Rowan's Story | Childhood CIDP

Thanks to Rowan's mum, Anna, for sharing his story

Before Rowan’s diagnosis of CIDP, he was just like any other little boy. He was two and a half when his symptoms first began, but up until then he loved playing around on his balance bike, kicking a football, playing with his sisters. As the youngest of four, he was beginning to carve out his independence. He was a chilled, happy child, sleeping well and enjoying nursery.  

It all started in November 2020. One morning, Rowan woke up with a strange walk, almost as if he’d slept on his leg funny, I thought he'd pulled a muscle or something simple like that. As the days went by, he started walking with an abnormal gait. In the following weeks he could no longer stand up from the floor, unable to kick a ball or ride his balance bike.  

All the things a little boy of his age should be doing, he was unable to do. By Christmas, he was pushing a chair around nursery just to help him stand after falling. 

We went to the GP in December, and in January 2021 we saw a Paediatrician. The Paediatrician initially thought he was fine and had no real concerns. I expressed my worries further and he realised rowan couldn’t get up from the floor. He checked for reflexes and there was no response. He asked us to wait in the waiting room while he called Alder Hey Children's Hospital. We were seen by the Neurologist within a few weeks.  

His consultant first suspected SMA type 2. Rowan had blood tests, an MRI, a lumbar puncture, and EMGs. Finally, in April 2021, we were told it was CIDP.  

With Rowan being so young, he didn’t understand what was going on. He became frustrated, angry, extremely clingy. He was hurting constantly and crying. He became a completely different child.   

Rowans team at Alder Hey started care and support the very first day we saw them. We had Consultants, Specialist Nurses, Physios, OTs, and a few years after diagnosis, a Psychologist, Care Advisor, and Play Specialist to help with his needle phobia and fear of health professionals. Even now, four years post diagnosis, he finds it very difficult when we have reviews and struggles to have blood tests. 

Back when he was diagnosed, they wanted to begin IVIg straight away, but Rowan was terrified, so instead we started oral medication.

For about a year, it kept things mostly under control, though he had two minor relapses. 

Then came July 2022. Rowan had a severe relapse. He couldn’t walk, couldn’t use his hands. He couldn’t even push the buttons on the TV remote or hold his juice bottle, or carry his blanket. He was admitted to Alder Hey for emergency IVIg.  

For a boy with a deep fear of needles, getting cannulated was a huge deal for him. His play specialist had worked with him for a year by then, and thanks to her, he managed it, she has been a star.  

We were in hospital for five days and he coped amazingly well being there. The IVIg worked, and Rowan was able to walk out the hospital. 

A port was fitted in August to make future IVIg less stressful for Rowan as they were planned to be given every five weeks, it would save him from being cannulated.  

Unfortunately, the port failed so they agreed to take it out. After the port was removed, IVIg was stopped. It became too much for Rowan. His last IVIg infusion was at the end of 2022 and since then we've managed his symptoms with oral medication.  

When we saw the Neuromuscular Team at Alder Hey and they diagnosed him with CIDP, it hit me hard. For the longest time, I felt like I was grieving. It felt like I had lost my little boy.  

This had a negative impact on our marriage. We both coped with it very differently. It took us a good while to accept that our son had a neuromuscular condition, and a rare one at that! 

But Rowan’s care team, our wider family, and my mum (Rowan's Nan), have been incredibly supportive. 

Now I'm not grieving, I haven’t lost my little boy, I’ve just gained something extra. Rowan has a diagnosis of XYY too, so there's even more to love. 

Rowan has a good circle of friends now, both at home and school. On good days he plays all day, he's been diagnosed with ADHD, so he tries his best to be on the go all the time! He can become frustrated easily, but I think it also depends on his energy and pain levels. He doesn’t always recognise that he needs to pace.

We’ve raised funds for an all-terrain chair, which is the best thing we've ever bought. We raised over £1,000 and the rest was provided by the Steven Morgan foundation. When we go out, and depending on where we go, I will take the chair or take his disability push chair. This isn’t just for his CIDP symptoms, it's to reduce his sensory input too.

Now, nearly five years on from his diagnosis, Rowan knows no different. He is still a problem solver and will do things slightly different to his peers. As he’s getting older, he’s becoming more aware of his disability and has started to ask questions such as, "“why do legs ache?” and “why can't I run as fast as my friends?”. 

On bad days, he’s asked why his hands don’t work. He often asks why he has medications (twice a day). I've made a bespoke pain chart for him. We use it so we can all understand how he’s feeling. I'm happy to share it with others if it

can help.  

For the longest time, I felt alone. I thought Rowan was the only child going through this. After coming across Inflammatory Neuropathies UK and the Facebook group – Parents of children with CIDP, I started to feel less alone.   

In the past rowan has had to have a liver scan, DEXA scan for bone density, we have regular blood tests, and we have emergency hydrocortisone injections due to his adrenal gland “being asleep” and not releasing cortisol due to the medications. Through all of these things, I've been able to find comfort from the support network.