Support thread for parents of children with chronic illnesses

[elliejjtiny]

Thought I'd start a thread to chat to other parents in the same situation. DS4 has just turned 2 and is about to have his 8th operation. We're on first name terms with his paediatrician, who will come and chat to us if she sees us around the hospital. When DS4 was younger DH and I would both go with him for operations while someone babysat the other 3. Now, DH has the older 3 and I take DS4 and DS5 to the hospital on my own. I find that when you have a short illness then lots of people phone, text, ask how you are and offer help. With a chronic illness people lose interest and some people seem to think that it's easier for us and we're used to it because he has had so many operations and hospital visits.

So here is a place to chat and rant about being a parent of a child with chronic health issues.

Hi, you sound as if your having a really rough time! We're not really in the same league but DD2 who is 7, has been unwell for the last 8 months. We now know she has Coeliacs disease, lactose intolerance and IBS but is still in lots of pain. We are struggling to get to the bottom of it. It's very wearing, especially as she hasn't had a full week in school since last October. In fact it's a complete nightmare trying to juggle work, school, hospital appointments and days off. Some days (like today) I would like to scream at somebody! Sorry, long message but I needed to get it all off my chest!

Sorry, forgot I'd started this thread!

Completely understand about the juggling. I'm a SAHM and DH works from home but we still struggle. I find it helps to put sticky dots next to things in my diary. Everything that can be moved gets a green dot, everything that can't (unless extreme circumstances) gets a red one.

How are you getting on with the diet side of things? I remember when my auntie was diagnosed with coeliac disease she found the cross contamination really hard. She has her own jam, butter etc to avoid toast crumbs getting in it.