Support groups for parents of chronically ill children?

[Loupenny25]

Hello all,

My daughter has been battling through a serious respiratory illness for the past year. It started with an ICU stay on a ventilator because of pneumonia and a year later we have 2 partially collapsed lungs requiring home nurse care, daily nebulisers/medication and chest physio daily.

For the past year I've been looking for any sort of online support group/ corner of the Internet where other parents of ill children are.

Our health visitor (dd is 4) said they knew of nothing locally that could help. Asthma + lung UK said they had nothing and encouraged me to "create my own support group". Endless Facebook searches have turned up nothing with any activity.

I'm not looking for financial charity assistance, just to connect with someone, anyone, who is also managing their child's illness in whatever form that is.

Lying on the sofa with a poorly DD who can't sleep watching Paddington and an O2 monitor and hoping we won't end up on the children's ward. And realising that, yet again, I don't have anyone to speak to that will truly understand...

There’s this one, although not much activity on it that I can see without joining.
https://www.carenity.co.uk/forum/child-illnesses/being-the-parent-of-a-sick-child-99

I hear you. I don't have your needs but my daughter has a lot of food allergies and reflux and we have a local group with a WhatsApp group and monthly meetings for mums in the pub and monthly play sessions for the kids. Some struggle to get to regular playgroups because of the risk of contamination of foods they are allergic too. It's such a helpful and supportive group and they are always there even when I made my daughter a birthday care she was allergic too when I missed the egg in the lemon curd.

Our group also covers asthma so it might be another angle to search for. My daughter doesn't have asthma but quite a few of the other kids do with regular hospital admissions. They are in the greater Manchester area and if this is local to you I'm happy to share information about the group privately to see if it covers where you are.

Thank you, I'd never seen that one before however I've joined and there's very little activity there but thank you for your help anyway xx

Thank you for your message, we're in the south east unfortunately. I did briefly join a local support group for children with conditions/needs however it was completely made up of parents of neurodiverse children. I found that the experience of parenting a neurotypical but poorly child had very little overlap with the struggles of parenting a neurodiverse but physically healthy child.

However I live in hope that those parents are all hiding somewhere (I mean they must be surely!)

How did you come to know of your group?

I had pnd and my HV put me in touch with a support group for that. One of the mums shared a link to one of the allergy mums zoom sessions during lockdown as she knew a few of us were having a tough time with allergies, me in particular. I went along virtually and have been a part of the group ever since

Yes I can imagine that the needs of the parents and children would differ to your situation. I hope you find something

There's an online community here which might be helpful https://www.wellchild.org.uk/get-support/

Just a thought is it worth putting a flyer with new group information in the parents room of your children's ward at the hospital? There would surely be a number of other children who attend regularly with ongoing medical issues or go one further and contact Great Ormand Street Hospital and ask if you could send information there - I would imagine a high percentage of parents there would facing long term challenges. The hospital may also be able to signpost you to groups already running. X

Hello, I also have a four year old who has a health condition with long term implications. A year ago he acquired what the doctors thought was Guillain Barre syndrome - an autoimmune condition where the body creates antibodies that attack your nervous system. Only his version was very rare and very nasty - he had a stint sedated in ICU for 10 days and was in hospital for 3 months. He has to have daily exercises and physio and has been left with nerve damage and muscle weakness that affects his strength and movement. So I’m definitely feeling the heat as a mum who has to get him as healthy as possible whilst also parenting a v active 7 year old.

He has started in reception but does a lot of half days so he isn’t too tired to do his exercises. I could also do with being in contact with another mum who is also getting to grips with a child with an ongoing health condition so am very up for that!

Hiya this sounds so amazing. Can I ask if the group would accept me into it. I doubt we live close by but I feel so alone on the allergy parenting journey.

So sorry to hear your daughter's story, sounds like you have had a really rough year. It can be so isolating parenting a chronically unwell child and can feel so lonely when other people's lives look so different to yours.

I wonder if there are any conditions related to your daughter's main one that might bring up a Facebook group? For example, the Asthma in Children group on Facebook include parents whose kids have v.severe asthma whose experiences might be not so dissimilar to yours so you could join even if your child doesn't actually have an asthma diagnosis.

I have found some Facebook groups invaluable.

Another thought, I wonder if there are any parents groups that support parents of disabled children that might be a good source of advice e.g. https://contact.org.uk/help-for-families/parent-carer-participation/find-your-local-parent-carer-forum/