Hi, i have an 8 year old daughter who was born at 31 weeks and had suffered with asthma and breathing difficulties since birth, since august last year she has had to have two op's and is awaiting a third to see if they can find out what is wrong with her. At the mo they are saying she is a difficult asthmatic, but think there is something else as well, which is why they are doing a third op.
She is on anti B's, steroids, green inhaler, blue inhaler, montelukast and pulmicort, every day is hard as we never no what to expect. She misses school and all the fun stuff kids get do at her age.
I no there are lots of kids and adults out there who suffer the same or worse and would be grateful for any advice anyone can give me.
I can sympathise with you hugely. Sounds like you've been through the mill from the outset. With a premature birth and all the attached worry and now this. The fact that your daughters condition still hasn't been given a definate name is hard too and can leave you in limbo and numb!
My daughter is 2 and on the exact same drugs as your little girl. She's had one bronchoscopy which was hard enough to go through. Every day is tough, scary and unpredictable!
Can I ask what ops your daughter has had? And what they are looking for? What tests has she had?
It can be so heartbreaking to see our little people struggling to keep up with their peers. But somehow they get on with it and, if like both our daughters, have known no different.
Maddie still smiles despite her breathlessness daily. Its humbling and she really is my hero! She gets me through it!
Feel free to pm me anytime you like. I can empathise. Massive hugs. X
I feel for you, as I have been through the same with my now 13 yr old son. He was premature too, had 2 hernia operations as a tiny baby, eating problems from word go and one infection after another. Asthma was diagnosed when he was about one I think. He takes most of the meds you mention, plus Theophylline.
He's missed lots of school as well, but somehow has managed to do quite well so far. He's always loved books and reading and I think this has helped a lot. Me and my husband worry like mad about him, I feel like I am always on edge wondering what will happen next!
My son's asthma is usually triggered by colds, so he has extra vits (Vit C & D, multi vit, Sellenium) and I encourage him to wash his hands a lot. He's also allergic to pollen, dust mites and animals. I change his bedclothes twice a week and renew his pillows several times a year, also try to hoover throughout the house every day (don't always manage that!).
Sorry I cant be of more help. Good luck with the operation, I hope it helps.
I too can sympathise with you (and Emily and Angivere!). My son Louis who is nine was really diagnosed at about two (was always suffering with colds etc which gave him the most horrendous Whooping cough).
Louis is on various meds, pred, daily anti b's, singulair, seretide, cetirizine (whoops spelling??!!), ventolin and the obligatory calpol as and when!! and he shoul dbe taking Nasonex but this we find difficult to get him to take.
Like Angievere says it is a constant worry and I am always on ""red"" alert and at the first sign of a cold etc sends me into panic (although I do not show Louis). Louis on the other hand takes ot all in his stride and never sits still even when suffering (apart from when he has a really bad attack and then we know there is definately something wrong!).
I try to keep my sense of humour, ehich I find helps a lot but sometimes I could go and hise and just cry cry cry........ but fear turns into something else (?!) and you just carry on. I have been camped in my son's bedroom for the last four weeks as he has had a couple of really bad attacks and has been on constant meds. My poor husband is so understanding!!!
Keep positive and remember this site is a great place to just say how you feel and get support, we all know how we each feel, its a really great place to realise you are not alone in whatever you are feeling.
Big hugs
Serenity xx
You can also see that due to tiredness my typing isn't as good as it could be, so please excuse the typo errors (and to think I once was an audio typist!!!! tee hee)
Serenity - your advice and comments are spot on! I meant to add in my post that this forum is very good and I have picked up a lot of tips. Knowing that you are not alone is also helpful and everyone understands what you are going through. xxx
Oh I so agree too! The fear of it all is all-consuming! I empathise with the 'red alert' feeling too!
I really don't know what I'd do without this site and the understanding that comes with it. If you haven't felt the fear as a parent as we have, then it must be soo hard to comprehend!
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