Young people & Carers: Tips for Parents

These tips were devised for parents by parents of children/people with PoTS. They are intended to complement the usual health and lifestyle advice for the management of PoTS and should not be seen as a substitute for professional advice.

• Resist talking about PoTS all the time to your child. As parents we spend a lot of our time thinking about it all, so this is not easy to do.  Instead, try setting a regular time in the week to discuss it. Give them time to adjust to and gradually accept their diagnosis.
• Maintaining a child’s friendships is important.  Think about doing things differently e.g. having friends round instead of going out, dinner party at home, use taxis, craft afternoons, and social media can be a blessing.
• Staying in the education system.  Get the school involved as early as possible.  Never stop pushing the system when necessary. Ensure a balance of study and rest. There is advice here: Special Needs Jungle.
• Taking time out of the education system.  Education may slide down the scale of importance versus health and well-being. Having to take time out of school/college/university is sometimes necessary. Both you and your child can feel like failures.  You are not; sometimes opting out, taking that pressure off, is the best option and the bravest thing to do.
• Believe your child.  You cannot experience their symptoms, but you can see how they respond. Sometimes parents worry that children will over rely on the ‘I’m so tired/poorly I can’t do that now’.  You will learn this is not the case as they crave having more energy.
• Maintain your child’s independence as much as possible.  It is so easy to want to wrap them up in cotton wool to protect them.  They will be missing out on so much anyway, don’t deprive them of even more.
• Relaxation & sleep.  Your child will often want to rest or nap; don’t underestimate the power of a nap. Rest time is often so important though can be difficult to build into family life.  However, too much daytime napping can affect sleep at night.
• Exercise is so important, even if it is just a short walk.  The challenge is often getting your child to do it as they may feel unwell in the short term but do persevere where exercise is appropriate as for most it can help symptoms in the long-term.
• Encourage your child to try new things, hobbies and interests they may never have done had they not developed PoTS.
• Depression and anxiety are very common in people with long term conditions; do not underestimate the impact having PoTS can have on a young person’s life.  It can take many years for them to come to terms with it all. This page may be helpful: https://www.potsuk.org/managingpots/help-managing-anxiety/
• Coordinating care becomes a major role for parents. You are in the centre of it all. Keep records and take copies of letters/results to consultations. A short summary, single page with bulleted past medical history (including dates) medication and symptoms (in order of severity) can be really useful to hand over in consultations. 
• Navigating your own clinical pathway. Remember to seek help from the right people. You may need support from Occupational Therapists, Physiotherapists or Rheumatology for example. Managing co-morbidities (other conditions your child may have) with no clear clinical pathway in the NHS is a challenge. It is important to do your research on what is available and what may help your child.
• Keep a symptom/trigger diary. Sometimes it can be difficult to explain multiple symptoms for PoTS. Keeping a symptom/trigger diary can help toward evidencing changes.
• Encourage your child to take ownership of their illness. They are more likely to feel well if they feel in control of their own health problems and have a say in what is happening to them.
• Benefits – Explore what benefits and support are available. You may find this page helpful: https://www.potsuk.org/managingpots/https-www-potsuk-org-managingpots-disability-help-2/
• Look after yourself too. Along with the usual healthy lifestyle advice do remember take time out to keep yourself well. Speaking to friends or professionals, or finding something positive to do can help you to feel in control. PoTS UK also run an online peer support group for Parents and Carers. More info can be found here: https://www.potsuk.org/events/pots-uk-online-peer-support-groups/
• Facebook Support – There is a very helpful Facebook page called ‘Parents of People with PoTS UK’. This group is NOT run or monitored by the charity in any way, but we get lots of feedback from parents about how helpful it is.
• Being a carer.  Recognise that you are a carer and take time for yourself. https://www.carersuk.org/ 
• Sharing too much. Remember that their medical details aren’t yours to share without permission, especially on the internet.  It’s one thing to you seek advice or signposting, but another to share private and intimate information or photos of your child without consent.