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SN children

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

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Original poster

having a new baby and a child with SN/medical problems - someone tell me how it's done...

15 replies

2under2 · 25/07/2003 14:01

ok, depressed message coming up - I am 23 weeks pg now. My dd with DS, now 27 months old, is plagued by ill health. She seems to have some sort of immune defiency which has not been diagnosed yet (still waiting to see immunology - who knows if it'll be this year!?) and as a result has numerous problems like glue ear, chest infections etc. Long-term use of antibiotics has been keeping her reasonably healthy, but now her paed has tried to halve the dose and as a result dd's hearing has gone completely to pot again (just been for a hearing test - it was dire ).
In December she managed to have both croup and bronchiolitis at the same time and almost had to be ventilated.
Last week I found her limp and lethargic in her cot (this is my 'into everything' toddler on a normal day) - she was admitted to hospital and found to have a sodium deficiency (a bit of eletrolyte solution and a few salty meals and she was fine again).
I expect this winter we will have a repeat performance of her respiratory problems as her immunity seems to have got worse this year.
Now, the new baby is due late November. I am trying to work out what on earth I will do if dd has to go to hospital for something. I'm planning on breastfeeding this new baby just like I did with my others, but I don't want to expose a small baby to a ward full of sick children, nor do I want to have to worry about pumping whilst dealing with a poorly dd. Someone tell me it'll all work out please. Am feeling very depressed about it all - dd couldn't possibly be any sweeter and it all seems very unfair. Am usually of a very positive nature but seem to have lost it today.

OP posts:

fio2 · 25/07/2003 14:28

2under2 sorry your porr little girl is having such ill health, it seems never ending doesnt it when they get one thing after another You will cope with another baby, it will just fit into your routine. I was pregnant when my dd was diagnosed with development problems and I wondered how I would cope. I felt incredibly guilty for having another baby when my dd needed some much time and help. But when ds was born it really didnt make that much difference to her infact it brought her on alot. We have had a long bout with her in hosiptal, countless hospital appointments, therapies etc and ds has had to just come along with me and dd and 'fit in'. He used to love the portage sessions two chairs at the table one for her and one for him!

It is hard work. My dd started at the SN nursery full time a couple of months ago and she is off for six weeks(and she is ill again too)and I had forgotten how much hard work it is when they're both together. But in some ways it is easier, they play with each other (even though they have a love/hate relationship) and I find I dont have to occupy them as much. I am sure everything will be fine

Jimjams · 25/07/2003 15:34

it'll work out 2under2- honestly. I think these things are sent to try us. Ds2 was born - had some breathing problems, 2 weeks later we had an appointment for ds1 and were told he was autistic (knew that anyway- but still a shock). That was a private appointment so didn't count for anything and we had to try and get somewhere with the NHS, then ds2 stopped putting on weight, sent up to hospital and was found to have an infection. I felt like as soon as I stopped worrying about one, I had to start worrying about the other. it is really hard when you get hit after hit after hit- and it sounds as if you've been through the wringer recently.

I mixed fed ds2 at the beginning (he wasn't putting on weight - so I was told to - although of course it was the infection- I didn't seem to have much milk anyway though). Now at 18 months he is still being breastfed- once things had calmed down I slowly dropped the bottles (and originally he was on about 4 a day plus whatever i could produce), so don't feel bad if you have to give some bottles- you can still bfeed long term if you want to.

And yes SN is unfair. Sometimes (especially when ds1 is asleep) I stand with dh looking at him and we both say "it's just so unfair" - not on us, on him. However (and I'm going to be horribly bright now so feel free to punch me) I do think it teaches you a lot about what is important in life- and it does make your life less shallow. Sometimes when I'm really pissed off that thought can help (but not at other times )

Anyway hope you're feeling better soon. And hope you get to see immunology. Have you thought of trying anything like homeopathy whilst you wait? DS1's immune system is barking mad and it has really helped him. I like it because it will either work, or not and won't do any harm (and you get a good counselling session at the same time!) And at least you feel like you're doing something rather than waiting for the NHS to remember you exist.

Original poster

2under2 · 25/07/2003 15:53

aah thanks fio2 and jimjams - feel better already thanks to your messages of support.
Jimjams, will try homeopathy again - used it for a while with dd1 and her eczema but it didn't help so I gave up. Maybe I need to find a new homeopath...
Thanks again for cheering me up!

OP posts:

doormat · 25/07/2003 17:27

can only reiterate what fio2 and jimjams have already said BUT it will all just fall in to place when the new baby arrives.You will cope marvellously.

