Periods and girls with CDKL5

As our girls grow up, we then become faced with the onset of menstruation.  and as with all the usual challenges related to getting your period, some girls with severe disabilities may experience additional medical complications during menstruation. Some girls will adapt to menstruation with no problems whereas others, may experience significant difficulties.

Here we discuss different options for handling periods, as well as describe some of the additional medical complications related to menstruation for girls with CDKL5.

Medical Complications Related to Periods

Studies have shown that complications directly related to periods, such as cramps, heavy bleeding, irregular cycles, mood swings, and similar symptoms, occur in about the same proportion in young adults with disabilities as in young adults without disabilities. In other words, some teens will experience them while others will not. Most can be treated easily using standard remedies such as ibuprofen or heating pads for cramps.

However, menstruation may exacerbate other medical conditions. For example, more than half of people with seizures will experience an increase in seizure activity related to their menstrual cycle. Seizure activity may increase during time periods when estrogen is high and progesterone is low since estrogen can increase seizure activity. Some girls will need additional seizure medication at certain times of the month.

Similarly, girls with dysautonomia may experience an increase in symptoms during certain times of their cycles. Those who have autonomic crises may find these are more common during menstruation due to hormonal fluctuation.

Girls who have muscle pain, contractures, spasticity, neuropathic pain, or functional pain may find this pain increases during menstruation. Cramps may be worse in some young adults, and pain may radiate more than in girls without disabilities. Pain medication may need to be increased right before and at the onset of periods. Other strategies commonly used to handle pain, such as massage, heating pads, and stretching, may also need to be increased.

Other conditions exacerbated by menstruation include migraines, asthma, functional gastrointestinal disorders, diabetes and other endocrine issues, severe allergies, and some autoimmune conditions. Once a girl begins menstruating, treatment of these conditions may need to be re-evaluated.

Handling Periods

There are many options for handling periods in girls with CDKL5. For many kids, only normal menstrual hygiene will be needed. But for others who experience exacerbation of their medical conditions, hormonal treatment or suppression may be necessary.

Nappies and Pads

For girls with CDKL5 if they have no significant medical problems exacerbated by menstruation and their periods are relatively light, normal use of nappies may be sufficient to handle periods.

Those with heavier bleeding may want to place a pad inside the nappy for additional absorption. Pads tend to be cheaper than adult nappies and may be more cost effective for some families. Your local continence service will be able to help with supplying nappies.

Suppressing Precocious Puberty in Younger Children

Some children with severe disabilities may get their periods very early, sometimes as young as four or five years old, due to precocious puberty. In these children, suppression of puberty may be advisable, and periods will usually stop.

Typically, children receive medication to slow the process, however, because there may be long term side effects with these medications, they should only be used to suppress early puberty and not on an ongoing basis.

Birth Control Pills or Patches

Girls who find their medical conditions are exacerbated by periods may find regulating their cycle with birth control pills or patches will help minimize these effects. Different types of hormones may be selected depending on the symptoms that have increased.

For example, a progesterone only pill may work for girls who tend to have increased seizure activity during certain times of the month. Pills and patches may be used for three weeks and then withdrawn to allow menstruation, or they may be used continuously.

Birth Control Injections or Implants

Girls whose medical conditions are exacerbated by their periods may also find birth control injections or implants to be very useful.

These often reduce or even eliminate menstruation and provide a steadier hormonal state. Injections are typically given every three months, while implants can last from one to four years.

Using a longer-term method such as injections or implants may be easier for girls who want to minimize the need for daily medication.

Hormonal IUD

Another option for girls with medical conditions worsened by their periods is the hormonal IUD. This is a small device placed in the cervix that delivers hormones for three to seven years.

It may reduce or suppress menstruation and creates a steadier hormonal state. However, placement can be painful and difficult in some children with contractures or other muscle problems. Placement may require sedation.


The vast majority of girls with severe disabilities will be able to handle their periods with minimal changes in their care. For many, nappies and pads, plus a little ibuprofen for cramps, will be all that is needed.

Those who do experience medical complications from their periods now have a wide range of options to reduce these effects through commonly available hormonal treatments. While worrying about puberty is inevitable, most parents find simple and easy methods to handle menstruation.

Thank you to for allowing us to use their content in this page.