"My daughter's health journey & treatments"

My daughter (a teenager) was diagnosed with Crohn's disease in 2023. Prior to this she spent a week in hospital in 2019 when, we think, there may have been an early indicator of this which then settled a bit for a while.

In 2022 she went to the GP with foot pain which resulted in an anaemia diagnosis. It was only when her body wasn't absorbing the iron supplements that this led to the diagnosis of Crohn's.

The journey to diagnosis was long & painful for her where there was a number of hospital visits/overnights with no stronger pain relief despite being told that they would give her that if the home solutions weren't working.

Upon diagnosis she was closely monitored while on a liquid diet for 8 weeks. She then took part in the CD treat diet but had to quit this half way through due to it impacting both her mental, physical, emotional & social wellbeing & health. On her first medication (Azathioprine) her levels were not moving in the right direction so she was put on steroids too. These helped slightly with the pain however her levels did not go on the correct direction. 

After the course of steroids she received further scopes to check what was going on before being started on infliximab infusions along with the Azathioprine. Due to her immunosuppression she has been given additional vaccines for various illnesses.

These, however, have been a bit of a hassle as we have experienced being scheduled then sent away a due to a community vaccination team telling us she couldn't get a vaccine as it was the wrong clinic. After trying to get this sorted on 2 more occasions, she eventually got it.

She then had together her school booster. This was postponed a year as she was unwell at the time. She will now be due to get in in early 2025.

Her pneumococcal vaccine has been rescheduled twice by the community immunisation team. The first time was understandable as it was the day after an infusion however the second time had been okayed by her IBD team because it was a week between vaccine & infusion but the community team called just before it to reschedule because they said  it was too close. We feel there is to many variants & different thoughts within the NHS system in relation to when things can/can't be done.

The school immunisation team have been fantastic, communicating & coordinating with me over all the different vaccines given at school & putting in placement procedures to protect her while these are being done, for example, being given her vaccines first in the day so as she is out of the area before they start giving live vaccines, checking other vaccine info out for me & ensuring we are kept informed at all times.