What next for my poor little girl?!

My gorgeous little girl was put on a maintenance dose of pred last month. It eased the daily symptoms she was getting of exercised induced asthma for example. Prior to this she could only walk 50m without becoming breathless. Since beig on daily pred she can walk further and sleep better without regular attacks. We thought things were sorted!!

Then two nights ago her symptoms returned with vengeance due to a cold. She is now on yet another high course of pred and antibs once again! (this happens approx every 4 weeks) I really thought we wouldn't face this regular attack thing since going on the maintenance pred!

Just want to know....what next?! What more can be done? She's only 2!! Can I ask for her to be referred on? She's under a resp cons at present who's fantastic I have to say. I don't want to offend her by asking for another opinion either! We live in the far tip of Cornwall so it's a long way to anywhere else!

I'm just sad as for the first time in her little life I thought we had control! Well, we did for a month! The longest ever! Now here we are with a simple cold and she can't do a thing without wheezing and struggling!

Any ideas??

Ps: she's on daily pred, pulmicort nebs twice daily, montelukast, serevent, atrovent, ventolin, omeprazole, cetirizine and gaviscon. And now antibs and higher pred!

14 Replies

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  • Oh Emily!

    You must be gutted to put it mildly I know I was for you when I saw your post. Sorry I don't have any ideas to offer, I can only be here for support if you want to email/text/ring.

    I hope Maddie comes through the cold quickly and you get more respite from the awful asthma symptoms. Thinking of you and sending a hug out to you.

    Clare Xx

  • Hi Emily, I dont have any suggestions for further treatment, just wanted to say please dont be too discouraged. You say that things were better for a month which was a big improvement. We have exactly the same. My son can have a good period and then catch a cold or 'viral infection' and go down again. BUT inbetween he is okish, and I think you will find the same with Maddie. The last cold didnt actually go on his chest which was also an improvement altho the 'viral infection' still kept him off school for nearly a week. It is terribly disappointing to have these lapses but hopefully Maddie will be getting a longer bit stronger in between bad episodes. xx

  • Hi Emily,

    I don't have any suggestions I'm afraid but hope your little girl is feeling much better again really soon. Fingers crossed she will soon be through this setback and you can regain control, hopefully for a longer period of time.

    Shy1 x

  • Hi Emily,

    I am so sorry that Maddie is unwell again.

    When Tom was Maddie's age every cold he had went straight on his chest and triggered his asthma. He had to go on steriods and antibotics as well as all of his other meds. As he has got older he seems to cope with cough and colds better and hopefully Maddie will do too.

    I know it is relentless, and i am thinking of you all.

    Vicky

  • Can the doctors give her something that helps to boost her immune system or will she have to just get older? My thoughts and prayers are with you both.

    Gill

  • Thank you so muchfor your replies. I've been really upset recently about maddie. Feel on egg shells again!

    I've spoken to cons re support for Maddies system but not really had much input. Hoping she will get stronger as she gets bigger but been told not to expect much better as my husband is so bad too.

    Yesterday her SATs went down to 90 but increased back to 97 with ventolin.

    Maddie wasn't as bad last night. Bad til midnight but settled from then on. We went to beach for the day today (she's often better by the coast) and Shes been brill with inhalers, breathless without. Now home in bed and the coughing has started. Sooo much congestion!!

    Hoping the pred is doing the job!!

    Thanks so much for all your love, support and care. It means the world. X

  • Hi Emily,

    Really sorry to hear things are back down again with Maddie (btw did your other daughter's asthma stabilise - remember you saying that had got a bit worse so hope is better now?)

    Not much useful I can offer I'm afraid, but I just wanted to say after seeing that they told you Maddie might not get better as she gets older as your husband has bad asthma - my grandfather had fairly bad asthma his whole life (probably not very severe by today's standards as he wouldn't have survived back then if really bad, but moderate/severe I think). He could be fine a lot of the time if he was careful but then a trigger like exercise would set him off. His son ie my uncle had bad asthma from a baby - time off school, adrenaline injections (think this was a precursor to nebs) as a regular feature when he got excited, did too much etc - though he did manage to lead a more or less normal life. Then when he was 14 apparently it just went away entirely.

