#7 Birth to 4y – Change the Label to Get Early Cerebral Palsy Treatment

Most humans do not like change, but the scientific reality of baby brain neuroplasticity demands a change in the timing of a cerebral palsy diagnosis. Why? Because specific CP treatment, in most parts of the world, is diagnosis directed. The result is that many babies with diagnosed early brain damage are denied lesion-specific treatments for 3 to 6 years. Yet, the exuberant change possible in the first 4-6 years has been recognized for decades. The first hemispherectomies were done in the 1960’s!

What Can You Do With Half a Brain?

Trying to get an earlier diagnosis is difficult, largely due to well-meaning doctors who may be suspicious of CP but are unwilling to commit to either the type or potential severity of the problem. The almost universal cope out is to label the child with a diagnosis of Developmental Delay … often given with the advice to “Wait and See” how the infant progresses.

A developmental delay diagnosis gives parents access to funded Early Intervention programs that do fill an important need. But they do not provide early, focused lesion-specific cerebral palsy treatment without a diagnosis. This system is not good enough! The data is accumulating, but most NICU Follow-up and Early Invention Programs are either not reading the studies or not listening to parents who usually suspect a problem. In   my long career, I have rarely surprised a parent with a CP Diagnosis. The vast majority of families given a diagnosis respond that they are grateful to have their suspicions confirmed and ready to do whatever they can to improve the baby’s condition.

So, what is the best way to change this established system of “wait and see”? The CP Alliance Research Foundation in Australia is leading the way with the evidence-based information and new research studies to back up the need to change.

https://research.cerebralpalsy.org.au/news-and-events/

https://jamanetwork.com/journals/jamapediatrics/article-abstract/2636588

The problem is that in my experience, many health care professionals are particularly resistant to change. The dirty little secret that we doctors rarely discuss is that if it is true that babies can be diagnosed with CP as early as 12 weeks corrected age, then all those “wait and see” doctors will have to accept that he or she has been handing out incorrect information for many years.

The key point is that although there are progressively more accurate means to diagnose neonatal brain damage, neonatologists and cerebral palsy experts have generally not changed their attitude about early, lesion-specific intervention. So, rather than waiting for a massive change of attitude, I suggest a change in the diagnosis. If a child has clinical and/or scan evidence of brain injury or maldevelopment, let us all agree to a diagnosis of “At Risk of Cerebral Palsy”. This will identify the need for lesion-specific handling and positioning instruction as well as timely introduction of specific therapies for the infant or toddler. No parent will sue for a wrong diagnosis if the child improves and I believe most families will cope better knowing that we all are doing our best to maximize a good outcome.

Some of the new treatments and technologies being developed will need further study to assess their usefulness in babies and toddlers, but in the meantime, some interventions are painfully obvious. I will write more on this in future posts, but I summarize a lot of the intervention options in my book, The Boy Who Could Run But Not Walk: Chapter 11; What To Do in the First Four Years.

https://www.amazon.com/Boy-Could-Walk-Understanding-Neuroplasticity/dp/198802505t

I look forward to your comments and stories of your experiences obtaining a CP diagnosis.

 


14 Responses to “#7 Birth to 4y – Change the Label to Get Early Cerebral Palsy Treatment”
  1. Carrie says:

    Wondering what your thoughts are on a CP diagnosis if a child’s MRI is normal? My 4-year-old has Ataxia and she was given a clinical diagnosis of CP so we could get insurance coverage for therapy. She’s improved tremendously with the 3 years of PT and OT. Our new neurologist does not believe it could be CP because of the clean scans/no birth trauma. He wants to pursue genetic testing. I’ve read elsewhere that a child can still have CP with normal MRI scans. It’s exhausting trying to find answers and I’d like some peace of mind that what she has isn’t progressive.

    • Karen Pape says:

      Great question Carrie. It is a hard one and terribly frustrating for you and your family.I would do the genetic screening. The diagnosis of Ataxia is one of those that may be familial, so I think genetic testing is worthwhile.The good news in your email is that your daughter is improving.

