under an umbrella term for several symptoms. Unlike a disability such as down syndrome, it does not have a singular cause. It is a brain injury that can occur either during pregnancy, during delivery, or shortly thereafter. In Trace’s case, it was the cause of being untreated for a bacteria many women have during pregnancy called called Group-B Strep.

I had GBS with my first child, Jake, but we were both treated after giving birth to him vaginally which is where GBS lives and can be transferred to baby. Trace’s condition was different. His hospital records clearly indicate he was born with GBS and left untreated which we believe is the leading cause of his special needs today.

Many women suffer with horrible stories giving birth to children left untreated with Group B Strep!

At three weeks Trace became lifeless and unable to move. He began having problems eating, breathing, seeing. We spent the next several months going back and forth to Children’s Hospital, unknowing that it was the GBS untreated affecting his body.


Trace’s knees after falling down continuously because of his legs not working while playing.

What is Mild Cerebral Palsy?

There are several different types of cerebral palsy, each classified by the way in which they affect the individual. In Trace’s case, his condition is mild if not noticeable at all to everyone around him, except for doctors and us. He is a walking miracle. They told us at 15 months he wouldn’t walk, talk or do anything normal kids can do because of the damage done to his brain.

Trace is extremely smart. He’s only five years old but has a great memory for some things and a deficit for others. He sometimes has trouble finding his feelings, and one of the most major things he faces is pain management for his legs and feet.

Trace often suffers from extreme pain in his legs which can be upsetting for him. He comes inside after playing, crying and breaking down because the pain is throbbing from his hip to his ankle, and there is only so much I can do for managing his pain.

  • Medication can be given – such as Tylenol and Advil often helping to alleviate the symptoms.
  • Baths with Epsom salts each night (sometimes twice) to soothe  his aching body
  • Massage at home to help keep the circulation in his legs and joints going.

And that’s it.

mom cuddling son with mild cerebral palsy
Trace and me cuddling after a long night of pain management.

As a mother, it is hard watching your child suffer. I watch Trace limp down the stairs because his legs hurt but I don’t want to discourage the fire inside of him. I watch him push through the pain, never allowing it to stop him. I watch in amazement as he knows what he’s capable of. Still, it’s difficult to witness and be unable to do anything more to help him with his suffering.

Here is my Dilemma right now. Mild cerebral palsy can be more severe than other cases of cerebral palsy, in the sense that some won’t get the benefit of treatment. Some children with mild cerebral palsy are affected by physical limitations, but their intelligence is not affected at all. Because they are not educationally deficient they will not qualify to receive occupational or physical therapy through their respective school.

JS

Pin Me For Later >>>

pain management and cerebral palsy

So how can kids with mild cerebral palsy be more mobile independent without having to deal with tremendous amounts of pain? Well that’s the million dollar question, isn’t it?

I want my son to have a full life. One in which he doesn’t miss out on things because of feeling a mass amount of pain. I don’t want to treat him like a baby with kid gloves, so I push on.

I tell him he can push through and we keep on doing what we are with medication, massage, and whatever therapies we can discover from other parents with children who have mild CP.

Do you have a child with mild Cerebral Palsy? How do you cope?

10 thoughts on “Cerebral palsy and pain management”

