3 year old struggling to get the right care

My daughter was diagnosed at the age of 20mths with a persistent cough and occasional wheeze/asthmatic. She suffered with a constant choking cough from the age of 3mths (always worse at night to be told her chest was clear when we visited GP in the day)

Since her diagnosis she has been on Montelukast (stopped due to adverse behavioural reaction), salbutamol, Clenil 50 (200mg per day), upped to Clenil 100, dropped back down to Clenil 50 and Prednisolone.

This winter we have thankfully avoided hospital admissions but she has had 5-6 courses of Prednisolone.

We saw the consultant in January who told me to see the GP and ask about a long acting reliever (Serevent or seretide) if Evie's symptoms persisted in this way and also she would agree to allergy tests.

We've seen a brilliant GP who has basically told me that I was fobbed off by the consultant because due to my daughters age only a consultant can prescribe these inhalers because they are unlicensed for an under 5. The GP wrote to the consultant asking for her advice and to prescribe the above. The response was no, I don't feel Evie needs them, I would recommend putting her on Montelukast. Both the GP and myself were so cross with this response, we can't put her back on Montelukast, she had a reaction to it!

The GP is now faxing the hospital demanding an urgent appointment for us with the consultant (we weren't meant to see her until the summer) so that we can hopefully get Evie's inhalers adjusted and get her off the Prednisolone!

I'm just so cross that we have to fight so hard for the right care for her! Does anyone else struggle with this with an under 5?

4 Replies

  • This is an awful response from the consultant! We had a hard time getting our son the right treatments until he got referred but his consultant is brilliant and although our 5 yr old son is still not totally stable his consultant sees him regularly (every 3 months) and adjusts medication accordingly, really taking time to listen to our concerns etc.

    Your GP is correct, under 5s should only be prescribed Seretide by a consultant (our son has been on it since he was 3) so for her to try and fob you off back to your GP like that is not good at all. Can you ask to be referred to a different consultant? Is she a respiratory paediatric consultant? If she isn't specialised in respiratory health that could explain why she acted this way.

    I hope you manage to get the right treatment/referral, don't let them tell you they can't help as there will be someone who can.

    Good luck,

    Rebecca x

  • Thank-you for your reply Rebecca, I must admit I am shocked by the consultants response letter to the GP, she has always been so helpful in previous appointments. I don't know why she has had this sudden turn around and is now saying no to everything!

    I wonder if she has taken offence to being told that a drug she prescribed gave our daughter a behavioural adverse reaction, I also sometimes get the feeling that she feels because Evie hasn't been admitted to hospital this winter that I make up her symptoms?! Every time we see her she tells me I'm doing a great job of keeping her at home.

    But as the GP said the only reason we are at home still is because Evie has had 5 lots of Prednisolone this winter, antibiotics and had her inhaled steroids increased then reduced again. The GP said your daughter is asthmatic, if she wasn't then the Prednisolone wouldn't work! I also took a video recording of Evie's asthma cough and the GP was very understanding.

    I'm not sure if she is just a respiratory paeditrician or a general but she has always seemed knowledgable and helpful until recently when Evie has worsened. I'm going to wait until next week and if I haven't heard anything then I will chase the appointment. I also had a chat with my husband about my concerns and he has agreed to come to the appointment with me this time, he is extremely concerned that they want to re prescribe the Montelukast!

    Thanks for your help

    Mel xx

  • Hi

    My son was discharged from the consultant in January. He is 2 1/2. Since then he has had 5 courses of prednisilone. He daily takes 2 blue and 2 brown puffs and montelukast. I'm trying to request for him to be referred back to the consultant but because he hasn't been actually admitted they won't have it. He hasn't been admitted because I'm quick to deal with his symptoms and start 10 puffs every 4 hours pronto, also the prednisilone does sort him out. I'm worried about the amount of steroids he's had but dont feel like I have anywhere else to go with this?!?

  • Hi Eviesmummy

    Like you I had a rather frustrating time with my sons consultant, he also kept pushing the montelukast even though we had previously tried it and it caused nightmares and behavior issues! I was getting very frustrated and fed up with people saying to me you really need to get it sorted he can't go on like this when I was trying so hard but my appointments didn't seem to get me anywhere! In the end I rang the helpline on the site and spoke to a wonderful asthma nurse and asked her what I should be asking for at my next appointment, tests, medication etc.....

    I then went armed with questions which I wrote down ( don't know about you but I often feel intimidated and forget once I'm with the cons) which has eventually resulted in us having good control of my sons asthma and dare I say it two years down the line without a hospital admission and only a few courses of pred!

    I would really recommend a chat with the asthma nurses before your next appointment.

    I hope you get things sorted, please keep us updated.

    Clare x

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