  2. Laura Swartzel says:

    Thank you for this post. I have been waiting for years for this information to be confirmed. We had a Wait and See diagnosis for five years, and felt so frustrated when we discovered that our doctor had been writing in our son’s notes that he had spastic diplegia for two years, but didn’t tell us directly. We found out when we requested a copy of his notes for another doctor. So much time lost. The only thing that hurt more than finding this out so late in the game was being told that cerebral palsy is non progressive – meant to reassure, but very misleading as the effects of cerebral palsy most definitely progress, and there is a lot we can do to change that if we are made aware of it.

    • Karen Pape says:

      I am sorry to hear your story. The first doctor was obviously working under the assumption that there was no effective treatment – we know that this is wrong.The good news is that I have seen terrific gains even in adults and definitely in children and teens, even when treatment is started later.

  3. Lisa says:

    Our son got a cp dx at 2 his first MRI without contrast was clear the diagnosis was based on clinical history and clounus on his left leg. At around 4 his right leg started to have clounus. MRI with contrast at 7 showed some damage. Is there a difference between a contrast and a non contrast MRI when it comes to dignosis?

    • Karen Pape says:

      You should ask your neurologist about the scans. There are differences between the contrast and non-constat scans as well as the resolutions which depend on the unit and the analysis.Your question should be whether or not this change is the result of a progressive problem or not. Hope this helps.

  4. Pamala says:

    My soon to be 4 year old son has CP right side is weaker. Unfortunately he also has seizures and is considered non verbal. Up until recently all drs and specialists thought he would speak now they don’t hold too much hope and have suggested I get him a I Pad. He has many words and understands a lot his processing is a little slower than most kids his age. Physically he is doing great walking, fast jogger, no jumping yet can climb and walk up steps and great balance. Due to his epilepsy he will soon very soon have surgery a disconnection of his left side hemisphere I wonder how he will be physicallly afterwards. Doctors feel he may be the same or weaker than now but by not much. He uses the right hand almost 70% of the time and is very aware of it. Is there still neuroplasticy even when a hemisphere is disconnected? Do you think he can still learn to talk?

    • Karen Pape says:

      The treatment of his epilepsy has to come first. It is the most serious problem he has. I would wait on the speech issue to see how he does post surgery. It is remarkable how much speech is possible even after a left hemisphere disconnection or hemispherectomy.An iPad may be quite helpful is social and learning environments, but that does not necessitate giving up on speech. The brain is capable of reorganizing and reallocating resources throughout childhood and adolescence. There is often recovery even in adults.

  5. Rauni Hemsen says:

    Dear Karen

    I had a training in the method created by Moshe´Feldenkrais in 2000. A couple of eyars later in 2002 we got a grandchild that was without tonus after the birth and later the baby just turned to one side.
    My “diagnosis” was that the child had cerebral paresis.
    Because during my training I had seen many CP babies be stimulated by our teacher Mia Segal, I knew how to do it. Very early ( say second week) in our baby´s life she was simulated every day, the way Moshe Feldenkrais showed. The baby walked normally at age 13 months. Later I touched her spine and she realised how she was able to move the spine more freely.
    She is a beautiful young girl of 15..
    I feel very thankful for Moshe`Feldenkrais and I would like to pass his wisdom to other newborn babies.
    In Norway Lars Adde has developed early diagnosis. And there is going to be a meeting 26. Jan in Oslo to share aspects about Cerebral Palsy.

    Unfortunately the habitual way is has bad results but the practice seem very important for those who earn their living by taking care of Cp children .
    Rauni Hemsen

