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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I am very lonely - keeping a child isolated

13 replies

Gilliana1 · 17/05/2013 19:31

I have a 6 month old who was born with congential lobar emphysema. Despite being offered a termination at 21 week scan, we pressed ahead and she survived and has done brilliantly. However, when she gets a cold she ends up with a chest infection and ill and is very miserable and every infection she gets makes the next one worse if that makes any sense. She will probably have to have one lung removed soon and HOPEFULLY the other lung may be Ok.

Anyway, I've been staying really isolated to try and stop her getting colds. So no mother and baby groups, not taking her to church. If I go out to the supermarket I put her in the buggy with the raincover totally over her so I don't get the 'oh, bless a lovely baby' hand grabbers leaning in! I walk twice a day with her and I'm almost desparate to say hello to people on the pavement I'm so lonely.

I guess I'm not looking for advice as keeping her isolated was even recommended by the hospital - but it is a lonely existance. Maybe there are others out there doing a similiar thing for other conditions?

OP posts:

PolterGoose · 17/05/2013 19:50

This reply has been deleted

Message withdrawn at poster's request.

Handywoman · 17/05/2013 19:52

No experience here I'm afraid but it sounds incredibly tough. Poor you. Hope someone in a similar situation comes along soon.

(((Hugs)))

PolterGoose · 17/05/2013 19:53

This reply has been deleted

Message withdrawn at poster's request.

ouryve · 17/05/2013 19:57

That sounds so draining, Gilliana.

Even the most antisocial of us have someone - some adult company - that we can have a brief chat with, even if it's just about the weather. It's hard not to even have that amount of support.

A few poeple in here are isolated by having kids who are hard to get out for other reasons, eg agoraphobia or other ASD related anxieties. My two both have ASD and taking them out is like herding cats, so we keep it simple and a bit boring, but at least don't have to worry so much about what we might come home with.

I do find the Internet keeps me sane - mainly here and Ravelry, since I knit (when my poorly hands and DS2 allow me to!) I feel a lot less alone when I can open my laptop whenever I need a bit of grown up conversation.

dev9aug · 17/05/2013 20:00

Hi Gilliana, we have some experience of this as ds1 was on oxygen for a year due to chronic lung disease so we had to keep him away for early part of his life. He is fine now but his immune system is still very weak.

I am assuming that you have access to a community nurse. Can you speak to her and see if she knows any local groups. Can you get in touch with a charity called BLISS, it is a charity it babies born prematurity and some of them are likely to be in a same position as you. They also have an online forum where you can ask for advice etc. link for the charity here. www.bliss.org.uk/

Original poster

Gilliana1 · 17/05/2013 20:04

Thanks for the replies, some virtual friends to chat to would be lovely and make my days less lonely.

OP posts:

sweetteamum · 17/05/2013 20:42

Hi Gilliana :)

Sorry, I've not got any advice to add. Just wanted you to know I'm also here (((((hugs)))))

ouryve · 17/05/2013 21:01

Well, it's wine o'clock, Gilliana :)

BeeMom · 17/05/2013 21:34

Bee has an immune deficiency, so I know the isolation well.

Virtual (online, not like "Sims") friends, Skype, telephone etc can be a lifeline. As well, now that the worst of respiratory season is over, can YOU get out for a bit either with her or on your own? To the shops, perhaps to a cinema - a movie that was released a couple of weeks ago will have a nearly empty cinema if you go to a weekday matinee - but go out when things are least busy, and put a sign on her pram that says something like "Please give me space, a "little bug" could be a big problem". I actually did that, with a picture of Bee on it. It was helpful, in addition to helping to break the ice in conversation.

The rain cover will be too warm very soon, you can get a "bug net" to keep Granny GrabbyMitts away from her, but still allow air flow. Frankly, if you want to chat with people while you are out for your walks, I'd say go for it - you might meet someone whose company you really enjoy. Granted, I am Canadian, and the stereotype that we will talk to anyone is not exaggerated

Oh, the bar at the Goose and Carrot is always well stocked - they have never not had what I wanted. The company is a little odd, but in no time you'll feel like you fit right in

TheAccidentalExhibitionist · 19/05/2013 12:06

How are you doing today Gilliana? I'm thinking of you and wondering if you could get out occasionally in the evenings to catch up with friends or joins a group?

NeoMaxiZoomDweebie · 19/05/2013 21:31

Gilliana I really got touched by your situation...do you like crafting? There is a lovely forum called Craftster where people help one another with crafting and post to chat about what they've made...it's a really nice place and people share pics of their work a lot.

I know that's a bit random...not everyone likes crafts...but it has helped me when I was having a lonely time.

used2bthin · 19/05/2013 21:46

My dd1 has a condition that makes illness very hard to cope with, she is in hospital every time sHe has a sickness bug and can become dangerously ill very quickly, its very hard so lots of sympathy, avoiding colds must be much harder too as people don't think of it as much.

I agree, getting out alone is so helpful if you can. I tend to find summer way easier as generally there is not so much illness about plus playing outside seems better somehow. Harder with a baby I know. I used to talk to strangers a lot particularly when I lived somewhere I didn't know many people.

Tootsandblanket · 20/05/2013 18:14

We have a similar situation here. DD is extremely vulnerable to infection and hospitalised with a common cold. We spent the winter safely in our house, any visitors, mainly adults as kids are the bug carriers, are aware of our no germ policy and we make everyone remove shoes and wash hands. We have a zero tolerance on sniffles. This can be isolating as you know, but the stress of hospitalisation is horrible. As others suggested the Internet is my lifeline, as is FaceTime!
In summer months we go out for walks, but never to soft play/ kids groups. It's just not for us. We try and see well children in the summer but in an environment we can be sure is clean, our house or a friends house.
We are thinking of taking DD to our local hospice for a day to use there facilities. Do you have access to a hospice ? Maybe your SNHV could help you ?
I don't allow people to touch DD when we go out. We don't use a net or a cover , I have her facing me in the buggy. I tell people not to touch her. My firm tone conveys the message well !
This is a good place to hang around, their is always some thing happening to keep you sane.
You aren't alone. X

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