So Common, yet not publicised (My Experience of Asthma)

Member Name: kirstenc

Product:	My Experience of Asthma
Date:	18/09/09 (27 review reads)
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My experience of asthma is as a parent rather than a sufferer. Please also note that this is a severe form of asthma, and is certainly not typical of the experience as far as I know.

This is simply a documentation of the facts, figures and emotions of the last 7 years of my life, and is by no means to be taken as medical diagnosis or recommendations for treatment or medication etc.

(thats the boring bit over with)

Asthma is an inflammation of the lungs which is commonly triggered by some sort of 'event'. This event can be something as simple as running up the stairs, cold weather, emotions, smoke, allergic reaction, the list goes on.

My son is 7 and was first admitted to hospital when he was 9 months old, as he was making 'rattling noises' in his chest. Now a diagnosis of asthma is not usually given until a child is 2, as many many young babies can have wheezy episodes and admissions requiring ventolin/salbutamol (the blue inhalor) without actually being asthmatic.

He was in hospital 3 times in 12 months and was given a preventor inhalor the second time, due to the fact that he had required oxygen through nasal cannulas (little tubes that sit just below your nose and a constant flow of oxygen is present to aid your breathing) and was in for a few days.

He was refferred to the respiratory clinic at our local hospital.

Since then he has been admitted to hospital over 40 times, and has stopped breathing twice. Every one of these admissions has been unbelievebly scary and my heart is punding just remembering each one. There are the natural feelings of guilt each time...did i wait too long to call? did I check on him enough last night?

When it is your child, there is always a brave face to put on, for the nurses so they know you can cope, for your parents so they dont worry and most importantly, for your child, who is relying on you to make them better.

Symptoms....the obvious symptom is being wheezy, usually a creaking or whistling noise on the inhale exhale or both, distinctly coming from the chest rather than the nose. Other symptoms are shortness of breath, even with no excercise, or a persistent cough. My son is also prone to chest infections and takes daily antibiotics as a preventative. In younger children, you can see the gaps between ribs pulling in, and the little bit at the base of the throat tugging if they are struggling to breathe.

treatment...my son was started with just the blue inhalor to use up to 10 puffs if he became wheezy or breathless. He then moved to a daily brown inhalor called becotide. Then that was stopped and he was given a purple one called seretide. this was swapped for two inhalors, one green named serevent and one orage called flixotide. he is still on these two currently and takes the orange one twice a day and the green one at night.
He was also prescribed montelukast which is a chewy tablet that is commonly used as a second stage of treatment for the control of asthma symptoms. My son takes two tablets at night.
Another inhalor that he takes is atrovent which he used to get mixed with the nebulisers when he was unwell but now takes four times a day for control of symptoms
Prednisolone is the steroid treatment that is regularly given to asthmatics during acute attacks. it is a small pink tablet that is given to children diluted in a very small amount of water. My son is on this daily and has to have his immune system tested on a regular basis as a result due to some of the side effects. This medication is not a steroid in the natural assumption, in that your child will not get muscly while taking it, in fact it can have a negative impact on growth, and this will be monitored regulary if your child has a few treatments of this. It can also have an effect on temperment. When my son has an acute attack, an therefore an increased dose of steroids, he can become very adjitated and once he begins to recover, he gets very hyper, and this can get violent. The docs have said to us that he comes in an angel and leaves a devil but at least he isnt wheezing any more!
Physiotherapy is also something that I have had to learn a little bit of, simple things like blowing bubbles through a straw in water can help with lung function etc. I am also able to give actual physio treatment, pats and rubs when he has a chest infection, to help clear it.

He does take a few other medications to help with his allergies, as his asthma is very closely related to this.

Lifestyle....Although my son is 7, he must be supervised at all times, and is unable to walk upstairs without becoming wheezy. We are provided with transport to and from school and he receives disability living allowance for this. He tries his best to take part in gym and sports but is often unable. Until last year, he used a mobility buggy for getting around, but is too big for this now and he only uses this on school trips. Every journey takes a long time, even a walk to my mums house which takes 15 minutes alone takes an hour with my little one, as he has to take breaks, and being 7, he will still run as fast as he can as far as he can until he's needing an inhalor.
The effect on me is obviously not so physical. I find it difficult to let him be, but then worry that I am mollycoddling him and that he will end up unhappy and friendless. I suffer from anxiety attacks when he is at school, although not so frequently now that he is abit older and knows to vocalise when he isnt well. I have occasionally woken up at 7am in a blind panic as his first medicines are due at 6, did I give him his midnight ones?? I dont know, what should I do, I am clearly a terrible mother. Then I calm down and realise, an hour late is not the end of the world, and needing a rest doesnt make me a terrible mother.

Talking about mothers though, I do not know what I would have done without her. She has learnt the medications with me, and my son stays at her house every saturday night so that I can have an uninterrupted night. This is invaluable and I dont think that I would have coped without her support.

What can be done...I feel that there is not enough publicicty about asthma and its effects. There was a little girl who used to be in hospital with my boy, was on similar medications as was a couple of years older, she passed away 2 years ago in an ambulance on the way to hospital. For such a common disease, more should be done to prevent the loss of life and I will campaign my rear end off to ensure that all of the research that can be carried out IS.
As my son has such unusual and severe asthma, we are regularly asked to take part in research which we do happily, and I also try to raise money when I can.

Its funny...everyone knows SOMEONE with asthma, who takes a blue inhalor etc etc, yet everyone seems to think that it is a mild illness that doesnt have an effect on people. My son would dispute that to the core, in his own words 'I hate having asthma...my medicine bag hurts my arms!, Im going to be a doctor so I dont have to carry so many medicines'

Child logic is wonderful and I am grateful that the weight of his medications is the only thing that concerns him, and am grateful to all the doctors, nurses and hospital staff for caring.

If, as a result of reading this, you are having a heart string tugging moment, or if you have asthma and have any questions or would like some info I would urge you to visit the asthma UK webiste asthma.org.uk, this is a great resource of tips and hints, fun stuff for kids, a great forum with other sufferers can share knowledge etc, and you can have a look at ways to raise money, they are always looking for donations, and fundraisers, I am hoping to trek the great wall of China in the next couple of years, and I know that every penny raised will actually move the world closer to a life changing treatment, whether its an occasional annoyance or a life threatening illness, asthma could soon be a thing of the medical history books.

Thanks for reading my lengthy pesronal review of asthma

Summary: More needs to be done