Whatever stage your family is at on the road to recovery after an early brain or nerve injury, it is important to stop and think about why you want therapy. What are you expecting from a therapy visit? Do you have specific goals for that visit? The sad truth is that there is little proven benefit to short, intermittent therapy sessions once or twice a week. We keep scheduling therapy this way because that is the way it has always been done.
Why is progress so slow in therapy? One cause is that we are not focused on replacing old maladaptive habits with new ways of moving. One of the most important discoveries on my journey was that children learn their early movement patterns with a damaged, immature brain. They are repeated over and over again and they become firmly wired into maladaptive habits. Think of a bad tennis serve that the young player puts together in childhood. The older, competitive athlete will have to replace this old habit with a new sequence of movements. It is hard work, but coaches and athletes worldwide know that it can be done. It took me a surprisingly long time, with the help of a few really pushy mothers and some great therapists, to realize that the same techniques of correcting form and lots of perfect practice could create new movement patterns in children with CP. There a lot of examples of how Habits Hide Recovery in my book and a growing awareness of the role of habits in the CP field.
The problem is that to replace old habits with new ones will require another major change…this one in the traditional service delivery model of rehabilitation centers everywhere. Short, 20 to 45 minute sessions 1 or 2 times a week will not produce lasting change. Ask any athlete…change requires purposeful, intensive practice. And the new neuroplastic treatments, now available, do their work in intermittent intensives. It is remarkable how much change can occur in as little as 3 to 5 days of intensive 3 hour sessions. Preventing maladaptive habits in young children is also easier to do with a focused, multidisciplinary approach in an intensive.
I expect some opposition to the concept of a service delivery model change, but parents can help. Are you satisfied with your child’s progress? Would it be easier for you to organize 3 days of half day treatment every 2-3 months (with homework to do at home) or continue with your current treatment frequency? Let me know what you think after looking at this link.
I think the best therapy is constant…my Son (aged 9 with Hemiplegia) receives a weekly physio session at school for approximately 30 minutes from which I receive no feedback. I do morning leg stretches every day and crawl to bed races every night. Football training once a week in a disability football group and one to one swimming for an hour after school weekly. I correct his position throughout the day and twice at night when he’s gone to sleep. My Son also wears a fixed splint on his left foot 5 days a week. We are currently being fitted for a lycra sleeve by the Australian company second skin as my son’s use of his left hand is poor. Sorry for rambling…I think little, fun and often works best for us but the issue I struggle with is am I doing the right things…I question how much of it makes a difference. I’m assured by every health professional I meet that it does but when you can’t compare outcomes with the alternative of doing no therapy and not wearing splints etc it often leaves me wondering.
In the bad old days when I started seeing children in the NICU Follow-up program we did not have or use braces, splints and early therapy. This resulted in progressive body distortion. Keep up the good work. It is worth it.
We see great progress with a four week CIMT that our daughter does about every ten months. She is Four with right sides hemi-plegia (right hand fisted at birth) and she has done this therapy since she was nine months old. Outside of the CIMT she receives 30 mins of OT at school and 45 mins to 60 mins outpatient OT. She has a mind of her own and for the last year I struggled with really harping on therapy initiatives at home. We’ve come back around to challenging her at home and she’s welcomed it. I do see progress with the schedule we have and would worry that more intensive work would drive her away. Plus our insurance runs out so quickly.
It is a real balancing act! It will become clear…I hope…that my focus in the young child is to maintain alignment and offer challenging activities that allows them to figure out how to do it. CIMT is great, but I believe you need to splint and brace to block malalignment problems every day. More on this soon.
It sounds like a great program. I would only make sure that the foot and ankle are properly supported with an AFO is needed and that the hand is keep open most of the time. A McKie Splint can be very helpful if needed.https://mckiesplints.com Discuss it with your therapist and keep up the great work.
After SDR last year, my 4 year old (spastic diplegic) receives 60 min therapy sessions 4 times a week. He goes to karate once every week and swimming lessons twice a week. At home, we use the treadmill, vibration plate and EMS (after reading “The boy who could run but not walk”). I can tell he is getting stronger every day, but I wouldn’t know exactly which one of the many things we do, is working the best for him. Sometimes I wonder if it is too much for a little boy.