  1. As a adult with CP (I just reached 30) your blog is heartening to me. I remember being that child who wanted to walk the block but then got to the end of it and wondered how the heck I'd ever get the strength to make it back home. I encourage you as parents, as caregivers and advocates for your children because you have a very important, sometimes stressful, wonderful job. I did not have that person to advocate for me. My other denied my disability and my grandmother tried as much as she could but it was very hard. Its hard to find appropriate resources. I too have "mild" Spastic CP. I had the Growing Muscle release surgery and the Hamstring release surgery at the age of 12. It did help for some period of time. My legs are not as constricted as they were and bent. One thing with CP is that they thought in the past it was not a progressive disability but they are finding now, and I can tell you from experience it is progressive. The constant falls and fatigue take a toll on the joints in the hips and knees particularly overtime. When I was younger I went from being told I wouldn't be able to walk (then I walked at 3), to walking with braces and walker, to cane, to just braces, to having surgery and walking with nothing. I only needed wheelchair on hot days, for long distances as you see with your children. Then as I get older it seems every 3 years or so I have "episodes." At these points my knees and my hips are in extreme amount of pain and my muscles just contract and spasm and say "I'm done." It takes me months and at some points years to regain strength and get back on track and I'm scared that someday I may end up wheelchair bound, which will cause my muscles to contract and give up more. (Yay… Um not). There needs to be more research and help in CP and dealing with the pain of it and they need to stop saying its not progressive. Many Cp Patients can't speak up about their symptoms, there are not many doctors that specialize in CP (and if you think your frustrated now – it gets worse as we get older to find doctors who can and will help much less to find ones that specialize in it) but I'm in the US so it could be different. I haven't tried the botox injections yet (and at first I was like no way no how) but the kind of pain I am in now.. I am seriously considering it if I can find a doctor that is willing to try. I'm actually about to uproot my whole life (which I'm scared to do but seems necessary) to move two hours to a bigger city with public transportation and more specialized doctors because its becoming harder to walk and I'm out of work because the pain just that bad. If I can give you any piece of advice, keep advocating, keep searching, and keep pushing forward for your child. I think PT and Chiropractic helps (Don't ignore the Scoliosis portion of it if your children have it because now that I'm older and that was never paid attention to I'm having a lot of back problems that are severely affecting my walking). The thing with PT and Chriopractic and even exercise is it may contribute to the weakening of the muscles, increase the leg spasms, contribute to the joint pain in hips and knees – and that is what I am dealing with now. Things that other adults wouldn't fact for maybe 10 more years I am facing now with grave difficulty. It is very frustrating being limited when all my life I have fought to live without limitations. The most important role you will ever play in your child's life is that of a advocate and helping them to live the best they can their whole life with as many abilities as possible despite their inabilities. God Bless you.

    1. Thank you so much for sharing your story with us. My tears are a great comfort in knowing you are here, in pain yes but that there are others like you suffering and my son will not be alone. I work hard to be his voice when he can't, to help him when he can't. I'm so sorry you are living with these limitation, it's not easy I know. I appreciate the advice you've given and I wish you all the best at finding some relief. God Bless you and I will be thinking of you. 🙂

  2. Hi Jodi,

    From reading your rant I get the impression that you think "severe" cerebral palsy also means mentally deficit. Cerebral Palsy doesn't affect cognitive abilities at all. Just because you see a child sitting in a wheelchair, drooling, not able to use his/her hands, not able to hold their head straight doesn't mean they are not intelligent. We parents of Special Kids are the last ones that should make assumptions about others. Why am I so strong about this opinion – I am the Mother of a 13-year old with "severe" Cerebral Palsy (at least that is the diagnosis). It affects his legs, arms, upper body and speach. He was never expected to walk, is only in the 3rd percentile for fine motor skills but is in the 99th percentile for intelligence. He also has been diagnosed with ADHD, Generalized Anxiety Disorder, Pervasive Development Disorder Not Otherwise Specified (Behaviour), Sensory Integration Dysfunction and possibly Asperger's (whew!). I have been advocating for his rights since he was 8 months old and will continue for as long as he needs it.

    From what I can tell you have applied for the Disability Tax Credit and he has been granted that. Have you applied to the "At Home" program? This is a Gov't of BC program that assists with medical and respite for 'special needs' kids. Contact your local Ministry of Children and Family Development and ask about it. Also, tell them that you need assistance because they are supposed to be helping you after the CDC.

