Argh!

Hello, this is the first time I've posted a message here and I don't really know what I want to say other than Argh! and Urgh! My beloved 3 yr old son has asthma (you know the story...bronchiolitis at 4 months, followed by several visits to hospital every few months...blah blah). The last 7 months have been the worst ever as he has been hospitalised 6 times in all. The last visit was just 2 weeks after the previous one. His meds have were altered back at Easter time and he is now on Serotide and Singulair.

The reason I am here is that I feel I am in a constant state of knotted stomach cautiousness. He has only to sniff and I start to worry about whether we're off back to Hotel Children's Ward, and how I'm going to juggle it with my work, my husband's work, and our eldest son, I worry about why he keeps going in, I worry about the amount of Pred he has had and the possible effects of it, I worry that he will never ""grow out of it"" as has been sometimes suggested. I feel I can't look forward to much in case the thing I look forward to is cancelled for us because of his asthma (holidays, my sister's wedding etc). I know some of that may sound selfish but I need to get it off my chest!

Having said all that, in between his attacks he is a robust, gorgeous, cheeky chap with a winning personality and good looks to boot. He doesn't let his asthma stop him, and he isn't nearly as badly off as so many children are. I know we are lucky that all we have to cope with is asthma and that it could be SO MUCH worse. So I am sorry if I am whinging.

I just wanted to reach out into the big wide internet to others who may know what I am going through.

Thanks for reading this drivel. It has helped to get it down in cyberprint.

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I know the feeling!!!

Hi (my first posting too)

Virtually same story (good to know that i'm not alone)!!! My son is 2:8 months we've been in hosp 4 times in last 7 months. He's on Becotide - Salbutamol and Montelukast (Singulair).

Got the stomach - i cringe everytime my friends pop round and casually mention that their offspring have stomach bug / cold / cough etc. It's good to hear that my worries arn't extreme - spent 30 minutes in GP's surgery today discussing what to do - ways to avoid going back into 'Hotel' - I too worry about the pred!! I worry about everything. Sometimes i feel like the joy's been sucked out of everything - I'm in a constant state - should i go to the doctors - does he need to go to hospital - can we make it by car - should i phone an ambulance etc etc etc!!!!

And yes I too feel bad for mythring on - i know it could be worse - although I am obvioulsy worried and upset about my son - I need someone to worry about me - when he's in hospital i'm in hospital - so no sleep for 2/3 days/nights at a time at least and then home to 4 hourly inhalers so very little sleep for about a week to 10 days. Oh and not to mention the loss of routine - mine stops eating when we go in and takes a week or two to get back on track - His dad helps but he has work and cannot always get the time off. We've tried explaining to his employer that one of us has to be there all the time - i mean you can't leave a 2/3 year-old in a hospital ward on their own - difficult to even leave them in the cot to have a pee - mine tries to climb out!!!!

Mine too is in between the Asthma a robust cheeky little monkey - who runs around like a lunatic with seemingly boundless energy - i think that's what makes it hard - the Asthma seems to come out of nowhere without any real symptoms which makes it really difficult to up the inhalers and prevent weekend break in Children's Ward with a course of pred thrown in for good measure.

Don't apologise for whinging - you have to get it off your chest - i know i do. I'm waiting for a time when i feel that he'll be ok for a week or two - so i can go out and have a couple or more G&T's!!!!! Dream of a day when hopefully he'll grow out of it and but in the meantime we're trying to learn to control it more effectively so we can hopefully keep him out of hosp and off the steroids.

Take care and feel free to have a moan

Fingers crossed for a 'hotel' free May!!!

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Thank goodness I'm not the only one

Hi,

I just had to email to say how relieved that I'm not the only one that feels like this. I have a 13 month old who we've been struggling with for the past 8 months. I have a constant sense of dread even if she is well as I'm never sure how long it will last for. We've just had to cancel a holiday to Florida that we had booked way back in July last year before the nightmare began and like you I don't feel like we can even plan anything for fear of having to cancel. I have a 4 year old little boy as well who has to be so understanding so that adds to the guilt. We have endless trips to A&E for nebulisers but so far have only had one overnight stay.

I have a fantastic GP which is great but I really struggle to get anyone to understand how truly helpless I feel. I don't feel like I know what I'm doing with this at all and to be honest the doctors don't seem to really know what to do to help her either. She's on Flixotide, Salbutamol and Atrovent and we've just done the second course of oral steroids (the first one was 20mg for 3 days, 10mg for 3 days, 5mg for 3 days. The second course was 20mg for 3 days, 10mg for 3 days, we were then supposed to drop to 10mg ever other day but had to go back up to 20mg for 3 days following another trip to A&E then 10mg every other day for 3 days and finally 5mg every other day for 3 days). I worry that she is so little and having to have all of this medication and actually, nothing really seems to be making any difference.

I've been sitting here with my husband this morning trying to work out what on earth we say when we next see her Consultant. We seem to have tried pretty much everything so we feel that we now have to say ""Is it OK for her to be like this? Is it doing her any harm wheezing every day? Should we just accept that this is normal?"" I know that the nature of Asthma is unpredictable and I think that is what I struggle with most. I'm not very good at dealing with the unknown and I just feel like we have this cloud hanging over us constantly.

I really wish there was more support available.

Good luck to you both and I really hope that at some point we all manage to get life back on track.

Kind regards

Lianne

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I have posted this story from time to time so those who have read it before skip now

My eldest son Mike, was dreadfully poorly with asthma from a year old, on pred all the time maintenance dose and top ups when needed. He could not even get from the front door to the car in the winter without having an attack. We had it all nebs, pred, theophyllins I did not know what was going to happen to him. I lost count of the number of times we dashed to hospital. Mike was growth stunted his chest weirdly shaped, he did no sport cos even a small amount of running set him off. I remember christmas when he was 7 he begged for football boots and a kit he went outside for all of 2 minutes in his new kit and we had a 2 weeks in hospital as a result. This sorry state of affairs carried on until he was about 9 or 10 when we started to see an improvement, we gradually weened him off the drugs and he started to grow, and his asthma was still stable. he is now a strapping 6ft 18 year old, who plays sport, cycles and generally like most 18 year olds loves life, partying and staying out late He still has asthma but it is well controlled and he has not had an admission for asthma since he was 11! I know not all children will get a result like this but don't give up. There can be light at the end of the tunnel!

Bex

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Hi Cecilia

I too can empathise with you as we've been n the same position. My little girl Holly's 4 now and when she was just diagnosed I found this site really useful. You can ask the seemingly most obvious of questions here and still be supported and recieve good replys. Its whats kept me sane sometimes.

We're lucky in a sense that although Holly's asthma isn't getting any better or more controlled just now, she seems to be able to pick up on a lot of her symptoms before they show. It will never take the feeling of dread or intense responsibility away but I take it as a sgn that things will get better. As she gets more in tune with her body and symptoms there will (hopefully) be less emergency dashes to hosp and we can all feel a bit more in control.

Hopefully as your little boy gets older he'll also be able to spot the early symptoms too.

Anne

xx

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THANK YOU!

Hello again,

Just logged on to this site for the first time in a few days and was unbelievably touched to read your replies. OK, so none of you have a magic cure...but I didn't expect that. Just knowing you're out there and that I am not alone has brightened my day no end. THANK YOU!

C x