Congratulations, your hard work is working. He is getting stronger. This is the type of work needed for rehabilitation after an SDR.I would only say it is too much if the child is tired all the time. You have a good balance going. The only suggestion is using the Wet Vest for deep water jogging. I have found it more useful than swimming lesions and the children love being chased around the pool.http://www.karenpapemd.com/basic-water-exercise-program/
My son cries with his physical therapists all the time so we looked at alternative methods (ABM) which he tolerated better. Now we are also giving mnri a try, I still haven’t seen any magic. He has been doing the traditional therapy once a week ever since he was born (he is 14 months now) with no major progress on motor skills so we thought we need to change. Insurance doesn’t cover these alternative intensive therapies so that has to be factored in, we are exploring trying an ABM intensive as I think you are right, even with me trying to give him therapy every day I am desperate to see results. The question is how to find the right intensive therapy
The question with a crying toddler is whether is is discomfort, fear of the therapist or a behaviour issue. The right diagnosis leads to solving that issue. I suggest talking it over with your paediatrician.For intensives, look for ones that have clear, measurable goals for their intensive.In my opinion “rewiring the brain” is a goal of all types of therapy, what counts is does the practitioner deliver on a measurable change in a defined time period?
That’s an interesting read and a view I hadn’t thought of before. I agree with this intensive approach as it has worked for my son. We gave him lots of intensive sessions to try build up muscle to be able to weight bare enough to walk and it certainly helped. We only did intensive after our regular Physio sessions were not showing improvement. Our old Physio back then didn’t give my son a good outcome, than on our own we did intensive without the Physio knowing, and the Physio couldn’t believe how much our boy ‘suddenly’ improved. This article is a great reminder to keep doing these sessions.
Thank you for this. Children learn in sequential steps. When they pull to stand they practice it intensively until they have it in memory. This is the integration phase. Then they go to the next stage.Brief intensives help them learn.
How do you find the right intensive therapy?
That is a great question and I do not have an easy answer.I think most parents assess whether it s helpful to their child by the results. As a general principle, they should have a clear,measurable goal for you. I will be writing more about the concept of goals in the coming weeks.
Our son had a disappointing outcome to major ortho surgery 4 years ago after developing debilitating neuropathic pain. Eventually, the pain improved. He decided to undergo more surgery and is now 4 months post-op. The results during the time of daily, inpatient physio were wonderful. Now, he works with a physiotherapist 3 times each week but his motivation to incorporate into his daily routine is not strong. He’s 18, so we are limited in what we can do, and the more we encourage, the less he wants to hear it. He’s a smart guy…what’s the right message for him? We know he wants the best outcome but seems to have a disconnect between the hard work and the outcome.
I have found that getting teens and young adults to work out with an athletic trainer is beneficial. The PT can monitor and tell the trainer about specific issues, but the gym atmosphere is very beneficial. It is not just more PT…after 17+ years of the same. Another route might be adapted sports.They also improve peer interaction and participation.
Although intensives can be a really good idea, it doesn’t necessarily work for every family. The key is, as you mentioned, that the therapist identifies the most relevant issues for the developmental stage and age of the patient. The more regular the intervention (and this includes individually targeted) work at home, the better the results. I find often that very important and key movement patterns have not been addressed in early therapy. When these gaps begin to be filled, often progress is seen quickly. A common gap is too little attention to support functions in prone which are absolute key to developing a strong core and the capacity to lift the body from the ground against gravity.
Good points Judy.The core is definitely key to change in the young child and the prone position is important. We really do need to incorporate “tummy time” into the child’e routine. The change in sleeping position to on the back makes this even more important.
When would you recommend starting intensives? My son is 11 months old, 8 months adjusted. He just started commando crawling. He is weak in his right arm. He started out only using 3 limbs to crawl and added his right arm a few days later. He gets therapy at home through early intervention, nothing more.