    Speak with your pediatrician about Botox Injections. Cole gets them every 4 months mainly for pain management. Yes, they are needles, but his doctor sedates him with Midazalam (sp?) so that he doesn't remember actually getting the needles.

    If you get accepted by the At Home program they will cover the cost of a wheelchair. Cole only needs one for distances or real hot days when he fatigues easy. The At Home program also pays for physio as long as you get pre-approval and have "specific" goals in mind. The school system is supposed to provide physio, O/T and speech once you leave CDD but it is rare if they actually have the resources to do so.

    You will probably always find it tough watching your "little one" suffer. We all do but we have to keep on going because tomorrow is another day.

    If you have any questions about something I may have gone through (I live in the Okanogan) you can e-mail me at [email protected]

    1. thanks so much Susan for the info, and I didn't mean to give the impression that all cases of severe CP means non-intelligent. That is the furthest thing from the truth. That is what others believe, so I know what you are talking about. Most people aren't aware that CP means Cerebral (being brain injury or damage) to specific regions and Palsy (meaning physical functions) arms and legs and the inability to move them. Cognitively most children with CP are high functioning and do very well, despite their physical disability. Trace's problem is that most people don't even see his CP. He runs and plays and jumps and does not require a wheelchair – although like you say I will look into it because he does get fatigued on hot days and walking long distances. He just sits and that's it – he can't go any further.

      As for at home care we applied several times but Trace is not severe enough to get any respite or extra help. So we are out of luck there. He has an IDP worker through CDC whom is helping him with his transition to kindergarten and they don't foresee any problems in the future.

      Wow it sounds like you have a lot on your plate with you beautiful son. Advocating for his rights takes a lot of energy. Hope you are taking some time for you too? It's so nice to see your son has someone like you fighting for his needs. And your advice is wonderful and I appreciate you sharing it and reaching out. Many readers here with special needs kids appreciate it as well. It is hard watching our son suffer at times but that's my job, to keep pushing and fighting for him and we take each day as it comes. Writing here and ranting sometimes as I like to put it helps me get my own selfish feelings off my plate so I can focus more of the needs of my own children. Does that make sense?

      I wish you and your family a great new year for school and thanks again for commenting and leaving the info for me. Funny you are in the Okanogan, that's where we moved from. We used to live in Kelowna.

  3. Ouch, that isn't much help is it.

    thanks for posting those links. I haven't been to two of them and the one about the link for financial help is one I am looking more into. I often wish that the help available was all listed in one spot.

  4. It has been eye opening to read your blog and about your son Trace. From seeing him at preschool he always has a smile on his face and is a friend to all.

    You may already have done this but have you applied for the disability tax credit through the government? Our oldest has special needs and we get extra money every month to help pay for the extra therapy needed. It doesn't pay for everything but it is a step in the right direction.

    1. Yes I have applied. I get an extra $200 per month for Trace which covers nothing. His orthodics cost around $700 each time he needs them and physio therapy costs even more.

  5. Have you guys tried botox? My niece gets the injections in her legs and they really help her with her balance for a while.

    1. No we haven't even heard of that. Something to maybe consider but the idea of injections I don't think I'd want for Trace, he's had so many needles

  6. I totally understand what you are going through and deal with this everyday. My ten year old son has mild cerebral palsy, much the same as you son's. His knees and elbows bear the scars of years of falls in the plaground. we think he has aspergers too. He tires easily and as he gets older seems to be losing some of the fire he had when he was little. Life with cerbral palsy is exhausting and difficult and I think acknowledging that is a very big first step. M, my son, needs times to rest, and we need to take into account the distances he can walk, compared with our other children. This means sometimes changing a plan. Swimming is an excellent exercise as it supports the body. we use massage as well and M enjoys his muscles being relaxed.

    As your son matures he will be able to express to you more and more how he wishes to handle the situation, and this will help.

    Hope that is some help, and know you are not alone 🙂

Leave a Comment

Your email address will not be published. Required fields are marked *