No matter what country you reside in, it is important to educate yourself about the process to get the BEST care. In the United Kingdom, Great Ormond Street Hospital for Children (GOSH) has a team of mental health professionals with expertise in Hypothalamic Hamartomas (HH). However, because GOSH is a tertiary referral centre – they can only accept referrals from other mental health specialists – not GPs.
If your child has HH and is experiencing psychiatric or behavioral side effects of the tumor, the seizures, the meds, interventions or all of the above, ask your pediatrician or psychiatrist to make a referral to the GOSH team. Make the request early as it can take up to 15 weeks to be seen, sometimes sooner.
For more information about the UK referral process, click here.
All HH patients should have neuropsychological testing from a knowledgeable and well trained practitioner before and following any treatments to obtain baseline cognitive and other functions. Tests typically include cerebral functioning, intelligence, memory, problem solving ability, emotional development, and more. Results will inform treatment, management and necessary supports.