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  1. #11
    Join Date
    Feb 2012
    Achievements:Topaz Star - 500 posts
    Quote Originally Posted by mummycrocker View Post
    Wow thanks, Liddybugs, they told me here and in Melbourne that there is nothing stronger that Sheri can take they said she has tried them all. She was on singulair over a year ago but after a few months we realised that this was why she was having nightmares and was self harming and very aggressive. She has had flixotide, singulair and Alvesco and like I said Pred doesn't help at all and like you said oxygen does as she is often low. Even at home she is normal at 95/96 and about half hour ago was 89 as she had been outside for a few minutes and I think cold air got to her even though I gave her ventloin before she went out. Took about 30 sprays in about 30 minutes to help her and now she at 93. We have asked and begged for oxygen at home and the Dr's say no bring her in and I try to explain that if she knows she is going to hospital she immediately gets worse. Where did you get oxygen from?? Oh and as far as the spacer I know what you mean with them wiggling around why giving it and I brought a nebuliser and dr's wont give me nebules as they say spacer is much better as they get more in and nebuliser lets too much out. I have been told this by Melbourne dr and also one in Brisbane... I have seen a few specialists and the one in Hobart we have seen before but over a year ago and I want his input now. I feel that when she is bad she is aspirating but this is extremely hard to prove or find....
    That is one of the portable oxygen tank websites you can buy off, they are not cheap, we were quoted up to $3k for one we ended up buying one for second hand for $400, but it's just peace of mind and the amount of times we have had to go to hospital or call an ambulance purely for oxygen, I think it will be good. Obviously of she doesn't improve with oxygen we will get medical help, but living so rural it's just nice to know we do have oxygen too.

    We were told the same thing, that space is better than a nebulizer, it's frustrating because that might be the case but dd won't take the spacer, she only takes it when her attack has gotten to the stage of her nearly passed out and she is trying to take breaths, she is wiped of energy by then so she can't thrash about and blow out the mouth full of puffer she just had.
    We were then told the nebulizer drugs are stronger, so who knows?
    I do know my grandmother has emphysema and was put on a nubulizer this year because one of the drugs that was stronger only came in the form of nebules.
    The flixotide preventative has the jr but it also has stronger ones, in most preventatives there is different strengths, I use plumicort for myself and I know during this winter I needed the next dose up and it helped a lot.
    So I didn't need to change my preventative, just move up to a higher one.
    I wonder if this is something they can do for your daughter?

    Just a tip, when we have to give the reliever puffer, especially if it's more than the 4 sprays I give dd a dose of panadol, I've just found the ventolin causes headaches, shakes, body aches etc for her, once we started doing that she seemed to have less side effects and moodiness after having the ventolin, large doses of ventolin also causes the heart rate to speed up, when this happens dd will get the shakes really bad and will freak out, I've found the panadol also just seems to calm her a bit, I don't know why, but I've noticed she seems to be more relaxed.

    Is your daughter quite congested?
    If so I highly recommend the durotuss, it's for 6 months + and tastes like butter menthols
    It's natural and can be used every 4 hours, we started yesterday and it's been amazing at clearing up her chest.
    We have used it in the past with the same results.
    Also Vicks on the feet with socks, I put about 2 cap fills of vaporizer fluid in a bowl of hot water in her room at night to help with her chest, if we don't do that she will wake her and her chest will be full of junk and she will cough for a good hour trying to bring it all up.
    Dd also wears a scarf and I've taught her to pull it up over her mouth and nose when we are out side, especially on windy days, it seems to help with her air ways.
    Those are just some things we have found to help.

    You have most likely seen this before but here is a list of all the preventatives available in Australia and a bit about them

    I really hope you gets some answers soon, I always feel more confused after seeing dd's doctor or when we leave the hospital.
    I'm constantly on google looking at different things and writing it down to talk to the dr about it all when we go see her.

    Here is a photo of the durotuss we have been using too.
    ImageUploadedByThe Bub Hub1405831024.436998.jpg

  2. The Following User Says Thank You to Liddybugs For This Useful Post:

    mummycrocker  (20-07-2014)


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