Living with a chronically unwell child

I'm just putting this out there in the hope that some one else can relate coz at times life seems just a little overwhelming, especially when we have a really bad week like we've just had.

As some of you know, my youngest three have their "health issues", mainly to do with their ears, but they also have an unspecified non-syndromic immune deficiency which means they pick up pretty much any bug/virus that so much as looks at them, and they quite often develop secondary bacterial infections.

Mercedes has had 4 sets of grommets and now has hearing loss that means she will probably need a hearing aid in the near future, and Sienna has had 3 sets of grommets and needs another surgery to reinsert one that has fallen out, causing glue ear. They both have learning delays because of it, and will need extra help when they start preschool in a month or so. Sienna has also had her kidney issues, but thankfully at the moment they aren't too much drama, she just has to take her prophylactic antibiotic every day.

Chiara is 13 mths and has had five lots of bronchiolotis, pneumonia, 2 sets of grommets with ongoing ear infections, chicken pox and just this last week, measles.

We have great medical support - a fantastic GP, a brilliant immunologist and an ENT specialist who is pretty much on speed dial and is happy for me to call him any time of the day or night if we need to, and we have financial support (health insurance and the Child Disability Allowance) which helps with the cost of stuff like hospital visits, parking, their unsubsidised ear drops etc.

But none of that addresses the day to day difficulties of having a child (or in our case children) that has a chronic health problem or illness, and sometimes I find it really overwhelming. Monday we had a particularly bad appointment with the ENT doctor where the short term prognosis for all three was pretty poor, and then the gremlins both "failed" their hearing tests yesterday.

The gremlins both sleep in our bed as we started letting them sleep there when they were first unwell at around 13-14 mths and 18 mths later they haven't been consistently well enough to try any form of sleep training with them.

Chiara is fast headed in the same direction - altho I have been insistent that she won't sleep in our bed, she wakes 2-3 times a night for pamol and/or a breastfeed. We do CIO with her when she's well and get her sleeping thru again, and then a week or so later she's sick again and we're back at square one.

It's meant a lot of time off work for me - thankfully we have a great nanny who comes even when the girls are sick, but when they are contagious I have to stay away from work to avoid passing on the bugs.

Not to mention the emotional and physical cost of countless trips to doctors, Starship (at one stage we were going 2-3 times a week for outpatient treatment for their ears), the speech therapist, psychologist etc. etc.

Don't get me wrong, I am incredibly, incredibly grateful that what they have isn't life threatening, and that for the most part it can be managed from home without needing the lengthy hospital admissions that some families have to go thru, but it's still exhausting! Sometimes I feel like we're desperately treading water to try and keep our heads above the surface, and that's all we can do because there is no medical miracle cure, it's just something we hope will improve with time and we just have to wait and see.

Sorry, this has become a long, rambly vent, but I know there must be other people out there in similar situations with kids that have ongoing "special needs" and right now it would be really great to know we're not the only ones!

Hi there
Just to let you know if you want to talk at all vent! Im new here and have found some lovely people to talk to about anything and everything. The one thing you learn is the children may have different special needs ranging from mild to severe but they all have special needs and there is alot of similar things we all have to cope with. I too have baby in the bed its "easier" right now as he wakes most nights every hour or two and i have to work as well. I know this would take a lot of effort right now with three little ones who are always unwell, but its so important you do something nice for yourself. Is there anyway you could take a break? Once every 6 weeks I try and take half a day off work just to do something-even if its for a walk on my own along the beach. Im on here most days inbetween work

not the same thing, bu when Taine was going through the low iron thing, everything was so tough. Emotionally, i felt really guilty for letting him cry. knowing he was unwell. and then i was creating a "monster' because i would let him get away with stuff, because he was unwell.

When we found out it was iron, then came the guilt ' Why didn't i pick it up earlier", "OMG, what if this means he has problems because i didn't pick it up earlier" and that was really tough, especially as Lewis was really blase about it, assuming it was nothing really to do with us, and all we should do is look to the future, not dwell on the "shoulda woulda coulda" - which is great, however, i needed to talk. (and think I did numerous times on here)

he's another one who is often sick, and more often than not, asthma.