Davros · 25/07/2003 17:59

Dear 2under2, I think you should breast feed if you can but don't feel guilty about bottle feeding, even partly, if it is the most practical and least stressful thing to do. I have bottle fed my 4 month old baby and it has been very, very good for my relationship with my autistic son. Obviously we're talking different disabilites/issues here so it may not have the same relevance for you. My son has been an only child for 7.5 years and is very used to me doing lots of things with him, he is very attached to me and his poor social understanding would just have made the situation much more confusing and distressing for him if I had breastfed (I couldn't anyway due to medication so it was an easy choice for me). It will be OK, as we all know on this section of Mumsnet, we're all copers and isn't a problem just an opportunity to us? Ha ha, I could do with a few less opportunities in that case. I think the fact that you're just thinking about potential problems shows that you're sensitive and practical enoguh to deal with them. Wishing you lots of luck.

mears · 25/07/2003 18:55

If your dd needs to be admitted then I would have no qualms about taking a B/F baby into hospital with me - they are more likely to provide a single room for you. Happened to my sister and it worked out fine. Meant she didn't stress about the new baby as well as sick child. Try not to worry too much in advance - things may be OK.

maryz · 25/07/2003 19:59

This reply has been deleted

Message withdrawn at poster's request.

eidsvold · 25/07/2003 20:20

I wish I had answers but just wanted to say that it will work out and you will get through this. I can remember feeling like that when we knew about dd and wondering how the hell we would cope - for the last half of my pregnancy - looking back now - I realise that I did because you do iyswim.

SO no real answers from me except to say I am thinking of you.

lou33 · 25/07/2003 22:11

You will cope 2under2, you just will. I'm the other way round in that ds2 is the youngest of 4, but I suppose the theory is still the same. Yes it can be hard juggling everyone's needs but it can be done (just don't ask me how ). Do you have family/friends around to help? We aren't in such a position, so have had to cope using just ourselves, and we still managed. I'm sure if you are honest with your support network they will come up trumps if the time ever arrived. Sorry I can't be any more help.

Jimjams · 26/07/2003 08:06

2under2- another thing - when you have a "normal" kid after having a SN one you discver that normal kids are actually really really easy- and so its really easy to enjoy them -rather than worry about them iyswim.

Davros- I'll expect you'll find this as your baby gorws- I had no idea that you could instruct 18 month olds and they would understand!

Original poster

2under2 · 26/07/2003 08:51

thanks so much everybody. Things always work out somehow I guess! This is my 3rd baby - I also have a 4 year old dd who will be starting school in September. I think that adds a bit to the uncertainty because so far she's been going to a very flexible nursery and I could just ring and ask them to keep her for an extra hour if I got held up with one of dd2's appointments. From September onwards I'll have to make sure I'm on time no matter what. And dh just started a new job last week which looks like it will be very demanding and not very tolerant re. family life for at least a couple of years - he'd been working from home for the past 2 years so it's a bit of a departure. We don't have any family nearby. Wish I could 'rent a granny'!
Hopefully by November I'll have got used to things and worked out a way. Thanks again for the encouragement!

OP posts:

giggle · 14/08/2003 12:32

Not sure if this is any good for any one but there is an agency which deals with only special needs children (nannies). You can get help full or part time for every SN even if it's short term to let you get to grips with a new baby, or give you advice? [email protected]

Davros · 14/08/2003 15:58

I found SNAP very nice but very expensive. THere's also Special People, I can't find their phone number now but they have a website.

ThomCat · 14/08/2003 17:08

I've just seen this post but shouldn't have come onto Mumsnet as I have loads to do and only an hour left at work this week to do it in, but I just wanted to acknowledge your post 2under2 and say that it may all feel too much for you sometimes, but do you know what you WILL be okay hon'. Somehow something's always there to save you. You'll feel like your drowning somedays and others you'll almost physically feel the support network you'll have, like a saftely net under you waiting to catch you if you fall. try not to worry about the unknown, it won't help you. From the vibes I get from your emails you're a good and caring person and you're going to be just fine.
I'm so sorry your little one is poorly a lot and I know that must be really shitty for you all but it'll all be OK with the new baby, some days will be hard but you'll get through them and Mumsnetters are always here for you.
Big hug babes {{{{{{{{}}}}}}}}}} and a big ole kiss! X

lou33 · 14/08/2003 18:04

2under I do understand, My oldest was born with sn, then I had 2 more, then I had number 4 who also has sn. I am fortunate that my oldest has now outgrown her problems more or less, and is like any other nt child, but we didn't know that at the time. We also have no family who are able to help. I now in the last year have a sister in the next village, but she has 4 kids of her own, and is always doing something or other, although when she is away she lets us use her pool and gardens as much as we want, which is a godsend right now. She does have the oldest 2 for sleepovers and tea from time to time, but pretty much it is just dh and myself. I promise you that you will cope. Sometimes you will feel like you are not coping at all, that everything is too much, but it does pass things feel better again. The more children you have the harder it is, but it is possible honest!

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