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General health

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Original poster

Does your child have a chronic health problem?

98 replies

Janni · 22/04/2008 22:36

Is there a spot on MN for parents to support each other with this? I don't think it fits into the SN topic.

I have a DD with cystic fibrosis and I know there are others on here, as well as parents of children with eg Crohn's, asthma, renal probs., heart probs., diabetes etc

I would like to be able to chat about the trials and tribulations of this aspect of parenting, with others in a similar situation and wonder whether any other MNers would find this helpful.

Feedback please!

OP posts:

TheMadHouse · 23/04/2008 16:39

What I meant was that the thread was doing OK and then all of a sudden, some people seems to use it to fuel an ongoing rift. Or that was how it appears to me.

I am happy to post anywhere

Saggarmakersbottomknocker · 23/04/2008 18:20

Sorry you're feeling a bit fragile Janni.

I think it's great to have somewhere to offload.

Maybe we should draw a line under this thread, start a new one, reintroduce ourselves and get on with the business of offering support.

cazcaz · 23/04/2008 19:20

Janni, I'm sorry as well your feeling fragile. Please don't be upset. I am very glad of a thread about chronic medical conditions no matter on what board it's posted.

Themadhouse, do you have an overnight saturations monitor for your DS? We have been offerred one on occassions but if it comes without the oxygen required if they are low I'm not sure what use it could be.

DS2 has recently been put on a different set of antibiotics and in the last few weeks he has not required the pred. Thank goodness, as the side effects are really unpleasant as you say. He is about to undergo a sleep study in the next few weeks so we'll see if that flags anything up.

Anyway - I'll repeat, I would really like for this thread to continue or as Saggars says start a new one!

Original poster

Janni · 23/04/2008 20:10

No, this thread hasn't upset me, don't worry - I'm used to MN!! I'm generally feeling a bit worn down with the various needs of my kids though. I'd be very happy for someone with experience of the SN board or who's posted before about chronic illness
to start a new thread.

OP posts:

TheMadHouse · 23/04/2008 21:23

CazCaz - no we have not been offered one, but then we tend to have to be admitted as if he does get wheezy and needs a nebulliser, he needs his heart rate monitoring during and after (it goes over 300bpm). Also oxygen on its own doesnt provide any increase in his sats. He has had to be ventolated or on cpap in the past if things got really bad.

At least now he understands his puff puff makes him better and takes it without a fight. I used to have to strap him in the buggy or car to get it on him and his last neb took me and 3 nurses [he is only just 3)

Janni - I have nothing but admiration for you. 2 is hard enought - 3 a real juggle without the hospital visits and keeping a three year old entertained whilst you wait ages is another matter

Original poster

Janni · 23/04/2008 22:12

Thank you TMH - it is8 hard and I often fail to understand why I am just so exhausted. Sweet of you to notice

OP posts:

used2bthin · 23/04/2008 22:25

My DD has a genetic condition which causes her not to be able to deal with illness or injury well(also other complicated stuff which I am still learning about!) We are in hospital a fair bit and I am now very used to her medicine schedule but the worry and relentlessness of it gets to me at times! I'd love to chat to (and meet if possible)others going through similar things.

snorris · 23/04/2008 22:29

Hi!
My dd4 has a congenital heart condition and spent most of her first nine months in hospital. She is now a cheeky 2 year old and seems to be on an even keel at the moment.

.

used2bthin · 23/04/2008 22:35

Hi snorris, I'm glad your DD is doing well(touch wood-I understand that one!)My DD is 18months and also very cheeky. In fact people often say "ah you'd never know anything was wrong with her" which is both good and bad at times. When she is well which is thankfully most of the time, she is full of energy. But when she is ill it can be scary very quickly. Also I hate all the medical stuff she has to go through. She recovers quickly though it is me who is crippled with guilt!

misdee · 23/04/2008 22:38

snorris, did u used to be someone else?

i have 3 dd's, 2 with asthma, one quite bad, one mild. all 3 with various degrees of eczema from scaly patches to full on crusty scabs where they have yanked their skin off in a fit on itchiness. dd1 also had allergies and minor heart valve leakage (keep an eye job, nothing to worry about).

misdee · 23/04/2008 22:40

oh yes snorris, i reconguise that gorgeous little dd of yours anyway in your profile.

glad things are going well

emkana · 23/04/2008 22:41

I think it's a good idea.

I posted ages ago a thread entitled "how do you deal with the emotional fallout from having a child with chronic health problems" because ds had very bad chest problems (luckily he has much improved). I did get some answers at the time, but not many. Maybe for somebody new to the board it would be easier to find people in the same situation that way.

snorris · 23/04/2008 22:43

I hear congratulations are in order .

misdee · 23/04/2008 22:52

yes.

still not told the dd's yet though lol.

snorris · 23/04/2008 23:08

I've joined the due in Dec 08 . I haven't even told my mum . I think she might have a face like this . I'm going to find it hard to keep it from dd1 though. As she's that bit older I think she's going to notice soon that I'm not drinking wine. Lol!

paperchain · 23/04/2008 23:12

so, a fair few of us going/gone through tough times with our dc

whare do we go from here then?

PCx

Original poster

Janni · 24/04/2008 07:04

I think we should just keep posting on this thread till someone comes up with a better idea, paperchain

Well, I for one had a better night's sleep as DD's extra meds/physio/inhaler yesterday may have helped improve this current bout of cough/cold. Now I just need to tackle the bombsite of a kitchen so I can start making packed lunches for the other two...

Hello everyone else X

OP posts:

TheMadHouse · 24/04/2008 08:44

I am glad someone had a good night. DS1 was sick twice (something to do with daddy giving him pikelets just before bed me things) and DS2 is just not himself. He ususally sleeps though, but was up in tears 4 times. Why do men never hear them.

Well I am off to soft play with the two of them and my niece (2.11) this morning. Yes I am mad - a 3.1, 2.11 and 22 month old.

alibobins · 24/04/2008 08:57

Ds also had a bad night coughing and wheezing

Phoning the docs in a min.

misdee · 24/04/2008 10:36

dd1 had a god night. the new air vent that was fitted the other week had removed a lot of dampness from her room making it easier for her to breathe. its such a releif. she is now walking most of the way to school by herself, her wheezing is worse in the morning air, so have to make sure she has her inhaler in her book bag now, and not in my pocket.

snorris, my dd's dont know yet, and i havent blogged it yet as am very nervous this time, no idea why.

TheMadHouse · 25/04/2008 09:01

We had a better night last night.

We went to the dentist yeterday eveing and both boys teeth are great. It was strange filling out the medical form - what do you put when you have no idea what is wrong?

Original poster

Janni · 26/04/2008 10:05

misdee - we used to live in a damp basement flat and there's a very simple thing you can get, no batteries/electricity needed. It's a chalk block which absorbs moisture and collects water in a little pot that you just empty out. I can ask DH where he got it etc if you'd be interested.

Hi TMH - good news about the teeth!

DD is OK, bit wheezy but not about to get really ill, so that's a relief.

OP posts:

milou2 · 26/04/2008 10:28

DS1 started with asthma in yr 1, age 6.

He's been on the brown and pale green inhalers for years now, very rarely needs the blue inhaler. Those preventers do work.

He has blue inhalers all over the place, swimming bag, sports bag, book bag...all pretty much unused

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