And now he is being referred to the psychiatrist for developmental delays...makes you feel like you are a crap mum actually.

What i find good to do, is imagine someone from ohbaby is writing my problem as theirs, and then i imagine the advice i would give. and i stop beating myself up.

Anyway, thats my story - does not compare to yours emma, but i understand...on a much smaller basis

Here for support emma.

see, now imagine you are me, reading about you, giving you advice about your children and you (me) say to me (you) - It is stupid to beat myself(yourself) up about something that I(you) had no idea was going on, and that I(you) did what I(you) thought was best at the times and that we mums can't by psychic. And then you(me) would say that my(your) children won't remember anyone of this when they are older anyway.

see, easy huh!

aawww emma it relly suxs aye james has asthma and has ongoning flus colds since he was 6 weeks old then he was dignossed with dsypraxia i still feel soo giluty over it big hugs sweets

I haven't tried the gremlins on them Lizzle coz I bought them for Maya once and she said the same thing (well not quite the same thing, I'm not sure she's tried flavoured condoms ) but she sure wouldn't eat them.

I have thought about it heaps tho. They are on prophylactic antibiotics to try and keep the bacterial infections at bay (which does nothing for the viruses of course tho) and I've considered the idea of probiotics to counteract the negative aspects of the antibiotics, but TBH the cost is really prohibitive for us - we get 100% of doctors visits, surgeries and subsidised prescriptions back but their ear drops aren't subsidised and are $40 a pop and only last 4 weeks max, and when you add it all the other costs (petrol, parking etc) it gets really expensive and to have 3 of them on probiotics would cost a bloody fortune I do wonder if it would make a difference tho, coz if I could guarantee it would I'd live on bread and water to make it happen (or stop shopping at Patch ).

Hugs Lu, don't feel guilty! One of my favourite sayings is "you do what you know how to do, and when you know better, you do better" (Maya Angelou ) and it is so true - we all do the best we can for our kids, sometimes life/fate/Murphy just deals them a sh*tty card or three.

lizzle wrote: just suddenly clicked on taine getting sick lots - when he had his first bloods done, they said that he had had glandular fever.....and that he would probably have low immuinity because of it....I can't believe i forgot. hey, does anyone have their kid on vitamins? we bought some of those omega fishies - still have the box cause no one would eat them (including lewis - taste like chewing a flavoured condom - he reckoned)

Liz Im a bit scared that Lew knows what a flavoured condom tastes like....

And Hugs, Emma it sucks!!!

Aww thanks I must say, I slept from about midnight till 5am last night and it was awesome! They're all reasonably well atm.

I'll check out the immunity supplement, it certainly can't hurt I guess.

I try not to isolate us too much (which I guess isn't a great thing as it does mean they pick up more bugs), coz I go mad stuck at home and I'm also desperately clinging to the theory that the more germs they are exposed to, the more chance there is they'll develop some sort of immunity.

Having dramas with WINZ, they sent me a letter last week saying the girls Child Disability Allowances had all been renewed as the medical certificates hadn't expired, then on Saturday got a letter saying they've suspended Chiara's as hers HAS expired and when I called them, no one had any sort of sensible explanation. Gah, I do NOT need extra stress!

Hope the Doc's goes well, Nikki!

Blardy WINZ, eh! Pffft. Good luck with that one, Emma - hope they sort it (and backpay) soon! Yeah, I totally get what you mean about avoiding the isolation - the socialising is just so good for their development, and so good for mummys sanity! I can really see where you're coming from 'cause that's the same stance I took with Ella and exposure to other kids eating allergens around her - the isolation would hurt her more than the allergy in the long run! I gave up that approach with this winters germs, but it's just for the one winter, honest! Surely your girls will develop more immunity as they go... what does the immunologist say? Tough road getting there through - you sure have my admiration!

Hugs NZpiper, I hope James is OK. What did the doc say?