Cerebral Palsy and puberty

HM_SENDCo

Hi I am a SENDCo at a primary school supporting a young girl in Year 4 who has cerebral palsy and we think is starting to go through puberty. We have heard it can happen earlier in children with cerebral palsy is this right?

Are there any organisation out there that can support? We are in Tameside.

Thank you

Rosie_Scope

Hi @HM_SENDCo, welcome to the community.

I'm afraid this isn't my area of expertise, but I'm going to tag our Cerebral Palsy Lead @Richard_Scope, he might have some information and ideas to explore.

Hope you can find some support 😊

Richard_Scope

Hi @HM_SENDCo

Thanks for your post.

Children living with CP can begin puberty earlier than their non-disabled peers. This is called precocious puberty.

This is when a child’s body begins changing into that of an adult earlier than expected.

Children with neurodevelopmental disabilities like cerebral palsy could experience changes related to early puberty at least 20 times more often than their peers without cerebral palsy. There is limited information about this subject but there are screening tools and treatments available to manage certain types of early puberty and its symptoms.

There are two common types of early signs of puberty that we will discuss here including central precocious puberty (CPP) and premature adrenarche.

What is Central Precocious Puberty (CPP)?

CPP is the early activation of the hypothalamic-pituitary-gonadal axis (HPG). It is called “central” because puberty is being driven by the brain. Injuries to the central nervous system can cause central precocious puberty (CPP), so having cerebral palsy is a risk factor for this condition.

CPP seems to progress particularly rapidly in cerebral palsy. When the diagnosis of CPP is made in children with cerebral palsy, a great percentage of them already have an advanced pubertal stage and higher levels of certain hormones associated with pubertal development.

There are some hypotheses that intense activation of the hypothalamic-pituitary-gonadal axis in CP might be due to interferences in the number of neurotransmitter pathways involved in controlling these hormones

What Treatments are Available for CPP?

CPP is treated with medications called GnRH agonists. These medications, which vary in terms of how frequently they are given, block the activation of pubertal GnRH hormones. They can delay puberty until a more typical age, but no medicine can stop puberty altogether.

The common primary goals in the management of CPP include:

Delaying the advancement of bone age to maximize adult height:

Children with precocious puberty may first grow quickly compared with their peers, but because their bones mature more quickly than normal, they often stop growing earlier than usual. This can cause them to be shorter than average when they reach adulthood. Medically we are unsure of the impact of this disturbance in height development for children with cerebral palsy. Currently, there are also questions about the effectiveness of existing treatments in preserving height in individuals with CP. It’s important to discuss these concerns and the latest evidence with your child’s medical team.

Stopping secondary sexual development and menstruation:

CPP causes early development of sexual organs and the early onset of menstruation. This can be an overwhelming experience for a child, especially when their peers are not going through the same changes., or for young girls who are still learning to manage their own hygiene.

Addressing potential social and emotional difficulties:

Girls and boys who begin puberty long before their peers may be very self-conscious about the changes occurring in their bodies. It may affect their self-esteem and emotional well-being. In addition, as the brain enters puberty there are a host of changes in mood and behavior. Researchers are still learning about how a younger child is affected by these kinds of changes.

What is premature adrenarche?

In contrast to central precocious puberty, premature adrenarche is driven by the early release of hormones from the adrenal glands, rather than the ovaries or testes. These are mild “male”-type hormones, but are normally present both in girls and boys.

Signs include:

• Appearance of pubic and underarm hair in girls younger than 8 years or boys younger than 9 years
• Noticeable underarm odour and development of acne
• Sometimes accelerated height growth.

A diagnosis of premature adrenarche is made when these symptoms are present but without the simultaneous early development of breasts in girls or genital enlargement in boys.

Treatment for Premature Adrenarche

There is no treatment for premature adrenarche. Therefore, once the pubic or underarm hair develops, it will not go away. Treatments typically used for CPP are not effective for premature adrenarche.

The most helpful therapies for premature adrenarche are to address the symptoms such as using deodorant to control body odour and acne medications. Girls with premature adrenarche do not begin menstruating early.

I can recommend the following books to help a conversation with your pupil:

What's happening to Ellie?

The Young Girls' Puberty and Period book for ages 8 to 12

I'm not aware of any organisation that supports families of children going through early puberty specifically. Still, you could contact our friends at Action CP who may have resources for you to use.