My daughter was seriously unwell with PIMS

[Westie2012]

After what I can honestly say had been the worst week of my life I am so relieved to say that after just over a week in hospital on HDU we are finally home and back together as a family after our baby girl was very suddenly taken seriously unwell with PIMS . Last Sunday morning I took Maddie to urgent care after she developed a raging temperature of 39 and a rash . Original diagnosis in urgent care on Sunday morning of hand foot and mouth , we were seen by an advanced nurse practitioner who was concerned about possible appendicitis but after she spoke to a surgeon who wouldn’t see Maddie as her main symptom wasn’ tummy ache I was advised to take her home and give paracetamol , and go back if she got worse . Her temperature went down slightly at home but shot up again later so I took her back ,Maddie even asked to go back to the hospital . We were sent to Childrens a&e this time and I’m so thankful that we got Maddie there when we did . We walked round to a&e , Maddie was fine to walk round , she was alert and talking but within around 20 minutes of getting there she deteriorated so quickly . She went from being chatty and just a bit tired to being very drowsy and delirious . She didn’t know who I was, she just looked at me with a blank stare . She was just lying there , eyes closed , face flushed and moaning out in pain . Around 11pm she was taken up to the childrens ward , attached to a monitor , she needed canulas and blood tests . It took around myself and four nurses to hold her still, I stayed there but broke down listening to her screams . Monday daytime more tests , her rash had spread all over , her heart was going upto 176, she wasn’t moving her neck as normal so they decided to do a lumbar puncture to test for meningitis or encephalitis . They also mentioned PIMS. I’d never heard of this until that moment . A few hours later and the dr examined Maddie again and as she was able to move her neck normally they said the lumbar puncture wasn’t necessary so she was diagnosed with PIMS. The following day we were moved from high dependency to another room on a different part of the ward so I thought things were starting to improve . Early hours of the next morning Maddie’s bp was getting dangerously low . She was moved back to HDU and needed to be immediately given lots of fluids to try to bring it up and for a while it worked. This was essential but very distressing for Maddie . Her bp continued to improve then drop back down again . It came very close to Maddie needing to be transferred to a Childrens hospital for treatment . Her bp stayed just high enough to stay where we were . Over the next 24 hours things were slightly better , I was so scared every time they checked her bp. Every time the nurses came in to administer them through the canula Maddie was screaming and begging me to not let them do it . The drs were in daily consultation with Birmingham Childrens itu,and she was started on another different IV antibiotic. 24 hours later and she started to respond to the medication . Her bp had started going up to what it should be and her temperature started to settle down . Another couple of days on antibiotics and I started to see our daughter get back to her normal self . I was so relieved to hear her tell me she was bored and hungry . By Saturday Maddie was so much better, her appetite was coming back and she wanted to play and start doing things again . Sunday morning we were given the news we’d been waiting for that Maddie was well enough to go home after her last dose of antibiotics of the day, we’d have to bring her back the following morning for one final dose of antibiotics to complete her treatment . Three days after her final dose I of antibiotics and she’s completely back to her normal self , we’ve caught up on our sleep after 7 nights of being woken throughout the night for Maddie’s obs and medication . She will need further follow up appointments, two heart scans , she’s on aspirin and omeprazole for 6 weeks. Back to school on Monday . I’m so grateful to our NHS, all the drs and nurses on the Childrens ward and the team at Birmingham childrens hospital, thanks to all their knowledge and care we have our happy healthy little girl back at home . I’d never heard of PIMS, it’s the paediatric equivalent of long covid . Something needs to be done to raise awareness of this awful condition . It’s been a very d distressing week seeing Maddie so unwell and hearing her begging me to not let the drs or nurses administer her medication , put more canulas in or do blood tests . She’s amazingly brave , she’s had to cope with so much in a week and I’m so so proud of our little fighter .