I would look for a good PT in your area. He probably needs some support to assist in his crawling and moving up against gravity. The idea at this age is to see a developmental PT and then practice what you are learning at home.
We saw huge Improvement in all the area from 3 months to 2.8 years old. Extrapyramidal CP ( bilateral thalamus. ,Basal ganglia, brain stem damage).
He had a constant 12 visit a week visiting different therapist with different tecnique.
He never cried once and we learned a lot.
Most important those therapist were like second mamas for him. He hardly miss a therapy unless 1 or 2 months summer break very useful for him.Until his major seizure started with 90 min status. After that episode, after 4 months free now in a year we counted and documented 250 seizure (almost 1 a day) despite different AED. I can say that I don’t know the reason (medicine or seizure) in the meantime we moved in Italy with a totally different therapy approach 9 hours a week..but his development stop the day before the seizure and actually his balance and all oral skill became much worse. We had 3 negative aspect (1. Epilepsy 2. Medicine 3. Growth as he is 4 now, 4. Therapy change).
We are unable to take epilepsy under control and for me is becoming a priority compared to the disability itself as he looks like being still or even regressing from some point of view, unfortunately is not being follow up by expert epileotologist which listen and study his situation before giving med X or med Y, we are so frustrated and disappointed after the good result we have seen until 3 years of age. What are the suggestion in this case, i am a bit lost looks like impossible to come out and therapy issue is becoming secondary.Feeling king of loosing our last train.Thanks
Dear Luca, I think your priority is correct. The seizures are the biggest problem and the probable cause of his deterioration. The medications add to the problem, but controlling the seizures is the most important goal. I would find a neurologist who is specialized in seizure management.
Control is step one. If oral medications are not working you should ask about epilepsy surgery and other methods of control.https://www.epilepsy.com/learn/types-seizures?gclid=EAIaIQobChMI34ar_PGs1wIVhbjACh3XiQM0EAAYAyAAEgLbkvD_BwE
My daughter Emma has spastic quad cp and is 19 months. She seems to take 3 steps forward and 1 back in her motor development. She can now get a spoon to her mouth but has very poor trunk/head control. She even tries crawling with her legs sometimes but her arms and trunk have hard time supporting that movement. We just got refitted for a DMO. Hoping it helps her trunk support. We have PT 1 time a week and OT 1 time a week. Our physical therapist seems to work more on equipment modification during visits. I am grateful and confused. In the past we had another PT that really worked with Emma. Not just the equipment, high chairs, seats etc. I would love to have longer sessions of PT but not sure how. I work with her everyday but am also caring for her twin sister and baby sister. What is the most effective breakdown of activity in your opinion? I like the idea of longer concentrated sessions.
You certainly have your hands full! I would focus on truck support with the DMO. It usually takes awhile for it to arrive, but getting a SPIO trunk suit as a back up is helpful.Until you can support her core muscles, everything is much harder.Re the therapists, I would book a joint session with both the PT and OT to discuss equipment with you and come to some useful decisions. Some therapist tend to focus on equipment, but they also need to work with your daughter. The joint session can also be very helpful with shared goal setting, making sure they both are working in the same direction.If they refuse, speak to their manager and let her take on some of the problem solving for you.
Thanks so much for your input!
My daughter is now 2.5 years old and has spastic diplegia (gmfcs 2). She’s still not standing/walking by herself. All of her therapists believe that eventually she’ll walk independently but they aren’t sure about the quality of the walk and how it will look. I told them not once that I believe that as a smart motivated girl she’ll be able to fix her walking when she’ll be older, but they don’t hold the same approach. So reading that in the teen years we have another window for improving is very encouraging. The treatment we have now is 3 PT, 1 OT and 1 hydrotherapy per week. She’s progressing but it’s also very very slow. I’m thankful for finding your blog because for the first time I’m thinking that maybe it’a a good thing that she didn’t start walking by now. I’m thinking that we can start intensive treatments and by the time she’ll start walking she’ll be stronger and we’ll have less bad habits to fix…
It sounds as if you have some good therapists. There is no rush to have them walk independently.