    I realise Maddie's only 2 and teenage years seem a long long time away but thought I would say this anyway as an example of how asthma in the family doesn't always have to mean it will stick around forever or stay bad forever - my family is stuffed with asthmatics/people with eczema (my grandfather's mother had it as well) - and none of us seem to have had it in quite the same way, except that exercise is generally a trigger.

    Thinking of you and hope this is just a temporary bad spell!

  • From my journey ther are good and bad days with asthma. So if we cn help you in anyway we will. Glad she is had a good time at the beach. Hered praying the pred and other drugs help soon.

    Gill

  • Hi - I just wanted to say I know how you feel - my daughter is 8 but I am in the same position. However, we have been really lucky to be trialling a machine with the hope of the PCT funding it if we prove its success. My daughter is full of cold at the moment and her lung function is down but normally we would be in hospital by now. Since using the machine, she uses her inhaler far less and she actually sleeps all night. It stands above her bed and filters the air in her room and it is amazing. I think the company are trying desperately to get the PCTs to fund it but I am championing its cause as it has made such a difference (fingers crossed) to my daughter. Winter may be a different story but I am crossing my fingers!

    Hope things improve soon x

  • Jan1 - what is the machine called? Sounds great.

  • Wow, Im with Angie....what is the machine called Jan?? What is it aimed at helping? does it focus on allergy based asthma for example?

    How is everyone??

    Maddie has a cold at the moment and has now started up with her symptoms yet again. I guess we expected it but were hoping for the calm to continue. Fingers crossed it doesnt escalate to bad.

    We have had a few weeks with nil symptoms due to the maintenence pred! Its been a complete miracle. Weve gone from every single day and night giving her 10 puffs every few hours in order for her to just get by, to now only being (normally, without a cold) a few times a week!! With only a couple nights a week having to manage desperate breathing problems. Soo chuffed!!

    She still has difficulty walking far. I guess that really does zapp her energy and oxygen levels but on the whole things have improved.

    The prob we are facing now is that her sugar levels have gone haywire! She is drinking rediculous amounts of fluid and weeing constantly. I have to change the sheets every night as shes wet the bed and keep giving her drinks as she crieds for them in the night.

    We are waiting now for a glucose tolerence test to be sorted.

    The thing is, to me....she can breath! The sugar levels arent stopping her breathing! I know long term they need to be sorted but i seem to have a little girl at the min who can join in moderately with her peers!

    She starts preschool in Sept so they are having input as far as the aspiration goes.

    How is everyone else doing??

    Do think of you all.x

  • Hi

    It's called Airsonett/Protexo - think one of those is the make of the machine! My daughter has multiple allergies and brittle asthma and the doctors were concerned it is affecting her everyday life and nothing is really working. The machine filters the air in her room as she has a real problem with HDM and mould spores.

    x

  • Hi Jan1

    I have been trialling this. The filter needs changing every 6 months and I have been waiting for over a week for a new one to be delivered, the rep says it is an oversight and should have been delivered automatically before it ran out at 6 months, it has to come from Sweden so could take anything up to a week and the machine wont work once the filter is at its 6 month limit, just to let you know as your daughter seems to be responding so well. Fingers x the PCT will fund it for her.

  • glad to hear your lil one's breathing has improved :) thats fantastic :)

    long may this continue.

    any news on when the glucose tolerance test will be - this is prob side effect of the pred as it alters your blood sugar levels, grrr... same prob with me but hey, like you say at leat breathing more under control and thats the main thing!

    bet she cant wait for pre-school in sept, nor you :)

    good luck, and best wishes. hugs to u both and your family x x x

    x x x

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