  6. Ally Phayer says:

    Hi Karen, I am at my wits end and desperately need advice. My son had a hemispherectomy last April, at 12months old, at Great Ormond Street Hospital. He is now 21 months old and has learnt to do amazing things! He learnt to do the traditional crawl again at 6 weeks post op, sit, roll, he can now walk and even fast walk/into a run and he even did a little jump today!! His physios are of the old school approach (we are in the U.K.) that he needs to have an AFO/leg splint, as he has a foot roll. He does have a foot roll, on both sides in fact but worse on the hemi side (he has a bit of hypermobility too). My other son also had feet that rolled in but is now 3 and this has massively improved with the development of the foot and arch as he gets older, they are barefoot a lot of the time. I don’t want to introduce an AFO or something that is going to turn off the muscles that could activate the neural pathways relevant to foot positioning. He does not trip, nor is it hampering his abilities but still they will not stop about the AFO, implying I may hurt the rest of his body without one. I am struggling to find anyone willing to look at new approaches and how surely brain plasticity must apply to the foot as well? Why am I constantly encouraging use of his left hand when I am putting his left foot in a splint? Any advice would be greatly appreciated, Ally

    • Karen Pape says:

      Dear Ally, you ask a great question and one that is very common in treating children who are doing well.How much to correct and when? I would use an AFO(s) when he is on uneven ground or walking a long way. And he will probably use it more for this over the next few years. It is important that he get a good walking pattern. Your other son managed to compensate for his ankle problems, but he did not have a neurological problem. The therapists are correct in stressing this now as your son is in an active period of growth. Children grow to 1/2 their adult height by 4 to 6 years and this is the time that imbalances are important to prevent increases in tone. Re the hand and arm use, If he keeps the thumb out and can grasp well, then I would just keep reminding him that the left hand is part of his body too. Most studies indicate that bilateral hand use toys and activities are most helpful at this young age.If his grasp is less that optimal, I would also use a simple splint to stabilize the wrist and keep the thumb out when engaging in hand play of activities.https://mckiesplints.com/ Hope this helps.

  7. Niamh says:

    Hi Karen,
    Firstly, I would like to thank you for publishing your book. I am half way through it and it is keeping me away from google and providing some much need insight and positivity. My daughter was born 4 months ago; unfortunately I had a uterine rupture (very rare as I had an unscarred uterus and had a previous normal vaginal delivery) at the end of the labour and my beautiful baby girl suffered oxygen deprivation. She was sent for brain cooling and had two seizures at day 2 and 5. Cranial ultrasounds on day 2 and 4 were both normal but unfortunately following an MRI on day 6, we were told she had moderate brain damage, specifically the MRI showed increase T1 signal in the lentiform nucleus and anterolateral thalamas bilaterally. We were also told she was at risk of cerebral palsy. An EEG also showed hyperexcitability and placed her on the low epilepsy threshold. She spent 2 weeks in NICU and another 2 in hospital to establish feeding. She was peg fed, then NG tube, then bottle and moved exclusively to the breast at 5 weeks. Since the worst day of our lives getting that MRI report, our champion has made great progress. At 3 months, our neurologist did another EEG, which was normal and we are now weaning her off meds. She is smiling, her significant head lag has improved to almost normal for 4 months and at our 4 month check up, our consultant said she was delighted with progress, particularly in the communication field. She also said that our little lady is showing no signs of CP or any tension in her limbs yet. We were told to wait until she is 2 to see what effects the brain damage will have on our little girl, but I’m wondering whether her early good progress suggests anything. I am aware that 2 years is the best indicator, but I can’t help but wish this magical time away. Also, the longer she continues to make progress, does that somehow move her closer to mild effects or is that wishful thinking?
    Again, thank you for your dedication to your book – it’s a wonderful expression of determination!

    • Karen Pape says:

      Thank you for sending along your story. I agree that things are looking up. A couple of points. Early MRIs have been shown to be less than perfect predictors of outcome. 6 to 12 months of age is more predictive. Normalization of the EEG is also good news. I would take a diagnosis of “at risk of CP”, based on the clinical history and get her in a early intervention program.It helps. Also check out HOPE for HIE at http://www.hopeforhie.org thay have lots of great information and an active parents group.

      • Niamh says:

        Thanks Karen. We’re in an Early Intervention Programme and have been with two amazing physiotherapists since she was 5 weeks old, who I attribute a lot of our daughter’s progress to. I will also continue reading the book and would advise anyone in a similar situation do the same. It’s an inside to a field I knew nothing about and now, more than ever, need and long to know everything. Our little lady will hopefully bear testament to the neuroplasticity of the infant brain. We move forward with hope.

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