Rowan's CIDP Journey

29/11/2025

Rowan has molar incisor hypomineralisation, which isn’t caused by steroids. It’s to do with the development of enamel from birth to three years.
He needs at least 2 teeth out. The crumbled one, and the one directly above it. That’s to support with the back tooth closing the gap.
There’s a good chance he’ll need the right top molar taken out, but they can’t confirm until he’s asleep and have more X-rays.
Today’s x ray shown that all 4 canines are pointing in a funny direction- like a 45 degree angle. So to prevent a second general anaesthetic, she’s asked for orthodontist input. That’s because they may suggest more teeth need to be removed to support with the growth of the canines.
The only issue is, they meet once a month, so they may be able to discuss it before Christmas.
Surgery is a given, that’s definitely happening. She was going to sign the consent forms today, but because of the canines, she’s waiting for the orthodontist input.
Once surgery is set, she’ll liaise with his Neuro team.
Risk of infection is high, which is the opposite of what my dentist had said. So we’ve discussed symptoms and what to look out for.

11/11/2025

Rowan sees the dentist every 6 months, he has from a baby.
Over the weekend he was complaining of his mouth hurting. I checked it out to see his adult molar tooth had the biggest cavity, exposing the nerve.
Rowan was last seen in April, it was only last week that I had my reminder text to book an appointment with his dentist. Seeing his tooth in that state made me feel so sick.
He had an emergency appointment with the dentist this morning, and confirmed that his tooth had decayed in just 6 months.
Rowan has good oral hygiene, he eats sweets and sugary snacks, but not to the extent of a tooth decaying in such a short space of time.
The dentist suspects the tooth has structural weakness, caused by my factors but the biggest being on long term steroids. He’s explained with the molar having structural weakness; there’s a good chance that the other 3 will also have it.
Now as Rowan is immunocompromised and at risk of adrenal crisis, an urgent referral has been made to Alder Hey dentist team with his care team being aware of the situation so they can act accordingly. He’s on a week of antibiotics to treat/ prevent any infection.

This isn’t just a case of a little boy needing to have teeth out, this is a little boy who hasn’t had his adult teeth for that long and already needing to be removed. Not because of poor oral hygiene, but because of medication that is allowing Rowan to be mobile. To walk, run, ride his bike, all the things a 7 year old does. The steroids stop, all these activities stop too.

Rowans dentist thinks that the best way to go would be knock him out, take the 4 teeth out and x ray to see if other teeth are also affected. For anyone, surgery brings risks, but surgery for Rowan brings scary risk. His adrenal function needs to be carefully monitored and then with hope a relapse doesn’t occur and prevent infections. We then need to discuss the future of steroids.

This is why it’s not just a case of a little boy needing a tooth out, this is about saving adult teeth while weighing up the best way to support his mobility, prevent any relapses, and protect his adrenal function.
It’s not easy.

05/09/2025

Inflammatory Neuropathies UK have made their on story on Rowan 🩵🐢

https://www.inflammatoryneuropathies.uk/post/rowans-story-childhood-cidp?fbclid=IwZnRzaAMn_vBleHRuA2FlbQIxMQABHiJzReoJJx-_LP08p7cOF12meP-MZ-JoXIwtruGvzjwDP2_qdPuk8cSyZoJI_aem_4peKTxd5344ztdvuScWRFw

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.

05/09/2025

😍

Inflammatory Neuropathies don't come with an age restriction. They can impact anyone, at any point in life. Anna's little boy, Rowan, was only two and a half when he developed a strange walk, almost like he'd slept on his leg funny or pulled a muscle.

He'd soon be diagnosed with and be surrounded by a wonderful care team of Consultants, Specialist Nurses, Physios, OTs, and a few years after diagnosis, a Psychologist, Care Advisor, and Play Specialist.

Visit the link in our comments for Rowan's journey (a huge thank you to mum, Anna, for sharing his story).

04/09/2025

The start of Kestrels class 🩵🩵

03/09/2025

Rowan had his review recently with the paediatrician. We spoke about the risk when it comes to measles; I knew to some extent. Rowans had one out of the two vaccines due to being on steroids; he can’t have live vaccines.

In a child with no steroids, one dose would give a 90% protection from measles. Rowan is on two medications that suppress his immune system, so he has little protection and extremely vulnerable.

His paediatrician did say for the last two months, measles have reduced, although he suspects that’s due to the school holidays.

If your child hasn’t had the vaccine, please get them vaccinated 🙏

14/07/2025

There’s more to than what people think. The seriousness of it isn’t seen until you’re given things like this..

27/06/2025

3.5 hours at the Hey we’ve done today.
5 professionals in his review appointment, he certainly likes all the attention this boy.
Steroids are staying as they are for at least 2 years. Each time he’s been weaned off, he relapses, so the idea is to give him a bit longer on them. It’s only a very small dose so the side effects are less, although it’s still not great for his adrenal gland to be asleep for that long really.
Azathioprine is staying the same; he won’t be weaned off that until he’s stable from having no steroids.
We’ve had no gabapentin now for a few months, which is a positive step!
We’ve been given hydrocortisone to take away with us as a just incase, but it needs to stay in the fridge 😒 so god knows how that’s gonna work with flying.
He’s lost 8kg in 16 months 😱 which is amazing! He was very overweight from high dose meds, poor mobility, and high appetite- we’ve been discharged from his dietician!
Physio assessed him, he’s got great strength but has shortening of his calf muscle- likely due to atrophy and his body mechanics. Could possibly be the reason for his right leg giving him bother, but it’s not stopping him. Leg splints were discussed and calf exercises to strengthen it.
Bloods were taken today- yes he let the whole hospital know he was having bloods take 😖 bloods came back ok which is a huge relief!

Thank you mum for coming with us 💓 I know I sound like a broken record but even though Rowan is doing well, it’s mentally exhausting
🩵🐢🩵

07/06/2025

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24/05/2025

We lit up Chester town hall and Newgate arch blue to raise awareness for Inflammatory Neuropathies UK🩵🩵🩵