Betsy

“Betsy was over the moon to receive A Little Box of Hope from Juvenile Arthritis Research. She was happy to hear that she wasn’t on her own through this journey; there were others in a similar position as her and things were going to be OK!”

Betsy is 11 years old. She became poorly on her 10th Birthday in December 2021. In hindsight, we had probably started seeing signs in January 2021, with signs of Raynauds and aching joints, but I hadn’t really thought much of it. 

Betsy made the decision to give up dancing in July 2021 as she complained that it made her knees hurt too much. I put the pains down to growing pains. That same year, in October, we went away with my parents and Betsy’s fingers went almost purple as they were so cold. My mum who was a nurse told me I needed to make a GP appointment to get it checked as she explained to me that Raynauds can be a secondary issue. 

We went to the GP a few weeks later and they requested bloods to check her immune system. I was still awaiting the blood results when on her birthday Betsy was presenting as lethargic, with a really sore throat, no energy to get up or move about and was refusing almost all food and drink. I ended up taking her to A&E the next morning. 

My worries were dismissed and I was advised to look up how to treat a sore throat on the NHS website and sent away with a prescription for antibiotics. I left it for the weekend for the antibiotics to work, but Betsy continued to deteriorate, she couldn’t get out of bed without help, she looked pale and extremely unwell so I booked a GP appointment on the Monday. We were seen by the GP in the afternoon and he advised that we try a different course of antibiotics and give her another 72 hours to improve. 

At that point, my mother’s instincts kicked in and I told them that I couldn’t leave it that long. The initial antibiotics had made no difference and I wasn’t prepared to see where we were in another 3 days. I was told my only option was to go back to A&E for more blood tests. So that is what we did. 

This trip to A&E was like attending a different hospital. The Paediatric Consultant that we saw was absolutely amazing. He gave Betsy a thorough check and found quite substantial lumps in her neck (her lymph nodes were enlarged). He informed me that she would be admitted whilst they carried out more blood tests and they started her on IV antibiotics.

Betsy continued to deteriorate and it was so distressing for all of us. Due to Covid restrictions she could only have one person with her and it was restricted to just parents. 

I would be there in the afternoons and overnight and my husband sat with her each morning so that I could go home and freshen up. The hospital tried two different types of IV antibiotics and there was still no improvement. 

I asked them if they had looked at the blood test results that the GP had requested the month before. That was when they made the decision to contact the Evelina Hospital in London for advice. Betsy was then started on IV steroids and we were transferred to Evelina to be seen in the Rheumatology clinic where Betsy was diagnosed with Mixed Connective Tissue Disease. Part of her condition is Polyarthropathy (JIA), Lymphadenopathy, Splenomegaly and Raynauds. We were transferred back to our local hospital to finish IV steroids, before being discharged - after a 10 day admission (just in time for Christmas!) with steroids to take at home until we were next seen in clinic.

We were completely overwhelmed and devastated, we didn’t have a clue what this diagnosis meant for Betsy or us as a family and what the future may hold. We were given absolutely no information or support. 

We had a follow up appointment booked at the Evelina hospital for the end of January. I turned to Google for information (not my wisest idea) and Facebook groups for support.

At our appointment in January, Betsy was prescribed weekly Methotrexate injections and Hydroxychloroquine. I still didn’t really get any answers about what we should expect. I took a list of questions with me which I totally forgot about, trying to listen and concentrate. Covid restrictions meant only one parent could attend clinic so I felt a lot of pressure to ensure that I remembered everything that was said to relay the information back to my husband and other family members.

To be completely honest I still don’t really understand everything properly, but feel I’ve been to too many appointments to ask ‘silly’ questions, we just take things as they come.

Since the initial diagnosis Betsy has been pretty stable, she still experiences regular discomfort in her joints. She has good days and bad days but they tell me that her blood test results show no inflammation at present. We have been lucky in that Betsy has experienced minimal side effects from the medication, mainly just tiredness the day after Methotrexate.

In clinic in July 2023, Betsy was spoken to about weight loss. She has no appetite and doesn’t get much enjoyment from food, but she had a significant growth spurt but had lost a bit of weight, so they spoke to her about trying to eat more!

Due to the Raynauds, Betsy hasn’t been able to take part in any outdoor sports during the colder months at school (even though the summer affects her as much as the winter). We started Betsy with swimming lessons. She could already swim, but we felt the regular lessons may help with her muscles and joints. She tires quickly during the lesson, but we are hoping its helping. The clinic advised that yoga is also a good exercise to do, so she has also started that. She absolutely loves it and says that it really helps with pain, so that’s a positive!

I came across Juvenile Arthritis Research when I was on one of my Facebook searches, we had a look at their website and found ‘A little box of Hope’, I ordered it, but didn’t tell Betsy as I wanted it to be a surprise when it arrived. aBetsy was over the moon to receive it and was happy to hear that she wasn’t on her own through this journey, there were others in a similar position as her and things were going to be OK! 

Betsy took the box into school for ‘Show and Tell’. Her classmates knew she had been unwell and in hospital, but it was hard for her to explain what was actually going on, partly because none of us fully understood it, but it gave her something to show her friends and to look through with them.

In August 2022, Betsy decided that she wanted to raise money for our local children’s ward after she had spent so much time there the previous year, so decided that she would do a sponsored walk. Betsy set herself a target of walking 10 miles through October, I posted it on my Facebook page the response was overwhelming. Betsy started walking and the donations started coming in and before we knew it, we had raised hundreds of pounds. Betsy decided to carry on walking and by the end of the month had managed 22 miles and raised over £1500 in cash and gifts. We were completely overwhelmed! I spoke to the ward and we arranged to spend the money on presents that could be on the ward for children admitted over Christmas. We shopped and shopped and just couldn’t spend all the money, so I contacted them again and they gave us a list of some bigger items that they needed for their playroom and garden. We were so proud of Betsy when we arrived with 2 cages full of gifts and a playhouse for their garden!

Betsy has decided that she wants to complete a yearly fundraiser as it was amazing for giving her motivation - a reason to get up and about! She has just completed a sponsored walk for Juvenile Arthritis Research too. 

We still aren’t completely sure what the future will look like, but, for now, Betsy is happy and settled. She has adjusted to her ‘new’ life. She knows her limits and is quick to let us know if she is reaching them! Betsy is off to secondary school this year and they seem to be supportive of her condition and keen to help her in the right way.

If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org

For support at school, please visit our Parent Zone. Schools can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/toolkit 

Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.

For support with Mental health and needle phobia, please see our Mental health and wellbeing page here.